Hi! Obviously if I am writing, I have some news to share. I haven’t written in awhile because I haven’t been well. It hasn’t really been good here. Even though it is the holiday season and I am hoping for that “holiday miracle,” it appears it isn’t going to happen. With the holidays approaching, I really only have 2 wishes. I really wish that a “miracle” takes place and that I get better. However, if that can’t happen, I kinda wish that I would get my “wings” because I am just suffering way too much already. I don’t know how much more I can take of this. I am hanging on… but barely. In fact, the ONLY reason I am hanging on and making it is because of the encouragement and support I receive from my family and others. It is through the encouragement and support of others that I gather my strength to continue on.
Things have really been deteriorating. I am supposed to be leaving for Nebraska in about 1-½ weeks. So, I just really have to hang in til then because hopefully they will have some answers for me. Hopefully they will be able to help me because that is where I am hoping to receive the transplant, as I need a multi-organ visceral transplant, which includes a new stomach, small and large intestine, and pancreas. Only 8 hospitals in the country perform this transplant and even though I am so much better off in California, my insurance company is forcing me to have it done in Nebraska. Nebraska is supposed to be the largest center for intestinal transplants, but they do not do “multi-organ” per se. I will be one of the first for this. Talk about being a “guinea pig.”
Even though my transplant is extremely rare, as each place that does it only really does 1-2 a year, I still don’t want to be one of the first cases that a hospital does. It is one of the most dangerous transplants that you can have, as it runs the highest rejection rate of all transplants. Therefore, I really want to be in the best of hands because there isn’t one transplant that is done that doesn’t have complications and with my health… you have to be extremely careful because I am so very fragile. I only weigh in the 60s and I have so many other health related factors that can easily kill me. This transplant is dangerous for anyone, but for me… it is disastrous because any surgery for me (even the most minimal) is as intensive as it can get and can result in death due to the poor health status that I am in. I am soooo weak and fragile that if I survive through the surgery, it would be amazing. They have to be extremely careful and then the recovery will be extremely hard on me as well.
I really need to be in the best of hands. Even though the transplant is probably my best option and only option, I am still hoping that possibly there are other things to be done. However, we have exhausted all other options, but I am hoping that perhaps a new center or a new set of hands from a new doctor might have something new up their sleeve or different. You know? After all… transplant is something you want to do as a last resort because it is not only so dangerous and risky, but nothing is as good as your own organs.
Even though Nebraska is 1 ½ weeks away, we are still awaiting to hear from Cleveland Clinic. There is a doctor there that supposedly has done the MOST multi-organ visceral transplants. Even though Nebraska is known for being the largest center for intestinal transplants, they don’t really do the transplant that I require, as the most that they really do is transplant the small intestine and remove part of the stomach. Also, just because they are the “largest,” it doesn’t mean that they are the “best.” I much rather go to a smaller hospital if it means that the surgeon is better and such! After all, the Cleveland Clinic is so well-known too and considering all my other health issues, I think I am probably better off there because if something else should arise… at least they are equipped to handle me. Even though I am sure that the hospital in Nebraska is good, the Cleveland Clinic is ranked in the nation as one of the best. Plus, it is also closer to my house; so even in distance… it is much better in traveling.
The doctor in the Cleveland Clinic has supposedly been doing the transplant that I require for the longest amount of time of all the doctors. He has supposedly been doing them for the past 30 years and has changed the 5-year survival rate from being 40% to being in the 60s. I think that is quite an accomplishment. No other doctor has supposedly seen as many multi-organ transplants as he has. So… with all things considered… I really think that I am better off going to him. However, I am still awaiting to hear whether he will accept me and if the insurance will pay for ne to go there. It just stinks that the insurance will only pay for certain hospitals because there are just so few as it is and the ones that are good and I feel comfortable in, like the hospital in California, they don’t cover.
Even with the insurance paying for the actual transplant, I still need so much donations and support from others. Having them help pay for it “helps,” but it no way covers all my problems. Yes it covers the multi million-dollar operation, but it will not cover the rest of my treatment that I require or the travelling expenses or the living expenses that we will have to deal with because we will be forced to have to live there at the hospital for some time. It will also not cover my all my medications, which includes the anti-rejection medication that I will require after the transplant that is needed to survive. Just the anti-rejection medication will cost me about $1000 per month in addition to all the other medication that I require. My medical treatment is just so expensive and without the help of others, I fear that we will not be able to continue it. Especially with the upcoming New Year, I really am scared because it means that in order for me to be covered, I first have to reach the deductible needed for my insurance company. It stinks that they will not cover me until I pay out-of-pocket all the money for the deductible and then even when I do finally do that, it isn’t like they totally cover me anyway. I pay so much money in copayments and on medication and doctors that are not even covered by the insurance plan. Just in copayments, we pay over $25,000.00 a year. So, I am really scared because I don’t know how we are going to afford the deductible since money is so very tight and until we afford that, the insurance company will not pay any of my bills. It is always something with them. Health insurance is great until you need it. It is like the saying goes… “Health is wealth!” People don’t realize that if you have your “health,” you really have everything!!
