Well… haven’t updated for a while and with all that is occurring now, I figured that it would be a good time to write something. So much has been happening and definitely after the day that I had today… I definitely had to write because I have to let you know the latest. I also had so much happen to me that my head is spinning. So… perhaps by the time I finish writing this blog, perhaps it might have helped me sought out my thoughts.
I had such a bad day today. I am so confused what to do because I feel like someone is telling me that no matter what I do… going to the hospital is inevitable. For a while… things have been getting bad over all. My bloods have been dropping, I haven’t been feeling well, my heart has been giving me problems, I have been aspirating like crazy, they think I am filling up with “fluids” and such, etc. However, no matter what the deal has been…. I never really wanted to go to the hospital because you know me… I hate hospitals. I have really become “phobic” of hospitals. You wouldn’t think that because I have been so sick and been to the hospital so many times… but the truth is that I can’t stand hospitals anymore. I literally freak out. So… I really have been trying to postpone going to the hospital even though I know that the best place for me would probably be in the hospital.
However, something is telling me that going to the hospital is inevitable. No matter what I do… it seems like I can never catch a break and that I am getting pushed more and more towards the hospital. I also didn’t want to go to the hospital because I am supposed to be leaving this weekend for California. I know that if I go to the hospital, it could really jeopardize my trip to California. I also know that the best place for me is in California and therefore, it is imperative that I get there so that I can be with the “team.” So… I really don’t know what to do.
I have been getting worse and worse. I knew something was “up” though despite all the other things that I have been going through… the aspirations, the filling up with fluid, bad bloods, etc. I have really been feeling so horrible lately. I really haven’t been feeling like myself. I have been passing out like crazy, but they think it is because of my GI system. I cannot convert amino acids and fatty acids to energy anymore and therefore, I cannot get energy and oxygen to my cells and organs. Therefore, any exertion that I do… quickly depletes me of energy and oxygen and I don’t have any energy or oxygen in reserve to replace it. As a result, I become fatigue and black out. I get so wiped out so easily especially as the day progresses. I have also been getting really bad back spasms where my kidneys are located. I definitely knew that something was up with my kidneys, especially since I knew that they have been failing me in the past.
Luckily, I had an appointment with the kidney doctor today. I kinda had a feeling that something was “up” with my kidneys because of the way I was feeling, but I honestly wasn’t expecting to hear the news that I was given today. The news is not good at all. I really REALLY REALLY need to get to California quickly because I am literally running out of time. My GI system is really causing havoc in my body and causing my organs to go into total organ failure. It is also causing a lot of pressure to be put on my spine, which is especially dangerous since I have such weak bones. The doctors are always worried that I am going to get a life-threatening fracture because my bones are so very bad since the brain tumor literally makes my bones deteriorate among other things. I literally have paper-thin bones and can “break” at any moment. Therefore, they are really scared because if I break my spine… it could really be a HUGE problem for me.
When I went to the kidney doctor, he ran some tests. With all the tests he was running and the way he was acting, I kinda had a feeling that something was wrong. Yet… everything was kept “hush hush” until I was done. I kept asking everyone “What was going on? Did he find something?” But of course no one told me anything. I guess it was for the doctor to tell me and no one else, especially since the news wasn’t good. You know?
It turns out that after all the x-rays and examinations were done, it showed that I am really filled up with air and gas. I have been suffering with it in the past and I knew it was bad because I was over 75% full of air, but apparently now it is so much worse that it is life threatening. It is so bad that now the doctor wanted to send me directly to the hospital. It has gotten that bad. The x-rays have shown that I have become even more distended; I have filled up with more gas and air, etc. This is not good because it is putting a lot of pressure on my organs. It is really shutting them down. It is also putting pressure on my spine, which is causing further problems. It is really bad because since I am so small, it makes it even worse.
The pressure that the air and gas is putting on me is no good whatsoever. It is shutting my organs down and it is causing my colon to twist. Once that twists, I will be in really HUGE trouble, as I can easily die. However, like I said before… I am supposed to be leaving this coming weekend for California. The doctor wanted me to go today to the hospital to have a surgery to relieve the pressure even though it would only come back because of my wonderful GI system. I didn’t know what to do because if I went to the hospital today for surgery, we didn’t know if I would be able to go to California, as I leave early Sunday morning and it is the BEST place for me. In addition, when we go to California, the doctors (especially the transplant team) want to see exactly what is going on so that they can “help” me. If I go and have the surgery here to do anything, they will not get an accurate picture of what is going on and would not be able to treat me like they might otherwise. You know?
