Well figured I would touch base with you because so many things are happening and we are getting closer and closer to leaving for Indiana. I am supposed to be leaving on Sunday for Indiana, but hopefully that will still happen. I am rapidly deteriorating and the closer we are getting to Indiana, the worse it is getting. I am just hoping I make it there instead of ending up in the hospital because at the rate I am going… it is going to be an extremely close call.
Things are not going well at all. I am rapidly deteriorating. I never thought honestly that things could get so bad. It is like all the stuff that I was going through before was “nothing.” If I thought it was “bad” before, it was “nothing” in comparison to what I am going through before. I never thought it could get this bad. I literally spend the entire day and night crying and screaming. I am literally climbing the walls in EXCRUCIATING pain. I never felt pain and suffering the way I am feeling it now. Nothing that I do is cutting it.
It hurts so badly and the pain goes from my head down to my toes. The pain goes throughout my body from the very surface of my skin to the deepest core of my bones. Nothing that I do helps and it stinks. I am maxing out on all my meds and have even “overdosing” just to try to get some “relief.” But… nothing is helping. I literally spend the entire day/night screaming and laying on the couch because that is all that I can do. Not only am I suffering in excruciating pain from the pain itself throughout my body because of the neurological disease/autonomic dysfunction, but I am also getting the most severe stomach pain that is so debilitating that you can’t imagine. I literally just lay there and unable to move. My brother says I look like a “curled up cat.” I can’t take it. It not only knocks me out because of the intense stomach pain, but it feels like I either perforated my intestines or there is a blockage in my intestines are something… which is very possible with what I have wrong with me because with my severe gastroparesis and my “paralyzed”/”dead” GI system, it can easily make my intestines perforate or have an obstruction.
In addition to the pain and such, I am also having a huge amount of trouble breathing. My heart is also bothering me. Not only am I having difficulty breathing and such in general, but when I also cry and scream… it makes it even harder to breathe. I had my bloods taken and they came back not too good. Not only have my bloods further dropped so that I am at further risk of having cardiac arrest and an arrhythmia, but I also have developed an additional problem now. My clotting factors are now off in addition to all the other problems that I have had in the past (the bloods dropping, the high amylase level, the organs shutting down, the pituitary gland secreting too much prolactin and such because of the tumor, etc.) It appears that my clotting factor is too high and therefore, it is difficult for me to “clot.” This is definitely not a good thing especially when I am going to be going for a transplant.
With not being able to clot and such, it could be the reason why I am producing more mucous and blood. I am bleeding internally from somewhere, but the doctors can’t figure out where it is coming from. Unfortunately I keep producing tons of blood and mucous from below and it is at he point where it is getting to be nonstop. Every time I go to the bathroom, only mucous and blood come out.
I have also been having problems with “blacking out.” I don’t know what is up with that. It is really freaking me out because I don’t know what is causing it. I can’t say it is from “getting up” to fast because even when I get up so very slow or even sit for awhile before getting up, I still end up “blacking out.” I will literally get tremendous pressure in my head, especially on my right side, and I won’t be able to see for a couple of minutes because it will be totally “black.” I have no idea what the cause can be, but it is really freaking me out.
I have really been suffering with pain in my stomach and it feels like I have a perforation and obstruction in my intestines. With my condition, it is very possible. In fact, the doctors are very scared that my intestines are going to “twist” because of all the pressure that the air in me is exerting and if that would happen, it would be a real emergency because that would really kill me immediately. However, I have noticed lately that when I take my injections in my abdomen, it has been getting more and more difficult. Not only is it getting more and more painful, but it is also getting harder and harder to inject because there is getting more resistance. I never felt pain like I have been getting when I have been injecting lately. I wonder if it means anything between the pain and the resistance. It just so happens that where I inject also happens to be where I feel where the blockage/perforation is located, so could it mean something? I just don’t know.
