Just wanted to write a quick update to let you all know what is happening since tomorrow morning is the BIG day. I don’t know if I will be feeling up to writing tomorrow night to let you know what has happened and how it all is going, but I will try my best. However, as soon as I am “up” to it, I will definitely write and update you on how I am doing. As of right now though, I am extremely nervous and scared. I am sick to my stomach, but I think that it is because of my nerves. I really don’t want to be here in California. I so wish that I was home and didn’t have to go through with this. But, I know how important these surgeries are. I know how I am really “running out” of time and how I am really going to die soon if time isn’t bought. Even though I am awaiting a Multi-organ visceral transplant, which will entail having a transplant of the small intestine, large intestine, stomach, and pancreas, it will be awhile til I get it. There is so many procedures and stuff to be done (tests and evaluations) before a person can receive a transplant. Then of course there is the waiting for the organs as well, which in my case is even harder too because I need all the organs to come from the same donor. However, since I am rapidly deteriorating, the doctors fear that I won’t make it to the transplant if they don’t do something to “buy” time because my body is literally shutting down. If I was a “male,” I would surely have been dead because there is no way possible that a male could live at the level that I am at right now. Fortunately, “females” can live at a bit lower of a level and therefore, I am still able to survive. However, “females” can only live til a level of 12 at the lowest, and I am already at 12.2. So… time is of the essence.
Not only is time of the essence, but the transplant is also extremely risky. It runs the highest rejection rate of all transplants. It is so rare and dangerous that only 8 hospitals in the country actually perform this transplant. I have to travel all the way to California to have this transplant because so very few hospitals will do it. Even of the 8 hospitals that do small bowel transplants, there are even fewer hospitals that do the type of transplant that I require, which is the multi-organ visceral transplant. Most of the 8 hospitals will just transplant the small intestine with the pancreas and/or liver at the very most. However, like I said before, I am in greater need of that. Not only do I need the small intestine and pancreas, but I also need a new stomach, and large intestine. It is also very possible that I need a new esophagus as well because my esophagus is affected by the paralysis as well, as I have extreme difficulty swallowing and such. But, if I have the esophagus transplanted, that is even more rare and even more dangerous than anything else.
This transplant is extremely dangerous and is definitely “no walk in the park.” The doctors know that it is very easy to have a complication during this transplant, as there has not been a single transplant that hasn’t had one without a complication. In fact, 20% of the cases end up having a massive complication that requires going back to the OR and also might entail never leaving the hospital again. With just transplanting the small bowel (which is less than the transplant that I need, so it is less risky), the 5-year survival rate is 60%. So… you can just imagine how hard the transplant that I am going to need will be on me as well as the survival rate.
Anyway, the doctors want me to be as strong as possible because if I am stronger with more weight on me and with more nutrition, then I will be able to “fight” this disease better and overcome surgery better too. I barely weigh 70 lbs. and therefore, I look extremely emaciated. I really don’t have the “reserve” to fight anything. If I get sick or have surgery, it really knocks me out because I don’t have the energy or “back up” to rely on in order to overcome either the surgery or the illness. That is why partly the doctors freak out when I get sick or need surgery. They know how much an illness and especially surgery exert on a body as it is, but if you don’t have the nutrition or ability to “fight” it, you are really up the creek. I already don’t have the ability to convert fatty acids into energy and such and therefore, when I run out of energy… that is it. I also have a hard time getting oxygen into my organs and cells as well. That is just more reasons why doctors freak out when I get sick. This is also more reason why I need to have these surgeries that I am having before during this upcoming week and why it is so very important for them to work.
So… dad and I made a trip to California to have some multiple surgeries done this week in hope that they will work. I will be going to Stanford Medical Center because they ranked one of the best hospitals in the country. However, even with the best doctors in the world, we aren’t 100% sure that the surgeries will work. But, hopefully they will. I have the best doctors in the world and I love them.
I am going to have quite a lot done this week, but hopefully it will be worth it. I know it will definitely be a rough week because surgery isn’t “easy” on anyone… let alone me because of my condition. I suffer not only from severe gastroparesis, but an underlying neurological disease that is also very rare. I suffer from autonomic dysfunction and Reflex Sympathetic Dystrophy. It makes me extremely hypersensitive and therefore, anything that happens to me is hundred times worse than it would be for a “normal” person. I am constantly in pain 24/7 and I never get a break.
