Everything is so hectic around here. So much is happening that it is unbelievable. Every time you think that you heard “everything” or that you are “safe” from hearing anything bad because it is the weekend… something else comes your way. I keep getting whacked with news below the belt and getting knocked down. Thank goodness I am still standing, but I don’t honestly know how much longer that is going to be for.
I spoke to my head doctor the other day. He is making all the necessary arrangements for my arrival in California on September 23rd. However, I am now bleeding a bit more and suffering more as well. The doctor really is hoping that I will make it down there, especially because of the bleeding. He really would like me to go to the hospital here, but he knows that they probably wouldn’t know what to do with me. I am a very complicated person and therefore, he understands me not wanting to go to the hospital here since they aren’t the “experts” in my condition and don’t really know how to handle me. So… the doctor said that I can remain out of the hospital, but if it should get worse, I have to go ASAP into it. He is just hoping that I will be able to last until I make it to California.
The doctor thinks that I am bleeding from my intestines. He also thinks that my stomach could also be bleeding, but he is 99.9% sure that at the very least… the bleeding is coming from the intestines. Therefore, the doctor is going to implant a camera during one of the surgeries into my intestines so that he can see what exactly is going on.
He is surgically going to place it in my intestines because I can’t “swallow” the camera. One time I had that procedure and it was worthless. I ended up throwing up the camera a few hours later because nothing passes through my stomach. Therefore, he has to place it in my intestines so he knows that it will be in my intestines.
I also learned that in order for me to undergo the surgeries, including the tube placements in my small intestine, he will be putting me on total bypass. Since I am so very sick, I cannot withstand the surgery without being put on a heart/lung machine. It really scares me to know that I am that sick that I wouldn’t survive an operation otherwise. I mean… I knew that I was “sick,” I just wasn’t prepared to be put on a heart/lung machine. But, the doctor said that his would be the “safest” thing to do under all the given circumstances.
What really scares me though is that I have heard so many stories of people having difficulty coming off the heart/lung machines. I am extremely nervous because I am not in the greatest condition and if that is the case, I wonder how my body is going to take it. I am also worried about it because I have a habit of filling up with “air” and it makes it feel like I am going to “suffocate.” I am so afraid that I am going to be so blown up on gas afterwards that I won’t be able to get the air to. But, I guess I have no other choice because this is the “safest” way to undergo the surgeries. After all, these aren’t simple surgeries either.
One of the surgeries that I am having besides having the camera placed in my intestines is being given snail venom. It is for my underlying neurological disease. They pioneered it there and only is done there too. Hopefully it will work because it will get me off some of the meds that is compounding “killing” of my GI system. Plus, my neurological disease is spreading like a wildflower and affecting everything. So I desperately need something to stop it because all other treatments have failed in the past.
In addition, I will also be having surgery to get tubes placed into my small intestines to see if they can “buy” me time. I am rapidly deteriorating and rapidly running out of time. I desperately need the transplant, as that is my only real “help.” However, it is going to take some time to get that and it is also really risky to undergo the transplant, as it runs the highest rate of rejection of all transplants. If they could avoid it, it honestly would be the best thing because of how dangerous this transplant is. I will need a new stomach, small intestine, large intestine, pancreas, etc. It is extremely dangerous because most of your immune system comes from these organs. It also not only entails having a neurological supply but some of these organs are just “vascular.”
I have less than a 20% chance of this surgery for the tubes working, but they are willing to try it because we need something to work. If I was a male, I would definitely have been dead because my levels are way too low. Thank goodness I am a female because females can live to a lower level. They can live to a 12, and right now I am like a 12.2. So… I am really borderline death and time is of the essence. They are hoping to find a tiny piece of intestine that might be viable even though they are pretty sure my entire GI system is completely GONE. They are hoping that perhaps they might just find even an inch of the small intestines that is viable in the lower portion of the small intestine still. So… they are placing the tubes in me to see if this is the case. They will bypass my esophagus, stomach, and most of my intestines so that it will go directly into the lower portion of the small intestine. If it works and I am able to tolerate the tubes, they will then do another operation and surgically implant the tube so that the tubes will be more permanent. Of course if I can’t tolerate the tubes, that is it and they will be removed. It will be considered a failure and then we will have no other options probably and just have to wait and pray that I get a transplant in time and that it works.
The doctor is making all the arrangements so that I won’t have to go to the ER first and wait for all hours in there. He told me that when I arrive in California, there will be a bed waiting for me. So, I can just go to ADMITTING instead. The doctor said that since I am arriving on Sunday, I can go straight to the hospital, but I told the doctor that I rather wait til first thing on Monday because by the time I arrive in San Francisco, I am going to be too tired and too weak to go to the hospital. Traveling really takes a lot out of me and I really am not going to be in the mood to be traumatized by being poked and prodded in the hospital afterwards. After all, I will be traveling for over 8 hours that day and it will have taken a toll on my whole entire body. Even though they will have overmedicated me to get me there, I am sure it will still stir up my illnesses, especially my autonomic dysfunction. In addition, by the time we arrive in San Francisco, it will be late afternoon. By the time we get to the hotel and everything it will be close to dinnertime and therefore, I figured that even if I did go to the hospital, what would they do me really on a Sunday night? They probably would begin on Monday anyway, so why spend an extra night in the hospital when I don’t have to, right?