I have also been having a great deal of trouble swallowing. I can’t swallow anything… even the littlest that I was swallowing before. When my grandma was telling me how she “couldn’t swallow her pills” and was complaining so much before she died, I always pushed her to do things like to take her pills and such. But if I knew it was this bad… I probably would never have done it. It is really horrible. My mom stays with me while I take the meds and such, but it can literally take me ½ an hour to take my meds because I can’t swallow them. To think… I take over 50 pills a day and I don’t just take pills once either. My day is just horrible and full of suffering. Between the pain, swallowing, vomiting, etc. I never get a moments rest. It is just getting to be impossible to function or even survive.
Also, the discoloration is getting worse as well. Even though I turn colors because of my neurological disease/autonomic dysfunction, the discoloration is getting so much worse. I am like a chameleon because I am constantly changing colors depending on the time of day. I can easily go from a very “normal” color to purple or black in a matter of seconds. Of course my left leg and foot are the worse. However, the discoloration has been getting worse in the sense that it has become even “blacker” than before. The doctors have already said that even if my neurological disease/autonomic dysfunction was cured, they don’t know if my foot/leg (especially my left) could be saved because so much tissue has already died. But with the leg and such turning blacker than usual and me feeling worse in general, I don’t know if all this stuff is all incorporated altogether. You know?
The pain is so intense and there is nothing that can be done. I keep telling my dad to knock me out. I keep telling him to treat me like a punching bag and hit me as hard as you can so that they will KNOCK me out. I told them “not to worry about killing me because punching bags always come back up!” But of course my dad won’t do that. I am suffering so very much. My dad wants to take me to the hospital, but of course I don’t want to go. My dad is so fearful of something happening to me, and in his mind… nothing can happen to me if I am in the hospital. However, he doesn’t realize that the hospital (especially the ones around here) are not always the best place for me even though the doctors have even told him directly that the hospitals aren’t really the “answer” and such. The doctors have even told him that if I were to go to the hospital, I would need to go to a hospital that would be able to handle my complex disease, which would be probably California or Indiana, but even that isn’t necessarily the “answer.” Doctors don’t really like to have me in the hospital because diseases and infections lurk there big-time, especially with the flu going around. I have no immune system and therefore, I catch everything. Even when I go for surgery or something, doctors like to get me out of the hospital ASAP because they don’t want me in the hospital since I am so susceptible to everything. If I catch anything, I am in HUGE trouble because the slightest cold is like getting the FLU to me and can easily kill me.
Even though I know that the hospital is probably the best place for me, I know that it isn’t the answer. I know that I probably will get sicker there because of all the other infections that are lurking there. Plus… we are supposed to be leaving on Sunday for Indiana and we would never be able to go if we end up going to the hospital. I came to far now to end up missing it. It is way too important to go to Indiana because my transplant depends on it. I am supposed to go to Indiana on Sunday for the finishing aspects for the posting of the transplant since I need a multivisceral transplant ASAP and without it, I will surely die. I need a new stomach, pancreas, small and large intestine, and liver. Hopefully after my trip to Indiana, the call won’t be long after that the organs are available that I will be able to have the transplant. After all, I am desperately running out of time.
In addition, I really can’t afford to go to the hospital really either. I would hate to spend all that money to go to the hospital and then have to pay that money again when I go to Indiana. It really stinks how money rules the world. I mean… I would love to go to the hospital to get some pain relief because nobody should suffer in pain. However, just going to the ER will cost me $200. Then if they do any scans or radiology, which we know they will because I am suffering, it is extra. Each scan is $100. Plus… if I go for any procedure because scans don’t always detect everything and I am sure that they would want to do an endoscopy and such (especially with my history), it would cost be another $150. Then if I am admitted, which would probably be guaranteed because of my declining health, it would cost me $150 a day in copayment. So, as you can see… it isn’t so easy to just “go” to the hospital. It would really rack up the bill if I would go. It would also stink to go to the hospital especially since I am going to Indiana so soon because they are going to be doing all these tests anyway. So that means that I would have to pay for them twice. I can’t even afford them once… let alone twice. So I am just hoping to save the money for Indiana.
