Well… I finally had the surgery and finally made it out of the surgery. What a day that I had. I definitely never wanna repeat this day at all. It was definitely one of the worst days that I have every had. I have had plenty of surgeries in the past and believe me… this ranks up there with one of the worst. I really don’t even know what is going to happen because we are supposed to be coming home shortly and we don’t know if I can. I am having a really bad reaction to the surgery and therefore, we don’t even know if I can fly or if it is even a good idea to fly. Everything is just so up in the air right now.
I made it out of surgery and it was so long. Gosh… when they say that it is going to be 10 hours long, they really weren’t kidding. I thought it would never end. I think my dad probably thought the same thing because by the time that it was time to leave, he was going over to all the nurses and saying “I can’t believe that we are here so long.” We were there literally the whole entire day. We were one of the first to arrive at the hospital and we were definitely the LAST to leave. I don’t know who wanted to leave more… me or the nurses because the nurses had to basically stay until I left since I was the last patient. You know?
But now… I am suffering so badly. I am suffering with HUGE fevers and I am in a huge amount of pain. I never had pain like this before. You know it is bad because I didn’t even want to take my nightly medications. I just had the worst stomach pains and the worst headaches. My dad made me eat because he said that “since I didn’t eat all day, I had to get something in me because after all… I couldn’t afford to lose an ounce.” Plus… he thought that perhaps that eating might make me feel better as well. However, it only made things worse. Basically… every time I move… the pain and nausea is out of this world. I only kinda feel the “best” when I lay flat down, but even with that… it isn’t saying much.
I am not only suffering with pain, but I am literally burning up with a temperature and freezing to death. Of course we don’t have a thermometer though on hand to accurately tell what exactly my temperature is, but we can see and tell that I am burning up. Dad wanted to go to WALGREENS, which is across the street to get a thermometer, but I didn’t want to be left alone. I told him that we should send someone, but of course dad doesn’t want to be a “bother.” I have taken Tylenol in the meantime, but I don’t think that it is doing anything. It is just out of this world with the pain, nausea, chills, etc.
What a day that we had though. I definitely don’t want to ever repeat this surgery ever again. No wonder they don’t have this surgery in New York and they only have it in California at a top hospital like Stanford. It really was horrible. It was a surgery that I didn’t even think was possible. To think… it was being used as a “test” too in order to see exactly what is going on with me.
Even though the doctors are 99.9% sure that I need a transplant of the small bowel, which encompasses the small intestine, large intestine, stomach, and esophagus, they weren’t 100% sure and they said that this test would probably finalize things. Plus, this test would also determine if the next surgery in 2 weeks would be “worth” doing, as they were thinking about putting another tube in me that went from my nose directly into my intestines by bypassing my stomach. I would then be essentially “starved,” as I wouldn’t be able to eat anything by mouth and only be given 10 cc of food by the tube, which came out to 300 calories per day. However, if my body and intestines did tolerate it because I suffer from severe paralysis of my intestines and they were scared that if food went in that it would culminate there and form a “bag” and cause more problems, then they would then surgically implant the tube and I would be able to eat by mouth even though I still wouldn’t be able to tolerate the food and still be vomiting, but at least I would be getting the 300 calories on top of the vomiting by via the tube on top of that. So… perhaps it would make me a little stronger and able to cope with things because they are scared that something is going to happen to me, as I really can’t exist at this current weight.
I barely weigh out of the 60s, and no one can weigh that little. I look like an emaciated skeleton and they are so very afraid for my life. They are also afraid that at this current weight, I wouldn’t be able to tolerate the transplant, as it is a very risky and radical procedure. It is the transplant that runs the highest rate of rejection and therefore, I need to be as strong as possible in order to overcome it and tolerate it. As it is, when I do receive it, I will be hospitalized for months. It is rarely done and when it has been done, the most successful cases have been pediatric cases. Only 8 hospitals in the country do it, Stanford being one of them.
Anyway… so they were doing this surgery to explore exactly what was going on in my GI tract, as well as to see if a transplant was necessary and what the next steps would be. I had the best of the best doctors and anesthesiologists because of my complex and complicated history. They couldn’t just use any anesthesiologist because of my complicated history and with all the medications that I am on. So… I had a lot of people in the room to take care of me. As it was already, my bloods were really bad going into the operation and they were so very scared for my health and that my heart wouldn’t be able to tolerate it.
There were so many people in the room when I went for the surgery. Just anesthesiologists alone… there were at least three of them. I couldn’t believe how many doctors were going to be in the surgery. I guess they weren’t taking any chances with me whatsoever. It kinda made me feel better to know that there were a lot of people though in the room even though I would kinda be on “show” because at least I knew that if something should happen… at least they might be better capable to handle it. After all… in my case… you never know what will happen because all bets are off. Something is always happening with me because like my ketamine coma doctor once said, “I am a time bomb waiting to go off.”
