I just wanted to share a bit what has been happening especially since I am leaving in the morning for Washington D.C. I am not doing so well and rapidly deteriorating. I know this blog might be mumble jumble, but please bear with me because even though I am deteriorating and suffering, I want to make sure that you are aware of what is happening.
The most major news is that I am leaving tomorrow for Washington D.C. It isn’t going to be a long trip, but my father and I have to go because we have to meet with the transplant team at Georgetown hospital. Like I have told you before, I am really sick and I my entire GI system is literally ‘dead.’ Therefore, I need a multivisceral organ transplant, which is extremely rare and risky, and only like 6 hospitals in the country actually perform. I need a new stomach, small and large intestine, pancreas, and liver. The survival rate is not so great, as it is the most dangerous and riskiest transplant you can ever have. But when you are down to weighing in the 60s and basically going to die without it, what other choice do you have than to go and go through with it? After all, I can’t eat, absorb, etc.
Originally we wanted to have the transplant team in California at Stanford Hospital perform the transplant. However, there were a lot of problems arising and as a result, we thought maybe by going to Georgetown, it would solve a lot of the problems.
This transplant is extremely expensive, as it will cost over hundreds of thousands of dollars. Even with the insurance covering whatever they will cover, the cost that we will have to contribute will be so astronomical. Besides the actual cost of the actual transplant operation, we have to worry about relocating to a closer area to Georgetown because I will need to be in the hospital for at least 3 months. This will also mean that my dad will not be able to work as well, which will cause additional problems. The traveling expenses for the transplant will be astronomical because there are so many times I am going to have to travel back and forth to the hospital and like I said before, I have to worry about the relocation cost as well. In addition, I also have not only the cost of the actual operation, but I will have to take anti-rejection meds the rest of my life, which will be extremely expensive. That cost alone will be at least $5000 in itself. So, it is really important that I get as much help and donations as possible because I don’t know how we are going to be able to afford all this otherwise. My life is literally hanging on the clothesline out to dry.
In the meantime, I have to meet with the transplant team. Even though I am ‘listed’ as in need of a transplant, there is so much testing and meetings that you have to do in order to be officially listed and prior to getting the transplant. At any time during this process, the team can deny you and say that they will not be doing it… even if they know deep down that you are really sick and going to die without it. So we are really hoping that all goes well when go to Georgetown because like I said before… they can back out and not do the transplant anytime even though they know that you desperately need it. After all, the transplant is so dangerous and risky and the survival rate is not that good. They say that the key is to be ‘sick enough to warrant the transplant but well enough to be able to come through the operation and recover!’ So it is kinda like a catch-22. So all we can do is cross our fingers and hope. We just know that it has to be done as soon as possible because the longer that we wait, the weaker and worse I am getting.
The trip to Washington DC is definitely going to be interesting. I have been there in the past because of school trips, but this will be the very first time my dad will have ever been in Washington before. Can you imagine being 60 years old and never being in the state where your head of the country resides? Washington is one amazing place and it is really something that a person must experience at least once in their lifetime. I am so lucky and fortunate that my dad will be able to experience his first time with me. Even though we probably won’t get to do a lot because of how sick I am…. I am hoping to at least do some things because Washington is such an amazing experience.
Unfortunately our flight will be arriving into Baltimore, which is one of the three major airports in the area but it is also the furthest of the airports that we need. However, we are traveling Southwest and when we checked, there are no flights leaving the New York area and going into the closer airports. So, we are stuck going to Baltimore airport, which is like 1 hr. away from Washington D.C., which is really annoying because it means that we really need to take a car service to get to Washington, which is extremely expensive. I can’t believe that they want over $100 each way, but we really don’t have a choice.
The hotel that we are staying at happens to be right next to the White House. I am really psyched because the White House is at 1600 Pennsylvania Avenue and we are located at 1400. After speaking to the manager, we are supposed to be having a room that overlooks Pennsylvania Avenue, which will overlook the Capital as well as Washington’s Monument. Of course I am not going to count my chickens before they hatch because when I am in the room to actually see the view… then I will believe it. I am really hoping that I have this view, but I am not going to build up my hopes so that I can be disappointed. I really hope that I have this view though because even if we don’t get to go out to do any sightseeing, at least I will have gotten to see these amazing buildings. Actually, to tell you the truth… I have been to almost all the monuments in DC during past school trips, but I have never ever been to the Washington Monument or the new monument that was just built for World War II. They are two monuments that I would love to see.
