FALLON MIRSKY

Please help SAVE MY LIFE!

December 30, 2014

10885324_10101382988531880_8530022758036903884_nHey-

I am writing tonight because I am hoping that this time next week… I will be hopefully all packed and getting ready to leave for the Cleveland Clinic with my dad. I need to go so desperately because I am rapidly deteriorating and yet, we still don’t know if this trip is going to be possible because we don’t have the magical ingredient to make this all-possible… money. It is amazing how this stupid five-letter word rules the world and makes the ‘impossible’ happen. As P.T. Barnum once said, “Money is a terrible master but an excellent servant.”

Henry David Thoreau said it best when he said, “Wealth is the ability to fully experience life.” Gosh… when you don’t have money, it surely puts limits on everything no matter how hard you might want something, dream of achieving it, and try getting. The bottom line is that without “money,” nothing in life is possible. That is why I am so desperately for the help of others. I desperately need donations because without the help of their donations, I won’t be able to receive the much-needed life-saving treatment that I need to save my life. I am really deteriorating and need desperate help. However, it is so unfortunate that my medical treatment is too expensive and my family can’t afford it on our own.

So I am hoping and praying that we get the money somehow to send me to the Cleveland Clinic. We are scheduled to leave this time next week and hopefully we will be on that flight because my life depends on it. I desperately need to get there and then again on February 1st so that I can get the surgeries to save my life. I am only 32 years old and I am not ready to see the curtains close and for me to die yet. So I am keeping my fingers crossed, as I pray and hope that I will receive donations to allow me to go. If you would like to make a donation or if you can please spread my website link, please do so because the more people that are aware of my situation the better. The website of course is www.gofundme.com/help4Fallon.

I know this website might look a bit different than the previous website that was once was given, but the truth of the matter was that I changed the website because I figured it might do better if people realized the truth that we really don’t have any money whatsoever raised for my medical treatment. Yes we did raise some money on the last site, but it all went towards my medical treatment. We really wanted it to go towards a huge procedure like the ketamine coma in Mexico, but unfortunately it didn’t work out that way because the amount of money we received occurred over the course of 3 years. Through the course of three years, the amount of expenses that we had to put out far outweighed that amount and as a result, we could only use that money for the current medical treatment at that time to buy time. In other words, the money came in drips and drabs and as a result, we never had enough money at one time to do something that would cost a lot of money. Therefore, we were only able to put little Band-Aids on problems in hopes that it would help, but unfortunately, you can’t prevent the inevitable. If I am going to really honestly get better, we really need to take drastic measures and get to the root of the matter. But in doing so, we need the finances and they can’t come in drips and drabs over the course of 3 years. You know?

So I am hoping that this website will be the start of a successful fundraising campaign that will end up saving my life in the end. Please remember this new website and please spread word of it because I need this treatment to save my life. Please remember that the only place SUCCESS becomes before WORD is in the dictionary, so it is going to take some work in order for this to be accomplished. So please help me.

10897784_10101384184599950_9141422603206107379_nI am still pack and planning on going to Cleveland Clinic, as my father and I are hoping to make it to the Cleveland clinic on Tuesday but it’s still very dependent on funds but honestly… It’s getting to be a matter of life and death at this point (like you don’t already know that). But unfortunately I wasn’t born with a silver spoon in my mouth and since it is very expensive… I’m kinda out of luck and just hoping and praying that the much needed funds come in. We are making the preparations though that we are going because we are hoping that it will be a ‘go’ and all will go well with the trip but in reality… Who knows until the very last minute?

Even though we will only be going this time for about a week, we still need plenty of funds because we need to pay for traveling expenses, hotel, doctor appointments, copayments, living expenses, and testing copayments. Everything that I have done at the Cleveland Clinic, whether it is a test (i.e. blood test or an x-ray) or even seeing a doctor will encompass paying at the very least a high copayment, which will clearly add up. The plan when we I go down this time to Cleveland Clinic was to meet with all the top specialists and to finalize everything, go for final testing, etc. so that we can return on February 1st for at least 7 weeks so I can have multiple surgeries to save my life.

But unfortunately, I have really been deteriorating and getting worse and it is at the point that my father and I are honestly scared that once we get there this time that they are going to end up keeping me there. We know that I am getting a lot worse and even though February 1st is not that far away, we don’t know if they are going to let me home or keep me to do “emergency” surgery. Not only have I been suffering in pain more than usual, but know that something happened inside to my colon because of what the doctors here are seeing and from the symptoms I am experiencing. The doctors want me to go for an x-ray to find out definitely what has occurred as they think I have a huge blockage or a twist, but I refuse to go. We already know that I have intussusceptions and blockages in my colon but thankfully in a way my colon has been so “dead” and dilated that I have been able to live with them whereas a normal person would need emergency surgery. So, I refuse to go and get the x-rays to know definitely what it is until we get to the Cleveland Clinic because I don’t need to know ahead of time bad news. We know there is something definitely wrong. Knowing exactly what it is will not change anything except state that there is something else going on that needs “emergency surgery” and if I can’t afford it, I don’t want to know that I have something added to my list of other problems that need help desperately but I can’t get the necessary life-saving treatment because we can’t afford it. So I will just wait until we get to the Cleveland Clinic because I know that whatever is happening is going to need surgery and the only place that is going to be able to occur is at the Cleveland Clinic.

In the mealtime, I went to the ENT doc today and didn’t get good news. To begin with… The doctor didn’t like the way I looked. Then again what doctor does? He said that he could see that I was extremely ‘malnourished’ (like we didn’t know that already) because he could see al the muscle wasting in my face as well as everywhere else. But he said that when you see the muscle wasting in the face like I have… It means it is really bad. I honestly don’t see a good part to it, as I think any malnourishment and muscle wasting is bad. But he said that I need urgent attention and that I need help desperately. He was honestly shocked that I was still even walking around. But then again so are most other doctors.

They don’t know how I am surviving, but somehow I am. I guess I am invincible. Lol. But this person is running out of time and I can honestly feel a huge difference from how I was before and how I am now. The doctors keep saying how I am a ‘time bomb waiting to go off’ but with what is occurring lately and how I’ve been feeling… I think I’ve been detonated. I need help and help now because I’m not going to make it much longer. I keep telling doctors that I am the “Energizer bunny rabbit” and that I just “keep going and going and going” but the truth is that my batteries are being depleted. I really honestly don’t know how much longer that I can hang on. I am so tired from the physical and emotional pain. I just can’t take it anymore.

Anyway, of course I had wax in my ears (like I didn’t know that already). But the amount of discomfort was of course much worse than the amount of wax that was in my ears, but you know that’s to be expected because of my illness and how I am so hypersensitive of everything. The slightest thing is such a MAJOR thing for me. It stinks.

Not only did I have wax, but the doctor has difficulty getting it out too. It turns out that since my body is so deteriorated and so ‘dried out’, the wax was really stuck in the ear canal and it wouldn’t loosen up. So you can just imagine how much pain I was in when he was trying to use his tools to grab the wax and basically tear it off the canal because it refused to come off. I was definitely not a happy camper.

The doctor told me that since I am so dry in my ears that he wants me to put mineral oil in them. Have you ever heard of such a thing? I am a little skeptic of putting anything in my ears, but he says it is necessary to keep them very well lubricated because they were extremely dry and that’s why I was so uncomfortable and why the wax was getting stuck and not coming out easily either.

To make matters worse he looked at my nose because I was complaining about no feeling in the left nostril and difficulty breathing in that nostril as well. I thought perhaps there was a pimple or something in the nostril that was causing some irritation or something but the doctor said that he couldn’t see anything. All he said he saw was be same problem that was in the ears, which was that it was extremely dry and crusty. So he said that I needed to lubricate that as well. So he gave me Aquaphor to put in my nose, which I was really surprised because I always brought of it being a body moisturizer or hand lotion. I never thought it was possible to use it in your nostrils. But whatever works, right?

The doctor did notice though that I drooled a lot. It’s something that I have been extremely self-conscious about and didn’t know why that was occurring. He said that the reason that this was occurring was because of the ketamine. He said that besides the autonomic dysfunction, ketamine is notorious for causing excessive salvation. So at least I know why I am drooling so much. After all… I get so much ketamine in me that there’s no wonder I drool. I have the weekly infusions/comas of ketamine and then I have the ketamine that I take at home in the nasal spray.