I really felt comfortable the way they brought me into the surgery. This hospital did everything in the pre=op area and not in the actual operating room so that it would be as “easy” on me as possible because it would allow my dad to be present for everything that they were doing. I am much better when I have my dad around because I know that when my dad is around… nothing bad can happen. He is my “hero” and I know that he is always watching over me. I know that he won’t let anything “bad” happen to me. I love my dad so much. I don’t know what I would do without him.
So they tried to make me as comfortable as possible. Even when they started the IVs, they tried to make it as easy for me as possible. Of course more than one anesthesiologist came over to do it, as I was always in the hands of “many” docs. The anesthesiologist tried to make it as easy as possible. They worked together because they knew how painful it was for me due to my underlying neurological condition. I am very hypersensitive and anything that happens to me is extremely magnified. A simple needle stick is like someone sticking a “knife” in me. I couldn’t tolerate the IV, but by them working together as a team, they were able to do it. One of the anesthesiologist kept telling me to “hit” him or “squeeze” him as much as possible. But… even though I did do that because it was so painful, I kinda felt bad about it.
Wanna hear something hysterical? The doctors tried to make me as comfortable as possible and since the IV was really painful to me, they tried to make it less painful by giving me something by the IV. No sooner did they give it to me, but I literally zonked out. They looked at my dad in disbelief because they couldn’t understand how that happened. They said to my dad that “It never happened that a patient zonked out with the little amount of meds that they gave.” But my dad assured them that it was me being “sensitive” to meds and that it was because I don’t sleep at all at night and therefore, anything given… knocked me out. My dad also told them not to worry because I would wake up soon. Of course my dad was right because I woke up in a bit.
All the doctors and nurses were extremely nice. I must say that if I ever had to have an operation or a procedure done… I definitely would want to have it here. I never have been more comfortable with a team of doctors. It just stinks that they are located across the country and on the other side of the coast. You know?
Anyway… when it was actually time for surgery, they didn’t bring me into the operating room directly to “knock” me out. Instead, they gave me the medicine in the pre-op area so that my dad would be present and it would make it more comfortable on me. It was so much better knowing that when I was going to “sleep” that my dad was right by my side. Plus, they wanted to put me to sleep prior to getting into the room because since I can’t really be “touched” without being in excruciating pain, they figured that I would be “knocked out” and in this way, they would be better able to transport me more easily from the gurney to the operating table.
What a surgery it was though. When I woke up, I had tubes coming out everywhere. Even though they were giving me pain meds and trying to keep me as “comfortable” as possible, it was unbearable. I had a breathing tube in me, I had probes coming out of me that went into my intestines to see and measure the contractions, and I had other tubes coming out of my mouth. I was in excruciating pain. I just wanted it to come out already. Little did I know that I had like another 6 hours like this to last. It was the longest 6 hours of my life.
When anything happens to my body, my body can’t handle trauma. Therefore, with all this trauma occurring, it really exacerbated my disease. MY body was literally “shutting” down as my blood pressure kept dropping and I kept having seizures and the “shakes.” My body kept going into such cold spells that they had to keep putting “warming” blankets on me because they couldn’t warm me up. They had to be extra careful though because even though my body temperature was dropping like crazy, they could only put the heated blankets on certain parts of my body due to the nature of my underlying neurological disease. After all, I can’t even sleep with a blanket touching my legs because nothing can touch it and therefore, they still couldn’t touch it even though they needed to. I literally had blankets everywhere including around my head and everything.
With all that was happening, after a few hours like this and after all the “horrible” parts of the test were over, they allowed my dad to come into the room while the test finished up. I had to eat a little egg whites with all these tubes and probes coming out of me to see what the intestines and everything else did. However, unofficially, I found out from the nurses that there were no contractions. I haven’t gotten the official results from the doctor, but according to the nurses, there were no contractions… which were not a good sign.
When my dad came into the room, he said that he didn’t even recognize me. He said that I looked like “shit!” He said that I was so “pale” and “white as a ghost.” Plus, he said that he wasn’t really expecting to see all those tubes coming out of me even though they told him what to expect. He said that I looked “awfully bad!”
They also gave me antibiotics through the IV and they also tried the Octreotide during the operation. Of course they did this under “watch” because this was the medicine that I had the allergic reaction to when I tried it at home a while ago. It is used to “combat” the brain tumor, as I suffer from a brain tumor on the pituitary gland and it is causing a lot of problems including headaches, vision problems, bone deterioration, etc. However, the medicine that I take for the gastroparesis happens to “feed” the brain tumor and therefore, they were giving me this injection to try to stop the growth. But, I ended up having an allergic reaction towards it.
