I wish I definitely had better news to share, but unfortunately the news that I am about to deliver is not any good. I knew deep down that this day was going to come sooner or later, but I was hoping I would never have to actually have to deal with it. I was hoping that there would be some way around it or another option, but unfortunately, my deepest fears have come true.
I spent the morning in the city getting my test done, as I needed to have another CT scan done because they wanted to see exactly what was happening with my small and large intestines. I had a CTA performed on Monday and unfortunately, the results of the CTA were not good, as it showed two really severe blockages in the intestines. It also showed a possible colocolic intussusception, which is when your intestines are like a telescope and one piece goes into another. Therefore, these situations would require urgent attention and surgery, as you can clearly die from them and as a result, my GI doctor had me go for another CT scan today in the city to further confirm exactly what was occurring.
I always had a fear of having to have to have any intestinal surgery that would result in having to wear a “ostomy bag!” I really know it probably is no big deal and probably something that I will definitely get used to, but it is something that at the current moment I just can’t handle. In fact, when my friend’s daughter ended up getting a ostomy bag way back when because she was battling a severe case of Crohn’s disease, I even told my friend that I gave her daughter a lot of credit because I don’t think I could ever handle getting a bag. There is something about getting an ostomy bag that really makes me uneasy and really scares me. It is a fear of mine that I have had from the earliest times that I can remember and I was always hoping that it would never have to happen to me even though I knew deep down that with all the problems that were occurring with me… it was a good chance that it might.
I went for the CT scan today and they had to take special care of me when I had it done because I couldn’t have it performed like a “normal” person. A normal person would have to not only have contrast injected into them, but they would have tons of lemonade to drink that would also have additional contrast in it as well so that they would have a clear a picture of what they were seeing. However, with my condition, I am unable to drink at all and therefore, all that they could do was give me a injection and work with that. So it kind of made the radiologist’s job a little harder but even with just doing the IV contrast, what the results showed was clear-cut.
I never felt so comfortable with a radiologist as I do with the one that I go to in Manhattan. I go to this one radiologist because he happens to stand out from all the rest because he doesn’t just let me take the exam and go home. Instead, he actually looks at the scans while I am there and thoroughly explains it to me while I am there. He is extremely nice and knowledgeable, and any question that I may ask doesn’t perturb him. He lets me ask as many questions as I want, as there is never a stupid question. He can literally spend an hour with me explaining all that is happening to me and he makes sure that whatever the results show on the scans is taken care of. I always feel like I am in the best of hands with this radiologist, as he has a wealth of knowledge that is like no other person that I know of. Especially with my disease that is so complicated and at times that doesn’t seem like it makes “sense,” he actually takes what I am feeling and makes “sense” of it in terms of what I am feeling and what he is seeing. He really makes me feel like I am not crazy, which I can’t tell you is such a good thing because with my illness sometimes I think I am going crazy because I get the weirdest symptoms and feelings.
The radiologist didn’t like what he saw on the CT scan at all and he said that what was seen needed urgent attention. I definitely needed surgery and needed surgery NOW. My worst fears have come true and it seems that I need to have a bag, as I have to have my entire colon removed. It appears that my entire colon is basically done with. There is no other simple way of putting it. It is completely shot. In fact, the colon is so bad that the stool isn’t even reaching the sigmoid or the rectum. It is filling up the pelvis and exerting a tremendous amount of pressure. My intestines are extremely dilated and they can easily become perforated.
The radiologist told me that I definitely needed help quickly. He said that I fought this hard and for long enough, but I just can’t do it anymore. He said that I he knows it is “scary” and that it is massive surgeries and everything, but the truth of the matter is that it just can’t be avoided. The colon is completely dead and the rectum and sigmoid colon is completely collapsed. It appears that this all has occurred there is a lack of nerve cells in my colon or they have completely died because of the autonomic dysfunction. Either way, I don’t have nerve cells that signal muscles in the large intestine to push stool toward the anus and without a signal to push stool along, stool ill remain in the large intestine. As a result the stool has stopped moving and has caused intestinal obstructions at these points.
I need to have my entire colon removed and therefore I will need to have a bag placed in me. Yet, I feel like I am not going to even be a person anymore because I feel like I am being decapitated. Not only do I need a bag to function as my colon and to eliminate my wastes, but I will also need another tube such as an naso-jejunum tube to place food into me because my entire GI tract is gone and I need to be nourished and gain weight. So I will essentially have tubes to put stuff into me as well as tubes to take stuff out. I feel like I am not going to even be “normal” anymore.
