FALLON MIRSKY

Please help SAVE MY LIFE!

August 20, 2014

10550008_10101241323315110_1859173337889895828_oHi-

Well… I know it has been awhile, but I figured that I would write a bit and say what has been happening and what is in the mix. Gosh… there is so much happening lately that my head is literally spinning! I don’t know if I am coming or going… and I mean that literally. Everything is so up in the air.

Things are continuing to worsen. I don’t know honestly what is going to happen. I just know one thing… I am definitely running out of time and I desperately need help ASAP. I am rapidly deteriorating and it is getting to the point where my deteriorating is starting to snowball out of control. We really need to stop it or if nothing else… at least slows it down!!

The doctors honestly don’t know how I am still living. To tell you the truth, they don’t even know how I made it this far. I don’t even know the answer to that. The doctors literally call me a medical miracle because there is really no possible way that I should be “living” right now. I am literally less than 70 pounds, my bloods are horrible, I have poisons running through my blood stream, my organs are failing, I can’t eat or drink, etc. My blood pressure is basically also nonexistent as it only reads like 70/40 and I have severe bradycardia with a heart rate of in the 40s.  Yet, I am still alive! I tell the doctors that I defying all odds because I have an excellent support system. It is people like you that help me get through this. If it weren’t for people like you, I definitely wouldn’t have made it this far and have been able to keep going. Thank you for helping to keep going and to pushing onward.

10467107_10101241325041650_3208290591265744687_oBut the truth is that I really don’t know how much longer I can hold on. I am really sick and deteriorating faster than ever. I desperately need help but unfortunately it is dependent on so many factors. The ability to get better goes way beyond just being in my own hands. I desperately need the help of others. Unfortunately so much of getting better depends on money because I need surgeries, treatments, procedures, medications, etc. that we just can’t pay for on our own. I desperately need funds donated or fundraisers held to help me raise the much-needed money so that I can get these lifesaving measures before it is too late. Therefore, if you can please help me in any way possible… whether it is by spreading the word of my website to donate (www.gofundme.com/FallonMirsky), fundraise, etc. I would really appreciate. If you have any questions or suggestions, please don’t hesitate to contact me at Femirsky@gmail.com.

I have been thinking of all different ways to find ways to raise money, but unfortunately I am all out of ideas. If only I could have something go “viral” like the fundraiser for ALS is doing with the “icewater” challenge. I only wish I could have something like that happen to me. To be honest, I am feeling a little down about that fundraiser for ALS too. I would have loved to be part of it, but unfortunately due to my illness, I am not able to partake in the icewater challenge even if someone “challenges” me. I am too hypersensitive and I wouldn’t be able to tolerate water (especially coldwater) being poured over me. I only wish I was normal like other people.

As I told you in previous messages, I was going to the Cleveland Clinic to have my colon taken out and to have a multivisceral transplant. My GI system is completely “dead” and unfortunately, I have no other choice but to have my colon taken out and to have the transplant. Not only is nothing passing through my system, but I have all these toxins also pouring out of my GI system and entering my bloodstream. I am literally being intoxicated and poisoned, as it is going into all my organs and even my brain. I really need to handle this because not only is it causing me not to eat because there is no movement in my GI system and therefore I look like an emaciated skeleton, but it is literally poisoning my entire body.

There, the colon has to be removed as soon as possible and then once it is removed, it will determine how FAST and urgent the transplant will have to occur. If the toxins and poisons are mainly just coming from the colon, then I will have more time because that affected organ will have been removed. Yet, if they find that the small intestines are badly affected, they will have to jump on it immediately go for the transplant sooner rather than later. This is very major and dangerous surgery. In fact these surgeries are basically the most dangerous that a person can have. It is the most dangerous transplant by far, as I will need a new stomach, small and large intestine, pancreas, liver and spleen. Only 6 hospitals in the country perform this crucial and life-threatening operation… Cleveland Clinic being one of them! However, since I will need to have so many surgeries procedures and since I will need to have to have them take place in Cleveland, Ohio, I will need all the help I can get from others in getting funds to pay for all this. After all, if I don’t have the funds, I won’t be able to get these procedures because no one is going to do any of this stuff for ‘free’ and I still have to worry about traveling and living expenses while I am there especially since I will be there for awhile and my father will not be able to work since he will have to be my caretaker while I am there. So we will have no money being made and brought into the family.

I was all set to start my journey into having these surgeries this upcoming week. The doctors also wanted to work with my lungs because I am literally aspirating and drowning in my fluids and they want to make them strong and clean for surgery. I literally just got back from Cleveland Clinic a few days ago and it was decided that it was urgent that all this stuff was needed immediately. Yet, I still needed to have one more operation before I could have the colon taken out. I would need to have heart surgery and surgery to put central lines and ports in. This way they would have central access to me during the operation as well as when I am not in the operation.

The doctors know how “sick” I am and they really want to get some central lines into me. They want to put these central lines in me not only to provide central access for during the operation, but I desperately need it because they want to use it to give me nutrients, give and draw blood, give meds, etc. The doctors don’t want to keep sticking me with needles anymore because not only am I super sensitive and it is extremely painful, but they are scared that with all the needlesticks that I am going to get an infection and that is the last thing that we need right now. If I were to get an infection, it would be a disaster because my body is so depleted and knocked down that I would easily die. I am glad though that they will be able to give me meds though through the line because I take so many pills daily that I can barely swallow them. I take over 50 pills daily and it is literally impossible to swallow them. In fact, they are always getting stuck in my throat because I don’t even have the “swallowing” mechanism in my esophagus. There are so many times that doctors have literally had to go in and actually remove the pills because they have just stayed in the esophagus. In addition, pills don’t even get dissolved anymore. I can literally take pills and then 12 hours later when I throw up, I can throw them up whole, which means they were not absorbed!! So at least by having these lines I will be able to have an easier time taking them and my body will definitely be able to absorb them.

The doctors are also planning on trying to build me up a bit for the surgery through the central lines as well. Since I weigh less than 70 lbs., I am really in no place to have surgery. They are really scared that I won’t be able to recover and heal. I am really a high-risk to have surgery and therefore, they want to try to give me TPN (total parental nutrition) to try to build me up. I have had TPN in the past and have failed it. However, they are going to try it again through these central lines in hope that it will make a difference. However, TPN only is good temporarily. You can’t live on TPN forever.

As of right now, the doctors feel that the only way to “buy” time is through TPN. The doctors feel that I will never be able to gain weight or ever become normal weight again… even with the colon coming out. They said that I am so far behind that it will literally be impossible to ever weigh “normal” again. They would love for me to weigh in the 90s and even 100 lbs. But they doubt that is ever going to happen unless I get that transplant. But in the meantime, they say that TPN is my only lifeline that will buy me time. Yet, it is only temporary and therefore, I only have a short amount of time to have it and therefore, we have to have the colon ready to come out and the transplant ready to happen so that whatever the TPN helps I won’t lose when we have to stop it. After all, central lines are really dangerous because each year 80,000 central line bloodstream infections occur.

I have a choice of which type of line I want. I still haven’t made my decision which one I prefer because I want one that will not only work well, but I want one that will “look good” as well. I know I shouldn’t be worried about the “looks” of something, but it is important to me. I still want to look as “normal” as possible and I don’t want to look sick. No matter how sick I am, I still wake up every day and get dressed as if I am not sick. I get fully dressed with makeup and nice clothing just as a normal person would because I truly believe that if you “look good” then you will “feel good.” That is why when I go out, people don’t necessarily realize how truly sick I am because I mask it. I mask it both physically and emotionally. Yet behind that façade is a person who is dying inside and who desperately needs help. I am crying in the inside, but I won’t let others see my tears.

I have a choice between 3 lines. The first line is the one that goes into the jugular vein and extends to the heart (specifically the superior or inferior vena cavas). The second line is called a “Hickman” line. This line goes into the subclavicle and goes into the heart that way. Those two lines are much more intensive than the third. The third line is in the arm, which is called a PICC line. It is placed into a vein and travels into the heart and into the vena cava until it reaches the right atrium. All these central lines are risky, as the Centers for Disease Control and Prevention say that the prevalence of central line-associated bloodstream infections results in about 62,000 deaths per year.

So I am supposed to head to Cleveland on Sunday to have the heart surgery and to have one of the above central lines placed in me. The doctors wanted to have this done ASAP because like I said before, I am really deteriorating and they wanted to make sure that they had central access to me in case of an emergency. They also wanted to build me up for the surgery to have the colon taken out, which needed to happen ASAP because the colon was literally poisoning me and causing me to become intoxicated! The colon removal is scheduled for September 17th. The doctors already said I will have to be there for 14 days prior to prepare me for the surgery, then I will be hospitalized for about 10 days after the surgery, and then I will have to remain in Cleveland for another week at least to make sure that everything is ok before they send me home. Then I will have to worry about the transplant afterwards. So we don’t know how on earth we are going to do this as well because not only are we having a difficult time paying for the actual procedures and traveling expenses, but my dad won’t be working all this time and we won’t be having an income. I am so worried that the business that my dad owns will have to end up being close down and something will happen to our house at home because there will be no money coming in to pay the pills. That is why I am pleading for help. I know I sound like a “broken record,” but it is so important!

However, we don’t know what is going to happen now with the surgery on Monday to have the lines placed at the Cleveland Clinic because I have a massive infection in my jaw and teeth that needs to be taken care of. We knew that I had a problem on the right side of my mouth, but unfortunately, the other day the left side of my mouth caved in as well. I have severe osteonecrosis and therefore, the bone is dying. So, I desperately need to have surgery done ASAP to take care of this infection and also to repair the teeth and bone that has caved in.

I knew that the other side of my mouth was going to cave. I felt something really strange happening the day before. Then when the bones and the teeth fell out, it was all black and that proved it was all ‘dead’!

So we are not sure exactly what is going to happen. I am waiting to hear when the surgery will be scheduled for my mouth. The surgery for my mouth will be done here and I am really scared because I don’t know how we are going to afford it. The last time this happened, it ended up costing us nearly $7,000. Even though the hospital was covered by the insurance, the surgeon was not and the only ones that perform this kind of surgery are not covered. So I have no choice but to pay out-of-pocket for this surgery because there aren’t other surgeons that are “covered” that do this surgery. To think now that it is so much worse too. I hate to think how much this is going to cost me.

I am hoping to hear sometime tomorrow about when the surgery for my mouth will be. I will then know then what will be happening with the upcoming surgeries at the Cleveland Clinic. After all, these surgeries at the Clinic are really crucial and really important that it happens ASAP.

However, even if the surgery is cancelled in Cleveland next week to do the heart surgery and put the ports in, I will still be heading there on Wednesday because we have a meeting with docs on Thursday. We had this appointments scheduled for 2 months and there is no way that we are going to miss it. It is crucial also that we see this doctor because this is the doctor who will be helping to manage my neurological condition and the pain that I am having from it. After all, I suffer 24/7 from the most severe pain that you can imagine. So it appears either way that I will be in Cleveland next week. It just depends when we are going and how long we will be down there for.

So…. As you can see there is so much happening. I am still going for surgery every Friday to be ‘cleaned’ out for my intestines. I desperately need this because not only does it make me more comfortable, but it also is removing the toxins and poisons that are spreading throughout my body and killing me. It is sad that I look forward to Fridays because of this surgery. But, it really does help because otherwise I walk around feeling and looking like I am 9 months pregnant and ready to give birth.

At least I have a ketamine coma in the morning. With everything that is happening, I am so relieved that I have it because at least I will be out of my misery for a bit. If I could live in a ketamine coma forever until I was fixed, I probably would. But unfortunately that isn’t possible. I desperately need to get to Mexico so that I can get the amount of ketamine that I need that can actually potentially “cure” me. Even though I can get ketamine in the US, I can’t get the amount that I really need because it is not FDA approved. But like always… everything comes with a cost and therefore I can’t have it done because it costs way too much money, as it costs over $100,000. To think… there is a treatment out there that can potentially “Cure” me and I can’t get it because I can’t afford it. It really hurts to know that. It is like having holding a bone in front of a dog and not letting him have it. 

So that appears all that is happening. I will let you know more when I know more. Just wanted to write and let you know all that is happening so far. I can’t believe that the summer is basically over. It really hasn’t been a warm summer. I hope that doesn’t mean that it is going to be a bad winter. I can’t stand a cold winter. As it is the winter basically just left a little whole ago; it was the longest winter ever.

So many upcoming plans are going to be happening besides the surgeries. I have my dad’s birthday coming up as well as my dog’s birthday. My dog will be turning 9 and my dad will be 61. I really want to make my dad’s birthday as special as can be because he deserves it. He is the ultimate dad!! He is not only my dad, but my “best friend,” superman, and knight and shining armor!! I definitely would not have made it this far without him.

Thanks again for all your support. Until next time!

 

Love,
Fallon

 

 

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August 15, 2014

10548690_10101239971753650_3411997899923871008_oHey-

Well… I am officially home!! It has been a long two days, but I am officially home. However, I am having to go back to Cleveland on Sunday, August 24th, so honestly I don’t know why I should even bother unpacking. I am just going to enjoy this week at home. I am going to especially enjoy it because who knows what is going to happen when I go back to Cleveland. A lot has changed in plans! I just hope my body holds up for everything now!

Tomorrow is my usual Friday surgery. Going to get my intestines cleaned out because my entire GI system is paralyzed and therefore, nothing moves through it. I am getting intoxicated as a result of this and it is very likely that I can die from all these poisons spilling over into my bloodstream, as it is poisoning my blood, organs and even my brain. However, usually I am excited to go for this surgery and say “TGIF” because not only is it saving my life by trying to remove as much toxins as possible, but it is also making me more comfortable. Since nothing really moves in my GI system, I get so bloated and my abdomen gets so distended. I literally look like I am 9 months pregnant. I walk around the house waiting to either “give birth” or for someone to pop me!

In addition to the cleaning out of my intestines though, I also have to have the surgeons go down my esophagus and go into my stomach to do some biopsies. It’s all needed for the upcoming surgeries that are taking place in Cleveland. Hopefully everything will go ok, but I am scared because it is a double whammy tomorrow and my body is weakened already and has just taken a beating from this trip to Cleveland. Traveling is really hard on me and I literally just got home. I didn’t even have to time to rest and gain my strength.