However, I am really excited because I am supposed to be going inside the White House. I have a very dear friend from high school that is fortunate to be able to have a job inside the White House and she was very nice enough to offer us a tour of the West Wing, as well as where she works. I haven’t seen her in ages… in fact it has been like over 10 years, and it will be great to see her!! I also can’t wait to go into the White House because that is something that I always wanted to do as well. The West Wing, which is where I will be touring, is also known as the “Executive Office Building.” It houses the offices of the President of the United States, as well as contains the Oval Office, the Cabinet Room, the Situation Room, and the Roosevelt Room. This is going to be one amazing experience that I will cherish and remember forever. I will tell you all about it after we go. We had to be cleared by Secret Service and everything. I am just super excited.
Tuesday will be such a busy day because that is the day that we are supposed to be going to see my friend and the White House in the morning. It is also the day that we have the appointment at the hospital in Georgetown. Since Washington D.C. is so busy and the traffic is so bad, we decided that taking the Metro would probably be the best bet in getting around the city and traveling to the hospital. I really hope that the location of the Metro isn’t too far from the hotel because I don’t know how far I will be able to walk. When we spoke to the hotel, they said that it is fairly close, but “fairly close” to them might not be the same to me. I guess this will definitely be an experience for everything considering it is the first time we are encountering all this.
The trip to Washington is hopefully going to be brief because we are just meeting with the transplant team for another meeting. So hopefully we will be home Wednesday. It stinks that I have to do all this traveling… especially in the condition that I am in because I am really in no traveling condition, but unfortunately this is the protocol. You have to make these ‘meetings’ with the transplant team to ‘talk’ with them. So I guess there just isn’t any choice. I guess they want to do everything face to face because it is so complicated and dangerous. I guess they want to make for 100% certainty that everyone is on the same page. So I guess I can’t really blame them. It just stinks that I have to travel back and forth because I am so very sick and not really in traveling condition and plus it is also expensive to do this as well, which is something that we don’t really have the added funds for. That is another reason why donations are much needed… there are multiple trips to the transplant center that are needed even before the transplant is performed.
My parents are extremely worried that something is going to happen to me during this trip because I am not in the shape to actually travel. I am really deteriorating and weakening. My bloods have gotten a lot worse and so has the obstruction. In addition, they are worried that I might be ‘drowning’ in my fluids because I am aspirating worse than ever and I am having severe swelling in my legs… even when they are elevated. I have such severe edema in my legs and feet that fingerprints can be made. I am so worried that something is really going wrong with my heart because not only am I filling up with fluids in my lungs, but also my bloods are not good either. My bloods are continuing to drop, as they just don’t come back with ‘low’ values anymore but they are stated as ‘critical.’ I am extremely at risk of having an arrhythmia or cardiac arrest because of how my bloods are. In addition, my clotting factor is also elevated, which means that I am also having a difficult time clotting. I am just one complete mess.
As my dad says… I belong in a hospital. I really don’t disagree with him. I really do believe that I do. I know that something bad is happening in my body. I can feel it. I know that my body is dying off. I can feel it. But I am still pushing onward and hoping that these feelings are wrong. I am hoping for a cure and hoping for better days. I am hoping that one day I will get better and hoping that I will get back the life that I was robbed of. I am hoping that I will be able to live the life that I dream of every day… the life where I get to walk, eat, have a husband with kids, be a doctor, be able to swim, be able to lay in the sun, be able to be touched, etc. It just isn’t fair that I am 31 years old and my life has resulted to this. I feel like a prisoner in my own body and that I am living in Hell everyday because I am suffering so very much. There is not a second that goes by that I am not suffering. In fact, they even had to raise my medications and add more because the medications weren’t holding me. Living on over 50 pills just to make it through a day is not a way to live. Someone should not have to live on Morphine, Dilaudid, Ketamine, Nucynta, Vicodin, etc. just to make it through the day. It just isn’t right.
I know that the obstruction is also getting worse. The doctors want me to go for a CT scan, but once I go for that and it is determined that the obstruction is worse, I will have no other choice than to go for the major operation. They are thinking that because of my extreme paralysis of my GI system and overall condition, my colon has twisted because of all the air that is in me. After all, I am completely full of air and I am extremely bloated and distended. In fact, I am so full of air that I am really uncomfortable. I walk around wanting someone to ‘pop’ me. I feel like I am 9 months pregnant and ready to give birth. There used to be a time that I would be able to be able to manipulate the air out of my system by maneuvering it throughout by use of my hands since my GI system really was too paralyzed to do it on its own, but it is now at the point where it is too ‘dead’ for even that to happen. NO matter what manipulating I do or how many gas pills or Rolaids or anything else I do… it just doesn’t get better. I literally walk around looking like I need to be deflated and popped.