Even though I can barely eat anything at all nowadays with the way my GI tract is… at least I have the option. However, if I end up getting the tubes put into me, not only will I become more “bionic,” but I will not be able to eat anymore. The doctors said that all food will go into me via the tubes and then it will then come out via the tubes as well. I told the doctors and radiologist about how much it bothers me about how I am not going to be “normal” anymore and how it bothers me that I won’t be able to “eat” anymore, but they responded by saying that “at least you might be feeling better though.” To think though how much “eating” is such a social activity and how much it factors into a person’s social life… it really makes a big difference. Not only that, but I will also feel hungry because feeling full and satisfied also entails putting food into your mouth and swallowing. Since I am not going to have that part, I am going to feel hungry all the time even though technically I will be “full” because I will have been fed all through the tubes.
Doctors have always wanted to put an NJ (or naso-jejunum tube) in me to get me to eat and gain weight. However, due to my illness it has never worked because my body has always rejected it. It has always rejected it because when the food goes into my intestines, it really has no place to go because the colon is essentially “dead” and there are blockages. Therefore, it makes it impossible to really put stuff into the intestines because it only backs up. That is why the radiologist told me that before a doctor can think of putting another NJ tube in me, the doctor must first remove my colon and do a complete ileostomy.
I am really upset because I really don’t want to have a bag. I am deathly afraid of it. The radiologist sat me down and tried to explain it to me and told me that he wishes that there was another way around this, but unfortunately there really isn’t. He said that I fought this long enough and such… but the fact of the matter is that I just can’t do it anymore. My body is literally failing me and if I continue to go in this direction and not have my colon removed, it will lead to further problems, as it can definitely lead to my death really soon. I can easily die because my colon will become perforated or have colonic rupture. I can also have a very serious infection called enterocolitis, which I am very susceptible to as the stool is not moving and just literally rotting there and fermenting. I can easily go into sepsis. Other things that are occurring because of this is that I am having severe edema, I’m aspirating, and it is causing my other organs to fail because of the pressure that is being exerted onto them by the over dilation of my intestines.
As such, I need to have an ostomy bag. The radiologist explained to me that I need to have the complete colon removed and a portion of the small intestine will then go through an opening in the abdomen where a stoma is created. A stoma is created by rolling the intestine’s end back on itself, like a shirt cuff, and stitching it to the abdominal wall. An ostomy pouch is attached to the stoma and worn outside the body to collect.
What I need to get is actually called an ileostomy. The radiologist knows that I really don’t want this performed and therefore, he did say that there is the potential that once I do get this done and then get stronger, there is a possibility of having the bag removed and undergoing a pull-through procedure. During this time, the surgeon removes the stoma and closes the abdomen with stitches. That would be awesome if this would happen, but the fact of the matter is that we don’t know if that would even be a possibility because my rectum has lost the ability to function as well as a result of all that is occurring. In order for me to have the bag removed, I would need the rectum to function again. The radiologist did say though that it is possible for the rectum to possibly “wake up” after the colon is removed and after I become stronger and better nourished through the NJ tube.
So it appears that a lot has to be done and they are massive procedures. What makes it even more complicated is that I have my severe neurological condition such as the reflex sympathetic dystrophy and the autonomic dysfunction to contend with as well. Any little surgery is a massive surgery to me and therefore, you can imagine how MAJOR this surgery is going to be considering the fact that this surgery is already a MASSIVE surgery to the normal person. To complicate matters even further, I am really not a surgical candidate because of the state that I am in. I only weigh in the 60s and have a BMI of less than 10.8. I am extremely fragile and just undergoing anesthesia for a “simple” operation can easily kill me.
But I guess the doctors were right in their thinking and saying that I am a “time bomb getting ready to detonate” because the time is here that I am detonating. Now we really have to find out the best way about doing this because we not only have to find the best surgeons that are able to perform this massive operation, but we have to find a hospital that is able to be equipped to handle my overall condition because it can easily wreak havoc on my overall neurological condition and kill me and it can easily worsen that as well too. So… we really are between a rock and a hard plate, but we are also running against a clock. We really need to get something done quickly.