The doctor certainly understood where I was coming from. He knew how important going to California was, but on the next hand, he knew how important it was to get this taken care of because it was really jeopardizing my health further. He told me “we never know if you are going to make it through the day as it is. We never know if you are going to make it through the night. Between the filling up with fluids and now this, it really complicates things plenty. You can very well die very easily.” In addition, he was also going to be in the hospital tomorrow, so he also gave me that as an option as well. He told me that I could always go into the hospital tomorrow morning (if I could hold out) because at least he would be there and he would be able to “take charge.”
Therefore, he gave me his pager number and let me go home to think about it and have him think about it as well. Of course if it gets worse… I will have no choice but to go to the hospital. I will have him paged and he will notify them of me coming. We were also thinking that if anything… we would have it tomorrow morning (if I can last) because my doctor would be in the hospital and therefore, he could take charge and be on top of things. But everything is chaotic because I am really filling up with air and my GI system is completely DONE. So much pressure is being put on my organs that it is shutting them down and causing organ failure. It is causing the colon to also twist and once it completely twists… we will have HUGE problems on our hands as I can easily die quickly from it. I also have a lot of pressure being put on my spine from it.
I didn’t know what to do. It just stinks because this surgery isn’t even a “permanent” fix. It will only be temporary, as it will always come back until they take care of my GI system. During the operation, they have to operate and puts tubes in me to relieve some of the pressure in me. Otherwise the pressure on the organs and spine are going to cause more problems. I am going into total organ failure because of it and causing the colon to twist… which when it twists is not good and will result in death. However, due to my “dead” GI system, the pressure and “air” will only come back even after they alleviate it. So… it really is important to get my GI system fixed and helped as soon as possible because my organs are really suffering and I am literally running out of time quickly. The worst part is that I am so tiny and there is not a lot of space in me as it is… so it makes it even worse.
The doctor really is freaking out and doesn’t really know what to do with me. I am like “damn if I do and damn if I don’t.” In the meantime though, there have been flyers being put up in places to ask for help and bring awareness to my situation. The flyers are asking for donations because like I have previously said, without the help of others… there is no way that I am going to continue treatment, especially continue to receive treatment in California, which is the best place for me. This disease is a real financial burden and my family and me can no longer afford the treatments, medication, appointments, traveling expenses, etc.
Therefore, my life literally is in the hands of everyone else because I fear that without the help of others, I will not be able to receive any more treatment. We have made tons of “cuts,” but even with all of those, it really isn’t possible to afford this illness anymore without the help of others, especially when so many parts of this illness are not covered by insurance. The insurance doesn’t cover all the procedures, medicines, appts, etc. that I have and take. In addition, the ones that they do cover still have copayments, and they quickly add up as well. Just in co-payments alone, we spend over $25,000 a year at least. The doctor knows how important it is that we get the help because I will die otherwise and therefore, he took all my flyers that I had and is posting them all over the hospital. I couldn’t believe that he was going to do that. What a wonderful doctor to go out of his way and take all my flyers and to go post them all over the hospitals. I am so thankful to him.
So… everything is up in the air. We know what is the best thing for me, which is to go to the hospital and have the procedure done as soon as possible because my body is literally suffering and dying, but we also know how important it is that I get to California. If only I was in California right now and could have it done there. That would be the best. But, California is not until another 3 days. Gosh… it is so close and yet so far away at the same time. I really hope that I am going to make it. The doctor is just so afraid because this isn’t good and then with everything else occurring… the filling up with fluids, the bad bloods, etc. The prognosis isn’t good.
I have been really thirsty as well lately. So, of course I have been trying to drink as much as possible. I just can’t quench my thirst. This isn’t good though because I am literally aspirating and “filling” up with fluids. My GI tract is so “dead” that it is literally spilling over into my lungs. As a result, the more that I drink because I am so very thirsty, the more that I aspirate and spills over into my lungs. I am literally drowning in my fluids. It is horrible. When I saw the kidney doctor, he confirmed that the reason that I am so thirsty and can’t quench my thirst is because of my GI system. It is not absorbing anything. My GI system is just completely gone. So… that is just one more reason why I should go to the hospital immediately because I am so dehydrated and I am so thirsty, which is resulting in me drowning in my fluids. This way if I go to the hospital, perhaps they can do something to hydrate me better and stop me from “filling” up at the same time. But, it would only be able to be done by IV and I can’t tolerate IVs too because of my illness. I am so hypersensitive to everything and therefore, a simple IV is like sticking a knife through me. I can even feel the fluids going through me, and it sends me through the roof. Whenever I go for an operation or something, they have to wait for the last minute to put the IV in, and then give me lidocaine to numb the entire line. Then, even when they start the line and the liquid goes into my vein, they have to put it so that it goes as slow as possible because it just kills me. So… it isn’t a very easy answer to this problem either.