Since things are getting so very bad, the doctors are thinking about putting me into an emergency ketamine coma tomorrow (Friday). However, we don’t know if it is the smartest thing to do because it might interfere with going to Indiana since we leave on Sunday and ketamine can interfere with my entire body. Since I will be having a lot of evaluations/tests/clearances, we don’t want the ketamine to change or jeopardize the transplant. It is important for the doctors in Indiana to get an accurate picture of everything that is going on and for the ketamine not to “mask” anything that is going on because the transplant is so very radical and dangerous. I need all the surgeons to get an accurate picture of what my body is like so that they know how to “treat” me because its like life/death when I go for this transplant. It is a mega surgery that is like a whole day’s worth of surgery. They will literally be “gutting” me and removing an entire system. There hasn’t been one transplant done that hasn’t had a complication. The survival rate isn’t too good, and the one-year survival rate is only like 75%. From that 75%, the survival rate for 5 years is 50%. So, if you factor in all the numbers, the overall survival rate isn’t too good after transplant. But, I have no other choice but to get the transplant because without it, I will surely die soon. My goal is to get the transplant because medicine is surely changing and in 5 years, who knows what medicine will be like? It can be totally different and there can be something else that will make me live longer. You know?
Ketamine is an NMDA receptor and even though it will be tremendously helpful in benefitting me right now because I am suffering so much, we don’t know if it is the “right” thing to do. It will definitely give me a day free of pain and hopefully make me able to “function” better, but it could really make things worse in terms of the transplant. When I go for the ketamine, it also changes the way my body functions. It works on my autonomic dysfunction and nervous system and therefore it can really make a difference in the clearances/transplant evaluations. After all, the doctors have me going for every test/evaluation that you can imagine so that they can get an accurate picture of me and know what they are dealing with. It would be pointless to get the ketamine so that it will change something. What would be the sense of having all those tests then, right? I am getting tested from head to toe… everything from psych clearance to a pap smear to a mammography to stress tests to liver biopsies to colonoscopies to more.
So, we are waiting to hear what is going on. The doctors are having meetings and trying to figure out the best thing to do. I have the best transplant team in Indiana because not only is he the nicest doctor and always gets back to me, but he tries to make sure he is on “top” of everything. Even though we asked him if I could go for the ketamine coma, he wouldn’t give me an answer until he “discussed” it with my doctors. That shows he is a good doctor because he wanted to know all about it and cover all his bases before making a judgment and such. He wanted all pieces of the puzzle before making a decision because he didn’t want to make the wrong decision. He wanted to know exactly what he was dealing with when I go for the ketamine coma here in New York.
Most likely I will probably be going for the ketamine coma on Friday, but we aren’t 100% sure. I am having a meeting with the doctor later today, so I will know for certain today.
Well… I am getting ready to leave for Indiana on Sunday and I am so very scared. I am so very scared for the transplant and so scared of dying, but I am more afraid of remaining the way that I am. I really am suffering and I don’t know how much longer I can hang in there. My dad has been staying awake with me all night. The meds knock me out for a little bit to take a brief catnap for about an hour at the most, but that is about the most sleep we get. I have even found sleeping on my dad’s belly helps. I guess sleeping with him makes me feel “safe” or something and it makes me feel more at ease. One time when I fell asleep on his belly, my dad was like “you are so light I didn’t even feel you. You are lucky I didn’t think you were a fly and hit you!”
Missy has been babysitting me and won’t leave me alone. She always knows when things are bad. It’s amazing how pets can tell. Whenever I am worse than usual, she always stays with me and since I have been doing so horrible, she won’t leave my side. She will literally follow me everywhere… even when I have to go to the bathroom… only to follow me back to bed afterwards. Its amazing the bond that we have. She even stays on the computer all night with me and is my “partner-in-crime.” I never met a cat who loves to be on the computer. She just loves watching me be on it. It is really something. If I didn’t have her, I don’t know what I would do. I am going to miss her so very much when I leave on Sunday and especially when I leave for the transplant because I will be gone for so long. When I have the transplant, I will be gone for about 2 months.
