Well just wanted to keep you up-to-date on all that is happening since things are happening so frequently lately and everything is so “bad” lately that we never know from one minute what is going to happen or what the next step is actually going to be. We never know from one minute to the next if I am going to be “here” or not because with everything being the way that it is… I am basically walking a tightrope between life and death, and that rope is ready to snap. I am trying to hang on, but to be honest… it is getting harder and harder.
I am also writing because I have another doctor’s appointment in the morning. I have to go for my bloods and if things continue to worsen, I am really afraid that I am going to be hospitalized. They really wanted to put me into the hospital on this past Monday, but I refused to go. I really wanted to remain at home because I hate hospitals and because it was also Christmas. I also wanted to try one more time to see if taking added medication can possibly raise my bloods, but I know deep down that it probably is a worthless attempt. Even my dad says it is probably “inevitable” that I am going to end up in the hospital.
Even though I am so very sick and I know that the BEST place for me is probably to be in the hospital, I really don’t want to be there. Therefore, I am hoping that tomorrow won’t have to end up in going to the hospital. That is also the reason why I didn’t go on Monday. There are so many reasons why I didn’t go to the hospital. I hate hospitals for one reason. Even though I have been hospitalized so many times already, you would think that I would be so “used” to the hospital. The fact is that the more that I am hospitalized, the more phobic I am getting. I am petrified of the hospital and therefore it really scares me to go.
A second reason is that I am extremely fragile and have no immune system. The hospital isn’t the best place for me because there are so many chances of getting sicker in a hospital. The hospital is the highest place to catch an infection because of all the illnesses that loom there. Since I can’t fight anything, I really can’t chance catching anything because I will really catch everything there is. Plus, once I catch it… it really is a big deal because due to my situation, everything is magnified. A simple cold is like getting the FLU to me and therefore a simple cold can easily kill me. Not to mention that when I do get sick, there aren’t a lot of medications that I can take to cure the problem due to all the other meds that I take. I take over 50 pills a day and due to all the medications that I take, there are so many interactions that it really limits me as to what I can take. Doctors have such a hard time when I get sick finding anything that they can put me on and they really get scared because everything interacts with everything.
In addition, I can’t be treated like a regular patient. My disease and condition is very complicated and complex and to be honest… not a lot of doctors or nurses have seen patients like me around. That is why when I go to the hospital, it is like I am on “show.” I have like everyone coming into my room when I go to the hospital because I am like a “once in lifetime” case and everyone wants to see it. When I went to California, I went to a top hospital and I literally had all the doctors “running” all over the hospital with their feet not even touching the ground. They even said that they “saw things that they never saw before” and they were at a top hospital in the country and used to seeing rare and abnormal things.
As a result, I can’t be treated like the typical patient. I need around the clock care and I can’t be touched like the typical patient either. I am constantly taking medication and people have to be extremely careful touching me because I am so much in pain. I am extremely hypersensitive that the slightest innocuous touch can send me running for the hills. I can’t even sleep or have a blanket on me and therefore, nurses have to be extremely careful touching me. I can’t even tolerate IVs because the needles being put in me are like having knives in me and the fluid being passed through the IV lines is like glass being put in my veins. That is why when I go to the hospital, they literally can’t start the IV until I am “knocked” out and they have to literally put the IV on as slow as possible… so it is barely working. I also need medication that is unheard about and very few hospitals are capable of doing, as only certain hospitals are capable of giving ketamine and such, which is one of the very few medications that I need and work.
So… with all things considered…. I really hate going to the hospital because with everything happening and how difficult I am to handle, I don’t have the energy to put up with all this. Nurses and doctors think that they are doing the “right” thing because that is how they would treat a “normal” patient, but like I said before… I can’t be treated like a normal patient. I am so weak and sick that I honestly can’t be bothered with constantly putting up with them touching me the wrong way or explaining to them how to deal with me. It is just too exhausting. You know what I mean? It is at the point I just want to be left alone.
Finally, I can’t just go to any hospital either. Due to my complex medical condition, I really need to go to a hospital that is able to handle me. There really are only 6 hospitals in the country that are able to do this because they understand and know about my disease. There are only 6 hospitals that are even able to do the transplant that I need, which is getting a new stomach, small and large intestine, pancreas, and liver. However, those two hospitals that I need to go to are not exactly “local” and since I can’t get to California or Indiana right now… it can really “hurt” me to go to a hospital that doesn’t quite know how to handle my condition or is knowledgeable or treating me. However, when there is an “emergency,” of course all bets are off where you go. When there is an emergency… you go anywhere. But… we are just hoping to be able to hold off on that and be able to hold out until we leave on January 20th to Indiana since that is the best place for me.