So… I am really hoping that a miracle happens this holiday season. With the upcoming holidays, I was hoping that the media might be able to feature my story. Even though I have tried this route plenty of times before and it hasn’t happened, I was hoping that I might have a chance now because of the holiday season. I was hoping that they would have a “change of heart” or something. I know it isn’t really “what you know, its who you know,” but I was hoping that they would be able to help me and find the kindness to help me during this holiday season. The doctors have already said that unless a miracle happens soon, this will be my last holidays.
I am really not doing too well. My body is shutting down faster than ever. I just went to the doctor today and it appears that my kidneys and bladder aren’t doing too well. I went to the kidney doctor because of the huge pains that I was getting. Something just wasn’t feeling right. I also have been more nauseous than usual. I can’t tolerate any smell whatsoever and it appears now that I have such a keen sense of smell. I can’t believe the odors that I can smell. I smell literally everything and everything makes me nauseous. It is like being pregnant because pregnant women can smell everything and anything, but I can assure you that I am definitely not pregnant.
I kinda had a feeling that something was really wrong with my kidneys. My kidney doctor is always so very busy and “booked” up. However, when I called him and told him everything that was happening, he made a special arrangement for me, as he met me the very next morning first thing. For him to do this… I had a feeling that something wasn’t “right.”
Well… when I went to the doctor, he told me that it is now time that I need to have IV treatment at least twice a week in the hospital. My organs and body can’t keep up with the hydration that I need because they are shutting down and such. In addition, it doesn’t help that I have all the vomiting, mucous coming out, inability to drink because of my paralyzed digestive tract, etc. As a result of this dehydration, the body shunts blood flow away from the skin to internal organs, for example, the brain, heart, lungs, kidneys, and intestines. As a result, my organs are further becoming inflamed and shutting down even more. It is like a continuous cycle… one thing affecting the other. I definitely wasn’t expecting to hear this news. I hate hospitals as it is and it appears that I am going to have to go there at least 2 times a week so that I can have this IV treatment due to all my organs shutting down. Never a dull moment. With this happening, that is one of the reasons why I am having the debilitating stomach pain that I am having. The organs are just so inflamed that the slightest thing I put in my mouth will cause great pain!
I had signs of this for a while because of my blood work hasn’t been good. However, it has gotten to the point that it is really life threatening now. My kidney function tests are not good at all, as my bun and creatinine tests are elevated, which are signs of dehydration. That is further proof that I need this IV treatment at least twice a week because without it, I will surely die. Like I said before, my organs are shutting down. This can even lead to coma because of the decreased blood supply to the brain, as well as to shock because when the fluid loss overwhelms the body’s ability to compensate, blood flow and oxygen delivery to the body’s vital organs become inadequate and cell and organ function can begin to fail. If enough organs begin to malfunction, the body itself may fail and death can occur.
So now I need to go to the hospital for this IV treatment. I don’t know how on earth we are going to be able to do this because this means more time away from the business because my dad has to take me. My dad has already given up so much time to take me to my appointments. He is working like a horse as it is and I am already so very scared that something is going to happen to him. If something did, I would never forgive myself. As it is, he works every single day…. 7 days a week … from 4 AM til 7 at night. He is no youngster and there is no way that he can keep up this pace. I am so scared. But, he is trying to keep whatever work he has, as well as make up whatever work that he misses. After all, when he doesn’t work, no income comes into the business and not only does it hurt the business, but it hurts us as a “family” as well because there is no money to pay our bills. My dad already is taking a lot of time off to take me to whatever appointments I have already, especially to take me to Nebraska; he really can’t afford to do more. I don’t know how on earth we are going to do this because we can’t afford to do everything. We can’t afford not to take me for treatment because I will die and yet, we can’t afford not to work either because we need money to pay the bills and for my treatment. It is a “no win” situation.
In addition, when the kidney doctor examined me, he also took an x-ray of my abdomen. It was seen that my stomach has gotten so much worse. Even though my stomach is “dead,” it is getting distended with gas. The doctors are afraid that it is going to end up twisting or something on me, which is not good. Besides that though, it is contributing to even more pain and discomfort. I really need to get help and help quickly.