When I do arrive at the hospital, they will prep me for surgery and in 6 hours after I arrive, I will undergo the very first of the surgeries. I already said to my dad that he BETTER be there when I wake up because he is starting to tease me about saying how he is going to be gallivanting around and sightseeing. Of course he is only kidding, but still!! I hate how he can joke around and I can’t. Anyway… they will have a lot of surgeons in the room because of how complicated I am. The last surgery that I had there entailed having 4 anesthesiologists in the room just to monitor me. Talk about making a ruckus, right? They try to make it as comfortable for me as possible, as they put me “out” in the presence of my dad instead of bringing me into the OR and doing it there. They also do it in that way so that when they transfer me from the gurney to the operating table, it is a lot easier on me too. I like it so much better because I feel better knowing that my dad is right by my side when I go under. At least I know when my dad is there, nothing “bad” can really happen. You know?
I am not sure honestly if I want the tubes. I feel weird saying this, but I don’t know if I want the tubes to work even though they will “buy” me time. First of all, if they should “buy” me time, then that would me that it will put me “lower” on the list for the transplant because they will give a transplant to a person who has less time and has no time “bought” before they give it to someone that has a mechanism to keep them alive (even if it is for only a limited amount of time). So… even though these tubes can basically only last for an extremely limited amount of time, it might force me to go lower on the list and therefore, it might really hurt my chances of getting a transplant. But… on the other side of the coin… the transplant is so risky and dangerous that maybe it is better off to be able to survive on time “bought” and not have to undergo the transplant even though the transplant would give me back my life and the tubes would not let me eat anything ever again. If the transplant would definitely work, it would be the perfect option because I would get my life back. I would be able to eat whatever I want, whenever I want. But it is so risky. However, if I get the tubes, I will never put a morsel of food in my mouth again. It really is a no win situation… that is unless I go for the transplant and it is a HUGE success. So… is it worth having the tubes work? I just don’t know.
I’ll also be honest with you because honesty is the best policy and I promised to always be honest with everyone. I am also really afraid of getting the tubes because I am afraid of seeing them. I know that other people won’t really see them, but knowing that it is there and such… I don’t think I can handle it. It really is bothering me to know that I am going to have a tube coming out of me. Another thing that is bothering me is knowing that I won’t be able to eat anything at all ever again. I mean… eating is such a big part of life. Who would want to go out with me if I couldn’t eat? I know I would feel uncomfortable sitting at restaurants and such and watching people always eat. Wouldn’t others feel uncomfortable as well just having me watch them as well? I will always be hungry too because feel “full and satisfied” is not just about nourishing your body. It is about taking in food in your mouth and your stomach so it registers in your brain. Since I will never have this, I will always be hungry and my stomach will always be rumbling. I don’t know if I want to have this feeling of hunger all the time. Even though I technically won’t be “starving,” I would still be feeling hungry because I am not “eating” and it is missing my stomach. It isn’t like a NG tube or G tube that goes into your stomach. People that have those feel “full” because the food enters their stomach. My stomach is going to be out of commission.
Well… I also spoke to the doctors today and it turns out that I have more problems. Every time I think it can’t get any worse, it somehow does. I also thought that I was kinda “safe” from getting bad news today because it is the weekend and doctors really don’t work on the weekend. But… I guess I was wrong. I guess like the doctors said to me in the past, “They don’t call it Stanford for nothing.” Doctors there are really different than any doctors elsewhere. They really do care. They actually call me back whenever I have a question, have meetings together so that they constantly talk so that they are on the same page, and they even go out of their way to see me. I can’t even believe their office hours because instead of a traditional 9-5 day, they work from 7 AM to 7 PM. So, when the phone rang today… I was kinda surprised to hear from them. But, when I saw that it was them, I kinda knew right away that it couldn’t be good because why else would they be calling?
I found out so many things. First… Turns out that I have severe scoliosis in my thoracic spine. It’s called Dextroscoliosis. Dextroscolosis is a medical term that refers to a curvature in your spine that, when viewed from the rear, curves to the right. In the case of thoracic Dextroscolosis, this curvature is located among the 12 vertebrae that also serve as connection points for your ribs. These vertebrae are designed to help stabilize and support your internal organs and the weight of your upper body. They are very worried because not only does it contribute to muscle fatigue and pain, but it is interfering with my breathing.