I even asked the doctor, “if my mouth is so moist and I am drooling because of the ketamine, why am I so thirsty? In addition, if I am given bags of IV 2 days a week because I am given it when I go for the day when I have the ketamine infusion/coma and then when I go for the intestinal cleaning, why am I so thirsty?” he told me that it was because I am basically all dried up. He said that even though my salivary glands are producing the drooling because of the ketamine, I just can’t quench my thirst because I am extremely dehydrated and all my organs are suffering.

I also told him about the fact that I can’t clear my secretions anymore especially the more that I drink. I am literally drowning in my own fluids. The doctor told me that drinking is the hardest thing for my body to process. He said that in order for me to drink I can ONLY have thick fluids such as slushies and such. But even with that… it just continues to get worse.   I a m just too tired of suffering already.

The doctor was also very scared for the upcoming surgeries at the Cleveland Clinic. He knows how very taxing it will be on my body and how my body is not even up to “surgical condition.” These surgeries that I will be having are one of the most dangerous, radical, and intense surgeries that a person can have especially since they don’t deal with just connecting nerves. These surgeries entail connecting so many vessels within the body and it also encompasses dealing with an area where bacteria flourishes. These surgeries are so complicated that they only do surgeries like the multivisceral transplant in like 6 hospitals throughout the United States.

Well in the morning later today I have the cardiologist. I need to have my heart checked out because it isn’t doing too well also. I am seeing a top-notch heart doctor when I go to the Cleveland Clinic next week. However, I still need a cardiologist in the area in case I am in New York and something happens. I already have severe heart issues that already run in my family such as heart disease and everyone in my dad’s family having sever heart attacks (except him thankfully). I already have coronary calcifications that have to be removed from the coronary artery and severe bradycardia. In fact, my heart rate gets so low that I am always setting off the machines when I go for procedures and everything. Even when I am hospitalized, they have me sleeping with the paddles by my bedside because my heart rate drops so very low and they are so afraid. So we will see what this appointment has to bring. At least by going for this appointment I won’t be in for too many surprises when I see the cardiologist in Cleveland.

Then on Wednesday I have my surgery to clean out my intestines. However, this time is going to be a little different than the previous ones. First of all, I won’t be having my usual GI doctor doing it. I am having his partner do it instead because of the scheduling time. I am kinda happy about having a his partner because it is a new face and brain to go inside me and therefore, maybe he could see something or discover something that my current GI doc was missing… you know? But I am also nervous because since I am so fragile and anything can happen, he doesn’t really know my body and how it reacts to everything like my GI does. After all, I do have the autonomic dysfunction and the slightest thing sets it off. I am sure though that it will be ok and that my current GI doc has told him everything, but I am still nervous.

I am not only getting my intestines cleaned out so that I don’t hopefully rupture them or go into sepsis, but I am also having an endoscopy and having my esophagus looked at as well because my entire GI system is basically dead and I have been having issues especially with my esophagus lately too. Since my esophagus doesn’t move, pills do not usually dissolve in the stomach where they should be dissolving. Instead, they end up being dislodged in my esophagus and dissolving there, which is extremely painful. In fact, there are so many times that the doctors have to literally go inside me and actually push the pills down because they see that they are stuck in the esophagus and not moving. So, I really don’t know if it is because of this factor but I am having a really hard time swallowing because it burns going down. It literally feels like my esophagus is burnt to a crisp. So the doctors want to see what exactly is going on.

So there is never a dull moment. Thursday is New Years Day. I will be spending it as I always do. I will probably be in my bed watching the ball drop with my cat, Missy. It is just another year, but hopefully this will ne the upcoming year that I will get well and get my life back.

Speaking of Missy, she has been getting hilarious. Her new thing now is that when she wants to eat in the morning she will keep nudging my dad until he gets up. However, if he doesn’t move fast enough, guess what she ends up doing? She will end up biting his nose. I think it is so funny.

I also have scheduled another ketamine coma before I leave for Cleveland. Hopefully I will be able to go on Friday instead of when it is originally scheduled, which is Monday. I really hope I will be able to change it because not only am I suffering and need it ASAP, but it will be really hard to undergo ketamine and then get on a plane the following morning to go to Cleveland. After all, even though I love to go under ketamine and it really does help me, the after effects are not really al that pleasant and my body kind of “pays me back” too for messing around with it.

Plus… it takes a few days for my body to acclimate back to the way my body usually is after Ketamine. Even though I feel so much better under ketamine, when I come out of ketamine, I end up feeling a bit worse for a while because of the autonomic dysfunction and everything and it takes a while for my body to stabilize. However, I have an appointment in Cleveland with the top doc for my disease, as there are only very few doctors that are knowledgeable about my illness and he is one of them, and therefore, I want him to see the true disease and everything so that he knows how best to treat me. I know that there has been talk of having brain surgery so that they can put a machine in my brain, as well as other things, and that is why I think it is important to see how I am on a typical day with this illness and not when my body is fluctuating and trying to re-stabilize itself after having the ketamine. You know? Plus, it means also one more day for my dad to take off and it makes it even more difficult especially since it is exactly the day before we leave.

My dad keeps saying that he is only bringing a week’s worth of clothes. I told him that I am doing the same. If anything, he is going to learn how to do the wash. He laughs over this. To see my dad actually doing the wash… it would be funny actually.

So that appears to be all that is happening. I really don’t know how to pack or what to expect because even though I am only supposed to be going to Cleveland Clinic for the week, which is just to see some specialists, finalize some things, and do the final tests so that when I come back February 1st I will be able to undergo the surgeries that I need to save my life, I am so afraid that they will end up keeping me there now because of what is happening in my intestines. Part of me says that no matter what that they will save it until when I come back in February because they need to do the heart surgery first so that the central line can be put in and this way they will not only have central and emergency access into me, but they will also have a way of administering TPN into me under ketamine directly into my heart and making me stronger hopefully for the surgeries so I can better survive it. But then on the next breath I know something is seriously wrong because it feels like I am kicked on the side and I can’t get up from it and nothing is moving through… not even gas, so it is kinda an emergency. So…. Everything is just a plain mess! So I guess we will have to see what happens or if I get further information from Cleveland as we get closer because I plan on speaking with them as well and seeing what they say prior to going down.

So it has been a long week already and it will be a long and tiring week until we hopefully leave, which I am hoping and praying that we do. I desperately need to go because I am getting so bad. I can’t even manage to get out of bed anymore. I literally go to bed at 9 PM and can’t get out of bed until noon the next day. By the time I get up, it is time to take meds, eat, vomit, and the cycle starts all over again. This isn’t a life to have. I would do anything to have my life back. I can’t take the suffering anymore… both physically and emotionally. There is not a second that doesn’t go by that I don’t suffer except when I am under anesthesia or ketamine, which I wish I could live under permanently. I have to literally change my bed sheets every day because I keep spitting up blood all throughout the night and when I wake up my bedding is covered in blood, as well as drool. I

1602087_10101383726996990_1131379420405191149_oMy dad keeps promising that he is “not going to let me die” and that he is going to get me to Cleveland. But he and I both know it is not in his hands. I know that if he could do anything that he would. I know that if he could take this illness away…even for a second… he would, but unfortunately he can’t. He wouldn’t be able to handle this illness anyway. After all, I don’t wish this on my worse enemy. It is the worst thing you can ever imagine. I hate seeing the pain in my father’s eyes because he wants so desperately to help me and yet… he knows that no matter how much he wants to and how hard he tries… he just can’t. He even works so hard to try to get me the money so I can get the needed lifesaving treatments and he can’t even do that. So I know it is really taking a toll on him. I am so afraid that something is going to happen to him with all this stress. If something would ever happen to my dad… I would never forgive myself. After all, he is my dad, my superman, and my best friend. I would be lost and never even be here today if it wasn’t for him.

I hate ruining my parents lives because they can’t do anything because of me and they have no money because of me. They are working harder than ever and have nothing to show for it because of me. The are in such financial debt because of me. They should be at a point in their lives where they should be enjoying themselves. Instead… they are suffering and working harder than ever because of me. I know it hurts them that they can’t go out and how they see other couples going out, other families going on vacation, going out for dinner, doing fun things, etc. and we cannot. I just wish that I could make it better for them.