Well… as I was saying, there has been a change of plans!! I was originally scheduled to have my colon taken out on August 25th, but due to how sick I am, there has been a change of plans. It just isn’t possible to do the surgery right now before some other surgeries take place first. It turns out that when I do have the colon removed, I will have to be hospitalized 14 days prior because of how sick I am. I can’t believe how long I will have to be in the hospital for… just to have my colon out. It will be at least 14 days prior, at least a 10 days in the hospital, and then I have to remain in Cleveland for at least another week to make sure that everything is OK and I am able to go home. However, after going for some more tests and meeting with the team, it was decided that I might be better going about it a different way instead of just jumping in and having the colon surgery. They thought I should have some other surgeries and procedures prior and then have it. So that is what we are doing.

This also scares me that I will have to spend so much time there because we don’t have the funds to do that. I know I sound like a broken record already and I know I am begging and pleading, but please help. We desperately are in need of help. We desperately need donations because we can’t afford treatment to save my life without your help. As it is, I already received a phone call from the Cleveland Clinic asking me to pay for the copayments and everything to the upcoming surgeries that I will be having and I didn’t even have them. They said that since I didn’t have the money today, I will have to pay it the day of surgery. Can you imagine?

I hate knowing that my life literally rests in the hands of others, but I am hoping that people will do what is right and help me! Just remember that I am appreciative of any donation and no donation is ever too small. I only wish there was a way to get on television or in the paper because this way I can maybe get more awareness to my story which will bring in more funds.                                                                    

It turns out that when we go down on August 24th, it will be for other surgeries and procedures that are very important. To begin with, I will need to have ports and lines put into me. Not only do I need them for the actual surgeries for the transplant and for the removal of the colon, but also I need it to actually buy me time!

I will be having surgery on my heart, veins, and arteries to put these lines and ports in. However, I have to make a decision by tomorrow as to which type of port and line I want to use because I have an option of 3 different ways to go. They are going to use these lines to have emergency access to my heart, give me fluids, give me blood, take my bloods, give me medications, give me food, etc. With having these lines, I won’t have to worry about being poked all the time to get blood anymore. I also won’t have to worry about swallowing pills so much because they can be given through the lines, which will make it easier on me as well. It also means that I can be given more potent meds because intravenous meds are always stronger since they go straight into the bloodstream. But a big plus and hope is that these lines will be able to supply nourishment to me.

I always thought that when the colon came out that I would be able to gain weight and hopefully be able to get back to a somewhat normal weight. However, I was told that the chances of that happening is basically nil. The doctors said that I am so far behind that I probably won’t ever be “normal” weight again. The point of the colon coming out is to make me “more comfortable” and to help buy me time until I have the actual transplant.

The real cure to this entire puzzle is to have the transplant. If I had the transplant, then I would be able to most likely gain the missing weight that I am missing and be more of a normal weight. I was kind of upset about this because I was hoping that the colon coming out would help me be able to eat again and able to gain the missing weight. After all, I hate the way I look and wish that I would be more normal looking. I look like an emaciated skeleton.

The doctors did say that the key to the puzzle and to keeping me alive is TPN. They said that I desperately need this in order to keep me alive and to hopefully buy me the most time. TPN is “total parenteral nutrition” and it is dripped through those lines and ports that they are placing into my heart. However, TPN is extremely dangerous and you can’t be on it for long. Therefore, it is really important that I get the transplant as soon as possible so that I can get off the TPN.

TPN is very risky. You can have mechanical complications from the catheters that will result in pneumothorax, vascular injury with hemothorax, brachial plexus injury or cardiac arrhythmia. However, venous thrombosis is one of the two most common problems that occur after central venous access is established. The other is infection. Venous thrombosis is associated with significant morbidity rates.

Having TPN is not a cure. It is only a “band aid” to help buy my some time until they figure something to work. Yet, I have had TPN before a couple of times and I have failed it. So we are not sure if it is even going to work this time around. We are hoping that it will though.

I have to decide which type of line I want to place into me. We are hoping that the TPN will work through these lines, but even if it doesn’t we still need it for other reasons. There are 3 choices that I have. I have a choice of a line that goes through the heart and jugular vein, one that goes through the sub clavicle and the vena cava, and then one that is called the PICC and that goes through the arm and then into the heart through the vena cava. Each comes with their own plus and minus. I am really tending to think I am leaning towards the PICC because it comes out of the arm and looks nicer, but if I go with the PICC, it will mean that I will have to have another line put into me such as a line that goes through the jugular and into the heart because this PICC line won’t be sufficient. But that is ok because it will only be there for the time I am having the surgery.  

In addition to this surgery, I am also going to have surgery to “clean” me out. I have lots of toxins in my system since my colon and GI system is paralyzed and even though I go every Friday for the surgery to “clean” it out, they are going to do a more invasive job because they are going to do it under general anesthesia.

Another surgery that will also be having is a surgery to deal with the infection and such that is lurking in my mouth. I have been on antibiotics and I have been continuing to suffer. I desperately need to have lots of surgery in my mouth and this way they will do it then.

 Finally, I had a CT scan during this past trip to the Cleveland clinic and it appeared that I am drowning in my fluids. So I will also be having my lungs cleaned out as well.

10560413_10101238797412040_7385412621066057572_oAt least when I met with the doctors and the anesthesiology team when I went to Cleveland, I got to meet with the actual “team” that would be in the room during the operation. Usually they don’t know the anesthesiologist who will be on the case until the last minute. However, I was fortunate enough to have the anesthesiologist say that he was going to take the case because of how difficult I am and how he met with me and knows the case and such. So I am really glad because I really liked him and felt comfortable with him being there.

So that appears all that is going on. Not to cut it short, but I am not really feeling well and I am having to get ready to leave for the surgery today. My right arm still hasn’t officially “woken” up and so I am still battling a sought of sleeping arm. Never a dull moment.

Thanks again for all your continued support and encouragement. I would definitely have not made it this far without you.

 Love,

Fallon

 

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August 13, 2014

10582887_10101238373621320_3675911024816906730_o

Hey-

Well I am officially in Cleveland! I finally made it here! What a day it has been. I can’t believe all that has happened today because my life is like a soap opera… never a dull moment. From the moment we left the house to start this trip… nothing went right!

I should have realized that today was going to be a bad day from when we first began our trip. Right from the beginning it seemed like this trip was doomed. We basically just made our plane and we are so lucky that we did because we couldn’t afford to miss it. We had appointments scheduled in Cleveland today and therefore, it was imperative that we made the plane because the next flight afterwards would have made us miss all our appointments. We hit absolutely no traffic whatsoever to the airport. However, just as we were approaching the airport, there was so much traffic because not only were there was emergency vehicles blocking off lanes so that they could take care of a car breaking down, but of course everyone passing in their cars had to stop and look! The way that there were emergency vehicles blinking and people were stopping and looking… you would think there was a huge accident or something. But guess what? There was really nothing going on. It just appeared that a car broke down or something. In fact, when we were at the skycap checking in our suitcases, everyone was even talking about what on earth that “hold up” was. But you know “New Yorkers”… everyone has to look if they see blinking lights! But thankfully we made the plane!!

What a trip we had though. Between the traveling, the massive infection that I am currently suffering from, and then my overall condition… I didn’t handle this trip to Cleveland very well. My disease really stirred up and my body really was shutting down on me. Even when we got to Cleveland, the impact that the traveling took on me was enormous. My dad could barely keep me awake. When we spoke to the doctors, the doctor said that it is because I am getting so much worse and I have all those poisons and toxins in my bloodstream and organs that are further complicating things. All those poisons and toxins are literally killing me and that is why I am in such need of having my colon taken out and of the transplant. I am weakening so much and I can’t tolerate anything stressing out my body… even a trip on a plane to Cleveland.

When we got to Cleveland, I really didn’t have time to rest. I couldn’t even open the two boxes that the front desk said that I had delivered for me earlier. Had to get straight over to the hospital. Thank goodness though that the hospital is only literally next-door to the hotel. In fact, if you think of the letter “I” the top and bottom of the “I” is actually the main hospital and all doctors’ offices. The middle part, which is the part that connects the two hospitals together, is the hotel. If you don’t want to walk outside to the different buildings, they are interconnected by skywalks.

So even though I am not technically “admitted” into the hospital, I am still really in the hospital. The Cleveland Clinic is one of the BEST hospitals in the United States and they really don’t keep patients in the hospital. They really try to minimize the stay of each patient in the actual hospital. They much rather treat you on the outside. In addition, with my disease, the doctors rather keep me out of the main hospital and being officially admitted as much as possible. That is why even when I am “home” … doctors try to keep me out of the hospital as much as possible. They are afraid that I am going to catch an infection or something because I have no immune system and so susceptible everything. They also are afraid of how I will be treated because I can’t be treated like a typical patient. The slightest wrong move can cause havoc on me.

I really came this week to Cleveland to have the final tests performed, to have the pre-surgical testing, and to meet with the team to make the final preparations. I have to meet with anesthesiology and internal medicine to not only be ‘cleared’ for surgery, but they have to see how they are going to put the Central Line in me because I can’t have this massive surgery without it. It is way too risky of an operation in order not to have it in me because it is the Central Line that used to give medicines, fluids, nutrients, or bloods.

I had so many appointments today including a CT scan of my lungs and a stress test of my heart because the doctors needed to know how my heart would function during this operation. After all, this operation is extremely dangerous and will take a huge toll on my body. It is the most dangerous of all transplants and is so rare and dangerous that only 6 hospitals really do it in the United States. So they really needed to see how my heart would do.

However, like I said before I was really ill from the trip and from everything I was suffering from. No matter where I went, I had a difficult time staying awake and therefore, my dad was literally carrying me everywhere. I slept before each test, during each test, and after each test. It was horrible.

One test that to definitely go for was the Stress Test. However, they had to stop it right before they gave me the intravenous drug because they said it was too “dangerous” for me. They said that they couldn’t perform this particular stress test because they didn’t know the exact amount to give me since I am so underweight and ‘small.’ They didn’t want to ‘kill’ me and they told me that the slightest amount that went over the amount that was needed could do me great harm. So they said that I wouldn’t be able to have this particular test and a different one would be needed to be used.

However, the problem is that I am supposed to be leaving tomorrow afternoon to go home after I have my other appointments. Therefore, I really don’t have time to have any time extra to fit in any other tests. So I don’t know what is going to happen. I really can’t afford to stay longer than tomorrow because we aren’t prepared to stay longer, as we don’t have the funds, medication, clothes, etc. and therefore we cant miss our flight. But then again I don’t want to postpone the surgery either, which is supposed to taken place august 25th because we definitely cant afford for that to happen with all the poisons running through my body and the way it is shutting down. So I don’t know what is going to happen. I guess I will have to leave it up to the “team” tomorrow when I see them!

It really stunk not being able to have the stress test especially because not only did I really need this test for the upcoming surgery, but also I couldn’t eat or drink all day because of it. So I went the whole day without eating or drinking for nothing!! I really wanted something too… especially since I was on the plane and everything, but I couldn’t have anything. To think… all that suffering for nothing! When I was done with the stress test, the doctors felt so bad for making me starve for no reason that they were willing to get me anything and everything to eat.

Like I just said, I have an appointment in the morning with my “head” doc and I also have an appt with interventional radiology. So we will see what will happen at this point.

To complicate matters more, my right hand is kind of “dead” and won’t wake up. I have gotten this before but it has always been occurring to my left arm and hand. The doctors don’t know what causes it and therefore, I get really scared because I don’t know how long it is going to last or if it is even going to get better. Fortunately the other times it has all improved, but you never know. All the times that this has occurred, I have woken up and it has felt like my hand has fallen asleep. Then I can’t wake it up and it is so numb and hard to move because it had fallen ‘asleep.’ It is almost like having a ‘dead’ hand. Then I get this tingly all throughout my hand like it is starting to wake up, but it just stays there like that… never getting better. In the past it has lasted a couple of days, but you never know if it will always be that way. I get so scared from it happening not to mention how debilitating it is because you can’t really use it like I need to.

In addition, we also don’t know if I am having a reaction to the antibiotic that I was given to combat the infection that I have. I noticed some red marks on my neck and shoulders this morning, but I thought it was just the way I was laying or maybe from rubbing it. However, when I looked in the mirror later on today, I saw that there was actually a rash going on. We don’t know how I got it or if it is actually related to the antibiotic. So we really don’t know what to do. We already know that this antibiotic makes me feel nauseous and such especially since it is such a high dose because the infection is so bad. They really have to knock this infection out because not only do I need to get rid of it for the upcoming surgery, but it can really severely cause a lot of problems and even potentially ‘kill’ me because I already have all those toxins, poisons, and bacteria running through my body from my failed GI system. So it is just making my body further weakened.

So I really had some day today!! It was really a tiring day and things were just not going well. Of course when I got back to the hotel, I still continued to ‘sleep’ and if it wasn’t for my dad waking me up at 7:30, I probably would have slept through the nite. However, my dad said that we had to go eat dinner and I had no choice. I pleaded with him to miss dinner tonight because I wasn’t feeling well, but of course I lost the battle because he insisted that I couldn’t afford to lose an ounce. So I was dragged to the restaurant to eat.

Just to finish up the wonderful day, we couldn’t even watch TV tonight. We ended up having a storm here in Cleveland that knocked out the satellites. My dad said to me “Better watch out that the power doesn’t go out too.” But I was like “Did you ever hear of backup generators?” So you know what he said? He was like “Maybe they don’t have!” I was like “I am sure that they do especially since they are a top-of-the-line hospital.

Oh yeah… just as expected when I got here my packages were here waiting for me. Dad couldn’t believe that I didn’t have them shipped to the house instead. But they are sooo cute. I keep cuddling with them. What a way to make my belly feel better.

Wanna hear something hilarious? We needed ice for our sodas and my oranges. So you know what my dad did? He went to the ice machine with a bag of ice on top of just filling up the regular ice bucket. He brought back so much ice that he emptied the entire machine. So me being my stupid self said to him “you better call the front desk and alert them to the fact that they have to refill the machine because its empty.” I was thinking that he should do that so that I could have my ice later because I knew I would need it. However, little did I know that all you had to do was ‘wait’ for the machine to make more? My dad was like “You don’t have to call… you just have to wait for the machine to make more!” I am so naïve!