I can’t just go to any hospital. That was proven to dad today when we went to the doctor because we found out that I wouldn’t be able to get my needs met at every single hospital. I was already told in the past from certain hospitals that they wouldn’t be able to handle me and if I were to go there, I would have to be transferred. However, when I went to the doctor today, I was told that not all places could give me the ketamine treatment as well that I would need. Ketamine is one of the few drugs that help and is the only drug that would really help me if my disease were really exacerbated. When I went to California and had surgery, I was not able to walk. The doctors immediately put me into a ketamine coma and thankfully, at least I was able to go back to walking… well actually walking on crutches (but that was how I was before because I can’t walk on my own). But without that ketamine, I would not be back to walking with the crutches. That ketamine is like my “miracle” drug… so I need to be in a place that can administer it in case I need it. It is a very dangerous drug and therefore, not all hospitals can give it to me.
Yet, my bloods are continuing to worsen and it is at the point that I can have cardiac arrest and die at any minute. Like I said before, when I went for my bloods on this past Monday, the doctors wanted to put me into the hospital then because my bloods came back so very low. At this current level, my heart can easily have an arrhythmia or even cardiac arrest. Yet, due to the above reasons as well as because of it being the holidays, I didn’t want to go. I know that if I went to the hospital, I probably wouldn’t be coming home so fast because of how “sick” I really am. I really don’t want to live whatever time I have left in the hospital and I didn’t want to spend the holidays in the hospital either. So, I was hoping that I would be able to stay out.
I have the bloods in the morning and hopefully I will be able to continue to stay out of the hospital, but who knows what will happen? I just hope so because I really don’t want to spend New Years in the hospital and I know that if I end up going to the hospital, I probably will end up in the hospital then too. I just know that unless a miracle happens soon, this will be my last New Years to celebrate. I don’t want to spend it in the hospital.
I also went to the doctor this morning. I had the doctor at 6:30 in the morning. Can you believe how early I had an appointment in Manhattan? But… things have gotten so bad that the doctor was meeting me. I can barely swallow. I can’t swallow anything including food, pills, etc. I was only able to swallow egg whites before, but even that is difficult nowadays. I am also passing more mucous than ever. Not only is it worse, but I am also passing more blood as well. It seems that the harder I try to keep hydrated and the harder I try to take my meds to raise my bloods, the worse the mucous and the worse the blood. Therefore, I wouldn’t be surprised if my bloods are continuing to worsen because we know that the mucous and blood is contributing to making my bloods values to fall. I am also getting the worse stomach pains to the point where I am debilitated from them. I literally have to crawl in a ball and there is nothing that can be done to alleviate them. So I was hoping that perhaps my local GI doc in Manhattan could possibly do something to help me in the meantime because Indiana on January 20th is still sometime away.
When I went to the GI doctor, he wanted to hospitalize me. Of course I didn’t want that though. He also wants to put some ports in me so that I will have access to TPN, as well as a port for bloods and medications. This way I won’t have to be “stuck” over and over again and I will also be able to get nutrients and other things that I wasn’t able to get before. He thought that perhaps this could buy me some time. However, it isn’t an “easy” answer because any surgery and especially a port (an artificial device) can really wreak havoc in my body.
Any sought of trauma to my body like surgery can stir up my disease since my disease spreads and worsens through trauma. Any sign of trauma or such will of course also exacerbate it. I am so fragile and weak that we don’t even know if it is “smart” to even do this because we have to be careful what we do to me because I don’t have any reserves on me. I will have a difficult time recovering in whatever we do, especially since I only weigh like 70 lbs., and therefore, we don’t want to waste it on unnecessary operations. We need to save whatever reserves and energy for the bigger and more important operations like the transplant. So… We aren’t sure if the port is the “right” thing to do because like I said before, I have the upcoming transplant, which is very BIG and risky. It is the most dangerous and radical surgery you can have. It runs the highest rejection rate of all transplants. So I am of course going to need all the energy to recover from that. I can’t be further weakened from littler and unnecessary surgeries. You know?
