Just wanted to write a little update because more news has just been known and I want to update you on all that has happened in the past few days, as a lot has been unraveling. Also, I have to make a MAJOR decision by morning, so I am hoping that perhaps writing this update might clarify what exactly is happening and help me in making my decision because I am so confused as to what I should be doing. I think I know what to do deep down, but I am just so indecisive. I am sooo afraid that I am making the wrong decision.
As you already know, I was supposed to be leaving this upcoming weekend for Nebraska. I was headed to Omaha, Nebraska because I had to go to the hospital since I am suffering from a life threatening disease that desperately needed help. I need a life saving and rare and life-threatening multi-organ visceral transplant, which would entail receiving a small intestine, large intestine, stomach, and pancreas. However, this transplant is extremely is rare and can only be found in 8 hospitals throughout the country. This transplant is extremely dangerous, as it runs the highest rejection rate of all transplants. I was originally going to California for my illness, as I suffer from severe gastroparesis, autonomic dysfunction, and other matters, but the insurance company refuses to pay for this transplant there. Since we are talking about an operation that will easily cost me easily over a million dollars, there is no way I can afford to pay for this operation out-of-pocket. Even with the insurance paying for it, I will still have to find ways of coming up with money for the operation that I don’t know how it will be possible because I still have to worry about living expenses (I will have to live there for awhile afterwards), traveling expenses, deductibles, copayments, medication coverage (especially for the anti-rejection meds that I will have to receive afterwards for the rest of my life because without them I will reject the transplant and the insurance will not cover. They will easily cost me alone $1000 per month… not including the other expenses that I pay on other medications), etc. So as I will have difficulty paying for this operation as it is with the insurance paying for the operation, there is no way I can even think about going to a hospital that the insurance won’t pay for at least the operation.
I hate health insurances because they also have these weird rules. Even though certain hospitals are BETTER hospitals to go to, they will only cover you at certain hospitals. Therefore, even though I really need to go to California to have the transplant because my entire team is there and I am best to go there because they are able to handle me since I am so complicated and such, they will not pay for me to go there. I really need to go to California because they are able to handle all my underlying conditions and not many other places are situated to do so. Therefore, the only places that the insurance company will pay for me to have the transplant is in Nebraska. So, I had no other choice but to go to Nebraska.
I was supposed to leave this coming Sunday for the big trip to Nebraska, as I am rapidly deteriorating. I was also scheduled for surgery on Tuesday because they wanted to do an “exploratory” surgery to see exactly what was going on. Besides wanting to see what was happening with me, they also wanted to figure out where I was bleeding from, as I have blood in my stool. I have been having it for a while, but the doctors are unable to tell where it is coming from. Despite having a great amount of tests, they cannot find out what exactly is taking place because due to my complex medical history.
The doctors haven’t been able to tell exactly what has been going on with me with the bleeding because every time they try to find out where the bleeding is coming from, they hit a brick wall. They really wanted to do a colonoscopy on me, but they can’t “empty” me because of my gastroparesis. My GI tract is too paralyzed and too dead and therefore, no matter what prep that they have given me, it never has worked. I have been given everything from the traditional prep that is given to everyone (drinking the nasty mixture), to taking those pills to make you go to the bathroom, to having enemas, to drinking whole bunch of laxatives (including MIralax), to even having a Nasogastric tube placed in me to pour the laxatives in me so that I don’t have to bother swallowing the laxatives and they go directly into my stomach and intestines. However, nothing has worked… not even the NG or NJ tube. In fact, when I did have the tubes, they were only able to pour in less that a quarter of a liter because the tube was backing up and the mixture was coming back out of the tube. My GI tract is so “gone” that it just couldn’t hold it and therefore, they had to call a “quits” and remove the tube. So… they haven’t been able to really determine where the bleeding has come from. Even swallowing a camera isn’t a possibility because it won’t pass through due to my paralyzed stomach.
Nothing passes through at all even though it has been determined that the sphincter is completely wide open. I just don’t have the nerve conductions to push things along. Essentially… my whole entire GI system is “dead” and nothing passes through.