To top everything off, there is a lot of press going on here since Robin Williams died. Apparently Robin Williams had 2 heart valves replaced here at the Cleveland Clinic and therefore, they are saying that this could have caused his death. They are saying it because according to the Clinic, “major heart surgery often leaves patients with depression, which can sometimes prevent you from leading a normal life.”

So that appears to be all that is happening. It’s going to be a busy day tomorrow (Wednesday). I just wanted to write a bit and let you know all that has occurred so far. I wonder what will be the outcome of the upcoming surgery because we are so close to having it done and yet we have all these complications. I know they won’t do the surgery unless the infection is definitely cleared up, but I am hoping that the scan won’t hold things up further. I also hope that they won’t have me make an additional trip here just for this scan because besides there is no time, I can’t afford it and it takes too much out of me. I get too sick from the traveling and I really can’t do it. I hope that the next time I come back here it is for the surgery.

Well… Thanks again for all your continued support and encouragement. Please continue to pray for me and I will let you know what happens! Thanks again for everything. I can’t tell you how much I appreciate all that everyone is doing!! Knowing that I have a “support team” really makes a HUGE difference in fighting this.

Love,

Fallon

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August 12, 2014

10296176_10101229093878000_4587876839072854262_oHi!

Well… I am writing to let you know that in a few hours I am off to Cleveland Clinic. I am only hoping and wishing that all goes well because I know that I have a long road ahead of me especially now. There is never a dull moment in my life. As if my life isn’t hectic enough, I was just thrown another bump in the road today that might have to result in the transplant being delayed. I am only hoping that it doesn’t though because I am literally running out of time. But you know MURPHY’S LAW? Well… it should be renamed to be FALLON’S LAW because anything that can go wrong will go wrong.

I can’t believe all that is happening! Never a dull moment in the life of “Fallon!” I am supposed to be leaving in a few hours and I am really not feeling well. I am sicker than ever because besides my usual illness, I just had emergency surgery today because I have a massive infection going on in my mouth and jaw.

I have been having some pain in my mouth, jaw, and teeth lately, but these past two days have really been horrible. It got to the point this morning that the pain was unbearable. For me to say that the pain was unbearable while on all my potent pain medications such as ketamine, dilaudid, methadone, morphine, etc., I wonder exactly how bad this pain actually is. This infection has to be MEGA if it was hurting me the way it was with all these meds. I really don’t complain that much when I am in pain because I suffer with pain 24/7. However, the pain that I was in this morning was so bad that I was hysterical. I knew that I needed help.

Thank goodness I went to the oral surgeon when I did. It turns out that I have a massive infection in my tooth and jaw. However, we had such a day dealing with it. Usually when I have to be worked on with something like this, I have to be under general anesthesia. Yet, we really didn’t have that as an option and all we could use was nitrous oxide and lots of novocaine. However, due to my condition, it was not helping me at all. They turned the gas all the way up and they gave me shot after shot. Even after 6 shots, they couldn’t get me numb. I was screaming while they tried to work on me. I felt so bad for my mom because she was the one trying to hold me down. I was in so much pain that I was literally holding her hands so tight that I was drawing blood. Her hands are all swollen now because of all that happened.

But like I said before thank goodness we went to the surgeon when I did because if I didn’t I probably would have died. The surgeon was on the phone constantly with the Cleveland Clinic because he of course needed their input since they are in charge of my condition and I am going to be undergoing massive surgery with them. The Cleveland Clinic said that with all the toxins and poisons going through my body because of my failed GI system and such, I am lucky that I am alive still.

Due to my failed GI system, I have all these toxins and bacteria leaking from my GI system (especially my colon) into my bloodstream and it is spreading to all my organs including my brain. As a result, it is literally poisoning my body and causing me to die. That is why I need the transplant surgery at the Cleveland Clinic as soon as possible. We have to stop these toxins from poisoning my body because it will end up killing me. That is the reason why my brain is “foggy” and why I am sleeping a lot.

So to have this active infection on top of being poisoned by this bacteria and toxins that were already occurring, I am in really bad shape. They immediately wanted to put me on high dose meds in order to help contain the infection. Yet, with all the meds that I am already taking, it was extremely difficult to do. I take over 50 pills daily and it was very difficult to find a drug that wouldn’t interact with the others. They also needed to give me pain meds as well, as the current pain meds that I was already taking weren’t cutting it. So the surgeon has been talking to all my doctors trying to figure everything out. What a problem!!

A bigger problem though is this infection and how close we are to transplant, as I am supposed to be going in the morning to Cleveland Clinic for pre-surgical testing and to finish meeting with everyone so that I can be prepped for the upcoming massive surgery on August 25th. At that date, they will be removing my colon. It is a massive operation, which will take over at least 10 hours to complete. However, after the colon is removed, all bets are off as to what will end up happening. They don’t know if the colon is the bulk of the reasons why my body is being poisoned or if it is another part of the GI system that is causing it. Depending which organ it is… it will determine how soon I will have to undergo the huge multivisceral transplant. But they were hoping that I would be able to get my colon removed and they would be able to wait a bit to have the transplant so that they can try to get me a bit stronger for the transplant because it is a very dangerous transplant to have. They are also hoping to be able to wait a bit so that they can ‘learn’ all that they can about their ‘enemy,’ which is my neurological disease and autonomic dysfunction.

Like I stated in the previous message, my doctor wants to know his ‘enemy’ before he transplants. He is an excellent surgeon and wants to be prepared for anything that could happen. Therefore, has sent out other doctors to do research on my illness and he is even calling other doctors who are knowledgeable out of retirement. Doctors say that he is like a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t let go or stop until he gets what he wants.

It is really important to know all that he can about my illness because this transplant is so very dangerous. In fact, it is the most dangerous transplant to have and only 6 hospitals in the country do it. I need a new stomach, small and large intestine, pancreas, and spleen. However, if they find that the toxins and poisons are coming from something else after the colon is removed, I will have to transplant immediately.

After speaking with the Cleveland Clinic, they said that I would not be able to have the transplant or even the massive operation that I am scheduled for to remove the colon at the end of August. This surgery is extremely dangerous as it is and they expect to have lots of complications already as well as an extremely difficult time recovering from it as it is… they don’t need further complications. So the surgery might be cancelled unless I can overcome this infection.

This infection is very serious that I have in my mouth. The problem is also that I don’t absorb medications like a normal person. So despite being on a high dose, we don’t know how much I am actually absorbing. I can literally take pills and then 12 hours later when I vomit, I can throw up the entire pill in its “whole” form so it isn’t dissolved. In addition, I am extremely hypertensive so that any “minor” problem is a “huge” problem. I am not like a regular patient, as everything in my life is so much magnified.

So we are keeping our fingers crossed that this infection will go away and not stand in the way of the surgery. It is just another bump that is added in the road along with the funding bump that we have to get over. But in the meantime, we are heading in the morning to Cleveland Clinic to finish everything so that we are all prepared for the upcoming surgery that will hopefully be taking place the last week of August… providing that there is no infection and we have the funds.

So our flight leaves in the morning and it will be a busy 48 hours. We have so many doctors to still meet because since my case is so complicated, it takes an entire team in the operating room to handle it. They literally are going to have a doctor in every specialty in the room. I am also going to be meeting interventional radiologists because even they will be needed to put a central line in me for this surgery.

Besides meeting with the docs, I am also having some final tests performed so that they are fully prepared. Besides the usual tests such as the CT scans and x-rays, I am also going to undergo a stress test so they can really test my heart out. They already told me that I am going to hate this test because it is probably going to cause the autonomic dysfunction to stir up. Gosh… sometimes I think the autonomic dysfunction is the worst part of the entire disease.

What stinks is that I can’t eat or drink absolutely anything before these tests and I will be flying on a plane! I don’t know how I am going to manage especially not drinking when I am going to be in the air. The tests aren’t until 2 PM and therefore, I am literally going the entire day without eating or drinking especially since I am going to be leaving for the airport at 4 AM. Gosh… I am going to be dying of thirst and hunger. Some might think it is no big deal because I can’t really ‘eat’ or ‘drink’ anyway. But it is a big deal for me because even though I really can’t eat or drink because swallowing is extremely difficult and I also vomit it back up, at least I get something into me. Now I can’t get ANYTHING into me. I always find that when you are told you can’t have something, you are always more thirsty and hungry than if you weren’t told you couldn’t have it.

10606517_10101235179617130_3653604106255619658_nSo we are off. Just wanted to let you know the latest! At least I know when I get there, my SNUFFLES will be there waiting for me. There is a white SNUFFLES being sent there thanks to my mom. Even though she can’t be there in person… she is sending me a bear so that I can always have something to hug. This way whenever I need a ‘hug’ from her, I can hug the bear.

I am in love with GUND bears and I am in the process of collecting all the different GUND SNUFFLES. I love the SNUFFLES because besides them being extra cute, they make such great “cuddlers”. With my stomach beign the way it is… they are in the perfect shape and are made in the perfect way to hold so that it helps with the stomach pain. I only wish I still had my original SNUFFLES. The SNUFFLES today is celebrating the 30 year anniversary.

10495122_10101229095195360_5675982325829722224_oIn addition, I wonder if I am going to see another one of those “waterbugs!” Gosh… I will never forget how I was walking out of the hotel when we were leaving for the airport and one of those things ran right in front of me. It scared me so much. I never saw a bug that big! Of course I had to take a picture of it and show my dad. My dad being the expert that he is in pest control told me immediately what it was!

I can just imagine how much this trip is going to cost this time. With all these doctor appointments and tests… I don’t know how we are going to afford it and then be able to come back about week later for the huge surgery, which will entail us being in Cleveland for at least 3 weeks. That is why it is imperative that I get as many donations as possible because we cannot afford it by ourselves.  So please continue to spread the word of my website at http://www.gofundme.com/FallonMirsky so that I can receive as many donations as possible.  Remember… no donation is ever too small.

Please continue to pray for me because I am going to need all the prayers and support to overcome this. I need to be stronger than ever because I have to beat this infection now too!

Thanks again for everything.

Love,
Fallon

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August 9, 2014

475519_10101228526974080_5778732194525628730_oHi-

I just figured I would write and let you know the absolute latest because I officially received notification from Cleveland that part one of the transplant is ready. Yup!! I received the call tonight!! I am so very nervous and I to be honest, I really don’t know what is going to happen because of course this means I need to get there ASAP and we don’t have the funds on hand. My head is literally spinning so fast around that I don’t know how to stop it. I am so scared. I am scared to have the surgery because I know how ‘massive’ this surgery is and scared not to have it done because I know that without it I will die.

I can’t believe the phone call finally came in tonight to come out to Cleveland for the first part of the transplant. I knew that it was ultimately going to happen, but I honestly didn’t think it was going to happen so fast. I mean, I didn’t expect it to happen so soon especially since I literally just got home from the Cleveland Clinic a few days ago. I guess this is what the doctors at the Cleveland Clinic meant when they said that what I was going through and having was “life threatening” and a very HUGE “emergency.”

When I had went to the Cleveland Clinic this past week, I had found out so much information… more information than I had ever known. I knew that I was sick before I went to the Clinic, but I never realized how ‘sick’ I really was until I went. When they explained everything to me, I finally understood everything that was happening in my body. There were even a lot of misunderstandings that were occurring in my disease and body because I went to doctors that were not as knowledgeable as the doctors that I am going to now in the Cleveland Clinic. Cleveland Clinic is absolutely one of the BEST hospitals in the country. From actually attending the hospital, there is no question in my mind why that is the case. The entire team of the hospital from the nurses to the staff to the doctors is completely unbelievable. They are so nice and knowledgeable. They don’t just treat you like another patient. They actually are about each and every patient. They know things about illnesses and such that no other places know about. Therefore, they take on cases that no other places will. No wonder it is the Cleveland Clinic that is known for ultimately saving people with life-threatening diseases. I only hope that I will be as fortunate.

When I went to see them a few days ago, I finally learned that it wasn’t the medicine that was making me so ‘tired.’ Besides all the pain that I have been suffering from that has been unbearable, I have been really tired lately and been sleeping a lot. I have also been having a feeling of my brain feeling a bit “cloudy” as I didn’t feel like I was thinking as clearly. A lot of doctors have been attributing all that to the medications that I have been taking, as I do take more medicine than anyone can believe. I take over 50 pills daily and it would certainly kill a horse. Doctors are even amazed that someone the size of me could withstand taking so much. But even taking this amount of drugs, it doesn’t even really have any affect on me. Therefore, I did find it strange that the meds were supposedly causing all this ‘tiredness’ and ‘cloudiness’ all of a sudden when I have been on them for such a long time. It just didn’t make sense. It wasn’t like we really changed anything. You know?

Well… it appears that due to my illness and severe gastroparesis, my organs have basically ‘died.’ My GI system doesn’t function any longer and in fact, I am being intoxicated and poisoned by it. It turns out that my colon is especially toxic and all the toxins are pouring over into my bloodstream and spreading to the rest of my body, which is causing my body to shut down and fail. The toxins are causing me to have cirrhosis of the liver and it is even going to my brain. That is why I am so tired and feeling so cloudy. As it is getting worse and worse, I am feeling worse and worse. The more it continues, the worse it will get and it will ultimately end in coma and in death. Therefore, I desperately need a transplant to get rid of these toxins before it is too late because they are poisoning me and will kill me. Yet, a transplant of the GI system is extremely dangerous. In fact, it is the most dangerous transplant you can have. Only like 6 hospitals in the country perform this operation. I need a new stomach, small and large intestine, spleen, liver, pancreas, etc.

However, since I have this autonomic dysfunction and also this neurological disease, we don’t really know how my body is going to function to the transplant either. Therefore, the surgeon is kind of hesitant to transplant me because he doesn’t really know and understand completely the “enemy.” Yet, he has told my dad and me “if I was his daughter, he would transplant me immediately.” Yet, he said, “since he doesn’t know the enemy completely, he wants to take it slow and do it in steps, as he learns as much as he can about how my body will react to the transplant and what exactly to do in terms of precautions because of how ‘sensitive’ and reactive my body is to everything that is done. “ As a result, he is going to be taking the colon out first because that appears to be the most toxic organ of the body at this time while he learns as much as he can about my illness.