Everything that takes place is magnified for me, so a simple needle stick for a normal person is like getting stabbed to death with a knife for me. A simple cold for a normal person is like getting the Flu to me. Plus, my disease is already spreading like crazy and taking over. It affects everything on the neurological system and therefore, essentially my entire body is affected because everything in your body relies on the nervous system to an extent. Since my disease is rapidly spreading like a wildflower, it has really spread to all over my body and took over. My disease spreads through “trauma” and therefore, we are really worried that it will worsen and spread even more this week because of the surgeries and such. Surgeries are one of the most traumatic things that can happen to a person and therefore, it is very probable that it can spread my illness and make it worse. So, we are crossing our fingers that it doesn’t come down to that.
Anyway… gosh… what a trip I have had to California. I really haven’t felt well all day, which really didn’t help the situation. I have been suffering from the WORST stomach pains. I don’t know if it is because of my illness or because of my nerves, but I have been doubling over with pains that are really debilitating. I am also extremely nauseous as well. Being sick like this on top of how I usually feel so horrible was not good, especially when I had to travel so much today. But, you know what they say… MURPHY’S LAW… anything that can go wrong will go wrong!!
The trip on the plane was so horrible. I have had problems this past week with my ears, so traveling on the plane really made them worse. I was really crying on the plane this time, so for me to do that, it really had to be bad. I never cry like that on a plane, especially because of pain in my ears. I have been suffering from bleeding in my ears. We don’t know where the blood is coming from and we don’t know if it is associated with the bleeding that I am having down below. I am bleeding somewhere internally in my stomach and/or intestines because I have blood in my stool, but the doctors can’t figure out what is going on because the tests that they have done weren’t really able to be completed. The doctors couldn’t do a colonoscopy on me because they couldn’t “prep” me. Since my GI tract is so paralyzed, I can’t drink and take all that laxative prep that needs to be taken. Even when the doctors gave me an NG tube to prep me for the colonoscopy, they still weren’t able to do it. I am in such bad shape with how paralyzed my GI tract is that they were only able to pour in less than a ¼ of a liter of the “GO LITELY” prep before the tube backed up. The laxative literally started coming out the same end it was being poured in. So, since this was occurring, the tube had to be taken out and the colonoscopy couldn’t be done. Even when the doctors tried to see what was going on by doing another procedure that entailed swallowing a camera, it didn’t work out well either because I ended up throwing up the camera. Nothing passes through my stomach even though the sphincters are wide open and such. Since my stomach is completely paralyzed, there are no “contractions” to push things through. As a result, the camera couldn’t pass through and ended up getting thrown back up. In fact, there are so many times that I can take medication and even like 12 hours later when I vomit, I can throw up my pills that are not dissolved because they don’t pass through my stomach. So…. since none of these tests were able to diagnose the bleeding, one of the major surgeries that I am going to be having this week will hopefully do that as well.
Anyway, since I had the problem with the bleeding in my ears, I did go to an ENT doctor prior to leaving for California. He wasn’t too sure of the cause, but he also told me how congested my ears were as well. He also told me that I had a condition like “eczema” in my ear as well. It turns out that I have an autoimmune problem in my ear too, which makes sense because the disease that I have is an autoimmune disease. The doctor did give me some steroids to take and put in my ear, but we all knew that it wasn’t going to be easy on me when I was on the plane. After all, they always say that when you have something wrong with your ears (i.e. ear infection) that you shouldn’t fly.
So, I was really in a lot of pain on the plane. My dad tried to comfort me, but no matter what tactic he tried to help ease the pressure on my ears… it didn’t work. To think… California isn’t around the corner either. It is such a long way off, as it is literally on the other side of the country. I thought we were never going to make it there. To top it off, we had a stopover, so we had to go up and down more than once, which was the worst. It was bad enough to have all that pressure and pain in my ears when we were up in the air. But, when we were going up and down… that was the worst.
I brought my 2 bears with me to San Francisco. One bear, WALLY, went below in the cargo area because he was too big to carry. Yet, JUNIOR, went aboard the plane with me. I took WALLY with me before to California, but JUNIOR never went. So, I let JUNIOR look out the window and enjoy the trip. He really got to experience the trip to California. I even took pictures of him looking out the window and everything. He was so cute on the plane. It was stupid what I did, but what else could you do when you are on a plane for so many hours? I had a little traveling buddy with me.
I never had doctors like the doctors I have in California. Not only are they very knowledgeable, but they are the most caring doctors I have ever had. They work together as a “team” and they really are in it for the “patient” instead of for themselves and the “money!” Stanford is ranked as one of the highest hospitals in the country. Many of the top doctors throughout the country have gone there to practice, as they only take the best of the best. Not only are the doctors superb, but so is the entire staff… including nurses and everyone else. Everyone is so caring there. They really want to help you out in any way possible.