Well, in the meantime that I am awaiting to go to Cleveland Clinic, I have been on a movie frenzy. I have been in so much pain and since I can’t really do anything out-of-bed, I have been watching plenty of movies. I have seen GONE GIRL (which was very good), ANNIE (which was pretty good but kinda childish), THE INTERVIEW (only wanted to see it because of the big deal over it, but it really stunk), JUMP STREET 22 (very good), and THIS IS WHERE I LEAVE YOU (absolutely loved). I am awaiting to see INTO THE WOODS. I can’t wait to see that movie. That was actually the first play I ever saw on Broadway.

I have also tried doing some reading. I am reading Sophie Kinsella’s new book called “SHOPAHOLIC TO THE STARS!” I love this author. She writes really great books. I just actually found out that one of her books, CONFESSIONS OF A SHOPAHOLIC was made into a movie. I am going to have to check that out.

I have also made my dad a FACEBOOK page finally. He has been joining the 21st century slowly but surely. It has taken him awhile and he has been fighting it tooth and nail, but each time he does something, he loves it so much and can’t stop using it. It took him forever to get an iPhone and now that he has one, he can’t keep off of it. It’s like he best thing to happen to happen I to him. So check out his new profile on Facebook (Perry Mirsky) and add him as a friend.

Well… I guess I wrote enough for tonight. Please honestly help me raise money so that I can get the lifesaving treatment I that I need so badly. Any help that you can give me, I would really appreciate. If you have any comments or questions on how you can help, please contact me at Femirsky@gmail.com. If you can, please spread the link of my fundraising site, which is www.gofundme.com/help4Falllon because I desperately need help and all donations are appreciative. Even the littlest donation makes a difference because that makes it less that we have to come up with and makes it closer for us to get to Cleveland. As Theodore Roosevelt once said, “Believe you can and you are halfway there!” I really believe that there are nice, generous and caring people in the world who would be willing to help me by giving me a thoughtful donation so that I can get the lifesaving treatment that I desperately need. It is so sad how Money alone sets all the world in motion!

1656433_10101040042762950_526420285_nWe are also still selling bracelets that come in pink or blue for $5 each. They say “HELP FALLON FIGHT” and they are the ‘livestrong” bracelets that you usually see people wearing. If interested, please let me know at Femirsky@gmail.com.

Thanks again for all your encouragement and support.

Hope you had a great Holiday season. Happy a happy and healthy New Year if I don’t write again beforehand.

Love,

Fallon

1 Comment »

December 26, 2014

1965467_10101379053143430_2107049223638001410_oHi!

I figured that since I started this new website, I should introduce myself and let you know a little about me. This site is not only a way of enabling me to blog, but also a way to fundraise money for life-saving treatment that I desperately need in order to stay alive. I am rapidly deteriorating and unfortunately, my treatment is too expensive for my family to afford alone. So… unless I receive donations, I won’t be able to get the very much-needed lifesaving treatment that I desperately need. I also wanted to always make a difference in the world and therefore, I am hoping that this website will also bring awareness to my illness, which is rare, extremely painful and debilitating, and life threatening.

This blog is about coming to terms with the life you have. I would like to tell you all about me without mentioning illness once, but that isn’t the life I have. Unfortunately, I have been struck with life-threatening illnesses that are extremely painful and I will soon die from unless I get help from. I suffer from Reflex Sympathetic Dystrophy, severe dysautonomia, severe gastroparesis, osteonecrosis, and a pituitary brain tumor.

It is very hard to actually understand my illness because it’s not easy for people to see. My entire nervous system is basically out of whack, and the part of my brain that controls my autonomic nervous system (which controls all the body’s autonomic functions) doesn’t work properly.

Dysautonomia is malfunction of the autonomic nervous system. The autonomic nervous system controls the “autonomic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with dysautonomia have trouble regulating these symptoms and can result in various problems like I have such as fainting, unstable blood pressure, abnormal heart rates, malnutrition, and even death.

The autonomic nervous system is composed of two branches: the Sympathetic Nervous System (SNS) and the Parasympathetic Nervous System (PNS). The SNS controls the more active “fight or flight” responses such as increased heart rate and blood pressure, whereas the PNS can be thought of as the “rest and digest” part because it slows down the heart rate and aides in digestion. In a healthy person, these systems are balanced and react correctly to outside stimuli, such as temperature, stress, and gravity. When they are out of balance and do not function properly, autonomic dysfunction (or dysautonomia) occur. People with dysautonomia, like me, have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, bradycardia, gastroparesis, and more

I never thought that this would happen to me. I was always a happy, intelligent, and competitive person. I received excellent grades, was a competitive figure skater, a superb violinist who was Concert Mistress and even scored a perfect score on the highest level of competition, and had a wonderful social life. I even aspired and dreamed of becoming a doctor so that I could help others. However, what my life was up through high school and what it is now has done a total 180.

I was diagnosed in college with this illness. Even though I did have symptoms prior to having foot surgery in college, it definitely became apparent that I had this illness after I went for that surgery because so many aspects of my autonomic nervous system were demanding attention. I became crippled with pain 24/7, my GI track shut down, I was fainting, I received pain signals that were way out of proportion, etc. It appeared that my entire body was on a “fight or flight” response and it couldn’t be shut off.

My disease has been progressive and it hasn’t been easy to watch my life just be taken from me. , I have spent the last couple of years incapacitated, paralyzed, and unable to sit, walk, or even eat. This disease is excruciatingly painful all throughout my body 24/7. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. RSD is characterized by: continuous sharp, stabbing & burning pain; extreme sensitivity to touch; severe headaches; painful skin ulcers; intense muscle spams; softening of bones; dystonia; skin temperature & color changes; hair/nail growth changes; muscle atrophy; vascular & Autonomic dysfunction; sensitivity to lights & sounds and paralysis. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.

Eventually according to doctors, I will have catastrophic autonomic failure. That means an end to even the most important Autonomic Nervous System functions… even breathing. But, that is something I am hoping to delay and hoping to avoid. That is why I am begging and pleading for help. I desperately need medical treatment, but unfortunately we cannot afford it. That is why I am asking for donations. It doesn’t matter how much is donated because all is appreciated. Even $1 is one less dollar than we have to come up with.

So in the meantime, I am busy trying to hold on and praying that I will be able to receive the treatment that I need to save my life. I am building memories not only for myself, but so my family will have them as well. I am only hoping that I will one day regain the life that I was robbed and I will be able to become that doctor that I always dreamt of being so that I can help others and they won’t have to suffer like I am.

Sometimes it is hard for people to grasp how very sick I am. I try my hardest to look my very best because I believe that if you “look good… you feel good!!” So beneath all that makeup that one sees is a person that is very ill and needs desperate help NOW.

The New Year is quickly approaching and that means that it is a time to start over. I only hope and pray that this will be my year… a year that I will be able to get well and am normal.  It better be because I don’t know honestly how much more of this I can take. My body is just giving up. My entire GI track is basically ‘dead.’

I also have severe autonomic dysfunction and severe Gastroparesis, as my small and large intestines, stomach, and esophagus are all paralyzed and I cannot swallow. Gastroparesis interferes with digestion, causes nausea and vomiting, and causes problems with blood sugar levels and nutrition; I cannot keep any food or liquids in me, and I vomit constantly. Doctors tried TPN on me and other ways of feeding me, but they all failed. My body is just shutting down. As a result, I have dwindled down to weighing only in the 60 plus pound range and having a BMI of about 10.8.   In addition, it is causing me to aspirate into my lungs, which is leading to difficulty breathing and can cause life-threatening pneumonia. Doctors do not know how I am currently living with all that is happening to me, but I am still pushing on and hoping for a day that I am ‘cured’ and able to live my life to the fullest!

Despite medications and treatments, I just continue to deteriorate.   In terms of procedures, I have undergone surgeries such as implanting a stimulator (which had to be removed), sympathectomy, epidurals, Botox, etc. I also tried aquatherapy, blocks, physical therapy, occupational therapy, massage therapy, acupuncture, ketamine infusions, and hyperbaric therapy. I take over 50 pills and injections daily just to get by. Such medications include laxatives, morphine, dilaudid, ketamine and more. My medications are extremely expensive and I can’t even get them all in the United States. This forces me to pay all out-of-pocket for them because they are gotten in other countries.