Now that it is getting closer to meeting with the team and such, the entire team has been reviewing my records and having meetings about me. Things have been progressively getting worse with me and they have determined that our original plans of what was going to take place are not going to be possible. They insist that I am so “sick” and “fragile” that the amount of time that I was originally going to be down there is not going to be enough. Originally, I was supposed to be leaving Sunday for Nebraska and coming back Thanksgiving morning. Not only did I really want to spend Thanksgiving with my family because Thanksgiving is meant to be spent with the “family,” but it is also a day that is a “dead” day at the hospital. Nothing is really going to take place in the hospital that day because no one is really going to be working. Since we can barely afford to go to Nebraska as it is, we can’t afford to spend days in Nebraska that we are just “sitting” around and doing nothing. As it is, we can only spend about a week or so right now down there because of how much money everything costs. Unfortunately money is extremely tight and despite all the fundraising and pleading for donations and support, I haven’t been able to really raise that much. This disease is such a financial burden that it is unbelievable. Despite all the “cuts” that my family has made, we are really having trouble paying for treatment and unless we receive aid, I fear that I won’t be able to receive the treatment that I need. As it is, I can’t really stay longer in Nebraska because of the trouble of affording it. I had this problem in California when I was there last time and that is why I had to come home.
Through my records, the doctors have seen how sick and “fragile” I really am. They are really scared for my life. They said that they never have seen someone as sick as me. They are afraid to do anything because they fear that they are going to make me worse. Therefore, they really want to know me from head to toe and do all this thorough testing on me before they do anything so that they can get a clear picture of me and not further jeopardize me. After all, my weight and levels are so very low that the slightest wrong move can really kill me.
I am so sick that the doctors really want to do all this thorough testing on me and really get to know me before they do anything… even that exploratory surgery. Therefore, whereas before everything was going to be outpatient, they wanna even put me inpatient during this period and do much more testing than was originally planned. They now expect me to be down there for at least 10 days so that they can do all this testing so that they can get a full picture of me. So, now that things have changed and they want me to spend all that time there, I have to make some big decisions.
Everything is now changing since the doctors have decided that I have to stay such a longer time than originally planned. I can either go down next week for the very few days that I was originally planning to go there for, but I would only have to return again afterwards in the next week or so to undergo the testing. I would only be going there for 2-3 days, which would just be enough to see the team and for them to actually get to “visually see” me and to enact a plan of what testing needs to be done. They wouldn’t really be able to do any of the testing or get a complete picture of me, as it would take a whole array of testing, which would take about 10 days or so. They would want to do many things to see exactly what is going on. However, at least if I do go down next week for the few days, at least when I return again, they will know exactly what testing and such needs to be done. They will have a complete idea and know exactly what needs to be done. At least the show would be starting to get on the road.
I know that I am rapidly deteriorating and I desperately need to get help immediately. I know that time is of the essence and I can literally die any day. That is why I wanna get this show “on the road” and that is why I really was thinking about going next week for the 3 days or so. This way they would know exactly what they will be doing when I return instead of first seeing them then too; we can just jump right in instead of waiting and wasting another day. In addition, the doctors will only meet me on a Tuesday and since I can only really spend a week there because of the financial issue, it makes it hard if I first meet with them then and then start having the testing because it doesn’t give us much time since on the weekend they really don’t do much. It is one thing if they meet me first thing on a Monday morning because this way it would give them the entire week, but unfortunately, they won’t see me til Tuesday. The doctors won’t start any testing whatsoever until they see and meet with me. That is another reason why I was thinking about going this upcoming week so that I can return again and have a full week of testing and such from Monday to the end… this way maximizing the amount of days instead of losing days because of the weekend and such.
However, the doctors are also scared about me traveling back and forth. Due to my failing health, they don’t think that I would be able to tolerate the traveling back and forth. Therefore, they would rather prefer me to do everything all at the same time when I am down there instead of going back and forth to New York. I agree that it would be much easier because the traveling does take a lot out of me and really further deteriorates me, but I don’t know what to do because I don’t know if I can afford to wait til after Thanksgiving to see them and get all this done.
The doctors really did want me to come this upcoming week and stay for about 10 days or so. They still wanted me to continue with my upcoming plans but instead of leaving like I originally had planned on Thursday morning, they would rather me stay. This way I would see them next week because like I said before…. Time is extremely crucial…. But at least I also won’t have to travel back and forth because everything will be able to be done at that time. But like I said before, due to financial reasons, we really can’t spend that much time down there because we can’t afford it. We can only really stay a week, so we really have to maximize our time.