Therefore, the first part of the transplant will be removal of the colon. I will just be missing the colon while we wait for the FULL transplant, which I will then receive the other organs. He will also be learning all that he can about my illness during this time. The doctor is doing tons of research. In fact, he is actually sending out other doctors to do research as well on my disease. He is calling all the top doctors in the world regarding my illness and even calling doctors that are in “retirement” out of retirement that might be familiar about my illness. The doctors all him a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t give up. I am only hoping that he doesn’t give up on me because I am so very sick.

The doctor is especially awaiting for one particular doctor to get back to him. I gave him a few doctors to contact that might be able to help him, but the doctor is particularly waiting for Dr. Schwartzman to call him. We are only hoping that my doctor, whose name is Dr. Kareem, will be able to contact him because he has retired this year. Dr. Schwartzman is supposed to be one of the top doctors in my neurological disease and was practicing at Hahnemann University in Pennsylvania. When you wanted to see him, you had to literally wait at least 2 years to see him because that was how long the waiting list was to see him. I had seen him, as he was my doctor as well and Dr. Schwartzman also confirmed when he had seen me that I was one of the worst cases that he has ever seen in his life. As he was also doing research in my illness, he also took my blood so that he can use me in his research. He had told me that “we may not necessarily be able to help you, but you may be able to help others in the future.” So… of course I had no objection of giving him my blood to study because I would do anything to help others and so that others wouldn’t have to have the same misfortune of suffering from the same miserable fate as me.

It turns out that Dr. Schwartzman had just retired this past summer. However, it turns out that it is essential that Dr. Kareem talk to Dr. Schwartzman because even though I have given him other doctors who might be able to help him, it is Dr. Schwartzman who actually did research and found a clear link to what is happening in my GI system to my neurological disease and autonomic dysfunction. He actually saw a linkage between the toxins and the intoxication that is occurring in my body to the neurological illness and autonomic dysfunction and therefore Dr. Kareem wants to know about this and ultimately what will happen when I am transplanted and everything. I knew that Dr. Schwartzman did research in my illness, but I never knew that he actually found a linkage in this. So I am only hoping and praying that Dr. Kareem will be able to speak with him because he can be a very important piece to the puzzle.

Dr. Schwartzman also knows and understands how my disease spreads. Abnormal signals cause change in neurons and causes the loss of magnesium blocks. This causes calcium to enter the cells. When this occurs, very bad stuff happens and the disease manifests and spreads. Dr. Schwartzman is a crucial piece to my illness because he discovered how important Ketamine is to be given during the surgery because it is the only medicine that will help keep the neurological disease and autonomic dysfunction at bay. It is an NMDA receptor that will block the disease from spreading.

But in the meantime, I need to definitely have the colon taken out, which is the first part of the transplant because I am literally dying. I am literally being poisoned and if it doesn’t come out, I will soon die because it is literally poisoning my entire system. However, we don’t know how my body will react. We don’t know if all the toxins and poisons are just coming mainly from the colon or if it is really coming from the other organs as well. If they take out the colon and they find that the toxins are coming from the other organs as well, they will have to then transplant immediately. So all bets are off between how much time they will have after they remove the colon and how much time they have for the rest of the transplant to occur. The doctors really have no idea how my body is going to react or what is going to happen after the colon is removed.

So I knew that the colon had to come out as soon as possible because I would die otherwise, but to be honest… I wasn’t expecting it to be so soon. I literally just got back from Cleveland a few days ago… not even a week and I am already getting the call to come back for the surgery. I am so scared. I am scared because I don’t know how on earth we are going to afford this. It is so very expensive and we don’t even have the funds to go back to Cleveland let alone stay in Cleveland for the surgery and have it. Even though the surgery is somewhat covered by the insurance plan, we still have copayments, deductibles, living expenses while we are there, traveling expenses, etc. I don’t know how we are going to do this especially since it isn’t just a matter of being there one day. Instead, we got the phone call that they want us back on Tuesday for appointments for pre-surgical testing, which will be taking place that day and on Wednesday. They will then allow me to go home and I will then return on Sunday, August 24th to have the massive operation. When I come for the operation, they want me there for about 3 weeks about. I don’t know how on earth we are going to afford it especially since my dad won’t be working during that entire time, which means no income at all.

Gosh… when I got the call today, they told me that they needed me the 12th for testing for the upcoming surgery. When they said that, I automatically thought that they meant September 12th. Little did I know that they meant August 12th, which is only literally in a few days. How on earth am I going to come up with the necessary funds, make the traveling arrangements, and get there in such a short amount of time. I hate Fridays because it always seems like all the big stuff happens on Fridays because you can’t do anything really on the weekends. I really can’t contact doctors or make plans or do anything until Monday and by then… it is literally too late because I have to really have all arrangements made by then since I have my first appointment on Tuesday afternoon. I have no idea what we are going to do. I am so scared but all I know is that we have to find a way of getting funds. That is the priority at this point because we need plane tickets, hotel arrangements, etc. Obviously they aren’t going to give me those for ‘free’ or because my name is “Fallon!”

So we are really scrambling looking for funds and hoping that we will receive some donations. They are so desperately needed. If you can please spread the word that I need to get to Cleveland for part one of this massive transplant surgery, I would really appreciate it. Of course my fundraising website is http://www.gofundme.com/FallonMirsky. NO donation is ever too small and all donations will be MUCH APPRECIATED!!

Speaking about this massive surgery, I am really really nervous. I spoke with the doctors today and I told them how nervous I am. I told them that I don’t doubt their credentials or their ‘ability’ but I am really scared about how my body is going to react and such especially since my body is so ‘sensitive’ and reacts to literally everything. I am especially scared because I know how dangerous this surgery is and how it is really life threatening. All I hear from all my other doctors and other doctors who my dad speaks to is how “massive” this surgery is. In fact, my dad’s cardiologist even told my dad “to prepare just in case things go in the other direction and things don’t turn out so good.”

It is so dangerous that they are putting lines in me everywhere. I told the doctors that I have had surgeries before and I never had to have lines put in me like they are doing now. But the doctors said that this has to be done because I never had surgery like I am having now. They keep saying how “This is the most ‘massive’ surgery I have ever had!” I keep saying that if I hear the word “massive” one more time I think I am going to go through the wall. I can’t hear it anymore. Therefore, they are going to be putting in central lines and everything. Thank goodness I will be technically ‘asleep’ when they do this because this is not the most pleasant thing to occur.

A central line is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood over a long period of time, usually several weeks or more. They are hopefully going to be able to use just a catheter in the arm that will be threaded into a vein and go until it reaches a large vein near the heart. They are definitely going to need it for ‘access’ for medicines and fluids, but they are also going to try to give me TPN as well through this. I have had TPN multiple times in the past, but I have failed it. However, I never had TPN done at the Cleveland Clinic and I am not working with Dr. Steiger, who happens to be the founding father of TPN. So, we are going to try it again since he happens to be the most knowledgeable and best doctor in getting TPN to work. The worst thing that could occur is that it doesn’t work, but at least we will give it a shot.

The doctors would love to be able to have it work because of how small and fragile I am. They would love to give me nutrients before the surgery and afterwards because it would help give me strength and help me recover. This is huge surgery and I will need all the strength that I can have. I will definitely have a huge road ahead of me with this surgery.
This surgery is hard on anyone, but it is especially going to be hard on me considering the fact that I have the neurological disease and autonomic dysfunction. Due to my neurological disease, I have a hard time taking a deep breath, as I have Dystonia of the chest wall muscles.
I am only hoping that while this first part of the transplant is just to remove the colon, I am only hoping that I won’t have to have a colostomy bag. I am deathly afraid of having a bag. When I told the doctor how I really didn’t want a bag, the doctor said to my dad and me “he is not a bag guy!” Of course my dad got the joke immediately, but I was a little delayed on the joke. The doctor said that I have a 99.9% chance of not having a bag because he really would hate for me to have a bag because it would most likely only complicate things. It would lead to another surgery and could lead to another potential complication and can lead to more chance of infection and other things. But nothing is 100% and he said that even though he doesn’t foresee it happening and hoping it won’t, if it did have to happen… it would only be temporary. So at least that is a good thing because I really didn’t want one. At least I also know that the worst-case scenario of getting one is that it is only ‘temporary’ and it will go away. That is another reason how I know the Cleveland Clinic is so amazing. They are the only people who are willing to do this surgery on me. Also, they are going to be doing it without a bag.

I also asked the doctors how they are going to ‘prep’ me for surgery because obviously they can’t clean my bowels and such. Usually when people go for GI surgery, they do a whole bowel-cleansing regimen. Yet, in my case, it won’t work because my GI system is essentially dead.

So the doctors said that they really don’t even want to do anything that is going to ‘stress’ my body out any further than it is going to be during the surgery. They know it is going to need all its strength and everything for the surgery and therefore, they don’t want to waste trying to empty by bowels and everything by having me drink stuff or through enemas or anything like that. Therefore, they rather manually do it during the operation. It is a bit more risky because I will have all that other stuff (i.e. food, meds, etc.) to deal with and it could harbor additional bacteria, but this is the best way to go.

I am really keeping my fingers crossed that things go according to plan and things will go as ‘smoothly’ as possible. The operation is over a 6-hour operation. Yet the doctors have even said that they don’t know exactly what will happen after the colon is removed because it will change everything. I am putting all my trust into them because these doctors and the hospital seem like the best place to be. When I have spoken to other patients, they have said how “great” this hospital and doctors are. They have even said that it is only this hospital and doctors that have SAVED their lives. If it wasn’t for this hospital, these patients claim that they wouldn’t be living. I only hope that I am as fortunate. After all, this hospital takes on cases that no other hospital will. They are known for doing famous surgeries that no other hospital has done such as the face transplant surgeries and others. They do things there that you would never imagine or ever hear of. So I am really trusting them with my life.

When I spoke to the other patients, they have nothing but praise for the Cleveland Clinic. They said that the hospital and staff is simply amazing. Of course I will be kept in the ICU. The ICU is supposed to have a ratio of 2 patients per patient. Each patient is also supposed to have his or her own room and there is a pullout sofa for their caretaker. I am really glad about that because I am hoping that my dad will stay with me in the hospital because I am really petrified to stay alone. The patients say that the rooms and the care of the hospital is like being in the hotel. They said that the nurses are very attentive and they don’t make you wait for anything. They even go around massaging you so that you don’t get stiff and everything. They said that they do whatever they can to make you as comfortable as possible.

When I go for the surgery, unfortunately both my parents can’t be there together. We don’t have the money to have both parents to be there and therefore, my dad will be with me while my mom stays home. I am scared for both. I am scared for my dad because he will be there alone and if something should happen, I don’t want him to be alone. I am also scared for my mom because she is left at home and not knowing what will be taking place. She will be blinded and only left to knowing what is known by the telephone ringing. I only wish I could have both my parents there especially since it is so dangerous and everything, but I know that it is not going to be possible. But I know that even though both my mom and dad won’t be there together, I will be in constant contact with my mom.

Not only will I miss my mom, but I will miss my pets as well. I literally have to pick up my life and go to Cleveland. I will have no comforts from home except for my dad. But thank goodness I will have my dad. My dad is not only my “dad,” but he is my best friend. I know that he won’t let anything happen to me. Thank goodness for SKYPE though because at least I will be able to be only a video chat away from the comforts of home. Perhaps that is one of the reasons why Cleveland Clinic is so nice. They know that patients come from all over the world to this famous place and they leave their comforts of being at home. Therefore, they want the hospital to be as “comfortable” as possible for each patient and to feel like “home” as well!!

So like I said before… I am supposed to be heading there this week, as I am going to have to meet with interventional radiology and anesthesiology this week to go over everything. I will also have to have all my pre-surgical testing as well. However, like I said before, it is of course contingent on the fact that I have the funds because as of right now there is no funds available especially since we just back from Cleveland a few days ago and we have had no time to “regroup” our funds together. My dad hasn’t really been able to work much since we gotten back and we haven’t really made up for him missing the work that he missed when we were gone last week. To make matters worse, this is also his “busy” time of the year and I feel really bad making him miss work. This is the time when he makes the most of his money and if he isn’t here to work, then obviously the money isn’t going to be made. I know how desperately we need the money too because we literally can’t afford any of our bills. The bills have snowballed out of control and we can’t pay for my treatments anymore. We can’t even pay our mortgage and even have difficulty putting food on the table. So, we know how important this time of year is for us because of how much money can be made. If he misses it, it is missed until next year. So I don’t know what is going to happen. I just feel really bad because I don’t want anything to happen to my family because of me. They have suffered enough because of me.

So the schedule is supposed to go like this if all goes according to plan… we are supposed to be leaving Monday or Tuesday at the very latest to go to Cleveland. We have appointments scheduled at 2 PM on Tuesday and therefore, we have to be at the hospital by 1PM. Therefore, it is really best if we leave Monday, but that also means that it is a day sooner and we don’t know if we can afford it or that we will be able to arrange it since every day technically counts since it is so soon and we need to make so many arrangements. I don’t even know how we are going to make all these arrangements by Tuesday especially since we know how expensive hotel and plane arrangements are when you do it last minute. We are even hoping that they have openings because of how last minute it is.

So we are meeting with the team Tuesday and Wednesday. I will be having various final testing, meeting with interventional radiology because they will be putting in the central lines and will need to be on hand for various other procedures, meeting with anesthesiology, and meeting with the team, which includes my doctors and surgeons. I will then hopefully be able to go home first thing Thursday morning. I need to get home because I have my usual surgery scheduled for Friday at Mount Sinai. I will then finally return on Sunday, August 24th, which will be when I will be admitted for the huge surgery. I will then have to be hospitalized after the surgery for 1-2 weeks and then I will have to remain in Cleveland for about 1 week afterwards to make sure that I am well enough to go home. Of course this is if all goes according to plan. However, if they find out that the toxins are coming a lot from other organs, I will have to undergo the transplant as soon as possible, and I don’t know if I will be kept there or allowed to go home and they will wait a bit. They won’t know until they see how I do with the colon out.