Many doctors have told me that the amount of medications that I am taking would be enough to “kill a horse”—yet they have had little to no effect on me. I have even been undergoing weekly ketamine comas just to try to alleviate the pain and hope that the disease doesn’t continue to spread like a wildflower. I have deteriorated so much and the pain has been so profound that I must undergo the most extreme and expensive of therapies—being placed under a Ketamine coma—to hopefully reset the pain connections of the body and fix the nervous system. This coma in Mexico is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Patients are supported by a ventilator and monitored in the ICU.   There are significant risks, but it continues to be my only hope because there are really no other options available. For the patients that have had it previously, it has worked “miracles.” Unless something is done soon, I will die.

But unfortunately, the amount of ketamine that I really do require is not FDA approved and can only be done outside the USA, which is in Mexico. I would love to go to Mexico to have this radical coma, but unfortunately it is so expensive and will cost us over $100,000. So I am only hoping that through donations that one-day I will be able to get that coma because that is the only real way to “cure” the autonomic problem. I will be the 38th patient to undergo it.

But a more important and imperative treatment right now is that I get to the Cleveland Clinic for massive surgeries. Since I have severe gastroparesis, I cannot eat and my GI track is basically dead. I only weigh in the 60s. I need and require is a complete colectomy. I have toxins spilling into my bloodstream that is poisoning my organs and brain and shutting them down as well. Unless something is done quickly, I will soon die. I also require a multivisceral transplant, which entails getting a new stomach, small and large intestine, pancreas, and liver. However, we won’t know until the colon is removed how urgent it is needed to have that transplant because it is all dependent on what the small intestines looks like.

I am scheduled to have massive surgeries in Cleveland starting February 1st. However, it is all contingent on whether we have the funds. It is going to be extremely expensive, as we will be there for at least 6-7 weeks. In addition, my father will be with me during this time and as a result, he won’t be able to work and make an income during this time. So it will be even harder than ever for us to pay for something like this because he won’t be pulling an income. Not only can’t we pay for my current treatment, but also we exhausted so much money on my illness that the bills are just snow blowing out of proportion. We are having an extremely difficult time paying all our bills including mortgage, heating, water, phone, etc. Even putting food on the table is difficult because of the lack of money in combination with the high prices of food. But if I am going to have a chance of living, I have to go in February to have these surgeries.

What a way to celebrate a birthday! My birthday will be during that time, as it is February 7th. But what better present would there be than getting my life back? I am only hoping that this will be how it goes and how it works out.

I am scheduled to undergo heart surgery February 2nd, as I need to have central lines placed in me and calcifications removed out of the coronary artery. It is so important to have these central lines placed because of how ill I am getting. It will give them an emergency access port into me so that I can be given medications and everything. Plus, it will save me from being stuck all the time with needles. I not only need it because of how sick I am getting, but I need it for the upcoming surgery because it is extremely massive and will definitely need that “emergency” port. The doctors also want to use that port to deliver TPN to me for about 2 weeks prior to the massive surgery to remove my colon. Since I only weigh in the 60s, I really have no reserves to survive the surgery or to ‘recover.’ If I should get an infection, it would really be devastating. So the doctors are hoping that by giving me some TPN, it will help me better recover.

I have had feeding tubes in the past, but they have all failed me. I have had nasogastric tubes, G-tubes, J-tubes, etc. but they all haven’t worked because of how sensitive I am. I can’t tolerate anything that is “strange” or “foreign” from entering my body because it stirs up my autonomic nervous system and causes it to further malfunction. Even having an IV in me is a killer because I can literally feel the fluid running through my veins. No matter how little they titrate the amount, I can always feel it, and it causes me severe pain and discomfort. However, this time they are hoping by placing the TPN in a central line such as in the neck and directly into the heart in combination with keeping me on ketamine, they are hoping that I will be able to tolerate it. So we will see. We are keeping our fingers crossed.

I am having such a difficult time eating. Even the very few things that I was able to enjoy beforehand are not able to get down now. I basically just live on ice cream and egg whites… and even that is starting to get impossible to get down. Even medication is horrible to get down, so in a way I am kind of excited to get the Central Line because it will save me from having to swallow all those pills because they are getting so difficult to do so. Even drinking is getting to be impossible as well. I can only drink liquids that are made into slushies. The reason is that it slows the rate that it enters my body and the amount. Even the slightest amount that is too much or consumed too fast for my body will cause extreme havoc on my body and cause exacerbation of the autonomic dysfunction.

If all goes well, I will be having my colon removed on February 18th. It is a massive procedure and the doctors honestly can’t wait to get that colon out of me. It is causing me a lot of harm because it is not only ‘dead’ and extremely dilated, but it is causing food, drugs, etc. from not to pass through and as a result, I am getting toxins to spill into my bloodstream from the colon and it is poisoning my organs and brain and shutting them down. I am essentially dying because of my colon being so ‘dead’ and these poisons being spilled into my bloodstream.

That is why I have to go every week to the hospital to have surgery on my colon to get them ‘cleaned out.’ We do this to hopefully buy us time until we get to Cleveland and as a way to keep me more comfortable as well. Since nothing passes through the colon, this is the only way of removing whatever is in the colon and hopefully limiting the amount of toxins that are entering my bloodstream. My colon is also extremely dilated because nothing passes through and therefore it has to be decompressed through this procedure as well. The doctors are fearful that if I am not decompressed that I will end up rupturing my colon and going into Sepsis. If that should happen, I will die.

The doctors can’t wait to see what this colon actually looks like. It is so dilated and floppy that it actually takes more than one doctor to navigate through my colon. We usually need multiple people in the room to help the doctor because the colon is so floppy. Thank goodness in a way though I have such a ‘dilated’ colon because I have lots of intussusceptions and normally a person cannot live with them. However, due to how dilated my colon is, I have been able to live with them up until now. However, it has gotten so bad recently that I can no longer put it off and it just has to come out.

So we are hopefully heading to Cleveland for the mega surgeries February 1st. But in the meantime also we are supposed to go to Cleveland for the week of January 6th to meet with some doctors and finalize everything for surgery. I have to meet with the heart doctor, GI doctor, pain doctor, etc. So we really are hoping to receive donations for this as well because we really need help with everything.

It is a long exhausting road, but unfortunately I have no other choice but to undergo these treatments. I am severely sick and desperately need your help. The doctors are even talking about brain surgery and putting a machine in my brain. Yet, in order for any of this to occur and for me to continue receiving treatment, I desperately need the help of others because we are so financially burdened from my medical bills that we can no longer afford my medical expenses. Since no one does anything for free, I am only hoping that other people will understand where I am coming from and help to donate whatever they can so that I can receive the very lifesaving treatment that I need, as well as continue to receive the current medication regime that I am taking, which isn’t cheap either.

Christmas came today and I was hoping for a Christmas miracle. We really haven’t celebrated any of the holidays this year. We couldn’t afford to. I can’t remember the last time my family and I did anything FUN anymore. I feel so bad for what I have done to my family because they have also been suffering and going through this with me. They may not have had the physical pain of this illness, but they have had the emotional pain and suffering, and they have been by my side from the very beginning. I feel so bad because they are working harder than ever and they have nothing to show for it. No matter what they do, they can’t help me because it is way beyond them. We haven’t been on a vacation in so many years, I can’t remember the last time we went out and did a family activity, I can’t even remember the last time we had dinner out, etc. This illness not only wrecked my life, but the lives of my family as well.

10869539_10101372143280850_8677436708977895777_oSpeaking of family… thank goodness for my pets. They really have been my best of friends. To think… I used have so many friends before I got sick. But you know how the saying goes… “You know who your true friends and family are when you are sick!” The amount of people who actually stuck by my side can basically be counted on one hand. It is said that I was always a person to be there for others and now that I need the help… I have no one. But at least I have my animals. They are especially special to me because since I don’t really go out, they are great to be with. 10553812_10101379387862650_5816219398568856490_oMy cat, Missy, spends the nights with me and literally ‘babysits’ me. She awakens my parents and alerts them to anything that might be happening to me. My dog, Max, is a great cuddler too as he spends the days on the couch with me. I also have a turtle named George who stays in the corner of his cage and watches me. My dad says that he stays in the corner so he can ‘watch’ me and also ‘watch’ television. Even though I take care of my animals, it really is amazing how well my animals take care of me too. I am really so lucky that I 10547208_10101225746620930_8296315936193166401_ohave them.