So… it really isn’t a good idea to go next week because despite losing the days because of the weekend if we decide to go this upcoming week, we will also lose another additional day because of the Thanksgiving holiday. As money is extremely difficult to come by, we can’t afford to spend on a day where we will just be “sitting” around. Therefore, we really need to go when we are paying for days where there is something being done every single day because there is no holiday. It is bad enough that the weekend will interfere with my week of staying there; I can’t afford to pay for another day of doing nothing such as on Thanksgiving.
But like I said before, I don’t know what to do because I can either go next week for the few days so that the docs can see me and get the whole “plan” into effect and such so that when I return again we know exactly what to do, or I can just wait and go after thanksgiving and get it all done at the same time. I Just don’t know what to do because I know how crucial time is. I ask my dad, but my dad won’t really give me an answer. He is so afraid to give an answer because he is so afraid that answer is going to be the one that is the wrong one and that is going to kill me. If it was up to my dad, I would be living in the hospital because in my dad’s eyes, nothing can happen to me in the hospital or under the eye of the doctor. My dad doesn’t want anything happening to me. All I hear from my dad all the time is “you know that you should be in the hospital.”
I just wish I knew what to do. I know how important it is to go to Nebraska, but I know how much I need to maximize my days so that I get the most out of them because of the money issue. It is a shame how much money dictates my life and future. I have asked the doctors in Nebraska what I am better off doing, but of course they won’t tell me what to do because in their eyes, the best thing to do is to go next week like we have originally planned to do, but to extend our stay for at least 10 days, which is something that we cannot afford to do.
In addition, I don’t know what to do because I was really counting on going this upcoming week and knowing what their plan of action was. I am scheduled to go back to California on December 9th and I can’t be in both places at the same time. In addition, it is too expensive to really go to both places and I can’t afford it and therefore, I was planning on deciding which I would go to after hearing what Nebraska had planned for me next week because I knew that no matter what was discussed next week (even if I had the surgery then too), I would still have to go back to Nebraska. But, if we don’t go to Nebraska until after Thanksgiving, there is no way that I am going to be able to attend California. I will have to give up on going back there in order to go to Nebraska. So, that is really a downfall of this.
I guess the best thing for me is to put the trip off to Nebraska. I know how much I really need to go to Nebraska, but since I can’t stay so long because of the finances, I guess it is better off that I go when I can spend the week there and get the full benefits of the week instead of losing days because of the holiday. You know? This way the team will get a complete picture of me. The team knows I am not a “typical” patient and therefore, they want everyone to know me… even the hospital staff so that when I have the surgery and the transplant and when I am hospitalized… they will all know how to care and handle me. After all, the slightest wrong move can really complicate and worsen me drastically.
I know that putting off Nebraska til after Thanksgiving means waiting another 2 weeks or so, I guess it is better off because I can’t really travel back and forth because it does take a lot on my body. It is also the “holiday” time and bad things shouldn’t happen during this time because it is a time for “happy” times. So… since only good things should be happening during the holiday season with people getting presents and such, I should be ok and make it because they aren’t going to make the holiday season worse for me and my family because we have suffered enough. Maybe by waiting it will also be a good idea too because since it is going to be holiday time, maybe that will be just the perfect gift that I will be able to be given. You know?
In addition, I really want to be home next week for Thanksgiving too because I want to be able to celebrate the holiday with my mom and brother since chances are that I won’t be around next Thanksgiving. I was told that unless a MIRACLE takes place, I definitely won’t be around next thanksgiving and therefore I really want to spend my last thanksgiving with my mom and brother because thanksgiving is FAMILY time. When we go to Nebraska, they are unable to go with us and I don’t want to be split up especially during this special time. I just hope I am making the ‘right’ decision by not going to Nebraska next week, but some things are just more important and precious. Some things are just not replaceable and therefore, I don’t want to go there and never have that opportunity to have the holiday with my family. After all, Thanksgiving is a day for giving “thanks” and I want my family to know how thankful I am for them and for all that they have done for me throughout the years. I definitely wouldn’t have made it this long if it wasn’t for them. They really have been my backbone of support throughout this entire thing. They really have given up so much of their lives and such… more than any person should ever have to. I hope I am not being “stupid” and just home I am making the ‘right’ decision by waiting to go to Nebraska til afterwards. But like I said before… It’s holiday time… so only good things should happen, so I should be ok, right?