I am so scared about how we are going to manage the transplant. We don’t have the money and I don’t think we are going to be able to honestly pull it off. My parents say that they are “not going to let me die,” but I tell them to “just let me go” because it would be the best for everyone. I am really causing a lot of problems and in the whole scheme of everything… it would solve a lot of problems.
My family has really been suffering along with me and if I moved on, at least they would have their life back. I can’t thank them for all that they have done for me because they have literally given up so much for me. They have totally given up their lives for my illness and me and they certainly don’t deserve that. They deserve better. They can’t do anything!! They can’t go on vacation, afford new furniture, or even go out for dinner. Their lives center on me and it isn’t fair to me. They are in such financial debt because of me and they should definitely be at a time in their lives where they should be enjoying themselves.
In addition, the bills are astronomical. We have such financial debt that it isn’t even funny. We are having even difficulty paying the mortgage and putting food on the table. I never thought in my life that things could get this bad. I really wish I could make it better for them.
I told them to “let me go” because they don’t deserve this. I wish they didn’t have to “suffer” like this. If I wasn’t here… they wouldn’t have to worry about suffering like they are currently doing. In addition, I would be out of my suffering as well. I am suffering so very much and to be honest… I don’t know how much more I can take. I have to admit, the journey lately has been even more difficult than before. As I am deteriorating rapidly, I am getting sicker and sicker. I never thought that I would ever become this ill. Yet, the irreplaceable heartiness, love and support of my family are the sources of my strength. They enable me to continue on.
I really don’t know how we are going to afford this transplant and my parents know it. But they keep saying that they “aren’t going to let me die.” Their business is really suffering as well and when I do get the transplant, I know that the business will never survive because my dad won’t be able to be there for 2 months. Without him being there, no work will really be able to go out and we won’t be able to even take home an income. With having no money already, how are we going to manage then? If my parents lose the business because of me and the transplant or the house, I would never forgive myself.
Even though they don’t want me to “die,” I really don’t know how they are going to afford treatment and the transplant. Everything is maxed out including all the charge cards and we are unable to get any more loans. I know that if they could afford treatment… they certainly would. But even though they would if they could… I don’t see how they are going to be able to. I know that they wish they could, but I don’t foresee that happening. I just think that they are hoping that something turns around or something because they don’t wanna lose me.
We have tried so many things to get help and yet… nothing has been productive really. I am severely deteriorating and we are literally pleading with people for help and yet… nothing is working. We have tried numerous ways to get funds and such, but nothing really worked. We tried posting on Facebook, making a website, contacting the media, contacting talk shows, contacting famous people (even the president and Queen Elizabeth), making flyers, etc. It is so unfair that we can’t get media attention despite how many times we tried. Yet, there are so many other people who get media attention and here I am dying and desperately need it and can’t get it. I guess it is like the saying goes… what you know… it is who you know!” We desperately need help and yet… no matter what we do… it just isn’t working. We appreciate the little amount that people are donating from the bottom of our hearts and such, but in reality… it isn’t going to help in the overall picture. But of course… any little amount helps. Every $1 makes a difference.
We need so much money in order to afford treatment. To continue treatment, I have to be able to afford the costly medications, copayments, traveling expenses, surgeries, ketamine comas, etc. Copayments in general cost us over $30,000 a year from our pocket and that is with insurance paying for things. We still have to worry about all the meds and appointments that aren’t covered by insurance. Since I am constantly traveling to Cali and Indiana because that is the only place that can help me, we desperately need traveling expenses as well. When the transplant becomes available, it will cost us $13,000 to get us down to Indiana. We don’t know how we are going to pull that off. Then we will have to be living there for 2 months without an income and therefore, we will need money to live off of (which we don’t have). In addition, I need a costly ketamine coma that is not covered by insurance either in addition to this very expensive transplant. There just doesn’t seem like there is a light at the end of the tunnel.
I am still hoping that perhaps things will turnaround. My birthday is quickly approaching, as it is February 7th. The doctors already told me that if a miracle isn’t found, I will definitely not see my next birthday. I am really hoping for my birthday wish that get my miracle or at the very least that I get the “help” that I need to at least get my “chance” of living. I really have so many plans that I never got a chance to do yet. I was robbed of so much because of this illness and I want it back. I want to be able to get married, have a family, and become a doctor. But… of course that won’t happen unless I get better and that is all dependent on treatment, which of course is dependent on the money issue. It is a shame how everything revolves around money. I truly wonder what this world would be like if money didn’t exist.