So we don’t know what to do. We do have some choices but we really need to MOVE on the way we are going to go. We can try to have the surgery here even though the hospitals here are probably not situated to handle my overall condition. There are excellent surgeons in Mount Sinai who are willing to see us and the fact of the matter is that is who the radiologist and my GI doc recommends if I were to have it here. The surgeon is supposed to be amazing, as he graduated from Princeton for undergrad and Vanderbilt for Medical. However, what drew my attention to him the most was that he was concertmaster of the orchestra, as he is a violinist. He has performed in many famous orchestras and since I was a violinist who was also concertmistress (of course not of huge and famous orchestras like him though), I thought it was a great thing to have in common.
However, there is a problem that the surgeon at Mount Sinai doesn’t take insurance, so I don’t know how it will work out. Always a problem, right? But there are also other problems to worry about as well because like I said before, they are not able to really “deal” with my overall condition here and therefore, I will not be able to be put into a heavy ketamine coma during this surgery, which I will most likely need to happen. Even though I can’t get the heavy and radical ketamine coma that I need in Mexico, I do need to have to be have ketamine before surgery, during surgery, and after surgery and in a great amount too because this surgery will greatly affect my overall illness and exacerbate it. It is through the ketamine that we are hoping to hold off the progression and hopefully not allow it to become exacerbated. Like I said though, even though I do get ketamine comas/infusions here in New York, the hospitals here are not situated to give me ketamine 24/7 before, during and after surgery because I will need to be placed in an ICU and the attention needed will be too great.
Another option that we have is to go to California to have the surgeries performed or to another location like Cleveland Clinic that might be better able to deal with my overall condition. During this time I will be able to have the ketamine during the entire surgery and afterwards. However, the problem with this is that of course no place is better than having surgery at home and therefore, by having surgery at a place other than “home”, it will also be further expensive because we have to worry about the traveling costs and expenses, which of course is something we don’t have.
A third option that we have is to not to undergo the this operation but to undergo a different operation known as the multivisceral transplant operation. Ideally the best thing would be to have the transplant because my entire GI system is shot. I would get a new stomach, small and large intestine, pancreas, and liver. However, there are only 6 hospitals in the country that perform this operation and of course they aren’t located in the local area. In addition, this operation is incredibly radical and risky and in fact it is the most difficult transplant that you can possibly have. For me to be in the state that I am in, we don’t know if I can even handle the operation because it is a massive and hard operation to undergo. It is extremely life threatening.
Finally, the last choice that we have and the one that would be the absolute BEST option would be to go to Mexico and have the radical ketamine coma. That would be the best option because hopefully it will eliminate the need to have any of these surgeries. It is hoped that through the Ketamine coma that the disease will be reversed and I will regain the ability to eat and go to the bathroom. Other patients have experienced the same problems as I have and after undergoing the radical ketamine coma, not only are they essentially cured from the neurological disease but they are also cured from the GI point of view as well. That would be amazing if that would happen to me as well because it would save the problems of having those massive surgeries and it would also save me from having my colon removed and having a bag, which is something I really don’t want. But the problem with this is of course the money. In order for this to happen, which is the best option of them all because I desperately need help with my neurological condition as well and will essentially “cure” me, it will cost us over $100,000. However, we cannot afford that amount on our own and therefore without the help of others, it is literally going to be impossible to go. Despite all the trying to fundraise, we are really short on funds still. We are scheduled to go to Mexico to undergo the coma in July and we are hoping to be able to afford it at that time, but it is at the point where we really need to do it now because time is of the essence.
So decisions really need to be made and made in a hurry. In the meantime, we are scheduled to leave for California on May 13th and we are scheduled to see the surgeons at Mount Sinai on May 12th. Yet there is plenty to be done even before that time and there is still plenty of time for emergencies and crises to arise. After all… there is never a dull moment in my life.
In the meantime though, the doctors are afraid something is going to happen and really think that the best place for me would be in the hospital. I really need to be decompressed as well and therefore, they want to put me in the hospital and do that procedure on me. They will literally put a tube in me and vacuum the stool out of me and decompress me. The tube will remain in me for a couple of days. When I asked the doctors how long I will have to remain in the hospital for though, they couldn’t even give me an answer. Even when I joked around and said that I could be in the hospital for the ‘duration,’ they didn’t laugh but rather said that it was quite possible. I don’t want to live whatever time I have left or spend my life in a hospital.
I am also scheduled to go for another procedure on Friday. I am supposed to have an endoscopy in the hospital to see how my esophagus is functioning as well as other things. In the meantime, they are going to try to decompress me a bit and suction me out a bit then, but it won’t really be as nearly as great as if I went to the hospital and had it done there because the tube would be different and I would be suctioned out for a longer period of time if I was in the hospital.