So, it looks like when I go to Nebraska I will be inpatient for the entire time and going through extremely thorough testing. I never went to a hospital that was so thorough. Gosh… I thought that New York had all the top hospitals. I never thought that I would find better hospitals then the ones that we had here. But, I guess I was wrong. I can’t believe how this hospital is taking such good care of me and how they want to make sure every “I” is dotted and every “t” is crossed before anything is done. There is no “oversight” like there is in New York. In addition, they take care of you so much better than the doctors in New York in that whenever you need something, they are always there. You can always be assured a phone call back, which doesn’t happen here. In fact, they are even reachable and they even contact you on Saturdays and even Sundays. When has that happened here?
I was also surprised to hear from them that they told me that I “Shouldn’t give up” because I am going to see them shortly and they are going to help me. They are the only doctors I have met who tried to restore my hope and confidence that perhaps they might be able to help me. They said that I am 30 years old and I shouldn’t be like this. They told me that they are going to do whatever they can to help me!
Knowing that I am going to be inpatient, we are going to be staying in suites at the hospital. It will be easier on my dad to stay at the hospital too because this way he doesn’t have to worry about traveling back and forth to the hotel even though they do have transportation. The hospital transplant program has a special service set up where they have a special section of the hospital set up like a “hotel” for families. This way families of transplant patients can stay in a hotel that is right at the hotel and not have to worry about traveling back and forth. The only bad part is that he will have to eat hospital food in the cafeteria. But, I will also feel better too because at least I know that my dad isn’t too far away. Even though he won’t per se be sleeping in my room or on my floor, at least I know he is really close in case something should happen or I need him. Even though I know that even if he was in a hotel that he would be at the hotel in a matter of minutes of he was needed, I still feel better knowing that he is in the hospital staying. U know?
I can’t believe how much the doctors are freaking out and so afraid of me. I never met doctors who were so concerned. So, it is kinda really a big relief knowing that I am going to a place that has such caring doctors. Who would think that it would happen in Omaha, Nebraska?
So…. It looks like we are off to Nebraska in a week or so. When I get the exact dates tomorrow, I will let you know. But I do believe that we are going to be leaving December 2nd or December 9th. Since we can only stay a week and we really want to maximize the amount of time spent there, the doctors are going to see what they can do about seeing us on a Monday instead of the usual Tuesday because this way it will give us an extra day to play around with because we don’t really want to lose a day because they won’t do anything until they see me and the “team” doesn’t really see patients except on Tuesdays. We really want to have the most weekdays available because we know how much less is done on the weekends and like I said before, we really can’t stay more than a week because of the money issue. So… we will see what happens.
Now that Nebraska is delayed, perhaps I will be able to raise some more donations and support. Maybe I will also have better luck too because it is the holiday season and it should be a time of “giving”, right? After all… isn’t it better to GIVE than to RECEIVE? I find it such a shame that my life depends so much on money and it is basically beyond my control. My life basically rests in the hands of the world because unless we get “help,” we can no longer afford treatment for me. Not only can we not afford to go to Nebraska, but even the current treatment that I am receiving in New York is very hard to come by and we are having to make major cuts. I don’t know what we are going to do. My parents feel extremely bad about not getting me the treatment that I desperately need, but I know that they have done all that they possibly could. Money only goes so far and their hands are tied.
I know that money is extremely tight, but I can’t help but think that if everyone would just donate $1… how much that would quickly add up and how helpful that would be. But… unfortunately I know that will never happen. I only wish that I could get on TV or something so that I can ask for support because all the stuff I have done in the past such as writing to people for help, posting flyers, pleading for help on Facebook, websites, etc. have no really helped that much. If anything, it worked initially… but it quickly died out. I don’t know how other people do it, but I constantly see and hear about others on TV. Yet, whenever I try to get my story across on the news or on other shows like talks shows and such, I just don’t get anywhere. If nothing else… even if I can’t receive the necessary funds to get well… at least I want my story heard and brought attention to because I want people to realize what they have. People shouldn’t take what they have for granted because in a heartbeat it can be taken away. Who would think that I would have ended up like this? I had everything going for me. I was a competitive figure skater, an “A” student, etc. I thought I was going to go on to college, have a career in medicine, have a family, etc. I never thought I was going to be 30 years old, living with my family, and praying each day that I live to see another day. I never thought that I would never be able to walk or eat… the simplest things we take for granted. But if nothing else, I want to show people that no matter what they are dealt with that they can’t never give up. I have been striving to survive for the longest time even though I have been suffering so much. I haven’t thrown in the towel as of yet even though it has been so very hard. But… I must say… I am getting really bad and I honestly don’t know how much I can take. I don’t know how much more suffering I can take because I never get a break.