I have to go for my weekly surgery at Mount Sinai because I not only need to have my intestines cleaned out because of the toxins, but I am also scheduled for an EGD. If I don’t go for it on Friday, it would mean that I would have to have it done in Cleveland as well, which would mean staying another day. So the doctors have allowed me to do it at home so that I don’t have to stay another day.

It is going to be a long two weeks. But hopefully everything will be ok. In the meantime, I have my mom’s birthday today. I am going to try to be as happy as I can be under the circumstances. I bought her a cake and I am going to try to make it as special as I can. I would love to be able to take her out to a restaurant for dinner or buy her something really special, but unfortunately I don’t have the funds to do that. I also can’t really eat at a restaurant and that really makes going out to dinner to celebrate her special day an impossibility. I feel so bad because she hasn’t gone out for dinner in the longest time. It would be great to go out to a restaurant to eat especially to celebrate such a wonderful day. But hopefully I will get well soon and when I come back from the Cleveland Clinic I will be able to go out all I want to dinner because I will be able to eat again. Hopefully this is the start of my miracle.

So… this is the latest news. I am extremely nervous… I am not going to lie, but I know that this has to be done because otherwise I am going to die. They always say that time changes things, but in actuality… you have to change them yourself!! That is why I need to get to the Cleveland Clinic and help myself ASAP. Life is like an ocean. You got to keep swimming.

Life is like a swimming pool. You dive into the water, but you can’t see how deep it is. But I know that you just have to keep swimming no matter what and as long as you do that… everything will be ok. However, unfortunately, me staying afloat and able to swim is all contingent on receiving help from others.

Like I said before, all this is contingent on the availability of funds. Please help me. Please pray for me. Please help me raise as much funds as possible because I desperately need this surgery as soon as possible. Please spread my link at http://www.gofundme.com/FallonMirsky and help me raise as much money as possible so that I can get to the Cleveland Clinic to have this operation.

Thanks again for all your encouragement and support.

Love,
Fallon

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August 5, 2014

10553825_10101226979689850_937403025728409984_oHey!

Well… here I am at the Cleveland Clinic and I have news to share. In fact, I am so glad and fortunate that we came here because this hospital and doctor are so amazing. I really think that after crisscrossing the country and being poked and prodded like a guinea pig, I finally landed in a hospital and doctor that is going to save my life! I really think this doctor is not only knowledgeable in his field, but he is not going to be like so many other doctors that have promised me so many things and then got scared and backed out. I just hope that I get the treatment that I need in enough time because I am really running out of time!

10533883_10101228518456150_2921886973249408511_oWell… we finally made it to Cleveland. This place is huge and there is other stuff to do on campus other than just go for medical treatment at the hospital. So yesterday we went to the Museum of Natural History to kill some time. Well… it definitely wasn’t like the one in New York. In fact, it was so small and childish that we really did wonder why we went there. The biggest attraction that we saw was some live animals, which included a deer, some owls, and a turkey. But, at least it did kill the time.

The campus of the Cleveland Clinic is amazing. We keep seeing transplant helicopters, which makes me hopeful that I will get better here.

What a day I had today though. My head is still spinning after all that has happened. I found out so much news… news that I never knew. I mean… I knew that I was sick, but I never understood how sick. I also never quite understood what was happening to me when I was feeling “tired” all the time or when my brain was feeling “foggy” at times either. I always blamed it on lack of sleep or my medications, but apparently it goes far beyond that.

475519_10101228526974080_5778732194525628730_oThe team in Cleveland Clinic is simply amazing. The doctor came into the room and the first thing he did was give me a hug. He sat right next to me on the table and gave me the nicest hug you can imagine. Never before did a doctor do that to me before. It really made me feel good and it made me feel like there was a doctor who cared.

The doctor then asked me a few questions, as if he knew how “good” he was and how he wanted to show me how I am in such great hands. He asked me “Do you know who I am?” Of course I knew who he was. I only researched him thoroughly and knew everything about him from his picture to his curriculum vitae. He then asked me, “How did you find me?” He also finally told me that I am in “good” hands and he is not going to give up on me.

I never met such a caring and knowledgeable doctor. It turns out that I need surgery as soon as possible because I am so very sick. However, this doctor isn’t going to stall us out or chicken out like the others. He said this has to be done now.

I also learned why I am sleeping more than ever and why my brain is so foggy and such. It turns out that since my GI track is gone… especially my colon, all the toxins are building up and pouring into my bloodstream. Therefore, I am becoming totally intoxicated and poisoned. It is poisoning all my organs including my brain. This is leading to cirrhosis of the liver and it is also poisoning my brain. If something isn’t done fast, it will continue to intoxicate my body and I will end up in a coma and die.

10504992_10101228520836380_6220887605436081232_oAt least now I know what is happening.  I knew something wasn’t right.  Some of the doctors kept saying that it was my medications that were making me so “sleepy” and “cloudy.”  But I knew that couldn’t have been the answer because I have been on these meds for a very long time and if so, why all of a  sudden is all this occurring?  I knew that it had to be something else.  It is getting harder and harder to stay awake and as I am continuing to be intoxicated by the toxins, it is only going to get worse.  That is why it is imperative and urgent to get this taken care of right away because if it isn’t, I will end up going into a coma and dying.  My whole entire body is being poisoned.

So the question is whether I should have a transplant or just remove my colon. The doctor said to my dad, “If she was my daughter, I would transplant her immediately.” However, he didn’t want to do that because he said he didn’t know the “enemy,” which is the neurological disease known as the RSD. He isn’t too familiar about it and since I am documented as the worst case that exists with it, he didn’t want to do a major transplant until he knew all that he could about the RSD and how it would react to the transplant. So he is doing all the research that he can and also sending out all these other doctors and staff to do research on my illness as well. He is even calling out doctors from retirement to see if they can help. The doctors said that Dr. Kareem, which is my head doctor, is like a terrier. Once he sinks his teeth into something, he don’t let go until he finds out all he needs to know about something. That really made me feel good when I heard that because I knew that he wouldn’t give up on me.

In the meantime, something has to be done because my whole entire body is becoming intoxicated and I am going to die. Therefore, he is going to take out my colon as soon as possible. I told him that I really didn’t want a “bag” and he said that he is not a “bag guy!” I didn’t quite get the joke, but my dad did and they laughed at my expense. But then when I caught on, I figured it out.

The doctor told me that he isn’t looking to giving me a “bag” when I go for the surgery. However, nothing is a guarantee. But he did say that he is 99% sure that I won’t need a bag and if it should happen, then it would only be temporary. That made me feel so much better because I definitely didn’t want one. At least I also know that if it did come down to it and I had no other choice, at least it will only be temporary.

So the plan is all set for me to have my colon taken out in the meantime. However, there are some tests that need to be performed before they can do the surgery. Therefore, I will be coming back a few days before surgery so that I can have these tests done and then I will go right into the surgery. I need tests such as a heart stress test and others.

The surgery has to be done as soon as possible because of how bad I am doing and how quickly the toxins are spreading and I am deteriorating. The surgery will be about 10 hours long. He said that I would have to stay here at least 2 weeks. I don’t know how we are going to manage paying for all this especially when dad won’t be able to work during this time. So… if you can please help me raise some funds… It would be much appreciated.

I also met with the TPN doctor named Dr. Steiger. He is supposed to be the “founding father of TPN.” He is also going to be working on the team to see if he can try to get some TPN into me so that I can gain some weight and it will help me heal and everything. I have had TPN before, but unfortunately, I failed it all those times.

So… that appears all that is happening. My head is so overwhelmed with what is happening. I can’t believe that I am being poisoned. I can’t believe that there are toxins being built up and that it is going to my organs and even my brain. At least there is not an answer why I am so sleepy all the time and why I am having trouble thinking and concentrating.

10530490_10101228528481060_5114244574912117186_oI really feel like this is the place that is going to get me better. The Cleveland Clinic is such an amazing place to be. We kept seeing the transplant hospitals come to the hospital and I really felt hopeful that one day that helicopter will have my transplant organs on them. Since 2003, Cleveland Clinic has been ranked #2 in Digestive Diseases. The doctor that I am seeing, Dr. Kareem, is absolutely the best, as he has done the most GI transplants than any other doctor in the world.  So fingers are crossed that this is the beginning of my journey of getting well.  This is the beginning to my MIRACLE!!

My dad is really too funny! It just so happened that there were workers on top of the main hospital at the Cleveland Clinic working and my dad wanted to see exactly what they were doing. The building was extremely high and my dad was being inquisitive and nosy. We were in the doctor’s pavilion, which was located directly across from the main hospital, but there was quite a distance of more than the length of a football field between the two. Therefore, he took my camera and zoomed in on them to see what they were doing. He is really too funny.

I felt just like a little kid again with my dad pushing me in the wheelchair. After going to the doctor, I wanted to go to the Gift Shop to see if I could get a sweatshirt that said Cleveland Clinic. However, I was too weak and tired to walk and therefore, I really needed a wheelchair in order to make it there. I felt just like a little kid with my dad pushing me because when I was little, my dad used to push me in a wheelchair every time we went to visit my great-grandma. We used to run up and down the corridors with him pushing me in the wheelchair and I loved it. I almost wanted him to do it again in the hospital to bring back old times.

So… we are on our way home tomorrow to get things organized for our return trip here. We don’t want to waste money here while things get organized for the big surgery. We figured that we would go home and when things get set up and situated, we would then return back. This way everything would be in place and we would only have to spend when needed. The doctors are hoping to have us bad by the end of the month because of how badly I am doing, but of course it is contingent on the hospital schedule, which is always so busy because this is like the top hospital in the country, as well as on the funds that we have because if we don’t have money… then there is no way that we can come back and have this surgery of course.

We were really worried about the water when we came here because Ohio was in a state of emergency and was told not to drink the water. However, we found out that it was safe to drink the water here because where the hospital is located, the water is running too fast to actually carry the toxins that is poisoning the water that the other parts of Ohio cannot drink.

Well… I guess that is it. I guess I shared all the info that happened. I guess I just have to start preparing for the huge operation. Please continue to pray for me! Please continue to spread the word that funds are desperately needed because without them, I don’t know how we are going to afford this operation. Thanks so much for all your support!

Love,
Fallon

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August 2, 2014

1276963_10101225749255650_5658824964865156745_oHey-

Just wanted to write tonight because there is stuff to be known and tomorrow we are hopefully off to the Cleveland Clinic in Ohio. Yup… dad and I are off on another adventure!! So I just wanted to write and let you know all that is happening, as well as let you know about the upcoming trip!

To begin with, I want to announce that unfortunately the walk that was scheduled to bring awareness for my illness and to hopefully bring the much-needed funds for the lifesaving treatment that I need has been cancelled for this weekend and has been rescheduled. Due to the weather and an offer to have it “recorded” and made into a full-length (90 min) documentary, we thought it was best to have it postponed for about 2 weeks. I am so fortunately for this lovely lady to be willing to do this WALK for me across Fire Island. She is definitely an angel.

The walk across Fire Island will be about 35 miles long and will take over 2 days. The lovely lady willing to do this walk is a lady who I never met, but we have a lot in common. She is finding it in her heart to do this walk and trying everything in her powers to help to bring me the much-needed funds that I need in order to receive the lifesaving treatment that I desperately need. She has even started a group page on Facebook that you can join and follow known as FEET FOR FALLON 2014. Please go to it and “like” it and follow it so that you can know all that is happening.

Besides the walk that was supposed to take place this weekend, I am leaving for Cleveland Clinic on Sunday. Unfortunately though we don’t have the funds that we need to stay the amount of time that we really need to stay. The doctor really wanted to admit me as well when I see him on Monday, but unfortunately we are short on funds and therefore, it is really impossible to stay there an extended amount of time this time.

When we go to Cleveland this time, we are going to be meeting a ton of people. We are going to Cleveland Clinic because the transplant team wants to see me because I am soooo very sick. In fact, I have such severe gastroparesis and so very sick that they are thinking about giving me a multivisceral transplant. Originally, all that the surgeons wanted to really do was take out my colon even though my entire GI system was affected. Yet, the transplant team feels I am too sick and just taking out the colon will not be enough. They feel that it will go far beyond that and will include transplanting the colon, small intestine, stomach, pancreas, and liver. It is a massive transplant that is supposed to be extremely dangerous. In fact, it is the most dangerous transplant you can have. Any transplant that deals with the intestines is considered the most dangerous because it deals with the circulatory system and all different veins and such instead of nerves and such. Only 6 hospitals in the country really do this surgery because of how rare and risky it really is.

It is such a rare and risky surgery that only very few surgeons do it. Fortunately, I am scheduled to see Dr. Kareem Abu (I call him Dr. Kareem and so does everyone else because no one can pronounce his last name) and he is supposed to be the best surgeon out there. He has done the most transplants ever and there is supposed to not be a complication that he hasn’t seen. Well… I wonder what he will think of me because I am such a complicated condition. After all… I tend to stomp all physicians because there is really no physician that has seen anything that is happening with me. After all, I usually have doctors running all over the hospital with their feet not even touching the ground because they are scared and don’t know what to do because they see things with me that they never have seen before. So I am only hoping that this doc will really be able to help me.

However, I am still crossing my fingers that I will be able to see Dr. Kareem even though we are scheduled to see him first thing Monday morning. The reason I say this is because since he is the best surgeon and the head honcho there, I was told that if an organ becomes available while I am there, he will have to miss my appointment and go to the operating room instead to do the transplant. I can’t blame him because I would definitely want the same respect if the shoe were on the other foot. You can’t control when a transplant comes available and if a transplant does become available, you always want the best of the best doing the transplant. So hopefully I am not going to be making this trip all for nothing.

Not only will we be seeing Dr. Kareem, we will be seeing other doctors as well. We are also scheduled to see another doctor who is supposed to be the “father” of TPN. I have had TPN in the past and unfortunately, it has failed me multiple times. Yet, I only weigh in the 60s and my BMI is like 10.8, which is extremely dangerous. I desperately need to gain weight and losing even an ounce is extremely crucial. With the weight that I am, it makes any surgery (especially a transplant) extremely dangerous. Therefore, they want to try to make gain some weight. I can’t eat or anything by mouth because my entire GI system is gone. It is completely paralyzed. All my organs from my stomach to intestines are basically ‘dead’! Even my esophagus doesn’t work. I can’t even swallow anything thicker than water and even with water, I basically have no ‘swallowing.’

