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.
But 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!