Please help me because I am running out of time. The doctors have said I am a “time bomb just waiting to explode.” It has gotten really bad recently, as I don’t really even have my “good” days anymore. I used to have a few good days every so often…not many but a few. But now… I am not even bouncing back at all. I just continue to go downhill and there are so many times that we don’t even know if I am going to make it through a day or night. Yet, we can’t even go to any hospital or see any doctor because there are very limited doctors and hospitals that are familiar and capable of handling my situation. If I go to a hospital or see a doctor who isn’t fully knowledgeable about my condition, they can really make me worse.   I can’t be treated like a typical patient, as everything is “magnified” for me. A simple needle stick is like someone sticking a knife through me. A simple cold is like getting the flu for me. Any wrong move can really set off my autonomic nervous system, which can really end up causing further problems and even killing me. So we are forced to travel across the country to seek the help of specialists at places such as in California, Cleveland Clinic, Mayo Clinic, Florida, and Mexico.

In addition, even getting up is getting to be impossible. Although when I am around people, I try to look my best because I like to try to conceal my illness as much as possible, it literally takes everything out of me to get out of bed lately. I have literally been sleeping the days away because I am too weak to get out of bed. I basically am in bed by 9 PM and I don’t get out of bed until noon the next day. Then its medication, eating, vomiting, etc. and before you know it… the day is over already. Even though I was sick before, it is as if I have had all my energy zapped from me nowadays.

I don’t know what is up but it is scaring me because not only am I feeling so weak, but it is getting even more difficult to breathe as well. I have been aspirating like crazy and you can hear the mucous in my lungs every time I breathe. My dad tried to bring up the oxygen machine in order to try to help me to breathe, but nothing is working. I am just so uncomfortable and no matter what I do… I can’t ever feel better.

I am not going to lie that I am not scared for all these treatments. But for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself!! I have lost even the simplest things in life that people take for granted… eating, walking, taking showers, even having “FUN.” My goal is to one day become a doctor. I will be a great doctor because when a patient comes to me and says, “Doctor, I am in pain and words cannot express how bad it is,” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”

Well… I just wanted to really introduce a little what is happening and ask for your help. I have tried various ways of fundraising already, but they haven’t really worked. I tried contacting the media, writing on Facebook, etc. but you know how it goes… it isn’t what you know but who you know … and unfortunately I don’t know anyone. So I am kind of out of luck in that area and would appreciate it immensely if someone can please help me out. I really need as much help as possible and I am hoping that you will be able to help me whether it is by spreading this link to others, saying a prayer, or even making a donation. Remember… all donations are appreciative and no donation is ever too small.

Any help would be much appreciated. I have an ongoing blog with pictures at http://www.FallonMirsky.wordpress.com and fundraising site at http://www.gofundme.com/help4Fallon. A YouTube video is found at http://youtu.be/tRyEp1V6IGs and http://youtu.be/aDxDpsMck4Q.

1602127_10101039391692700_874790554_oI am also selling “livestrong” bracelets that are custom made to my disease as a way of helping to raise money and awareness for my illness. The bracelets come in two sizes (youth and adult) and in two colors (pink and blue). Each brackelet is $5 and all money goes towards my medical treatment. The bracelets say “Help Fallon Fight” along withmy website. If interested, please contact me at Femirsky@gmail.com

Happy Holidays and Happy New Year.

Love,

Fallon

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December 20, 2014

10644854_10101373228076910_8243199541287683290_nHi-

I just wanted to write a quick blog and say HAPPY HOLIDAYS to everyone. I would like to wish each and every one of you all the very best in this holiday season and I only wish you to have a very Happy and Healthy New Year. I hope that 2015 will be a better year for everyone… including me!

Even though it is the holiday season and it is supposed to be a very “happy” time of year, it isn’t so very happy for me. Unfortunately, we aren’t really celebrating the holidays this year because we don’t have the money to do so. I should have been in Cleveland right now getting the lifesaving surgery that I desperately needed, but unfortunately we couldn’t come up with the needed funds and since no one does anything for “free”… we had to delay our plans for February. So we are only hoping and praying that it will all work out that I will be able to receive these lifesaving surgeries then because I really desperately need them and I don’t know honestly how much longer I can last without them. We don’t honestly even know if I will even make it to February, but I am strong-willed and I am going to hold on until then.

I can’t say that these last couple of weeks has been “easy” or even the same as what I have been used to. I am really in a rapid downhill fall. I am rapidly deteriorating and unless I get these surgeries really fast, I am not going to make it much longer. It pains my parents that they can’t get me the treatments that I need to save my life. I see it in their eyes in that they want to help me so badly and their hands are tied. We have done everything that we could do, but unfortunately our finances are strapped and we cannot afford my treatments any longer. The bills have grown like a wildflower all over the place and we can’t even pay our mortgage and can’t even put food on our table. You know it is bad when we are scavenging around trying to think about how we are even going to get money to pay for the food for the week. Gosh… I never thought that this would happen to me. I never thought for once I would ever be at a point in my life where I would be at risk of losing everything. Not only has this disease taken everything personally from me such as eating, walking, friends, family, etc. but also now this disease is even taking over and affecting my family in ways that is beyond belief. It is causing my family to literally have at risk the house being taken away because we can’t afford so many bills that are necessary to be paid in order to live. We can’t afford the mortgage, food, even a down payment for a new car because our old Altima’s lease is up. My dad is working harder then ever and is busy taking care of me and also taking me to all my appointments. He is like superman but I am so afraid that something is going to happen to him because even though he tries to be a superhero, he is getting old and he is working so hard. Between the work and stress… I am so worried that he’s going to have a heart attack or something. After all… He is not only my dad but my very best friend and hero. He lasts jokes with me (except he isn’t joking) that he is superman and nothing can stop him and will be fine as long as no one gives him kryptonite.

But the bottom line is that I desperately need treatment and since my treatment is not free… we desperately need help from others in order for me to get the lifesaving treatment that I desperately need. Right now things have gone from really bad to even worse. I am barely hanging on, but I am still trying to hold on because I still have that hope that I will be able to get that treatment that I desperately need and it will save my life. I still have that glimmer of hope that I will be able to regain my life and all this madness will be able to disappear and I will be able to become my dream of becoming a doctor so that I can help others. I keep closing my eyes and dreaming that I am going to become that doctor and that “normal” person again. I dream about the day when I will be able to have a social life and a family. I dream of the day that I will have a LIFE to enjoy.

If only these dreams will come true. I know it is the holiday season, and the best gift of course that I can be given is that “miracle” of being cured. But lets be realistic because I know that is not going to happen. Miracles like that don’t happen. But I do know that the second best gift that anyone can give me is a donation. It doesn’t matter how small the donation it is, but all donations are definitely appreciated because even that $1 is one less dollar that I have to come up with and it will help pay for my medication, treatments, etc. which I wouldn’t be able to get if I didn’t have it. You know? So as this season is known as the “season for giving” and if you should find maybe a dollar lying around… please think about donating it to my fund because that little amount can go towards saving my life, which could be making such a huge difference in my life!! You can help make something so little become something that can potentially make such a difference because you will essentially be helping me get my life back…. Which is the best and biggest gift that anyone can ever receive. Plus… if you can pray for me and spread word of my website (www.gofundme.com/FallonMirsky) I would really appreciate it. Like I said before… any help is definitely appreciated!!

Suffering with a rare and life-threatening illness that is extremely debilitating, I am really deteriorating. As I have said before, I suffer a severe neurological disease known as Reflex Sympathetic Dystrophy, severe Autonomic Dysfunction, severe Gastroparesis, Osteonecrosis, and a pituitary brain tumor. I never thought that someone who was an “A” student and a competitive figure skater and a top violinist would suffer from something like this and have my entire body fall and succumb to this illness and fail me like dominos. I desperately need help before it is too late. You never realize how lucky you have it when you have your health. “Health is definitely wealth” and if there is anything that I have learned through this disease is that you should never ever take ANYTHING for granted… even if you think it is trivial and wouldn’t make a difference. For instance, I never thought I wouldn’t be able to eat, walk, shower, and stay out in the sun, etc. especially at the age of 32 years old. I am too young for this.