However, the doctor was thinking that if I could possibly get the port, I would be able to get some TPN or some meds to also help raise my bloods and such. Due to my extreme paralyzed GI system and gastroparesis, I can’t absorb anything and therefore, my whole entire body is failing. If I could get the port, the thinking would be that I would be able to be given some TPN and some other meds, which I would be able to absorb since I can’t absorb it in other ways.
I can’t get TPN any other way, so the doctor was thinking that I would be able to also receive that too. He was hoping that it would make me a bit stronger as well because I am definitely going to need to be as strong as can be for the operation. I have had TPN before, but it had to be removed due to all the side effects that had occurred. The TPN in the past was given through a needle and catheter placed in my arm. TPN may include a combination of sugar and carbohydrates (for energy), proteins (for muscle strength), lipids (fat), electrolytes, and trace elements and therefore, the doctor was hoping that it would really benefit me and help my situation. But, even though I only weigh 70 lbs., it wouldn’t really make me “fat” or solve the problem of gaining weight. It wouldn’t really make the transplant disappear. Even though TPN often includes lipids, it will not make you fat. Everyone needs calories, protein, and fat, in addition to other substances, to stay healthy.
However, I had to have the TPN removed in the past because of the complications that arose. TPN is very dangerous and it can’t be used over the long-term. I was getting severe stomach pains, reaction from the exacerbation of my painful neurological condition because it was something “foreign” in my body, and I was showing signs of infection. Every time we tried to restart the TPN, my body would just reject it because not only would it cause me tremendous pain, but the sites also would become tender, warm, red, swollen, etc.
So, the doctor was hoping that the port would be a good thing to have prior to the transplant. A Mediport is an internally installed needle accessed device that is typically used for patients that need long term IV access (like cancer chemotherapy, antibiotics, parenteral nutrition). It is surgically placed, usually by creating a false pocket somewhere in the upper chest wall (under the skin on top of the ribs, though they can literally be placed anywhere [eg abdomen, thigh, etc.]). An internal tube is then attached to a nipple on the device, with the other end of the tube then sewn into a nearby large vein (usually one of the subclavians). It would be awesome that it would really limit the number of times I would have to be pricked. Yet, I would only be able to get SOME of my meds through this and therefore, I would still have the problem of swallowing.
The doctor wanted me to have it done ASAP, but it would entail also being in the hospital for the operation. I would also have to be in the hospital afterwards for a while because we don’t know how I would react to the operation since I am so high-risk. Also, I would need time to get adjusted to the TPN and such because I can’t just be started on it. Since I am so malnourished and fragile, I will most likely have a condition called “refeeding” syndrome that the doctors will have to watch out for. Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. Refeeding syndrome can be fatal if not recognized and treated properly. Therefore, it needs to be carefully monitored.
The doctor really wants me to have it done ASAP because time is of the essence, especially when I am deteriorating so rapidly. Plus, I am leaving for Indiana on January and therefore, I need to have it done and be able to travel by January 20th. The doctor said that I can go and meet with the surgeon to have it “scheduled” or he can just have me admitted to the hospital today and then we can work with the surgeon from here. Of course my dad wanted me admitted immediately because my dad is so very scared of something happening to me. Even the doctor said the future doesn’t look too “good” for me. But… I of course didn’t want to be admitted into the hospital so quickly and I said I would meet with the surgeon on the outside. I also wanted to discuss all this with the transplant team to make sure that this was the wisest decision to make and should be done prior to the transplant. As I said before, I am really weak and didn’t want to waste my energy and reserves on surgery that was not going to “help” or further going to weaken me. So I went home to make plans to contact the surgeon privately after speaking with the transplant team if they did consent to it. However, of course I would go to the hospital immediately and have it done if things warranted it beforehand.
I did speak to the transplant team and I am still waiting to hear a finalized decision before I make a final decision as to what is going to happen. At the initial thought, they weren’t too keen up front about it because they were thinking that maybe a central line would be better. I am supposed to be talking to the head doctor on Friday, so we will see what the end result will be. The doctors also didn’t really want to start anything now before I see them because they didn’t want me further weakened. They rather get me to Indiana and do everything there before I am weakened here and have to then first travel.
In addition, I am also very worried about what is going to happen financially during the transplant. I don’t know how on earth I am going to afford all this. That is part of the reason as well that I don’t want to go to the hospital now too. Every time I do something, I see dollar signs. I know we can’t afford anything and I know that unless I receive support from other people, I won’t be able to receive the lifesaving treatment that I need. I found out that even with the insurance covering the transplant, it is really just a needle in the haystack. Like I said before… even though the insurance company will pay for the multimillion-dollar operation, it really doesn’t solve my major problem. I really need so much help in order for this to happen.