I barely can tolerate eating or drinking anything as it is. I am so limited to what I can eat and drink. I only really can eat egg whites and ice cream … and even that is extremely difficult. I also have to be careful with eating and even taking my 50 pills daily because they keep getting stuck in my esophagus because my esophagus doesn’t work. There are so many times that the doctors literally have to go into my esophagus and remove it because it is stuck. My esophagus is so bad that one shrimp or something takes up my entire esophagus.

I can’t even drink anything because I keep bloating up. If I want to drink anything, it has to be made into a slushy. I can definitely forget about drinking water because that is the absolute worst. I have learned though how to make soda slushies in like 3 hours. It stinks though because if I forget to put a drink in the freezer, I have nothing to drink because I have to then wait for it to “freeze” and become a slushy. I have to be so careful of what I drink nothing quenches my thirst no matter how thirsty I am. Then I have to worry about how much I drink because the slightest amount that is considered “too much” for my body (i.e. a cup that my body considers too much) will trigger off my autonomic dysfunction and really bloat me. I also have to be careful because every time I drink, it is also spilling into my lungs and making me ‘drown’ in my own fluids. I am aspirating like crazy as it is, and when I drink… it is making it even worse.

Therefore, the doctors have tried various ways of feeding me to try to build me up and give me nourishment. They have tried TPN multiple times, but it has been unsuccessful because it has burned up my veins and I have not been able to tolerate it. I have also tried J-tubes and G-tubes, because some individuals have difficulty digesting nutrients in their upper GI tracts, but their lower GI tracts function very well. But since the organs are already ‘failed’ and giving me problems, those tubes don’t really work on me either.

So I am going to be meeting with this doctor who is supposed to be one of the “founding fathers” of TPN. He really must be good and know what he is doing because he graduated medical school in 1966. So he probably has seen it all. When I spoke to the transplant team, they said that he is the absolute “best!” After all, he is the one who developed Cleveland Clinic’s Home Parenteral Nutrition Team.

However, there is so much to be done at the Cleveland Clinic and unfortunately there isn’t enough money to stay there for the duration that is needed. They really wanted to admit me and do some procedures on me as well there. Additional testing and procedures will be needed because of the transplant that is needed and they don’t know what is going to be needed before they see me. Therefore, they can’t set anything up without seeing me first and by the time they see me and everything, it will most likely mean that it will cause me to remain there longer than if everything was scheduled before I arrived because so many people go to the Cleveland Clinic and they are already scheduled with previous appointments. So I will have to wait my turn. However, since we are lacking funds, I don’t have the money to wait around there.

Therefore, since we are lacking the funds, we are planning on now going and getting everything together and then we will return at a later date to do everything. The group will have a meeting and this way when I return, we will be able to do everything that is needed. Yet, it is so important to have these funds as soon as possible because I am really deteriorating and I am not going to make it much longer. The sooner I have these funds, the faster they will be able to have me return. So if you can please spread the link to my fundraising website (www.gofundme.com/FallonMirsky) or think of a way to fundraise and email me at femirsky@gmail.com, I would really appreciate it. All donations are welcome, as no donation is ever too small!

To make matters worse, I had surgery today like I always do every Friday to get my intestines cleaned out. I am starting to get a new appreciation for Fridays. I am starting to understand really why they say “TGIF!” It is the only day that I actually get relief. I look forward all week to this day. I think it is pretty sad this is what my life has come to looking forward to. Yet, you can’t imagine how much better I feel when I have this procedure performed. It really makes a difference. Not only does it make me physically feel better, but also it is a necessity because if it is not done, nothing passes out. Therefore, whatever are in my intestines remains in there and it literally ‘rots’ and ferments. The doctors are so worried that it will result in me going into sepsis or that it will rupture or perforate my colon. If that should happen, I will easily die.

However, it is getting harder and harder to pay for this procedure because even though the insurance company is paying for this weekly surgery for right now even though it is not completely covered. We are running quickly out of the funds on hand to pay the difference and copayments that are needed. Therefore, unless we come across some donations, I don’t know how we are going to continue to pay for this treatment… which is something that I desperately need.

In addition, we all know that they are not going to be paying forever, as it is extremely costly. I only fear the day when they tell me that they won’t cover me anymore. I don’t know what I will do because I desperately need this procedure. I need this more than they know because it is the ONLY thing that helps.

52163_10101225749535090_8962000513579231645_oWell, today we had a little emergency when I went to have the surgery. I was getting undressed and the alcohol sanitizer that the hospitals have hanging on the wall happened to squirt on me. For some strange reason it started giving me such an allergic reaction that I started turning all red and itchy and in pain. It really triggered off the autonomic dysfunction and everything.

When the nurses saw what was happening, they were shocked. I was shocked too because all that squirted me was the hand sanitizer that they have hanging on the wall. Who would have thought that would do anything? They tried various things to try to calm it down but nothing worked. The allergic reaction was so bad that not only did it stir up the autonomic dysfunction, but also my blood pressure skyrocketed. Instead of my blood pressure being the usual 80/60, which is usually what it is at the max, my blood pressure was actually reading like 130/90. They knew something was wrong.

So the doctor brought me into the OR quickly to try to give me meds by IV to stop the reaction. I guess it worked because when I woke up, I was better. But with everything going on… I never got to give my dad a kiss like I usually do.

10547208_10101225746620930_8296315936193166401_oSo… I guess that is about it. This is going to be a very busy week for me. Today is George’s birthday. I can’t believe he is 19 years old. Thank goodness turtles can live for 50 years because this way I still have many more years to come with him.

Speaking of birthdays, my mom’s 61st birthday is quickly approaching, as her birthday is August 9th. I really hope to make her birthday special. She is such a special mom who doesn’t deserve this life that she is living. She has given up so much in order to help me and to care for me. She is not well herself, as she suffers from multiple sclerosis. Yet, she handles her illness, my dad’s business, the house, and me! My mom is simply the best. She is WONDERWOMAN!! She is the type of mom I hope I become if ever become a mom. She is absolutely the BEST!

I only wish I could make my mom’s life better!! She hasn’t been out to eat at a restaurant because I can’t go out or on vacation in the longest time. All her life consists really of is going to work and coming home and taking care of me. She doesn’t even buy herself anything to enjoy, as she would love to buy new clothes, furniture, etc. It really is no life that anyone should be living… let alone someone as wonderful as my mom. All she does is remain in the house looking literally at the 4 walls. Her only source of ‘fun’ is playing the games and apps on her iPhone and Kindle. Even when we go “away” to appointments, everything at home is left on my mom’s shoulders to handle.

Well… I guess I will be going. Have so much to do in preparation for tomorrow’s trip and not feeling well. Thanks again for all your encouragement and support. I would definitely have not made it this far without you. Wish me luck in Cleveland. We all know I am going to need it. Of course I will keep you posted with all new info.

Love,
Fallon

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July 27, 2014

10517235_10101217013587000_49235970817709470_oHi!

I figured that I would take this opportunity to write and let you know that is happening because not only are we about a week away from leaving to go to the hospital, but we also have a lot of news to share, and something really bad has recently happened. So… I figured that I would write now and let you know what has been happening because things have not been going well and we did recently have a little emergency.

I really have not been doing well. I know I always keep saying that, but that is really the truth. I always keep thinking that it really can’t possibly get any worse. But somehow… it continues to always get worse and worse. I honestly don’t know how much more body can take.

Sometimes I wonder how my body is doing this. I know for one thing that I am not the only one wondering this. The doctors have said that they would have thought by now that I would have been dead. No one expected me to live this long. In fact, the doctors have even stated that they don’t even know how I am even living this long. My body is like a marvel. It is defying all odds. It just keeps on taking a beating and yet it keeps on ticking.

I am on so much medicine to try to make me as comfortable as possible and yet… it doesn’t do anything for me whatsoever. Yet, the amount of medicine that I am on is enough to kill a horse. I am serious in that. Anyone else would never be able to tolerate the amount of medication that I take. I take so much and yet… you can’t even see it making a mark on me. Even when I go for surgery or anything… the anesthesia has to be so high because I am so tolerant of it because of all the drugs I am already on. Even when I go to the dentist, the dentist even has to be careful because novocaine and laughing gas doesn’t even have an effect on me.

Sometimes I wish that my body would just let go. I am tired of fighting. I really honestly don’t know how much more of this I can possibly take because I am so tired of fighting… both physically and psychologically. The pain and suffering is just getting to be way too much. It is unbearable. Sometimes I call my body “stupid” because it just doesn’t want to give in. No matter what happens to it or how much is done to it… it keeps on going.

However, strange things keep happening. I know I am getting worse and such because not only am I suffering in pain worse than before, but other things are happening as well. My sense of smell has changed and so has my taste. Nothing tastes right or smells right. In fact, everything that I eat makes me nauseous and sick.

In addition, I have also been going to the “other” side a lot. I know I sound crazy, but believe me… it is something that only the dying can really understand. People say that when they die that they see a bright light or other stuff. They are not lying. I have been going to these most peaceful places. There are even bright lights and everything. I know my time is coming to an end and I know that when I do go that it will be to a very peaceful place because when I am there, I really don’t want to leave.

I have been not only suffering in pain worse than ever, but I have been having such a difficult time breathing. I am aspirating like crazy and it is basically getting impossible to breathe. I literally feel like I am drowning in my fluids in my lungs. It is really hard on me too because I am so very thirst and the more I drink, the worse I feel. Yet, it is even at the point now that I am choking and having a hard time breathing even without drinking. Due to my GI system not working, I can’t absorb anything and as a result, I am dehydrating like crazy. I am so thirsty and the more I drink, the worse of course I feel. But no mater what I drink… I just can’t quench my thirst. It really stinks. Then when I drink that one glass too much… I have to suffer with the aftereffects such as the autonomic dysfunction because I will literally heat up and becoming all “prickly” all over, I will become all distended and look pregnant, and I will feel like I am having trouble breathing even more. It just plainly stinks.

10463860_10101215995033190_2452119877790491004_oI have also developed a lump in the back of my knee. We are unsure what it is, but it is extremely tender. I had a lump in the same leg, but it was lower down in my calf. It was also tender. This is the leg that has the disease worse than the rest of my body. We were very worried that it was a blood clot or something, but the doctors were not sure what it was. At any rate, the lump that was in the calf has since disappeared, but when I went for the ketamine infusion the other day, I got up and felt this pain behind my knee. It turns out that I now have basically that same kind of tender and swollen lump that I had in that calf behind my knee. We really have no idea what it is. We really don’t even know if possibly it is the same one as the one that was in my calf and it possibly moved. I am such a medical wonder.

I have also been feeling worse in my intestines. I am becoming more bloated than ever and my intestines are becoming more dilated than ever. I keep filling up with air and the only way things will pass through is if I have the weekly surgery that I have on Fridays or if I am lucky enough to be able to manage to manipulate it through with my hands. But it is getting harder and harder to manipulate the air through my intestines and get it out with my hands. I am so uncomfortable and keep walking around like I am 9 months pregnant and ready to give birth. I keep wishing that someone would just “pop” me already!

It is pretty sad that I always look forward to Fridays. You know the saying “TGIF”? Well I couldn’t agree more with that saying. It is pretty sad that the highlight of my week is going for my weekly surgery on Fridays to get “vacuumed” and suctioned out. I just can’t take it anymore. It is unbearable. The doctor has remarked though that I am worse than ever in that aspect too. He said that I am filling up more than ever with mucous and my intestines have been more dilated than ever. I desperately need help.

To make matters worse, I have recently also been coughing up blood. So the last time I went for the weekly “housekeeping”, he also not only vacuumed out my intestines, but he did an endoscopy as well to see what was happening down the esophagus as well. My esophagus is getting worse now as well because the pills are getting stuck worse than ever. The doctor literally had to go in and remove the pills because they were just “sitting” in the esophagus and wouldn’t go anywhere. After all, my esophagus is basically paralyzed as well. That is why I get no peristalsis in that as well and I get no swallowing with anything thicker than water… even baby food. Even when I had water, it showed no “swallowing.” Something really needs to be done!

Wanna hear something funny though? When I had surgery this past week, the anesthesiologist actually let me push my own meds. They brought me into the OR and of course they let my dad come with us as well. My dad has special permission to come with us and stays with us too until I fall asleep, which is something that is normally not allowed. Yet, they all know me there and since I am so sick and there every week and such, they let my dad come in with me.

Anyway… the anesthesiologist was giving me certain drugs through the IV to prepare me to go to sleepy land and he let me push them into my own line. I was literally pushing in my own Lidocaine, Fentanyl, flush, etc. My doc couldn’t believe it. He looked up and saw what I was doing and he said to the anesthesiologist, “you’re letting her push her own meds?” He was totally in disbelief. I was in disbelief too but the anesthesiologist said that this way I would be able to do it at the rate I wanted because I can’t tolerate IVs. I am extremely hypersensitive and can feel the littlest amount going through the IV. It is like shards of glass going through my veins so the anesthesiologist thought it would be better if I did it and this way I could do it as slow as I wanted.

But to make matters worse, we ran into a HUGE problem when we went for surgery this time. We had a real big emergency this time. My blood pressure is normally really low, but apparently it really dropped into the danger zone. They got my dad and told him but wouldn’t tell him numbers or how bad it really was. They just said to him that I’m in ‘danger’ as my blood pressure is really dangerously low. They had to give me fluids and meds to try to bring it up. When I was waking up they were still trying to work on me. I tried telling them that I normally have low pressure but they said that it was so dangerously low that of I got up I would pass out. They wouldn’t let me even move because of how low it was. They wouldn’t even tell me how know the numbers were but I know the top number was one time in the 40s. I heard them say one time 40 over 20. My body just keeps having autonomic dysfunction.

10371343_10101217011576030_6848649766889587289_oBut at least we are hopefully supposed to be leaving on Sunday for the Cleveland Clinic. Yup… Dad and I are off again! So dad better rest up for another adventure. I love going with my dad. I love being with him. Not only is he my dad, but he is my best friend. He takes such great care of me when we are together and it really hurts him that no matter what he does, he can’t get me well. It hurts him even more that he can’t even afford the treatment that I desperately need to save my life.