I am really hesitant to go for that because of various reasons. First, it is extremely risky and dangerous. The doctors are so scared that I am going to die just if someone breathes on me because I am so weak at this point. They said that even the simplest operation would be extremely life-threatening to me… especially something like this. Second of all, I really don’t want a bag. I know it sounds stupid, but with everything else that I am dealing with, I am tired of being treated like a guinea pig and like I am not human. I am constantly being poked and prodded and I really just want to feel ‘normal.’ I really honestly don’t want the bag. Finally, another reason I don’t want the operation is the same reason why I am not in the hospital when I really should be in the hospital right now. The reason is that since there really is no local hospital that can treat me, I would have to travel to a hospital that is not located around my house. We really don’t have the funds to do this because it would mean traveling expenses, my dad staying in a hotel, etc. It would also mean my dad missing a significant time away from work, which is something we definitely can’t afford right now either. We are having enough of a hard time trying to afford the treatments that I need and pay the current bills. I can’t even get all the treatment that I need and he is working. If he didn’t work, there would be no way I would be able to receive ANY treatment. That is just another reason why donations are so important. My treatment is so expensive and without the help of others, I will not be able to continue the very lifesaving treatment that I need.
One treatment that I actually had to stop was the hyperbaric oxygen treatment because it really got too expensive. My treatment is so expensive and the money that my dad makes and the limited donations that I am receiving can only go so far. Therefore, we had to make drastic cuts and as a result, we unfortunately had to make a cut in the hyperbaric oxygen treatment. It is a shame too because that was one treatment that was working. It was working in various ways because it was not only bringing oxygen to my necrotic tissues and was preventing amputation, but it was also helping my GI issues because when I underwent the treatment, it would help with the distension and belly pains. It probably was doing other things as well, but these were 2 of the issues I definitely noticed that were definitely improved and helped with the hyperbaric oxygen. It is a shame though that the insurance won’t cover it and it is too expensive to continue paying out-of-pocket. I only wish I would be able to receive enough donations so that I would be able to continue going for this treatment because like I said… it was helping and I would do anything for help. But unfortunately going for a treatment here and there for hyperbaric won’t help. It only helps when they are cumulative and therefore, I really have to undergo like 3 treatments at least a week, which is definitely not possible with the funds that I have.
I am very worried about my dad because he is so overworked. There is nothing that he wouldn’t do because he would do anything to try to get me well, but I am so scared that something is going to happen to him. After all, he is no youngster and he is working so many hours and barely getting any sleep. He is up at 3 AM, out of the house by 4 AM and doesn’t come home until 7 PM. By the time he finishes taking care of me, he doesn’t really sleep except for maybe 3-4 hours a day. His work is also all-physical and he doesn’t even get a break, as he works basically 7 days a week. My dad is not only my dad, but also my best friend and hero. If it wasn’t for him, I definitely wouldn’t be here today. If something happened to him, I would never forgive myself. I just wish he didn’t have to work so hard because I don’t know how much more he can honestly take. He looks like he is ready to drop dead and he is so grouchy all the time. I can’t blame him because he is just soooo tired. He would do anything to get me well. The worst part is my dad having to watch me suffer and deteriorate the way that I am and knowing that his hands are basically tied. He is also trying to make do with all the bills and try to get me all the treatments that I need, which isn’t in his powers. It really kills him that I am suffering like this. Everyone knows that if something happened to me, he would never recover!
So that appears all that is happening. I am just trying to hang in there. Like I said before… things are getting worse, but I am trying to hang in there and still hoping that things will turn around. I am getting really worried though because not only are my bloods dropping further and I am aspirating more (so I feel like I am drowning in my fluids), but the swelling in my legs is really scaring me. I never saw my legs and feet so filled with edema. I really don’t know what to make of it. I also can’t go to the bathroom at all, so we know that the obstruction is definitely getting worse.
All I know is that I need help and unfortunately I won’t be able to receive the necessary help that I need without your help. I am really fortunate and grateful to all those that have stepped up to the plate and helped out in whatever ways that they could… even if it was to spread awareness and bring attention to my site. After all, even the littlest donation is money that I don’t have to come up with and extremely helpful and the more people that are knowledgeable about my website and illness, the more chances I have of being helped. I really hope that maybe the media will get whim of this and maybe can help. I really hope that maybe people like Ellen DeGeneres or other Talk Show people might be able to help me because not only would I love to meet them and be able to receive help for myself, but I would love to have other people learn from what I am going through and to show others that even if they are given a hard life, they shouldn’t give up and it isn’t the end of the world. I want to show people that they shouldn’t take anything for granted and how you can overcome anything even this. I really want to bring attention to a disease and illness that no one knows about. I really want to make an everlasting mark in the world and if I can’t really help myself, I at least want to help others so that they don’t have to suffer the same fate as me.
I also want to let you know that there was an article recently written about me online. It can be viewed at the following link. http://sincerelyunmoved.blogspot.com/2013/09/fallon-mirsky-girl-looking-for-miracle.html Please feel free to spread the word of this link because like I said before… the more people that know about it, the better I am.