It has also been confirmed today that the nerves that conduct my GI system are completely “gone” as well. Therefore, I can’t really go to the bathroom and I don’t have feeling when I have to go or not. It is just horrible because it is just problem after problem. It never ends. I am so very scared.
So… like I said… everything is “touch and go” right now. It just freaks me out that I can basically “die” any minute with everything going on. However, since the best place for me is California and since they really should see the COMPLETE picture so that they can best treat me, I am hoping to make it there. I am hoping to hang in there as long as possible, but of course I have the doctor’s pager number right at hand in case I have to go to the hospital immediately. But… I have made it this far and California is only 3 days away. I can make it. I know I can!!
We are supposed to leave Sunday morning to go to California. However, with all this now occurring to me, it really complicates the flight to California as well because I am definitely not stable. Traveling is normally not “easy” on me as it is. My body usually “acts” up and I usually have a great deal of problems when I travel. Now… with all this going on… we are really expecting the worst. There are so many times in general that we almost end up in the hospital because of the traveling, so I can only imagine what this is going to bring. I am really hoping that it isn’t going to be that bad. The doctors are just really bad that I won’t be able to tolerate the flight especially because it is so long and I won’t be able to really “move” and such. So… we are going to really load me up on meds and really “knock” me out. Hopefully that will get me to California.
Gosh… with going to California in 3 days, there is just so much to do. However, with me not able to get energy and oxygen to my organs and cells, I really have to be really careful. I can’t really exert myself. I already got strict instructions from the doctor that I can’t do anything that “over” does it. I am literally not even allowed to lift a finger because anything really completely depletes me and once that happens, I am officially a goner. I keep passing out (blacking out) because of that. It is really freaky and scaring me.
Not only do I have that problem, but my head has also been giving me a lot of problems. The brain tumor is really causing havoc on me as well. I am having a hard time with my vision, getting severe headaches, having extreme fatigue, etc. So… things just continue to get worse and worse.
It is really imperative that something be done and done fast. I know that I am not doing well and that my body is “dying.” I hate to say it like that, but it is the truth. It is something that only people who are “dying” really can understand. I keep having these “out of body” experiences and they are really weird. I can literally feel my body just giving out. I can feel my body just “dying.” My body is just so tired. It is tired of suffering. I just don’t know how much longer honestly it can hold on. It is tired of the pain, tired of the suffering, tired of being sick, etc. It is like a punching bag and it just keeps getting beat up 24/7. I never get a second to come up for air. I really just don’t know how much I can hold on and my family and me are watching my entire life just slip away from me.
I really can’t wait to get to California. They are the best doctors out there. I really have an amazing team out there. It just stinks that they are located on the other side of the country. It just isn’t so “easy” to get out there. You know? Well… we leave on Sunday for California and there are so many doctors that we are going to see. We are only going for a week this time, but it is jam packed with doctors. I am going to be seeing so many doctors and going for so many tests that my head is going to be spinning with so much information and such. I am going to be seeing the transplant team, the brain surgeon, the neurologist/autonomic dysfunction doctor, the pacemaker surgeon, the GI doctor, etc. It is nonstop doctors. But… it isn’t a “vacation,” so what else did I expect? LOL.
The GI doctor recently put me on a new drug to see if it possibly would help. However, it hasn’t and the doctor was really hoping that it would. She kinda is at the bottom of barrel too, so it basically all we have left is the transplant and just have to wait it out til then. Guess there is no “magic” up the sleeves anymore.
I will be flying again with my dad. Dad always goes with me when I have to travel. I just love my dad. He is not only my “dad,” but he is my very best friend and my hero. I don’t know what I would do without him. I know how much it hurts him that I can’t get well and I know how much he would do anything and everything to get me well. He would literally chop off his arms if it meant me getting well. He always tells me that he would “take the disease from me if he could.” But I always tell him “he would give it back to me in a heartbeat because you wouldn’t be able to handle it.” This disease takes no mercy. It is simply the worst. I have already had doctors state that if “Hell was a clinical medical condition, it would be known as my disease.” Not only do I suffer medically from this disease, but it also is extremely painful. It is one of the most painful diseases that you can possibly have. Experts liken the pain response to that of “an engine revving out of control.” On the medically accepted McGill Pain Scale (0=no pain -to- 50=worst pain) RSD is ranked as the most intense and extreme type of pain you can possibly experience… above a bone fracture, cancer pain, childbirth and even above amputation! It is horrible.