The doctors really go out of their way for you. I can’t believe how much they “bend over backwards.” Even when they don’t have office hours, they make time for me. I have even had doctors come back from their vacation earlier than planned just so they can see me. It really is amazing. I never had anything like that before. When a doctor from Stanford says that they are going to call back, you can be assured a call back. Plus, when you do talk to them… whether it is in an appointment or on the phone… they never rush you. There is no stupid question for them. They answer everything and they will take as much time as you need. It is really nothing for them to spend like 2 hours with me for an appointment.
Anyway, as we were getting closer to leaving for California, the doctors and other people from the hospital were calling me to make sure that I had all the info and to make sure that I didn’t have questions and to check up on me. I was really surprised that even my head doctor called me this morning to make sure that I was on the plane and everything. He even gave me his private cell number. I was totally shocked.
This trip was not easy. I thought it would be easier too since we wouldn’t have to change planes and such. I didn’t think it would be possible to have a delay because of that too. But, I guess I was wrong. It turns out that when we got to Chicago, we were stuck. Even though we didn’t have to change planes, we did have a brief stopover in Chicago. Well, that brief stopover turned into an over 2-hour stopover. It was so long that they didn’t even let us remain on the aircraft even though we could leave all our belongings on it. However, during the stopover, I wanted to charge my laptop since I was using it on the plane. I still had another 5 hours on the plane and therefore, I wanted to make sure that my laptop would make it. However, after looking and then waiting forever for a place to charge my laptop, guess what? I didn’t have the plug to do so. It turns out that I had the plug to charge my phone and iPad, but I left the plug to charge my laptop on the plane. So, there went that. The guy next to me was kind enough to offer me his plug, but unfortunately it didn’t fit.
O wanna hear something weird? I thought all airports had Wi-Fi for free to use. Well, apparently the airport in Chicago doesn’t. I was really disappointed because I wanted to go onto the Internet during my stopover, but I was definitely not going to pay for it. Gosh… doesn’t it cost enough to fly already? They charge for literally EVERYTHING!!
Even though I was over-medicated on the plane so that I could get to California, my dad was not. So, I kinda was relaxed and able to rest on the plane. The doctors kinda overmedicated me because of how much pain I was in and such. So, whereas the time went kinda quick for me, it didn’t do so much for dad. Dad said to me that he “can’t do these long trips to California anymore.” I can’t blame him because we just about go there every 2 weeks. When we were like 2 hours into the trip, he was already going bizerkus. He told me that he was getting claustrophobic with being on the plane so long and such. He was also freezing because the plane was so cold. It is like an 8-hour trip to California, so I can’t blame him for being in “edge.”
When we got to the hotel, it turns out that the room that we always get was not ready. The people that were in the room before were supposed to check out, but they didn’t. I really liked that room too because it was perfect. It had the king size bed, which was good because it gave me and my dad plenty of room and less chance of him banging into me or anything. After all, like I said before… I am extremely hypersensitive and if he would knock into me or touch me or something, it could really hurt me. Even though my dad tries to hug the side of the bed so he doesn’t hit me at all, you never can be too careful. So at least with the king size bed, we have more room. The room also had a great bathroom. It really was “accessible” to the way it was set up for me. The location of the room was also terrific because it wasn’t that far once we got off the elevator and it was also close to the soda machines. My dad said it was “no big deal” that it was by the soda machines because he is the one that goes to get it, but it really was a big deal to me because when I am not feeling well, I don’t like him to go so far or for me to be alone too long while he goes to get the soda.
But, unfortunately the room wasn’t ready. The manager said that I can get placed in that room tomorrow though. But, they of course had to put us in another room in the meantime. I was kinda upset because of how good the other room was. So the new room that we were given was an upgrade, as it was considered a “junior suite.”
Thank goodness they gave us the opportunity to stay in the “junior suite” if we wanted to instead of going into the original room that we wanted because when we walked into that room, I couldn’t believe my eyes. It was ENORMOUS. The closet was a total walk-in closet and it was big enough for me to sleep in. It was like another bedroom in there. I told my dad that if he snores too much at night, I am going to throw him in there because he always ends up snoring and bothering me. I always end up hitting him throughout the night because he is snoring so much and it annoys me so. I don’t know how on earth my mom could have put up with it all throughout these years. I don’t know how she could have gotten any sleep whatsoever, and I even told her that too
The room has everything. It has a great TV, a couch, etc. Gosh… too bad I am going to be spending my time in the hospital because I am sooo jealous that my dad is going to be able to stay here. My dad kept telling me that he was going to probably sleep in the car outside the hospital because by the time he leaves the hospital at night, it would be too late to go back to the hotel, especially since it is like 1 hour away. My dad doesn’t really know the way around and therefore, he said that he would sleep in the car since it would be late, dark, and he wouldn’t know the way. I thought he was only joking, but I am sure now that he has a room like this to go back to… I am sure he will make sure he will go back to the hotel. My dad always depends on my iPhone for the GPS. However, my phone will be with me at the hospital and therefore, he won’t have it to rely on. I am sure that my dad really does know how to go to the hospital and back because we have been there so many times, but he just doesn’t trust himself. He did bring his GPS though, so he should be ok anyway.