I did ask my mom what we would do about Thanksgiving because originally we were going to have someone prepare Thanksgiving for us and deliver it to us Wednesday. They would prepare everything so that all we would have to do is heat it up on Thursday because I wasn’t going to be home to cook the meal. Each year, I used to cook Thanksgiving dinner, but since we were first coming home from Nebraska, I wasn’t going to have time to cook. So, we were going to have the meal brought in so at least we would still be able to have thanksgiving dinner. We decided to still probably do this because I have gotten to the point where I am too weak to really make such a massive meal anymore. Even though we really don’t have “company” come over as it is only my mom, my dad, my brother, and my uncle… it still takes a lot to cook Thanksgiving dinner and this way we don’t have to bother with the cleaning up either. It will make it so much easier on us. Even though I would have loved to make the meal, I do think it probably is a better idea to bring it in because I have been really weak lately and it would save the trouble of all the preparing, cooking, and cleaning. Plus… I am sure that the place that is making the turkey and all the trimmings would make it so much better than me. Although my family insists that I am a “great” cook, I am sure that there is no match to the place we are getting this dinner from.
Speaking of Thanksgiving, I was also thinking that in a way it was kinda a good thing that we are planning on postponing Nebraska. First of all, we were going during that Thanksgiving week, which is the busiest time of the year. It is really hard for me to travel as it is and with the airport being as busy as it is… I am sure security is going to be really high. I am sure that it really would have exhausted me more than usual if we would have gone this upcoming wee. We would have also had to deal with all the crowds of people because lots of people more than usual would be traveling. Since I have an autoimmune disease and no ability to fight illnesses whatsoever, I can’t really chance getting sick because if I get sick, everything is magnified to me. A simple cold is like the “flu” to me and therefore, getting sick can really kill me or at least easily land me in the hospital. With there being so many people, I was really asking for getting sick. Plus, with all the crowds, I really risk the chance of being knocked into. I am sure it wouldn’t’ be intentional, but accidents do happen and when there are lots of people, people always end up bumping into each other. I can’t afford for that to happen because first of all, it would cause enormous pain for me. I am extremely hypersensitive and the slightest touch causes intense pain. Plus, my disease also spreads through “trauma” and even the most innocuous trauma not only causes the most extreme pain you can imagine (I can feel things that the typical person can’t), but it can cause my disease to really spread… especially since it is already spreading like a wildflower.
In addition, I also heard that we are in for another storm. I know it isn’t definite, but knowing our luck that we have been having… you never know. Therefore, even though we were originally planning on coming back on Thanksgiving, who knows what would have happened if we had that upcoming storm that possibly might hit us? If nothing else, I am sure that there probably would be delays, which is something I can definitely do without.
One good part about putting off Nebraska is that at least I will have some good movies to watch for the plane and while I am there. It just so happened that all the good movies were coming out right after we left. I can’t wait to see MEN IN BLACK III and THE DARK KNIGHT RISES. I love the BATMAN movies and have been waiting so long to see THE DARK KNIGHT RISES since I couldn’t see it when it was in the theater.
Now that the holidays are here, it is the best time to read “holiday” books. I can’t read books that deal with the Christmas or the holiday season during any other time than this time of year. It just loses something when you read it at different time of year. I even refuse to read a book that deals with the holiday season once Christmas passes. So, I have this time up until Christmas to enjoy these books. James Patterson just came out with a new book called MERRY CHRISTMAS ALEX CROSS, so I am just starting to read this book. I hope it is a good book because I used to love James Patterson, as he is one amazing author. Yet, he is an author that I think wrote the most books of any author and therefore, some of his books lately have gotten really bad and it was getting to seem like he was all “written out.” But perhaps this books is one of his good ones because all his ALEX CROSS books were amazing.
Well, I am going to get going. When I have more info, I will let you know. As the holiday season is approaching, I really hope I might get my wish of getting better, living to see the new year, and at least some funds so that I can receive that necessary treatment that can help me survive longer so that I can see another year. If you can spread the word of my site and how much donations are needed for desperate life-saving treatment, I would really appreciate it. I know that you have already done a lot, but anything that you can do is much appreciated. Please say a prayer that everything will be ok and I will make it to Nebraska! Just like every $1 helps, so does every prayer!!
Happy Thanksgiving if I don’t write again before!