I am so very nervous because I know how much I need these surgeries and how much I am at my last straws. I know how I am dying and I know how I don’t have long to live. I know these are basically my only chances if I am going to live and I know also how risky these surgeries are as well. After all, brain surgery is no easy surgery because we are talking about someone touching my “brain!” I have a brain tumor on the pituitary gland, which is really difficult to get to and treat. I was also told that I might need radiation and/or chemotherapy. My dad has been very wonderful in that he said he would shave his head with me, but if it comes down to it… I don’t know honestly if I am going to go through with it. I have been doing everything that I can to get well, but I don’t know if I could possibly go through with the chemotherapy and radiation. It just is too much. There comes a time when enough is just enough. But… I don’t want to hurt my dad at the same time because I know how much he wants me to get well, so I don’t now what to do. I do know that I really don’t want to hurt him, but I also don’t want to go through with the chemo or radiation if it comes down to that. But, one step at a time and I will find out what is in store for me when I see the surgeon on Monday.
I also need a transplant and I know that the transplant is extremely risky and radical. Yet, it would really be amazing if I can get through it. The transplant is extremely dangerous and only 8 hospitals in the country do it, Stanford being one of the 8. It really has only been done since 2008 and Stanford has only done about 40, even though they have done perhaps the most. When I talk about this transplant, most people can’t believe that I am having it done, as it is basically unheard of. They are basically “gutting” me. They are giving me a new small intestine, large intestine, stomach, esophagus, and pancreas. It is extremely dangerous and radical. They said that it is the transplant that is the most riskiest, as it runs the highest rejection rate of all transplants. I really am nervous, but the doctors say that if I do make it through the transplant, it would really transform my life and make a huge difference. That is what is keeping me going. I really can’t imagine the day when I am not suffering and I don’t have to worry about all this anymore. I can’t wait for the day that I will be able to “eat” again. People take “eating” for granted. However, that is something that was taken from me.
My dad will literally do anything and everything for me. He always makes the sun come out on the gloomiest days. Even when I am not feeling well, he always tries to make me feel better. I am just so afraid that we are going to get bad news. Not only am I afraid for myself, but I am also more afraid for my dad. I don’t think that he could handle it. I know that if something should happen to me, he would never be able to recover. So… I am so afraid that the news won’t be good for him because he is looking forward to California so much and really hoping that they will be able to help me. In fact, he is putting all his eggs in that basket. He is constantly telling me to “hold on Fallon… California is right around the corner.” He really is thinking that California is the “Miracle Answer.” I only hope that he is right.
Well… tomorrow morning is bloods. Gosh… I wonder what the bloods are going to come back as because they are so very low as it is, and they continue to drop. I am literally in the level that I can easily go into “cardiac arrest” or have an arrhythmia. I should also be in the hospital because of this, but the hospital isn’t always the best place for me. I have no immune system and the hospital is one of the best places to pick up an infection. So, the doctors like to keep me out of there as much as possible because if I do pick up an infection, it could easily kill me. Everything is magnified for me and therefore, a simple cold is like the flu to me. In addition, with all the meds that I am on, it is very difficult to put me on antibiotics that could “cure” something if I get an illness because of all the interactions that could possibly occur with the meds that I am already on. In addition, the stuff that they would give me would burn up the veins of a normal person. With me being so hypersensitive, it would be so much worse for me. Finally, it would only be a temporary fix. When I get home, I would only be back to square one and therefore, all that time in the hospital and all that risk and suffering while being there would have been for nothing. You know? So… it would always be merry-go-round back to the hospital.
So… the doctors try to keep me out of the hospital as much as possible. They are watching my bloods very carefully, but they are dropping like crazy. Between everything that is going on and then the bad bloods, I really am a walking disaster. I just hope that they don’t drop further, especially since I am leaving for California and will have to travel, which will exert extra stress and pressure on me. It will definitely affect my heart and if my bloods are down and already affecting my heart, who knows what would happen?