Well… tomorrow is the first of the surgeries. I am so very nervous. But…. I know it has to be done. I have the surgery at 11 AM, and I am supposed to be at the hospitably 9:30. I am so very nervous not only because of the operation, but I am so nervous for my dad as well because he is the only one going to be there. I am worried that if something happens, he won’t have someone to support him. After all, I know that if something should happen to me… he would never recover. When we left for the airport today, my brother and mother were in tears. They are so scared for the operation as well. I never saw them like that… especially my brother. He wanted to make sure that I knew that he “loved me” and such. Everyone is so very nervous.
The surgery is extremely risky and since I am so “high risk” as it is, they are putting me on bypass. So, I am hoping that they will be able to get me off bypass with how poorly my body is functioning. When I asked the doctors the other day if I am considered “High Risk,” they looked at me like I had a million heads and said, “Someone that is going on bypass is always considered high risk.”
I will be having the surgery that entails putting tubes in me. They are going to be bypassing my esophagus, stomach, and most of my small intestine. They are going to hopefully find a small piece of small intestine at the bottom that might be viable to implant the tube. After the surgery, they will start putting pre-digested food through it. If I am able to tolerate it and it doesn’t stir up the autonomic dysfunction or the other neurological disease, then they will make it more permanent. They also have to make sure that it doesn’t form a “bag” or a collection there because my intestines are so badly paralyzed as well. It is very possible that the stuff being put through the tube will just stay there and form a collection there so I will become very distended and look “pregnant.” The doctors say that I have less than a 20% chance of this operation being successful, but they have to try something because like I said before, I am running out of time.
As long as the tubes are in me, I will never eat again. Never will I have another morsel of food in me again. So, it is very likely that today was my very last meal. I can’t believe that I will never eat again. It is really bothering me to be honest about it. I can’t picture my life not eating. I don’t know how I am going to manage the hunger pains because I know that I am going to be so hungry since feeling “full and satisfied” isn’t just about eating. People feel “full and satisfied” because they have it in their mouth and in their stomach, so it registers in their brain. Since I will no longer have that, I will always be hungry. I really hope the hunger pains won’t be so bad. I also feel horrible because I would hate to go out and watch other people eat. It would probably make me even more hungry. People would probably even feel weird having me around because who would want me to watch them eat?
So I had my last meal. I am surely going to miss my ice cream. That is the one thing I am really going to miss. I can live on ice-cream 24/7. But, hopefully I will have the transplant really soon and then I will be able to eat again. You can bet your dollar that when I can eat again, I am going to gorge myself to no end on anything and everything, especially ice cream.
Well, gonna get going. Going to relax a little because have to leave in a bit for the hospital. So very nervous. I have such a stomachache, but I think it is nerves. I cannot eat or drink anything, not even a piece of gum. The docs told me that if I have ANYTHING, they will cancel my surgery. I was originally supposed to go to the floor first when I got to the hospital and then have transport bring me down, but because of my circumstances and how high risk I am, they want me brought directly to anesthesiology and the pre-op area because they want the actual team to do the intake interview instead of messages being relayed to each other. If I had went to the floor, I would have a different team check me out and such and then they would just give the surgeons and team the info. In this way, there can be no mishaps or confusion. I just hope they put me out like they always do … with my dad instead of bringing me into the OR and doing everything there. Usually they do everything and knock me out before I get into the OR so I am more comfortable and at ease because I am with my dad. Also, it is better because I am so hypersensitive and it makes it easier when they transport me from the bed to the operating table.
Well… gonna get going. The next time I talk to you I will be somewhat the “bionic” woman. Please say a prayer for me that I will make it through the surgeries and that I everything will turn out ok.
P.S. I have to be ok because they don’t call me WAR HORSE and the ENERGIZER BUNNY for nothing!! “I keep going and going and going!” My father is already telling the doctors “Not to let anything happen to me because otherwise he isn’t allowed home!”