However, in addition to the Dextroscoliosis, they found out that I have severe osteopenia in my spine as well and in the vertebral bodies. They are very worried about this because my bones are paper-thin and they can’t take any stress. They are worried that the pressure exerted by the air/gas that is in me will end up collapsing the vertebral bodies and I will become paralyzed or something worse. Since my GI system has failed, I am filled up too much with air and gas and it is not only putting pressure on my organs and causing them to fail, but putting pressure on my spine as well. It is also twisting my colon and if it completely twists, it will be an extreme emergency because I can die. In addition, once those vertebral bodies collapse, we are in for HUGE problems. Something has to be done. That is why I need to go to the hospital to get the “rectal tube.” It will try to alleviate the gas/air in my system, but it will only be temporary. It will immediately come back soon after and therefore, it will be a merry-go-round to the hospital constantly.
Secondly, they found out that my sacroiliac joints are deteriorating on both sides. So, it is causing a lot of problems and is especially not good considering I am only 30 years old.
Thirdly, they found masses in my lungs. They are pretty sure that they are granulomas though. They think it is because I am aspirating like crazy due to my poor GI function. It is not good because it can lead to trouble breathing and such. Aspirating itself can give me really bad infections in the lung, so it really is no wonder that I have these granulomas. After all, granulomas form when the immune system attempts to wall off substances that it perceives as foreign but is unable to eliminate. Such substances include infectious organisms such as bacteria and fungi.
Fourthly, I have thickening of the pleural wall of my chest cavity. The pleural cavity, in humans, refers to the body cavity that surrounds the lungs. This cavity is composed of a bi-layered membrane termed pleura. Bilateral pleural thickening refers to thickening of this membrane in both lungs, and causes trouble breathing and chest pain.
Fifthly, I found out some info finally about my brain tumor. Due to everything that is going on with me, they are holding off a little longer with operating. They want me first to see a neuro-opthamologist. From the last MRI report, the tumor grew a bit, but because it is too risky to operate, they are waiting. It measures 10 by 6 and right on the pituitary (the master gland of the body) so it is causing its own set of problems.
Finally, my bloods are not so good, as my folate and B12 level are a way too high. It could mean a lot of things, but it probably shows the malfunction of my GI system and how I am not absorbing. It could also mean Leukemia, but I doubt that I have it. Yet, it still keeps popping in my head as a possibility even though I am 99.9% sure I don’t have it. The highest folate should be is 570 and mine is 1975. I am so nervous.
The doctor did say that he can’t wait to see me and that “They are all looking forward to seeing me.” It kinda drives me up the wall whenever he says this because I CAN wait. I am so very nervous to go and I really don’t want to go despite knowing that I need to go in order to save my life. I just hope that I will be able to go because I really need help with the finances. I don’t know how on earth we are going to afford this.
So… I have a lot to undergo when I go to Cali. I have to just make it to Cali and hold out til then. I haven’t been feeling well at all and I have been having a lot of “out of body” experiences. It is the weirdest thing and only people that really undergo it can really understand what I am saying.
I just can’t believe that in 2 weeks, it could very well be that I might never put another morsel of food in my mouth. I asked my mom if the night before I leave for California if we could have an ice-cream party dinner. I said can we just eat mounds and mounds of ice cream for dinner and load up on all the toppings and everything since it is my absolute favorite and since I won’t be able to have it once I get the tubes. That is one thing that I am definitely going to miss. I just LOVE my ice cream. My mom said it was OK, but I don’t think she was taking me seriously.
My mom did ask me what I would like to have to eat in my last few days of eating. She asked if there was anything that I would want to have. Gosh… I never really thought about it until she asked me that. There is so much that I want to eat, I just can’t name just one. I have decided that I am just going to enjoy as much food as I can for the next 2 weeks!!
My dad’s birthday is today. I really wanted to make his birthday special for him, especially since he does so much for me. I also wanted to make it special for him because this could be the very last birthday I am here for. It is a very real possibility of that because I am rapidly deteriorating and even the docs don’t think that I have much longer to go. I just feel so bad because my dad has been working so very hard just to try to get money for my treatments and to get the “work” out. He has been working nonstop and is basically ready to collapse. He works 7 days a week from like 4 AM and doesn’t get home til 7 PM. He is totally exhausted. I even have to wake him up and get him out of bed despite him having his alarm clock set. Thank goodness I never sleep, right?
I am really upset because he even has to work on his birthday, which is something I am really upset about because this should be his day to enjoy himself and relax. He definitely has given up so much for me. I can never thank him enough for all that he has done for me. My dad is not only my “dad,” but he is my best friend and my “hero.” I definitely wouldn’t be here today if it wasn’t for him. I got him a nice cake, but I wish I could do more. But due to the circumstances, between the finances and because my disease limits me, I really can’t do anything more which bothers me. I just hope he knows how much I love him and how much I appreciate all that he has done for me. I definitely wouldn’t be here today if it wasn’t for him.
What scares me the most about this whole disease is not being here for my dad. I am most scared of leaving him because I know he wouldn’t be able to survive. I am very scared for the surgeries in 2 weeks too because my dad will be there alone. I am afraid that if something happens, no one will be here to support my dad.
Well… gonna get going. I really desperately need the help of others. We can’t really afford treatment anymore, and we definitely can’t afford California without help from others. If you can do anything to help such as by donating or spreading the word that we need help or even saying a prayer… that would be awesome. Thank you so much for everything.