I need your help so I can get the funds that I need so I can get the funds for the surgeries that are scheduled for February. Until then, I have to hang on, which is getting harder and harder. The doctors are even getting even more fearful that I am not going to make it because I am getting weaker by the day.

I spend most of the time in bed nowadays. Most of my energy is zapped from my body. I guess it is to be expected because I have been fighting so long and I only weigh in the 60s. I am literally in bed by 8:30 at night and I can’t get out of bed until after 12 in the afternoon. It just takes so much energy for me to even lift my head up. I even fret when I have to go to the bathroom, which is right next door to my bedroom because it entails getting up out of bed and walking. I just don’t have the energy to do anything.

Thankfully I have my pets to stay with me. My cat, Missy, has been my very best friend. She stays by my side and stays in bed with me from the moment I go to bed at night until I get out of bed in the morning (well actually afternoon). My parents call her my ‘babysitter’ because there are times when I am not doing well and she alerts my parents about me. It really is something. I am so lucky to have her. I don’t know what I would do without her.

By the time I get up finally out of bed, the day just basically encompasses eating, taking meds, and throwing up. By the time that is all done… it is time to go back to bed. I get so exhausted and I get so much weaker after I eat and throw up. I constantly wonder if I am going to make it through another night. Even my parents are leery about that. I gurgle when I breathe and have extremely difficult time breathing. My dad keeps asking me if I want to go to the hospital and I really do, but the problem is that there really isn’t any place to go.

I would really love to go to the hospital. We all know that I definitely belong in a hospital. But unfortunately no hospital around here can help me. If I went to a hospital around here, it would only hurt me because I can’t be treated like a “normal” person. I need specialized treatment and since my diseases are so rare and everything… I need to go to a hospital that is situated and knows how to deal with my disease. After all, I need a multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, pancreas, and liver, and there are only 6 hospitals in the country that do this. Thankfully the Cleveland Clinic is one of them.

I desperately need to get to the Cleveland Clinic ASAP because that is where I am supposed to be having the upcoming surgeries and where they are familiar with my illness. However, it isn’t that easy because we don’t have the funds to do this. I will have to be there for at least 2 months, and that also means my dad will have to be with me as well. The doctors have already stated that I can’t be left there alone and therefore, my dad won’t be able to leave and go back home to work. So we don’t know how on earth we are even going to make money to pay the bills especially when we can’t even afford them now. So that is why it is so desperately needed that we get the funds to help us out now.

In the meantime, since we are scheduled to have the surgeries in February, we have to get me to that time. It is getting harder and harder though because I am deteriorating. It is getting harder and harder to even go to the bathroom. Everytime I go to the bathroom, I end up vomiting because I have severe gastroparesis and as a result, my intestines are completely dead. I have even already passed out and my dad has found me unconscious on the bathroom floor because I am unable to go to the bathroom. The toxins are just spreading because things are just sitting in my intestines and colon and I can’t get them out because my entire GI tract is essentially ‘dead.’ So my body is becoming intoxicated and being poisoned!!

I was going every Friday for my intestines to be cleaned out, but with the holidays and everything, it is not able to occur anymore. The doctors are very fearful of what is going to happen now because I can’t move anything through and these surgeries on Friday are the only things that “help.” Not only does it help move things along so that it doesn’t remain in my GI tract and it helps prevent the sepsis from occurring and my intestines from rupturing, but it also makes me feel better. I used to really look forward to this day because of how much better I felt after the procedure but now since it is the holidays nad everything… the doctor has no time to do it. So I have really been suffering and there is nothing the doctor really can do about it. He is trying his best though to fit me into the schedule or to have one of his partners do the procedures on me. Hopefully something will be able to work out because I won’t make it without it.

In addition, I have to make an appointment to see the cardiologist ASAP. My heart is not doing well and I am gurgling like crazy. We know that I am aspirating because of the severe gastroparesis and that my heart is greatly being affected by the autonomic dysfunction, but the doctors want me to see the cardiologist ASAP because things are getting so bad. Even though we are scheduled to have the major surgeries in Cleveland in February, we are supposed to be headed to Cleveland Clinic for about a week in January (January 6th -9th) to finalize everything and to see specific specialists. One particular specialist that we are supposed to see is the cardiologist who is supposed to be very well known. He is listed under the 50 best doctors that Cleveland Clinic ever had and he was also trained under the legendary doctor named Sones. Sones was a great cardiologist that discovered a way to form a road map of the heart for medicine and surgery. He injected dye into the coronary arteries, which allowed the arteries to show up on X-rays and gave cardiologists the opportunity to identify obstructions in blood circulation. Sones’ innovation made possible, for the first time, accurate diagnosis of coronary disease and set the stage for the modern era of cardiology and cardiac surgery. So you can just imagine how great a doctor this doctor I am seeing is. However, I still need a doctor in New York in case something happens in an emergency and with everything happening, my doctor literally told me today that he wants me calling the new cardiologist first thing Monday morning and making an appointment.

I just need help and need help fast. We always knew that I had an intussusception in my colon, which is a twist that is life-threatening if not treated. However, thankfully (if you want to say it like that) my colon was so dilated and floppy that I was able to live with it until now. However, it has gotten so bad now that I have to get it taken out right now. It is now in an emergency state that I have to get it taken out NOW!

The doctors are worried that the longer we wait the worse things are getting. They are worried that more and more organs are being affected and are going to need to have surgery on them and/or be transplanted. So it is really necessary to get this surgery done ASAP.

In the meantime, I have also been getting my usual ketamine treatments. Of course the best thing would be if I could get to Mexico and get the radical ketamine coma that I really desperately need, which would ‘cure’ my entire neurological disease and autonomic dysfunction, but it costs over $100,000, which is something we definitely don’t have. I would do anything to be able to go to Mexico to have that radical ketamine coma. I truly believe that would be the answer to all this. But unfortunately, it costs too much money and we can’t afford it.

So in the meantime, I have been undergoing the ketamine comas here in New York. Of course they are no where in comparison to the one that I would be getting in Mexico because the one in Mexico is one that I would be given so much ketamine that I would literally be on life-support and totally dependent on machines and ventilators. The amount of ketamine to do that is not FDA approved and therefore, it cannot be performed in the United States. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

For many of the patients that underwent this treatment, the treatment has been miraculous. I would be the 38th patient to undergo it.

But since I can’t get it currently, I have to rely on my ketamine comas here that is much less than that.   I wish I could live in those ketamine treatments because I can’t take this suffering anymore. At least when I am in the ketamine comas… I am not feeling any suffering. It is my “vacation” away from this illness and horrendous life until I wake up. I have been deteriorating and worsening so much lately that medications have not been helping me. Therefore, the doctor has raised the ketamine done another 50 mg.

Well… I guess that takes care of everything for right now. Just gotta hang in there until I get the surgeries. Just gotta pray that I get the necessary funds so that I can get the surgeries. I am hoping also that we have enough money to even go for the week to Cleveland to meet with the doctors that I need to meet with.

We are scheduled to leave February 1st for Cleveland and have heart surgery the 2nd. Then I will have my colon removed on the 18th. Depending on how that goes, it will determine how urgently the multivisceral transplant will have to follow. I will have to be there at least 6 weeks at this time, which also happens to be when my birthday is. What a way to celebrate a birthday! But I don’t care as long as I get better!!

10848906_10101373225312450_1821375345711225956_oMy brother surprised me today with a bear and a big box of chocolate truffles. He works as a social worker and one of the rehab/nursing homes gave him some stuff… so of course he gave it to me. The chocolate truffles look so yummy. Maybe one day I will be able to enjoy them.

Well… have a happy holiday and please remember my website. Please remember to pray for me and pass my website along. Remember… even a $1 can make the hugest difference in my life!! If you have any other ideas how to raise money, please let me know… all ideas are greatly appreciated. Please email me at Femirsky@gmail.com. Donations are very much appreciated at www.gofundme.com/FallonMirsky.