I had to recently get new glasses because my glasses ended up breaking. It really stinks when I have to get new glasses because they come out to so much money. It isn’t like I get such an expensive frame either. In fact, it isn’t the frame that costs me so much money, but it is actually the lenses because my prescription is so complicated. I have to wear progressive lenses and besides all that, I have to have very intensive prisms put into the lenses as well. It is the prisms that makes them so expensive. I am really fortunate for the new technology though because they are able to make the lenses really slender. Otherwise, the heavy prisms would have forced the lenses to be extremely thick and to really unattractive. In eyeglasses, prisms are used primarily for double vision, positional correction, or convergence correction. Prism lenses are necessary to aid in getting the eyes to work together. One or both eyes tend to pull up, down, to the left, or to the right. The use of prism in the lenses tricks the brain into thinking the eyes are working together by shifting the image only slightly up, down, left, or right. Prisms are different than standard lenses because Standard eyeglasses usually correct two types of eyesight errors, or a combination of both: focal distance (near or farsightedness), or unusual curving of the cornea (astigmatism and cylinder).
At least now I can still look ‘pretty’ even though I have to wear them. It really stinks to have to wear the prisms because it literally makes the lenses cost like $1000. With my illness, my eyes are constantly being affected and eyesight is constantly changing. So it is really hard to constantly get new glasses and be able to see because of the cost of them. But with your ‘sight,’ the world is nothing. I always said that if I had to lose something, ‘seeing’ would be the very last thing I would want to lose. So… that is just one more added expense that I had to worry about.
I am really picky when it comes to glasses to because of what my face looks like. I am extremely thin and have no muscle mass left basically. Therefore, I really don’t like how my face kinda just ‘sags’ and gets lines because there really is no ‘muscle’ or ‘tone’ left in my face. That is why when I take pictures… I try to airbrush them as much as possible because I hate those lines. Anyway, when I get glasses, I literally try on every pair to try to see which pair hides those lines the most. I hate glasses that make my face too small and thin. I think I finally found a pair though that like. I also fell in love with a pair of sunglasses, but since the lenses are so much money like I said before, I can’t afford to get both so of course I didn’t get the sunglasses. I only went with the priority pair, which was the eyeglasses. I can’t wait to get them. I was hoping to have them by the time I left for my trip, but with my prescription, it literally takes weeks for them to be made; it usually takes about 2-3 weeks because they are so complicated. So I guess I will have them when I return.
Well, I guess that is about it. Wanna hear something funny? You know how the new iPhone is coming out Friday? Just when they announced that you could pre-order the iPhone that is being released, which was this past Friday, my cell phone ended up dying. I couldn’t believe it. I actually woke up and the whole entire screen was all messed up with the pixels and everything. It was completely broken and I definitely needed a new phone. What timing this was!! However, it had to happen one week short of the new iPhone being released, right? However, since I obviously couldn’t wait an extra week for the new iPhone to be released, I obviously was stuck getting the older model. All I kept saying was “why couldn’t this happen one week later and I could have taken advantage of my upgrade then?” But after speaking to the APPLE people, they told me that they have a 14 day policy and therefore, I can return it during time. So I am hoping to be able to exchange it for the new one next week when it comes out. I just can’t believe that my phone had to break the day that you were able to pre-order the new one. It should have broke the day the new one was actually released instead.
I am still in the process of reading my current James Patterson book called “Second Honeymoon!” However, I am waiting to get Stephen King’s new book called “Doctor Sleep.” It is supposed to be the sequel to “The Shining” and I just loved that book and movie. There are a lot of good books coming out this month. I guess this is the month for good books and returning TV shows. But as for DVDs being released… that is another story. I haven’t really found any good movies really being released this month. It is probably because of all the holidays that have been occurring because I discovered that when there is a holiday during a particular week, they really don’t release good movies during that week.
On a better note, my brother has been trying to get the grass in the backyard to grow. He put down sod and grass and has been watering it like crazy. He is insisting that ever since he starting watering the sod like crazy, the grass is really taking. I told him that the reason you can’t lift the grass and the sod up anymore is not because it is ‘taking’ and has roots, but because it is so waterlogged that it is too heavy to lift.
Dad is still busy trying to learn his new iPhone. He is really coming a long way though from knowing nothing of it. I am really proud of him for joining the world of technology, as he finally switched from the flip phone to the iPhone. It is so funny watching him on the phone because he gets so excited when he does something and then he gets so frustrated when he can’t do something.
Well… going to get going. I will write to you again when more info is known about anything. Thanks again for all your help, encouragement, and support. Remember… When life gets you down do you wanna know what you gotta do? You gotta keep swimming, swimming and swimming!! Don’t stop and drown!!”