Even though the operation is technically covered, it doesn’t mean that everything that they do is covered as well. Each day in the hospital will cost me $100 at the very least and since I will be in the hospital for about 2 months, it will be like 6000 at the very least just for being in the hospital. I need to have scans every day, as well as tests, and the copayments for each of them is at least $100 per day. I don’t know how on earth I am going to pay for this. That is just one more reason why I am hesitant to be hospitalized now because I know that if I am and they run tests, I am going to have to pay these costly copayments as well. I can’t afford them when I have the transplant, how am I going to afford them now too?
The bills are racking up so much and to be honest… it is really taking a HUGE toll on me. I can’t do it anymore. Mom and dad can’t pay for them anymore and they have fallen on my shoulders. I can’t blame them for not being able to pay for them anymore because they are so astronomical, but it just stinks that everything revolves around the dollar. You know? I can’t receive treatment or testing because of that very factor. I didn’t go to the hospital because I already owe so much money and I didn’t want to owe more money. Each time I go to the hospital, I have to pay a copayment (even though I am covered) and then even though I am “covered” and I am in the ER or even an inpatient… I am still responsible for all the testing that they run. Even though I am admitted or in the ER, I still have copayments for EVERYTHING that they do including all tests, scans, etc. So… not only would I have like the $200 copayment for going to the ER, but I would have to be bothered with the copayments of all the scans that they would then have to run on me when I was there… each scan is like a $100 copayment… and they will obviously add up VERY quickly. Not to mention if I needed any procedures such as endoscopies or anything. The copayments for them are even higher. So.. I really didn’t want to be bombarded with those costs, especially when I probably will only have to have them redone when I go to Indiana when I go in January.
Besides the copayments, I will have to worry about the traveling expenses. Like I said in past blogs, I have to worry about getting to the transplant since I have to take a private plane. Usually they want all their patients living within 4 hours vicinity. However, since I can’t because of dad’s business and how we really can’t afford it because dad has to work and such (you can even be on the list for a long time and we can’t afford to not have an income during that time. As it is we don’t know how we are going to not have dad work after the transplant because I will have to be in Indiana for like 2 or so months), the doctors have said that as long as we can get to the hospital via private plane and have every detail set up when We meet with them… then they will allow it. They just want everything set up because they don’t want us fiddling with things and setting everything up last minute because these are organs that we are playing around with and we can’t afford for them to go wasted. I can’t blame them, but it gives me so little time to figure things out and I don’t even know how I am going to afford all this especially when taking a private plane is going to cost me so much money… $12,000-14,000. But like I said before… I don’t know how we can afford not to do this because we can’t afford to relocate before the transplant.
I also have to worry about the other funds for my treatment including my copayments for the doctors, medications, hospital, etc. Even though they might be covered, I still have copayments. As it is, I already pay over $25,000 per year in copayments and that is with the insurance paying. I also take medications and see doctors that the insurance doesn’t pay for. I don’t know how I am going to be able to afford all this. I also have to worry about the living expenses and traveling expenses post-transplant as well because I will have to live there for a while and my dad won’t be able to work. That means that the business won’t be able to function really because without him being there… there is really no one to work. I don’t know how on earth the business is going to survive and I don’t know how on earth we are going to manage to pay our bills when we can’t even pay them now and he is working. I desperately need help.
With everything happening, I am wondering if the transplant is the best option. I know it is my only option, but I am wondering if it is worth putting my family through all this. After all, I am really asking them to suffer and they have suffered enough. I really don’t want to hurt them anymore than I already have. They have given up so much for me already and I don’t want to hurt them even more. As it is, they don’t do anything. We don’t go out to eat, we haven’t been on a family vacation in like 8 years, we don’t buy anything “nice”, they work 7 days a week (even holidays), etc. They have literally given their lives up for me and I am very thankful and appreciative for it. But I really wonder if it just isn’t enough already. With everything happening, this disease and illness has really taken a huge toll on my family… physically, emotionally, and financially. I really don’t want to see them suffer anymore. If they would lose the house or anything, I would never forgive myself. My parents are at the time in their lives where they should be “enjoying” themselves. Instead, they are working like workaholics and trying to make ends meet. They are no youngsters and I am so worried that something is even going to happen to them. My mom has MS and my dad is a heart attack waiting to happen. Yet… they continue to work around the clock and continue to push themselves so that I can try to get whatever treatment we can afford.