Happy Chanukah, Merry Christmas, Happy Kwanzaa, Happy New Year.

– Fallon

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December 13, 2014

1496445_10101343540760530_8622404218266491286_oHI!

Sorry I haven’t written in quite some time, but I have not been feeling well. To be quite honest, I am really not doing well and really deteriorating. As time is proceeding, I am getting weaker by the day and it is getting even harder to make it through a day or night.   It takes me quite a while now to build up the energy to do something so even simple tasks like writing my blog is getting too difficult to do and that is why I haven’t really written as frequently as I once did. I desperately need treatment and need it NOW, but unfortunately we can’t afford it and we are in extreme need of the help of others so that I can get the lifesaving treatment that I need.

I figured that since I haven’t written in a while, I would write and update you on all that has been happening especially since the year is coming to a close and I am only hoping that 2015 will be better. Plus, I am in need of so much help that I am hoping that through this blog, you might realize how much help I really do require to stay alive and therefore, perhaps maybe you might be able to help in someway… whether it is by donating, spreading the word of my website so that others can know about it and be able to donate, say a prayer, give some fundraising ideas, etc. I am really hoping that something can be done because without any help, I am not going to make it much longer.

As it is, we had to cancel the lifesaving surgery that I was scheduled to receive this upcoming week at the Cleveland Clinic. Due to insufficient funds, we had to cancel and it was something that we really couldn’t afford to do because I am literally hanging on by a “thread” and that thread is snapping already. We did reschedule it to a later date, but even the doctors are skeptical about how much longer I can hang on and if I can honestly make it to even another month for when the surgeries are now scheduled. In my state right now… even day counts and makes a difference.

I desperately needed to get to Cleveland Clinic this week because I was supposed to have heart surgery as well as have my colon removed. I was supposed to have heart surgery not only to remove the calcium calcifications in my coronary artery, but also to put lines and catheters into my heart to serve as a port, emergency access, a place I can receive TPN, etc.

This heart surgery was very important because I desperately needed the lines placed in me. Not only did I need it for the massive surgery to remove the colon, which would follow because it would be an “emergency access” port into me since it was a central line and go straight to my heart, but it would also have other purposes as well. With this port, I would be able to give given medication and would be a huge relief because of the amount of medications that I need to take and because I can’t absorb the medications as they need to be either since my either GI system is basically dead and doesn’t function. If given meds through this access, they would be far more potent and would hopefully help me better both in pain and in general. In addition, as I take so many pills daily that according to docs would “kill a horse” and a 300-pound man would never be able to take because it would even kill them, and it is extremely difficult for me to get them down. I have to take literally over 50 pills daily and with this port I would not have to worry about swallowing any of them anymore. Even the injections that I need to keep poking myself for wouldn’t have to happen anymore, as this port would prevent me from receiving injections and being constantly stuck with needles to give me both medication and draw my blood and everything.

Finally, one of the major reasons I need this port is for TPN. As I only weigh in the 60s, I have no ‘reserves’ to help me fight anything should I get sick and for when I undergo surgery. I definitely would need this to help me ‘heal’ especially from major surgeries that I will be undergoing.

So everything is just at a standstill right now because we have no funds to send me. Not only do I need help even paying for my medical treatments at home, and medications and everything, but there is absolutely no way we could pull off this trip. I would need to spend at about 6-7 weeks in Cleveland, which would amount to a lot of money. So we are just praying that help will come and arrive in time for February because that is when the surgeries are rescheduled. We just hope I will make it that long as well.

Whereas it was hoped that I would be going for the surgeries this month and this way I would be starting the New Year as hopefully a brand new person, it is obviously not going to happen. Now I am scheduled to leave February 2nd and I have heart surgery on the 3rd and then my colon is being removed on the 18th.   I will literally be going to Cleveland as an extremely SICK 32 year old, but hopefully coming back as a healthy 33-year old because I will be celebrating my 33rd birthday there. What a way of celebrating your birthday, right? But hopefully there will definitely be something to celebrate this year because hopefully we will be celebrating receiving the lifesaving treatment that I need and the start of a brand new healthy life. That would be the best birthday gift of them all.

Technically speaking it is kind of better that I have the surgery in February rather than now in December because there will be more days being able to be dedicated to the TPN than if I went now. Since I suffer from this painful and rare debilitating illness, I can’t tolerate anything ‘foreign’ in me and therefore, we don’t know how my body is going to be able to tolerate these lines going into my heart. I can’t even tolerate IVs. In order for me to get my colon out and have that massive surgery, I need to have at least 10 days of TPN. If I went this month, we would have to use every single day and wouldn’t be able to miss one day acclimating to the tubes. Yet, now that I am going in February, we will have more time to go ‘slowly’ and hopefully get my body to work with us. As it is, they will be having me heavily induced on ketamine during this time so hopefully I won’t be bothered by the central lines. I am so malnourished and deprived according to the doctors that we are going to need those extra days to go slowly. So in a way it is better.

However, even though we will be going to Cleveland for the massive surgeries starting February 2nd, we still are planning on making a trip to Cleveland on January 6th for a few days. It is important that we do so because we have to meet with some doctors and go over a few things. We need to see at this time the heart doctor, endocrine doctor, GI surgeon, neurological doctor, etc. It is extremely important to see the neurological doctor because he is one of the very few doctors in the world that is knowledgeable about my illness and has actually done research on it as well. This way the team will know exactly how to care for me during this operation because I cannot be treated like normal patient and even the slightest surgery, needle stick, tube placement, etc. will stir up my disease, cause havoc on me and my autonomic dysfunction, and cause my illness to spread.

So that is another reason why it is kinda better that we rescheduled to February as well. If we went for the operation during this month, I wouldn’t be able to see this neurological doctor prior because he was off on vacation this entire month. In fact he is actually ‘retired’ and not seeing patients at all. Yet, he is still willing to see “past” patients once a week and thankfully I have been a patient of his years ago and therefore, he is willing to see me as now too. So at least I will have the ability to see one of the best and knowledgeable doctors to talk to and we can know exactly what to do. After all, my illness is so horrendous and spreads like a wildflower that the slightest thing sets it off. I don’t wish this disease on my worst enemy. The pain is so intense and the autonomic dysfunction is just simply insane. One time in California, I had a tube placed in me by just going up my nose, and dragged into my intestines as way to see if they could feed me by bypassing the stomach. However, not only was this a failed procedure, but it stirred up the illness so badly that I immediately couldn’t talk. They immediately put me into the ICU and gave me high doses of ketamine and thankfully, it worked and I regained the ability to walk with the crutches.

So if I undergo anything, I always have to have ketamine. Not only is it used as a pain reliever, but also it is a way of suppressing my illness. That is why I need to get to Mexico and why I have the weekly daily coma. When I get those comas, it is the only time I am not suffering. But unfortunately I can’t live in them 24/7 and that is why I only wish that I could get to Mexico so that I can receive the ketamine coma that I really require that would “cure” me. Even though I do go for ketamine every week here, it is only a temporary relief and it no way would ‘cure’ me or anything. We pray that it is even helping a little in stopping the spread of the disease even though it is spreading like a wildflower, but we don’t know how much faster it would be spreading without the ketamine.   Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer.

I really need the Mexico coma because Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. Since the amount of ketamine that I need is not FDA approved and the only place to receive it is in Mexico, but unfortunately I can’t get it done because of insufficient funds. They want over $100,000 for the surgery and it can easily be more than that. Yet ketamine is my only hope because it will hopefully ‘cure’ my underlying neurological condition, which is the basis of this condition.   This ketamine procedure is very radical and rare, and I would be the 38th patient to undergo it. Yet, it is for the people that have exhausted all other options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU.

So… in the meantime my body just continues to suffer like the domino theory and continues to shut down. This disease has caused so many other problems such as the severe gastroparesis, autonomic dysfurnction, etc. However, since my entire body is affected and it is causing all these other problems in my body, I need to do things that will buy me time and fight what this illness is doing to me. That is why I need to go to Cleveland Clinic.