They gave me Benadryl just in case I would have an allergic reaction to this as well, but it didn’t really help. Although it did make the reaction “less,” I still ended up having a reaction. It killed me when they gave me the injection. It had to go into some “fat” of me, but because I was so very cold, I was bundled up in blankets and everything. I didn’t want to move and although I knew that the best place and probably the only place to have this injection was in the stomach, I was hoping there would be another place because I didn’t want them to “fuss” with me or anything. I didn’t want to be “bothered.”
The nurses looked for places that were easier accessible, but of course there weren’t any. I have no fat anywhere, so it was pretty impossible. So… I had no other choice but to have it in the abdomen. I really went through the roof with it. I told my dad afterwards that I don’t want to take this injection at all anymore. It was horrible.
I don’t know exactly what the results are because I haven’t met with the doctor to go over everything. I guess I will call the doctor to go over everything today and find out exactly what is going on. I do have some questions as well. I just hope that I make it home because we are supposed to be able to fly home and I am burning up with a fever and really in a lot of pain. Everything is just out of control.
So… I guess that is about it. I came back tot he room and literally collapsed into bed. My throat hurts so much from all the tubes and probes being placed in them. I also feel really “gaggy!” My dad was reading off what to do and when to seek “emergency help” depending on what symptoms you are experiencing. I told my dad that I didn’t want to know any of the symptoms because I didn’t want to freak out more that it was perhaps more serious than it was.
So… another surgery has come and gone. Like “warhorse” and the “Energizer Battery,” I have survived another one. My dad is having fun going around to people saying “Don’t mind her, she is on some trip of drugs.” He thinks it is hilarious.
I can’t thank my dad for all that he has done for me. I really have the BEST dad in the world. I just wish that I can make it better for him because I know how hard it is to watch me be sick and not be able to do anything because his hands are tied. My dad would literally do anything in the world if it meant that I would get well. I just don’t know how my dad would react if the news came back that it wasn’t good and no contractions were seen whatsoever… and that scares me. I am scared for myself, but I am more scared for how my dad is going to take it.
I am also afraid about the next steps that we are going to have to take because they will be 99.9% sure that I will have to return to Cali. Even though this is probably the best place for me to be because the doctors are not like the other places that I have been, I don’t know how we are going to be able to afford it. With all the other medical costs, the bills are amounting and growing and we can barely afford the bills even at the “stay home” costs. With copayments alone and that is with the insurance paying, we spend like $25,000 a year. That is without the traveling, meds, treatments and procedures that aren’t covered by insurances. Plus, it doesn’t take into account all the money that my dad loses because he can’t work. After all, when he doesn’t work, money doesn’t come in.
We have made so many cuts at home, but they are not nearly enough. We are really struggling. I have tried a countless number of ways to raise money such as contacting famous people, contacting media, contacting everyone that I can think of, setting up websites for donations, etc., but nothing has come out of it. It really stinks that my websites were successful in the beginning but since then, they have died out. I have hung flyers in stores and such, but they haven’t really done much. It really stinks also that no matter who I contact such as the news and other television shows… I don’t get anywhere. I see all these other people on TV and such getting help and no matter what I do, I can’t get the attention that I need on my story. U know?
It is really important that we get some help in donations and funds because it is really expensive. This disease is extremely costly. Gosh… people don’t realize that when you have your “health,” you have everything. I know that money is tight, but if everyone would just donate $1, it would clearly add up. I don’t know how we are going to afford this, especially with the trips to Florida for the ketamine coma (which is not covered by insurance) and the trips to California, which are very expensive.
If you have any suggestions or ideas in how to raise money, I would really appreciate it. Please send you suggestions in the “comments” below or to Spunkyfal@aol.com.com. Anything that you can contribute would be much appreciated.
Anyway… it is getting late and I am not feeling well. I am going to rest because my esophagus and throat really hurts. I also wanna see what movies are available to “rent” on the iPad so that if we do travel home, at least my dad and I will have something to watch on the way home since the time traveling is so great. It will take literally like 10 hours to get home and therefore, we have to find something to do before we go crazy. Plus, besides my dad and I loving to use the iPad and watch movies, at least maybe it will take my mind off the discomfort that I am having from surgery.
Thanks again for everyone’s well wishes and encouragement for this difficult time in my life. I can’t thank you enough. If it wasn’t for these encouraging remarks, I don’t think I would have the “power” to go through this. Thanks so much for all the support because it really means a lot to me. I thank you from the bottom of my heart and will keep you posted. I will let you know when I hear anything. As it is though, when I do come back… I am going to be meeting with the neurosurgeons and brain tumor specialists because the tumor has to come out. So… I have that to look forward to. I am just so nervous to eat or drink anything because my esophagus is bothering me. I am so very afraid that between that or by vomiting, it is going to rupture or something, even though that probably won’t happen. I am just so uncomfortable.