I was supposed to be going to the clinic this week to see one surgeon, but the transplant team contacted me and said that I “belong” with them and I am too sick to see just an ordinary surgeon. They said that they felt that just having that one surgery to have the colon removed would not be sufficient enough and I would need a whole transplant of my small and large intestine, stomach, pancreas and liver. It is a major operation and extremely risky. Not many hospitals do this operation. In fact, only like 6 hospitals do this multivisceral transplant and it is deemed as the most dangerous transplant to have. Any transplant that involves the intestines is dangerous because of all the vessels that are involved. It is basically all circulatory and it makes it incredibly dangerous. Plus you are dealing with all that bacteria down there and everything so an infection can easily set in.

So since the transplant team called and said that I was so sick and belonged with them, I had to postpone my trip one week to see them. I am supposed to be seeing the top surgeon in the nation. He did the most transplants than any other surgeon. He is from the Intestinal Rehabilitation and Transplant Center at the University of Pittsburgh (UPMC) since its establishment in 1999 and has earned an international reputation for clinical and technical contributions to the field of transplantation. He has authored more than 300 original publications and 40 book chapters. He is an active member of 13 prominent professional and scientific societies.

I just hope that I am making the right decision. I know I have to do something to “buy” time because ideally I really should be going to Mexico, but unfortunately we can’t afford it. I really need to go to Mexico and have that Ketamine Coma. However, going to Mexico would cost me $100,000 at the very least and we can’t afford it. So, I am literally wasting and deteriorating because I need that very special treatment. We are trying to buy time while we find a way to get that money. Yet, since my body is shutting down and failing me, we are trying to save as much as we can and do as much as we can in the meantime. So in a way you can say we are just putting “Band-Aids” on the problem until I hopefully can get to Mexico.

However, having this transplant is really scary because it is even more risky than usual because I am so very sick. Yet, we really don’t have a choice because if I don’t have the transplant, I will die because my body is shutting down and we can’t get to Mexico right now. I am so afraid of dying with tubes coming out from everywhere because the doctors have already said how there will be so many tubes because the transplant is so intense. This transplant is no easy business. However, I am fortunate that I have the best surgeon on my case because Dr. Kareem’s reported overall patient survival rates of 61 percent at five years, 42 percent at 10 years and 35 percent at 15 years.1 Notably, the best survival rates, 70 percent at five years, were achieved more recently because surgical techniques and immunosuppression have improved.

I really feel comfortable though going to the Cleveland Clinic because they are making this trip as “easy” as it can be for me. They are trying to help me out in any way possible. Instead of telling me things and leaving it for me to do like get a hotel, make appointments, etc., they are doing everything.

I also feel comfortable because I am having a whole “team” on my side. I am seeing a whole set of top rated doctors. Dr. Kareem, which is the transplant surgeon, is the world’s most experienced surgeon in intestinal transplantation. He has dealt with almost every possible complication, and he knows how to work the immune system — that’s the hardest par t of intestinal transplants, which pose a greater immunologic challenge than do other transplant types. I will also be meeting with the doctor who basically invented TPN. I have had the worst times with TPN but maybe the guy who has the most experience with it will be able to help me with it. Finally, I need help with my autonomic dysfunction and neurological disease too. It just so happens that this center is familiar with it as well. Very few hospitals are familiar with my neurological and autonomic dysfunction so that is definitely a plus. In fact, the doctor most familiar with it happens to be “retired” and therefore, they are even trying to pull him out of retirement to see me. What a center! Maybe by going to this center I will be able to have everything accomplished and I won’t have to go to Mexico after all. Maybe between my entire team, they can cure me entirely. I can hope, right?

I just hope we will have the funds to do this. We are really suffering in the financial area and as a result, it can really make a difference as to whether all this will be possible. We are still not 100% sure if we will be able to even go next week because of the funds available. It is going to be close. It is getting harder and harder to scrap around for the money to pay for my treatment, medications, appointments, medical expenses, traveling expenses, etc. We desperately need help. Any help that anyone can give is much appreciated. NO donation is ever too small. If you have any ideas to fundraise or how to raise the money, I would really appreciate it. After all, we will even have to probably relocate if and when I have the transplant for a bit and that will take additional money as well, which is definitely something we can’t afford. My health is really deteriorating and I need help more than ever. Please continue to spread the word of my website, which is http://www.gofundme.com/FallonMirsky because we desperately need help. The bills are just snowballing out of proportion.

e523bcf9-407c-4f29-bcd6-34e54f71a9a4_profileI am fortunate enough for one lady to really take it upon herself to try to help me out in any way that she can. She is determined to help me get the funds that I need to live. In fact, she has set up a website on Facebook in case you want to take a look at it. I really invite you all to look at it and hope that you will because she really is truly a fantastic woman to have done this for me. I have never met her before in my life and yet, she is willing to do all that she can to help me raise the funds that I need to save my life. She has tried contacting media, posting stuff on Facebook, etc. The website is “Feet For Fallon 2014” on Facebook.

On August 3rd, I will not only be hopefully leaving for Cleveland, but this lady will be doing a walk across the entire length of Fire Island in hopes that she can raise funds and awareness for me. I was hoping to be able to meet her at her finish line, which was going to be at the lighthouse, but unfortunately I will be in Cleveland at the time.

Well… I guess that is about all that is happening. I have been trying to do some reading lately with all that has been happening. I am trying to read “If I Stay” by Gail Forman. It is a book that was turned into a movie, which is supposed to be coming out in the latter part of August. I saw the commercial for the movie and since it looked good, I decided to read the book. Speaking about movies, I saw the trailer for the movie called “Into the Storm.” I really can’t wait to see that movie. However, I will have to wait a bit longer than the normal person because I will have to wait until the movie comes out on DVD because I can’t go to the movies.

I can’t believe it is August already basically. That means Fall and the cold weather is basically around the corner. I hate the cold and I am hoping that this month doesn’t go as quick. It seems like it finally just warmed up and we finally got rid of Winter. This was the longest winter ever.

IMG_0213Speaking of August, my turtle’s birthday is on Friday. I can’t believe that George is going to be 19. I had him for 19 years, but when I took him to the vet, he is actually like 28. Turtles can live for like 50-100 years… so I will hopefully have him for a long time. I love this turtle. He is really something else. There is no other turtle like him. He is more like a dog than anything else. He actually runs around my house and he is no slow moving turtle either. Instead of him being afraid of the dog and cat, he actually chases them and they are afraid of him. My cat Missy loves to baby-sit him.

George is my little escapee. I actually got him because he was smuggled in from China. I was wanting a turtle for the longest time, but unfortunately there was a band on turtles and they weren’t bringing them in. However, I did receive a call one day from the aquarium telling me that they got one smuggled in. I went down to them and it was love at first site because there was something about George that got to me.

IMG_6607 copyGeorge is by far definitely not like any other turtle. He runs faster than any of the others, he is such a messy eater, and he has such a wonderful personality. In fact, when we take George to the vet, he has his own carrying case and everything.  He also loves to play with the ducks and everything when we go. My dad laughs because he spends the entire night in the corner by my bed watching me and watching TV because I am up all night long watching. My dad says that he is learning “English!” He also loves to be sung to. He is so funny because if he sees someone coming into my room, he definitely wants to come out. He will literally knock on the glass and ransack his cage until he gets what he wants. You can tell he is pissed because he literally spits. He gets himself so worked up that he actually blows bubbles out of his nose. He is such a funny little guy. Even when he eats, he is so spoiled. He has to have premium cut dog food that is sliced. He also has to have it in a “hill” so he doesn’t have to bend down. He is such a character. The best part though is that even though reptiles could have diseases and carriers of diseases, I know George is completely clean of diseases because he has been thoroughly checked out by the vet and has had so many tests.

Well… I guess that is about it. Please continue to pray for me and please continue to spread word of http://www.gofundme.com/FallonMirsky. I desperately need help in order to be able to receive the necessary treatment and to continue to be able to receive my medications and everything that are needed to save my life. If you have any suggestions on fundraising or anything else, please don’t hesitate to contact me at Femirsky@gmail.com. Thank you so much for all your support and encouragement.

Love,
Fallon

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July 18, 2014

10514200_10101209425882820_6913580955505816428_oHi-

I just wanted to write because I got HUGE news to share. I am actually writing today because for once, I actually feel like I have some “hope” and a light at the end of the tunnel. I really feel like things might be turning around and providing all goes well, I really feel that this could be the start of my miracle.

It really seems weird though that all this is happening now. I have not only got HUGE news to share, but my actual feelings have changed too inside. I wonder if it has something to do with the day. Today is July 18th,which isn’t just any ordinary day. It is the day that my grandpa passed away 20 years ago. Even though it has been so many years since his passing, there still isn’t a day that goes by that I don’t think of him and wish that he was still here.

Gosh… I can’t believe that it has been 20 years. I only wish that I could roll back the hands of time because I would do anything to be with my grandpa again! But unfortunately that can’t happen and time marches on. But I know that even though he hasn’t been here physically on earth, he has been watching over me and guiding me and protecting me. I know that he only wants the best for me and I know that he would do anything to make sure that I get better. Perhaps that is why all this is coming together now… so to show me that he is still there for me and that he is looking out for me! He and I had such a special bond that no one could break. RIP Grandpa!!

The biggest news that I just found out that I wanted to share is that we just received a call from the Cleveland Clinic, which was very unexpected. We already had made plans to go see a colorectal surgeon next week at the Cleveland Clinic because I needed to have my colon removed. Everything was scheduled with the doctor and therefore when the phone rang tonight, we had no idea why the hospital was calling especially when it was like 9:30 at night. Who knew that this phone call was going to be the call that was probably going to change my life? This news couldn’t come at a better time because I have been doing really horrible lately… even worse than before. I am really suffering immensely and breathing is getting harder than ever. I am having a really hard time clearing the secretions from my lungs, as I am aspirating worse than ever. I constantly feel like I am drowning in my fluids.

I was really baffled that the hospital was calling me when the appointment was scheduled for the following week and it was also 9:30 at night. I wasn’t expecting to hear from the hospital, so it really was a wonder why they were calling. When I picked up the phone though, it wasn’t the doctor’s office that I was going to see on the line. Instead, it was the transplant team!

It turns out that my case really got the attention of the entire hospital including the transplant team. I am so sick according to them that I was referred to the transplant team, which is supposed to have the best of the best surgeons in the hospital and the ultimate care. The doctors had felt that having just my colon taken out was not going to be sufficient in the long run due to how “ill” I was and my condition, and therefore, they thought that a transplant would be the best decision.

The transplant team had read through all my records, which is a volume in itself and they said that I really “belong” with them. I told them that I was hesitant to come to them and scared that I was going to be “turned away” because of how complicated I was. The transplant team assured me though that I shouldn’t be feeling that way. They said that the biggest hurdle I need to get over is the past because I need to let go of how past doctors treated me. They said that they were the “best of the best” and they know how sickly that I am. They said that they are used to getting the biggest and toughest cases and they are not afraid of “cases that are complicated” or cases that you have to “work” for. They said that I was in the RIGHT place.

The transplant team at Cleveland Clinic is a department for the sickest people. When I was talking to them, I actually felt for a change that they cared about me. I finally felt like there was a “team” helping me out because they were trying to help me out in every which way possible… trying to make things as easy as possible for me. For once, I felt like there was someone that understood me as well as everything I was going through. They knew how difficult everything was that I was going through and therefore, they did everything that they could to help me out. They said they were doing everything from helping me set up a hotel to scheduling all my appointments and more. I didn’t have to rack my brain anymore fitting everything in like a jigsaw puzzle or doing everything anymore. What a relief!

The intestinal transplant team knows how risky a transplant is and therefore, they really took extra special care of me. I never felt so comfortable with a set of doctors. After all, an intestinal transplant is the hardest transplant and the most dangerous that you can have. The doctors said that I would need my intestines removed, along with my stomach at the very least. They are also looking to remove my esophagus, pancreas, and spleen. It is one complicated surgery and you really need to have the best surgeons in the business to do this operation because it is so dangerous. After all, I am not in the best state to be operated on either. I am a huge medical risk with all the complications that I have such as with my autonomic dysfunction and other health abnormalities.

Only a few transplant centers in the world offer intestinal transplantation (also referred to as small bowel transplantation) as a treatment option for intestinal failure and complications related to parenteral nutrition (PN). I am really happy going to Cleveland because I am really going to get the best care. In 2011, the Center for Gut Rehabilitation and Transplantation completed three intestinal transplants for a total of 20 transplants since the program’s inception in June 2008. The program received CMS certification for Adult Intestinal/Multi-visceral transplantation, effective Dec. 15, 2010.

Currently, Cleveland Clinic is the only hospital in Ohio to perform adult intestinal transplants and is among only a few in the United States to do so. Cleveland Clinic consistently ranks as one of the top two hospitals in gastroenterology in U.S.News & World Report’s “America’s Best Hospitals” survey. In the 2011 survey, it was the top-ranked hospital in the gastroenterology category that offers intestinal transplant. Additionally, the American Society for Parenteral and Enteral Nutrition recognizes Cleveland Clinic as a program of excellence in nutrition support. The Center is comprised of surgeons, physicians, coordinators, nurses, dietitians, nutritionists, social workers and a vast network of people and resources to make the intestinal rehabilitation and transplant process as smooth as possible. So I really feel like I have a whole “team” on my side!!

The person that called me tonight spent an entire hour on the phone with me explaining everything in detail. She let me ask any question I wanted and really made me feel extremely comfortable. I am so glad that I am going to this new facility. I just hope that I will be able to raise enough funds to go because of course it will mean that I will have to travel frequently to Ohio, which is a plane ride away. It will mean staying at a hotel and everything else. It will also require medical expenses that the insurance won’t cover. In fact, when it comes time for the transplant, I will have to relocate temporarily to Cleveland and therefore I will need funds to do that as well. So… I only hope that I will be able to afford this whole treatment because I really feel that this could be my “miracle.” I just hope it isn’t taken away from me.

The transplant team wants to see me as soon as possible, but unfortunately the doctor will not be available until August 4th, as he is out of the office. However, this doctor is the best of the best. My surgeon that I am seeing is not just any ordinary surgeon, but the program director and surgical director. He has earned an international reputation for clinical and technical contributions to the field of transplantation. He has authored more than 300 original publications and 40 book chapters. He is an active member of 13 prominent professional and scientific societies.