I know that they want me to get well so badly and would want me to get all the treatment that I could get. I know that it kills them that they can’t afford all the necessary treatment that I need to save my life. I know it kills them to watch their daughter deteriorate and die and to know that no matter what they do… nothing that they can do can really save my life. I just wish I could make their lives better because they don’t deserve all this. They really have given up way too much than I could have ever asked. I just don’t know if it is worth going through the transplant and risking them suffering more.
Well… there is so much that has to be done and so much that is happening. I just hope that I live to see the New Year. Who even knows if that will happen at this point. Sometimes I wonder if it is even worth it because of everything that is happening. Sometimes I wonder if it just wouldn’t be better if I just “went” because I am suffering so much. Plus, I wouldn’t be such a burden on everyone’s shoulders. Dad of course doesn’t want me to go and says that I am no way a “burden,” but I know that I am. It doesn’t take an EINSTEIN to see that. I am suffering so very much… and I don’t honestly know how much I can take anymore. The double morphine barely helps. I am trying to hang in there, but it is extremely difficult. I just can’t do it. I just want to be free from all this pain and suffering already. I just lie around and do nothing nowadays. I can barely get off the couch. I went from a world that was full of so much life and promise to a world of nothing. I don’t even want to be bothered with nothing… which is really out of the normal for me. For me not to care about nothing… not even school… you know things aren’t good for me.
The transplant is going to be so difficult on me. The recovery is going to be crazy… especially if I end up getting a pediatric organ. Since I am so small, I have the possibility of getting an adult or pediatric. The problem is that I am on such high doses of opioids and narcotics because of the current pain and neurological condition. The new organs won’t have them in their system and therefore they won’t be able to tolerate them… especially the high doses that I am currently living on at the current moment. Therefore, since I am used to these high doses for the pain… it is going to be impossible to recover because I am going to want these high doses and they won’t be able to give them to me (especially if I get pediatric because they will even have less of a chance of having any signs of opioids in their system) because of this fact that these new organs won’t be able to handle them. So… it is really going to be hard on me because I am going to have to live with the horrendous pain and such because we can’t “overdose” the new organs and such. You know?
But… I guess first thing is first, which is the transplant. Actually… we first have to make it to Indiana on January 20th. Who knows if that is going to happen because lately things have been so horrendous. Everything is touch and go and we never know from one minute to the next where I will be. I honestly should be in the hospital… but I really don’t wanna go. Dad keeps saying, “Let’s go to the hospital” but I really don’t wanna go. I am hoping to stay out as long as possible.
Hope everyone had a good holiday. For Christmas, my parents bought me a keychain. It wasn’t much, but it was really nice. I love it. I may not have gotten my miracle wish for Christmas, but I got this. Perhaps the New Year will bring in my Miracle and 2013 will be filled with only GOOD things.
Well… I guess I will be going. I will keep in touch and let you know what will be happening. Hopefully I will remain at home tomorrow after the bloods. I am also supposed to have a ketamine coma on Saturday. So… hopefully everything will go according to plan.
I really hope that I get to spend the New Year at home. Even though I won’t be doing anything, I really just want to be at home to ring in the New Year. I mean… I just will be watching the ball drop by myself in my bed with my cat, Missy, but at least I will be home. I don’t want to be in the hospital for what can very well be my last New Years if a miracle doesn’t happen.
When the clocks strike twelve on December 31st, people all over the world cheer and wish each other a very Happy New Year. For some, this event is no more than a change of a calendar. For others, the New Year symbolizes the beginning of a better tomorrow. I can’t keep wondering what the next year is going to bring! I can’t believe what my life has turned into… basically went from a life filled with riches and full of promise (was going to be a doctor, have a family, grow up happy, etc.) to being alone, isolated, stripped of everything, poor, and fighting for my life. Everything that I took for granted…eating, walking, and even living.. is now gone. as I am continuing to worsen and deteriorate, I am hoping that 2013 will be a year for the BETTER year and that a MIRACLE will take place because without it… I was told that I won’t be able to survive much longer. During this time when you look back and feel grateful on what you have and think about the upcoming year… please think of me and know that without the help of others… living and enjoying a life in 2013 will not be possible. Any help whatsoever would be much appreciated… a donation (even the slightest amount)… a prayer…. or even to pass this message on. Have a very happy and Healthy New Year.