I have been trying to pack a little bit here and there because I can’t do too much due to my condition. It is going to be a long flight to California, so of course I am bringing my iPad. Dad definitely loves that thing. Dad and I will of course watch some movies to try to keep us busy. I was thinking of watching BATTLESHIP, THE LUCKY ONE, and THE RAID: REDEMPTION. I am also probably going to watch THE LORAX because I wanted to watch that this past week, but I couldn’t rent it. I wasn’t going to spend close to $20 to buy from FIOS, when it wasn’t even where I got a DVD for it. So, I figured that I would just wait a few more days til it was able to be rented because it would be cheaper. Do you have any suggestions for any better movies?
I bought my dad his birthday gift since his birthday is around the corner. His birthday is September 9th, which is basically as soon as we get back. Since money is tight and he also needed shirts when we go away, I figured that it would be a perfect gift. If I didn’t buy it for him, I know he wouldn’t buy it for himself and that was one of the main reasons why I bought it for him. He definitely needed shirts to go away with and therefore, I thought it killed 2 birds with 1 stone. I bought him some shirts and gave it to him, but he didn’t care for the colors. He likes his “blue” shirts and I got him various colors such as orange, red, yellow, etc. I mean… how many “blue” shirts can a person have, right? But… since he wanted “blue” shirts, I returned what I ordered him and got him new shirts. This time I got him more shirts in the “blue” family, but I still managed to get him 2 shirts that weren’t. I got him a nice green shirt and a nice yellow shirt. There is no way he is wearing “blue” all the time. I really wanted to make his birthday special because not only does he do so very much for me, but it could be the very last birthday I share with him. So… I wanted to make it as good as it can be.
I have also been trying various ways to raise money. Even though I have gotten so much weaker and sicker and can’t do as much as I have done before, I am still trying. I have sent letters again to the media (television programs and news programs), and hopefully they will answer me. I am so thankful to all the people who have contributed to helping me… whether it is by donating, spreading the word, or even by saying a simple prayer. I can’t tell you how much it really means to me. I really get all choked up each time I think of all the wonderful and thoughtful things people have done to try to help me out.
A very thoughtful person has sent me a new bear to add to my collection. I love stuffed animals, especially GUND bears. Anyway, this person has been by my side everyday and has been so caring towards me. She will literally bend over backwards for me and do anything that she can to help me out. Anyway, she bought me a bear to bring with me to the hospital and to treatments so that she can be by my “side” all the time. He is absolutely the cutest. I love him. His name is PHILBIN, but I am thinking about changing it. Not only is he the cutest, but he is so cuddly. Whenever I am so stressed, it really calms me down to cuddle with my bear, especially him because he has beans in his paws and toosh. I like playing with the beans, as it is kinda soothing. Since I am always in the hospital, I dressed him in his own hospital gown. I think he looks kinda cute in it.
Wanna hear something amazing? Dad went fishing this past weekend. I used to love fishing too, but I haven’t been able to do so since I got sick. This disease has robbed me of so many things and I can’t wait to be able to have my life back. Anyway, my dad loves to go fishing and he usually goes on his fishing trip once a year. However, since he knows how much I do love to go fishing, he does arrange one Sunday at least during the summer to take me fishing off the dock. Since I can’t go out on the boat because of the waves and rocking, as well as since I can’t stay out in the sun because it burns me, my dad takes me very early in the morning fishing off a dock before the sun really comes up. It isn’t the same as going out on the boat, but at least it is something. It is even more special because it is a day I get to do something “fun,” which is something I never really get to do, as well as get to do it with my #1 dad. It is even more special because it is something hat my dad arranges when he doesn’t have to. He is always trying to arrange things so that I can be happy.
Anyway… when he did go fishing this past weekend, guess what he caught? He caught a sand shark. He was so proud of himself and really amazed. It was 2 feet long. He took pictures with it and everything. When I saw the pictures of it, I couldn’t believe it. He was holding it like he was so scared and such. He said that he was “scared that it would bite him.” Too bad I didn’t see this in person because this is something I definitely would have loved to see. Who would ever have thought that my dad would have caught a shark when he was just fishing for fluke?
It is really extremely difficult to battle this disease, but to know that I have support from people behind me… it really makes a HUGE difference. I fight because of all the people behind me!! I get my strength from everyone behind me to keep going and I am forever thankful to them. If you can please continue to spread the word that “help” is needed… please do so. If you have any fundraiser ideas, you can always email me at Spunkyfal@aol.com or leave comments here.
Well… going to get going… been a long day and not feeling too well. Thanks again for all your support and encouragement. I will write again when more info is known. If I become hospitalized before going to Cali, I will let you know.