In addition, I will also be meeting with Dr. Steiger, who happens to be the “father” of TPN. I only weigh in the 60s and therefore, I am very malnourished. It makes any surgery extremely dangerous and even living at that weight is dangerous. In 1975, Dr. Ezra Steiger, a General Surgeon and member of the original Philadelphia research group, was recruited to Cleveland Clinic to organize a formal Nutrition Support Team with multidisciplinary expertise in nutrition, vascular access, and nutrient pharmacology. So even though I have failed TPN in the past, I am hoping that he will be able to help me!

In addition, I will be meeting with another doctor that deals with my autonomic dysfunction and neurological disease. Even though he is “retired”, they are going to bring him back to see me because of how complicated that I am.

So… perhaps there might be a light at the end of the tunnel opening up! I just hope everything works out. I just can’t get over how they called me out of the “clear blue sky!” They claimed that they aren’t like any of my other doctors and I need to let go of all the things that happened in the past because they are not like them. I guess time will only tell.

As stated though, I desperately need funds to be raised for my medical expenses. My medical costs are extremely expensive and therefore, my family cannot afford the treatments, the traveling, the medications, the appointments, etc. without the help of others through donations. My health is literally on the line and I am really desperate for as many donations as possible because I don’t want to die and without the donations, there is no way that I will be able to receive the lifesaving treatments that I need or anything else to make me better and keep me alive.

e523bcf9-407c-4f29-bcd6-34e54f71a9a4_profileI am fortunately though and extremely lucky that a woman that I have never met has decided to do a “walk” for me. The “walk” can be found on Facebook under the link “Feet For Fallon”. She is going to be walking the length of Fire Island to bring awareness to my condition in hopes to raise the funds that I need to hopefully reach that light at the end of the tunnel and to finally be able to live my life. It is an extremely touching thing that this woman is doing for me and I can’t thank her enough for it. Please check out her Facebook site and please spread the word.

In addition, the lovely and caring woman also set up a Youcaring.com page in my honor to help raise funds for the “walk” as well. The website can be found at http://www.youcaring.com/medical-fundraiser/feet-for-fallon-2014/205751. Please spread the word to as many people as possible and please check back frequently on the page, as updates will be frequently made. After all, donations are desperately needed and no donation is ever too small. ALL donations are MUCH appreciated.

Time is really precious for me. I am not doing well at all and there’s no such thing as “time” or 5 minutes anymore. For me… every minute counts. I am really running out of time fast and that is why I am trying to raise as much funds as possible so that I can get the much-needed treatment before it is too late. I also want to do all that I can and experience as much that I can because I don’t have the pleasure to “wait” and do it later. It is important to me to experience all that I can before it is too late.

10515297_10101203522642960_1429400719228554949_oWell… I better be going. I gotta go rest because I have my usual Friday surgery in a few hours. Got my special x-ray socks ready to go. In fact, when the kind lady called to confirm my appointment, she saved me for last because this way she can have a real “conversation” with me instead of just asking the usual questions that she has to ask every patient and then hanging up with them. She talks to me every week and therefore, we really have gotten to know each other. I guess what other person can say that they have to go for surgery every week like this, right? Hopefully though this will not have to be for much longer because I will be on the road to good health. After all, the person I spoke to on the phone tonight at the Cleveland Clinic said that the goal is to get me healthy and back to a “normal” life. I just hope it works.

Thanks again for all your continued support. I really appreciate all the prayers and encouragement. Please spread the links below. http://www.gofundme.com/FallonMirsky and http://www.youcaring.com/medical-fundraiser/feet-for-fallon-2014/205751

Love,
Fallon

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July 12, 2014 ffff

10515297_10101203522642960_1429400719228554949_oHi-

Just wanted to update you on all that has been happening because since the last time I wrote… a lot has happened. It seems that things have definitely made a complete turnaround and there have definitely been a huge change of plans…especially with the surgery for the removal of my colon. So I wanted to share them with you since so much has happened.

I guess before I tell you about the change of plans, I will tell you what happened today. As always, I went for my usual Friday surgery, which entails going to get suctioned and vacuumed out! I need to have my colon cleaned out because my GI system is essentially paralyzed and dead and as a result, nothing passes through. Therefore, I have so much mucous and stuff inside and I am not only very distended and uncomfortable because I cannot pass this, but it can also cause me further problems because all this stuff is literally “rotting” and “fermenting.” Even though I basically vomit everything I take in, whatever I don’t vomit and even my pills that don’t come back up just end up sitting in my GI system rotting and fermenting until they are removed. The doctors are worried that my colon is going to perforate or rupture, and they are very worried that I will go into sepsis because of “rotting” and fermenting of all that is happening inside. So it is really imperative to have my GI tract cleaned out as much as possible… not to just make me more comfortable, but to also make sure that things are removed. In addition, my colon and intestines are so dilated that they are putting extreme pressure on all my other internal organs including my heart and as a result, it is also shutting them down. So by having my GI system “cleaned out,” it is relieving some of the pressure. I like to call it that I am going for my weekly “housekeeping!”

I really need this treatment because without it I will not be able to pass anything through and I can die. I literally become all distended and look pregnant because of the extreme gastroparesis. In fact, I even had to wait over a week from the last time I had this procedure due to the 4th of July and boy did I feel it. It really made a difference that I had to wait an extra 2 days to have this done. I was so uncomfortable because I felt so blocked up that I was literally counting down the minutes until I had this procedure today.

This has become my way of life! I desperately need to have this treatment because without it I will suffer way beyond belief and it can also kill me by not having it because my intestines will perforate and all that stuff that is just sitting and rotting will kill me. Without this treatment, I will surely eventually go into sepsis and die. However, the doctors are afraid that even though the insurance is covering this treatment to a point now, they are afraid that they are going to stop paying. We all know that the insurance company isn’t going to continually pay every week for me to go for this surgical procedure because it is so expensive. It entails me going under anesthesia, going to the hospital, having a team of doctors, etc…. so it is quite expensive. We don’t know what we are going to do when the insurance officially stops paying. That is why I need to get HELP as soon as possible. I really need to get as many donations as possible so that I can afford the necessary lifesaving treatment that I require such as to have my colon removed so that I won’t have to undergo this procedure anymore. I also need the funds because if the insurance does cut me off, I will need some way of paying for the treatments until I get my colon removed. But of course if I would just have the surgery already to remove my colon, it would really be the answer because not only would it help me, but also I won’t have to worry about the cost of these surgeries that I have every Friday. In the meantime though, I just continue to pray that the insurance company continues to pay as much as they are doing because I desperately need this surgery every week. I am in so much pain and agony as it is… and this surgery really does help. It is also saving my life in the meantime while I wait to have the bigger surgery performed.

What a day though I had when I went for surgery though. By having surgery every Friday, the entire staff knows me there from the receptionists to the nurses to the doctors. I really feel comfortable there because they know how to treat me, as I can’t be treated like a typical patient since I am so hypersensitive and the slightest touch brings about the most painful feeling you can imagine as well as stir up the autonomic dysfunction. I am also a very big surgical risk and they have to be careful with me because I am medically unstable. For example, my blood pressure is extremely low (it is like 70/40), my heart rate is very low (43 beats per minute), etc. So they really have to be careful with me. I also can’t get IVs in the same way a normal patient can get it. I need to have it done right before I get sedated and I cannot have any liquid run through the IV until I am under anesthesia because I can literally feel the most minuscule amount of liquid in my veins and it will feel like shards of glass going through my entire body. The littlest stick of a needle is like someone sticking a knife through me. In addition, I get special accommodations that normal patients don’t usually get, as they allow my dad to come into the OR with me and stay with me until I am officially “knocked out!”

What a time I had though today with this surgery. This time when I was given the propofol to go to sleep it caused me sooooo much pain. It is known to do that and they usually give me lidocaine prior so that the pain isn’t that bad. I call that milky what substance the ‘lethal” stuff because it’s like glass running through your veins and tearing it to shreds.

Anyway, when I was given the propofol this time, it really hurt so badly that I was screaming my head off. I was screaming so much that another doc came into the OR and my doc was like “it’s not me… I didn’t even touch her yet!!” They literally had to close the door because I was making such a ruckus. I was in so much pain that I was screaming so much. I was telling them to cut my damn arm off because it hurt so badly. The doctor was like telling my dad “don’t worry… She’ll be out in a minute!” Well… That minute felt forever. That was the longest minute of my life.

Thank goodness though I had the surgery though today because I couldn’t make it much longer. I was definitely overdue because I wasn’t able to have it last week on my usual Friday due to the holiday and as a result I had to have it 3 days before (Tuesday). I was so bad that now I am suffering with all this air in my intestines and it won’t come out because like I said before, nothing moves through the intestines. I have to literally try to manipulate the air bubble out of me by pushing and such on my abdomen. The doctor tries to take out all the air that he puts in me to blow up my colon, but nothing is 100%. He must have had to blow the colon up a lot because when we saw him after the surgery, he said that it was really ‘bad’ inside and he said that he could definitely see a difference that I was ‘overdue.’ So it wasn’t just that I felt it… there actually was a physical difference.

I gave all the nurses and doctors a great surprise today as I wore my “x-ray” socks. Due to the hypersensitivity, I can’t wear the socks that the hospital usually gives you to wear. In fact, I can only even wear a sock on the right foot because the disease and hypersensitivity is so much worse in the left foot . The only thing that is tolerable to wear on the left foot is a stretched out stockinette. Since I get to wear my own sock, I thought it would be cute to get x-ray socks especially since I am going into the hospital and OR. Well… when the doctors and nurses saw the sock, they loved it!! Too bad I can’t use the other sock. My dad said that I should save the other sock to wear when this sock gets old. But I told my dad that it is literally impossible to wear this sock on the right foot because the bones will be backwards.

Well…here comes the BIG news that I really wanted to share. There has been a BIG change of plans. It turns out that I am now going to be headed to the Cleveland Clinic in Ohio. The surgeon that was supposed to be doing the surgery to remove my colon is backing out of the operation unfortunately. Therefore, it gives us no choice but to go to another surgeon, which will be at the Cleveland Clinic.

After the surgeon was thinking about the case and going through my records in detail, he decided not to do the surgery. Doctors don’t realize how complicated I am or what they are getting themselves into until they physically see me. That is why doctors always say that they will do a surgery or something until they see me. Then there is always a change of heart.

The surgeon that we saw feels that I am too medically complicated for him. He feels that there are better surgeons that are equipped to handle me and as a result, he rather them operate on me. He also feels that he wouldn’t be able to do this operation without putting a bag in me. Even though I would only have the bag for about 6-8 weeks, he thinks that it would really cause me a lot of problems. He said that “This is a rather extreme case and I am afraid that there would be likely problems or issues with the anastomosis.” So he would rather me go to a surgeon who can handle me and do it without living me a permanent or temporary ileostomy.

Even though I was really upset that the doctor backed out, I understood where the doctor was coming from and to tell you the truth… I rather go to a doctor who will definitely be able to do the surgery without having to have the bag at all. After all… even though the bag is only planned to be “temporary,” anything is possible and I don’t want to have it permanent. Even having it for 1 day though would be too much because I really don’t want the bag. So I am glad that I will be going to a doctor that will hopefully be able to do it without having the chance of this occurring.

The surgeon didn’t leave me in the lurch completely though. He did give me some direction, as he told me some names to see. He really wanted me to see a top surgeon in the Cleveland Clinic and therefore, I called over there and we are heading over to the Clinic at the end of the month. So we will see what this surgeon has to say. Hopefully this surgeon will be willing to do it.

I had 2 ways of possibly going. I could either go with having my colon completely removed or I can also have a transplant. However, after speaking to the surgeon, the surgeon said that even though having a colon is ideally better because it does provide a function to your life, it really would be better in my situation to have it just removed instead of having the transplant. He said that the anti-rejection drugs that I would have to take for the rest of my life would have too many downsides and therefore, it would not be a good idea to go that route. After all, the anti-rejection drugs could cause so many problems and even cause me to die because they are so powerful. So it is just better not to open another can of worms and just have the colon removed.

We now have to decide though what to do about California, as it plays a role as to when we will be heading to the Cleveland Clinic. We are supposed to be going back to California for the last test before I was supposed to have the surgery. I was supposed to have an exploratory surgery that entails having a colonic manometry and colonic transit study. During this time there will also be a catheter placement in the cecum.

We are scheduled to go to Cleveland Clinic either July 29th or the following week, August 5th. However, it is all dependent on California because California is scheduled for the 29th and therefore if we end up going there, of course that means that we will have to go to Cleveland on the later date. However, we don’t know what to do and when we asked the doctor’s office in Cleveland what to do, the response was that they can’t give us an answer without first meeting with us. They did say though that “The more information the better we are!” However, I do have a lot of information as my records are so thick with office notes, tests, procedure notes, etc. It is like a textbook in itself. So I don’t know what to do because it is a huge trip to undergo if unneeded. We don’t know if the surgeons are going to need it before proceeding with the operation and we don’t know if possibly it can even be done at Cleveland Clinic, which will also eliminate the need to go to Cali. Not only is it a huge trip and hard on my body because it is across the country, but it is hard financially too. We can barely afford anything as it is. We don’t even know how we are going to afford one of these trips…let alone both. I would hate to not have the test and then be told that it is necessary and have to go back for it. It would only waste time… time we don’t have.

10536823_10101203776848530_6907075928595070965_oSo that appears to be the big news.  Just wanted to let you know the big change of plans.  I am not feeling well so I am going to try to rest.   But before  I go, I wanna share something funny!  A good friend of mine always comes over my house and always wants ice. Since we never have any ice in the house, guess what he did?  He went out and bought us ice trays so that there can be no excuse not to have ice.  I think of course he did it more for himself than for us so that he would have ice when he came over, but we are very thankful and appreciative that he did this.  I had a feeling that he bought us this when he asked me what my favorite color was and told me that he bought me a “gift!”  What a great friend!

Like always I want to thank you all for all your support and encouragement. Please continue to pray and spread the word that donations are much needed and greatly appreciated. No donation is ever too little!

Thanks again,
Fallon

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