I am hoping to be around for my birthday and perhaps get the transplant after my birthday. Since I am so very sick, I would like to at least spend my birthday with my family because this very well is probably my last birthday and I want to celebrate it with them. Plus, if I have the transplant beforehand, I won’t be able to be with my mom because my mom won’t be at the transplant because of funds. Only my dad is going to be able to be with me. So, I am hoping that I receive the transplant right afterwards.
I am also supposed to be leaving Feb. 2nd for Cali because they want to put me into a ketamine coma to try to “buy” time because without it, I am not going to make it. They will put me into a coma for a few days and try to “buy” me this time and while I am in the coma, they will put tubes in me and such to try to “build” me up. But everything is dependent on the transplant and such. So I will keep you posted.
In the meantime… it appears we are off to Indiana on Sunday. We are going to literally FREEZE there. I can’t believe how cold it is going to be there. It is only going to be a high of 14 degrees there. I told my dad that they are going to have to literally pull me out of the plane and use a crowbar to ply me out because it is going to be soooo cold. I hate the cold weather.
I am so scared for Indiana. I can’t believe it is only in a few days. I dread going because I don’t have the energy to go. I just hope that I will make it there because it takes so much out of me to go in general. But with me feeling the way that I have been lately and rapidly deteriorating, who knows what is going to be the answer. I just hope that I don’t get sick because of all the infections and flu going around. They brought me a mask to wear so that I won’t catch anything.
So this is it… finalizing everything for the transplant. I will def keep you posted as to what is going on. My dad was funny because he was like “how are we going to get to Indiana in 4 hours when the transplant becomes available even with the plane coming and such?” The doctor was like “You know when you have a bag packed when your wife is pregnant so when her water breaks you have everything ready to go? Well… same principle!!” Only my dad would think of something like that!!
Thankfully I will have my dad with me when I go to Indiana because I know that nothing “bad” can happen when my dad is there. I have the best dad in the world and I am so thankful for everything that he has done for me. I am so scared that something is going to happen to me because I know that if something does… he would never survive. He already keeps bribing me to keep me going!! He even tells me that when I die, I am going to hear “open the gates wider… big man is coming up” and I am going to know it is him coming because he is going to eat himself to death. I am always taking care of him and making sure he eats right and takes his meds. He said that if anything happens to me, there isn’t anyone going to be able to do that. Like he really needs someone to hold his hand to do this for him, right? He can do it. But… he is just trying to say anything to keep me going because he doesn’t want to lose me!! He even admits it!!
Can you really blame a parent when he’s trying to do something to you because he LOVES you so very much and doesn’t want anything happening to you… yet, it only means you suffering so very much? I say to my dad, “Why are you doing this because I am only suffering and it’s only making me suffer more? You are being selfish!” My dad responds, “Yes… I am selfish!! I don’t wanna lose you!!” At the very least, he admits it!! So how can I still be so very mad at him for what he’s doing even though it means me suffering so much more? If something happened to me… my dad would never be able to recover!!
On a better note, I recently saw the movie LES MISERABLE. What an awesome movie. I normally don’t rave about movies, but this movie was outstanding. It was simply amazing. I have also been trying to keep myself busy by playing games on my iPad and doing some reading. I am still reading THIS IS WHERE I LEAVE YOU by Jonathon Tropper, but if you have any other ideas of something to read, please let me know. If you have any good iPad/iPhone games… please let me know too because I need something to keep my mind going.
Well… going to go and rest!! I will keep you all posted. As Eleanor Roosevelt once said, “We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot.” So I just gotta do this and go to Indiana because I have no other choice. I just don’t know honestly how much longer I can hang in there. Just hoping that I will get my birthday wish of getting enough money to continue receiving treatment so that I can have the ability to LIVE!