However, just as the doctor stated, it is not going to be a miracle or alleviate the problem by being decompressed. Yes I really need to be decompressed because I am too dilated and there are too much pressure being put on my organs and there is overexpansion of my intestines, but the problem that the decompression is solving will only be temporary. The decompression will only last a couple of days at the most and therefore, we really need to do a more permanent fix, which is to have the operation. But at least if I have the decompression I will not only have the ‘temporary’ fix but I will feel better as well because I am in so much pain as well.
In addition, the doctor has placed me on a new medication that they are trying me on. They are experimenting me on it and hoping that it will help. They are not expecting it to work “miracles” but they are hoping it will might help at something. Even if it helps a little, it will be a great thing. They are hoping that if it does help, they are going to write it up in a journal article because we are using it in a “off label” usage.
So there is a lot going on. I am just basically falling apart. Besides all the stuff that is occurring with my GI system, I am also having a hard time with my osteonecrosis. It turns out that a piece bone actually fell out of my mouth the other day and as a result, I now have a hole in the roof of my mouth. I had an apportionment with the surgeon on Thursday, but I guess I didn’t make it that long. I did keep the piece of bone that fell out though and I am going to bring it with me to show him. He will probably want to run a pathology report on it like he has done on all the other pieces that have come out, but I don’t know if he will still be able to do so because it has been out of my mouth instead of being a “fresh” piece. You know?
So… that appears all that is happening. I am so exhausted and so confused with everything that is happening. We really need to make a lot of decisions in the next few days. I really don’t know what to do. My mind is racing like in a million directions. All I know is that I feel like I am not normal and I feel like I am literally not only falling apart, but I feel like I am being decapitated. I just want my life back. I am just praying that I get the funds to go to Mexico because I am hoping that this radical Ketamine coma can stop all this bad stuff that is occurring and “cure” me like it is suppose to do. But like I said previously, it all depends on the funds and therefore my life is kinda resting in the hands of the you and the people in the world. I just hope people find it in their heart to donate because essentially all I need is 100,000 people to just even donate $1 and I will be set. I don’t even think that is an impossible feat because for 100,000 people in the world to donate, it is really not a lot because the world is so overly populated. In fact, all I am asking is for 100,000 people in a world that is so overly populated. As of March 26, 2014, it is estimated that the world population was 7.159 billion by the United States Census Bureau. All it takes is $1 from each or 100 pennies.
So I am just going to keep hoping and praying that it will happen. If you can help facilitate that, I would really appreciate it. Please spread the word that help is desperately needed. Donations can be given at www.gofundme.com/FallonMirsky. In addition, Jaime is hosting an ONLINE ONLY Pampered Chef party. You DO NOT actually go to a party! It’s all done online. Please add all of your Facebook friends onto this party AND please post about this on your wall with the link so people can make purchases. If you have friends or family outside of Facebook and they would like to make a purchase to help raise money for HOPE FOR FALLON email them this link with an explanation of the fundraiser.
http://new.pamperedchef.com/pws/dayna417/guest-landing/8868939021467 The more purchases…. the more money we can raise!!!!
In the meantime I am still trying to keep myself as “normal” and grounded as possible in a world where I am literally losing my mind with everything that is occurring. I am reading a terrific book that I recommend called KEEP QUIET by Lisa Scottoline. I never read a book by Scottoline, but it appears to be a great book.
As a little side note, Missy’s birthday is coming up. It is in about 2 days and I can’t believe she is going to be 9 years old. I just love that cat. She is really my best friend. She is the best thing that ever happened to me. I don’t know what I would do if I ever lost her. She is literally like my life. We call her my ‘babysitter’ because she knows exactly when I am not feeling well or not doing we well as I usually am. She never leaves my side and she is the first one there to make sure that I am al right. It is so nice to be able to spend the nights with her because the nights get so lonely especially since I can’t sleep like normal people do. We both not only watch television together, but we both love going on the computer together. She loves watching me use the computer. She is also very vocal in that she always “meows” to me and lets me know of her presence and when she wants something. She always knows when I am getting up because she is always there at my side. She really is something else.
Well, I am going to get going. I think I wrote enough and you are probably exhausted from reading so much. I know I am kinda exhausted from writing so much. I don’t even know if I am writing coherently anymore. I will keep you posted on everything that is occurring.
Please continue to pray and send those positive vibes!