10658991_10101343538989080_9076926901184874673_oIn addition, now when I go to get my ketamine every week, I just don’t get ketamine. I have been getting vitamin bags too because of how sick I am and how we are trying to prevent me from getting and catching anything… even a cold! Everything is magnified for me and a simple cold is like getting the flu to me and can really literally kill me. Since I can’t take the FLU shot because the doctors have stated explicitly that could easily kill me and it is the time of the year where germs are prevalent because everyone is getting sick, I have to be extremely careful because I have no immune system and can catch everything. Even my dad has been joining me in taking the Vitamin bags. The doctor has been giving it to him because he can’t afford to get sick either. Not only can’t he afford to get sick because he needs to work and take care of me and everything, but he can’t get sick because then I can easily get sick since we live together.

You know… between getting constant IV when I go for ketamine and when I go for the surgeries to clean out my intestines every Friday, you would think that I wouldn’t be dehydrated. But due to my illness, I am extremely dehydrated. No matter what I do… I can’t quench my thirst. It is so annoying. I just can’t understand it.

This illness has taken a huge toll on my GI system and caused me to have severe gastroparesis. It has forced me to basically have my entire GI tract become dead, as nothing moves… from the esophagus to the stomach to the intestines. I literally can’t eat and I weigh only in the 60s. I am in need of a multivisceral transplant, which is a complete new GI system or in order words I need everything underneath the hood replaced except for the engine. With the multivisceral transplant, I would receive a new stomach, small and large intestine, pancreas, and liver. It is one of the most dangerous surgeries you can have and has been known to be the most dangerous transplant that you can have. It is extremely rare and in fact, only 6 hospitals in the country actually perform this transplant with Cleveland Clinic being one of them.

I need to have this transplant as soon as possible and especially get this colon removed because since nothing is passing through, everything (whether it is meds or food or anything else) is just sitting inside my body and rotting. The doctors are extremely worried that my intestines are going to rupture and that I am going to go into sepsis. As it is, my colon is spilling toxins into my bloodstream and these toxins are traveling in my bloodstream to all my organs and brain and poisoning them. So essentially I am also being poisoned to death.

I also need to have surgery done as soon as possible because intestines are literally twisting and having Intussusceptions. They are literally strangling themselves and it can be extremely fatal. I have had it for a while and whereas a regular person would need surgery immediately to correct this situation, I have been fortunate (if you want to call it that) to be able to live with it because my intestines are so dead and over dilated that they are so BIG and floppy. In fact, when the doctors go into my intestines, it literally takes a whole team to navigate my intestines because of how big and floppy they are. It will take them pushing on my stomach and holding my intestines in place. Just to get to my cecum, it can take over an hour, which is an extremely long time. Therefore, even though I have Intussusceptions and twists, I have been able to live with it. But now it has gotten to the point where I can’t live with it anymore and it is now VERY life threatening to me. I can’t even produce any stool anymore except for this mucous that is really weird.

So it is essential that I get to Cleveland Clinic because it is the only place that I can have these surgeries. It is the best place for me because not only do they have the best surgeons there and are ranked as one of the best hospitals in the country, but they are one of the very few hospitals that even do this transplant. Plus, as I stated before, I need to have ketamine whenever I have something done and that is one of the very few places that will keep me on the ketamine for that length of time so that I can hopefully be able to tolerate the TPN and get the surgeries that I need. So we just hope and pray that I will make it there and that we receive funds so that it will be able to happen.

In the meantime, I guess I just have to keep up with what I am doing to hold on. I have to go every Friday to the OR so that I have my intestines cleaned out. After all, I can’t afford to have these toxins build up in my colon because if my intestine ruptures, then I can easily go into sepsis and die. Plus, an added benefit of this surgery every Friday is that it makes me feel better because it helps to remove everything that is just ‘sitting’ in my body.

So that appears all that is happening with Cleveland. Speaking about cleaning out my intestines though, I was originally scheduled today for the doctor to clean out my esophagus as well. However, when I went to the hospital today to have it done, the doctor all of a sudden refused to do the esophagus and just wanted to do the intestines. I threw such a fit because I knew that something was stuck in my throat like a pill because as I said before… my entire GI system is paralyzed, which includes my esophagus. Therefore, nothing goes down and pills end up getting stuck in my esophagus. It is extremely painful because not only is something stuck in my esophagus, but it is absorbing in the esophagus rather than the stomach, which is extremely painful.

So I ended up fighting him on this procedure and the doctor said to me that if he did the procedure and there was nothing there, he would “never” do another procedure on me again. Even the anesthesiologist made a comment of how ‘persuasive’ I am. I didn’t care what they said because I knew that something was wrong and that I needed it. So I told the doctor that I don’t care what he says, I need him to do it.

But guess what? When I woke up in the recovery room, the first thing that I did was grab my chart to see what they found when they did the procedures and guess what? I was totally right. There were pills stuck in my esophagus that they had to remove. So who was right? I know my body and I knew that something was wrong. I couldn’t wait to see the doctor to rub it into his face because he was so adamant before about not doing it and how he wasn’t going to do another procedure if there was nothing there. Look who was right and who was wrong. He usually comes to see me and my dad after I wake up to explain everything that happened, and I was just waiting for him because I couldn’t wait to give him my piece of mind.

So that appears all that is happening right now. I am so sick and I desperately need help. Therefore, I really pray that someone will be able to help me and that you will help me pray that I will get well, as well as send out the link of my fundraising site so hopefully I will be able to raise enough money so that I can receive the lifesaving treatment that I desperately need. Even besides the surgeries in Cleveland, I need medications and even medical treatments here that we can’t afford. I hate to sound like a complainer or a beggar or anything, but we are basically ‘broke’ and can’t afford anything. I desperately want to live and unfortunately we don’t have anything to help me get well. It kills my parents that no matter how hard that they try… they just can’t get me the treatments that I need. The bills that have just snow blown out of proportion. Not only are my medical pills extremely high, but because we have been dedicating all our funds to paying for my health, which we can no longer do, we can no longer even afford our regular bills, which have also built up. We can’t even afford our mortgage and we can’t even afford food on our table. I never thought that I would be so grateful on the days that my mom is able to go food shopping and we are able to have food on the table. As of last year, we didn’t celebrate any holidays and I know that it will be the same this year.

So if you can please do anything, I would really really really appreciate it. I would appreciate any donation whatsoever because even $1 is one less dollar that we have to come up with. If you can think of any ideas for fundraising, I would really appreciate it. If you can spread the link and really help get my story out so I can get the help I need, I would really appreciate that as well. If you need to contact me, please feel free to do so by contacting me at femirsky@gmail.com.

We are just totally out of funds and totally out of ideas. Dad thought possibly of even when I go to Cleveland that he would leave me there and travel back and forth. Despite the fact that it wouldn’t be the ideal situation and I wouldn’t want to be left alone in Cleveland, we thought that at least this way we would possibly ne able to save some money because would could save some days on the hotel stay because he would ne traveling home and we could also have him work as well some days because to not to have him work while I am in Cleveland, which will be for about 6-7 weeks, it is going to really kill us. We will have no income during this time and we can’t even afford the bills now that he is working. We can’t imagine what it will be like when he won’t be working. We don’t even know how we are going to manage. However, this idea was clearly put down and is not even an option because when we spoke to the doctor about this, the doctors at the Cleland Clinic expressively said that he had to remain with me the entire time or they will not be able to do the surgery. They said that I need to have a family member with me at all times or they will not do it and therefore, it gives my father no other choice but to stay with me or I will not be able to have the surgeries. So… that is more reason why we need fundraising and donations. We won’t be able to have any funds or any income for 2 months, which is such a long time. Our bills, especially my medical bills, are exuberant. There is no way we can afford not to work especially when we can’t even afford them when they are working. So if there is anything that can be done… please help. Sorry to sound like a broken record, but I am desperate. I am going to die without this surgery and all our funds are depleted and we sold everything that we could. Please help!!

I guess in the meantime I just need to try to keep up my strength and to try to keep going. I have my animals that are my best friends and I also am reading. I have the new SHOP-A-HOLIC book called SHOPAHOLIC TO THE STARS. So I plan on reading that.

Well… I hope that all is well with you. Thanks again for all your help. When I know more information, I will write again. In the meantime, have a happy holiday.

Love always,

Fallon

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