I can’t take the pain anymore. I have been maxing out on all my pain medications. I only wish that they could find me something else to take. I never thought that I would be screaming for more pain medications because I was never one for medication. However, I am literally climbing the walls. I am on so many different pain medications like Methadone, Morphine, Dilaudid, Nucynta, etc. but nothing is cutting it. The only thing that helps is the ketamine comas, but they only help when I am “under” because the amount of ketamine that I require is far too great than is FDA approved. That is why I kinda wish that I just get put into an everlasting ketamine coma so that I can just escape the pain. It is just unbearable. I don’t wish this pain on my worst enemy.
The pain is unbearable. I spend the nights awake crying because that is all that I can do. It is just torture. The pain goes right from the surface of the skin so that the slightest touch can send me up the walls to deep aching pain within the bones. Nothing is worse than bone pain, as it is the worst imaginable pain that you can imagine. Nothing cuts through that kinda pain except the ketamine and I think that the only reason it does that is because I am “unconscious” and therefore, I don’t know any better.
Besides the pain, I am getting so weak. I barely can get off the couch. Whereas before I was still able to “push” myself to a certain extent to do limited stuff, I can barely get off the couch nowadays. Even getting off the couch to go to the bathroom is really too much to bear. I literally hold it in so that I can try to minimize the amount of times I have to get up. Every time I get up, I just feel like I am going to collapse. All I wanna do is just lay in bed or on the couch because that is all that I can do. I am not even comfortable either because I can’t even lay with a blanket, as the slightest innocuous touch sends me up the walls.
My animals are my only sense of normalcy and comfort. Thank goodness that I have them. If I didn’t have my cat and dog, I don’t know what I would do. My cat stays with me all throughout the night and my dog stays throughout the day with me. She is like my babysitter. My mom and dad used to always know when I was doing “worse” than usual because she would be by my side and wouldn’t leave it. When I have to go to the bathroom or something, she will literally follow me there and then follow me back to the bed. Even during the day, when I have to get off the couch and she hears me stirring, she will come running so that she will come with me to wherever I have to go. I have nicknamed her “twinkle toes” because she hears me all the time and then I hear her little toes coming. It is so funny. My dog, on the other hand, just stays with me on the couch all throughout the day. So, even though I don’t have any friends or family to stay with during the day because my family has to work, I am in good hands. I have my “companions” to stay and keep an eye on me.
However, I was looking into getting a service dog because it was suggested that I should get one considering everything all that is doing with me. I thought it would be a good idea as well. Due to all that has been happening, I think it is an excellent idea, but I know that it takes forever to get one. I am putting it on my Christmas list, but I know it won’t happen. I would really love one more than anything because not only would it make my life easier, but it would really give me the companionship that I am missing. You really learn who your true friends and family are when you become sick because so many people walk out on you.
Anyway, having a service dog would be the best idea for various reasons. Not only would the dog really make a great companion, but it would make “living” so much easier. I can’t do many things because I can’t walk. The dog would really make my life so much easier, as it would be able to get me things, open doors for me, etc. It would really be a great asset to me, especially since of the debilitating state that I am in. In addition, since I am so gravely ill, we never know what is going to happen to me. It is very possible for me to have a seizure, my heart to stop, etc. I have severe autonomic dysfunction and I am so gravely ill that there are so many times we don’t even know if I am going to make it through the night. There are so many times that my dad is so afraid to leave me because he doesn’t know what is going to happen to me. At least with the service dog, hopefully the dog would be able to alert someone if something was happening to me or something so that if an emergency would arise, I would be able to be cared for immediately.
So… as you can see… it would really be an excellent idea to have this type of dog. However, like I said before… it usually is a very long waiting list and I don’t really have the time to wait. I really need it NOW and I know realistically that isn’t going to happen. But, maybe Santa will still answer my wish and at least send me that wish for Christmas because I need the help so badly. It would not only make my life easier, but it would help my entire family out because they wouldn’t have to be on so high alert in case something happened to me. The dog really would be an asset.
With me deteriorating so fast, we never know where I am going to be. I am literally walking a “tightrope” and it is ready to snap. My dad walks around the house saying how I “belong in a hospital.” He is right, but I really don’t wanna go. I don’t wanna live out whatever time I have in a hospital. Plus, the hospitals around here really can’t help me. I really need to go to California, Nebraska, Cleveland, etc. because those are the hospitals equipped to handle my disease. But like I said before, those hospitals take money… money that we certainly don’t have. It must be so hard on him as a parent to watch me as his daughter go through this. He wants to help me so badly and yet… his hands are tied. My dad would do whatever it would take to get me well, but he knows that no matter what he does… nothing is going to get me well.
My dad is so afraid of losing me and to be quite frank with you… if I should die, my dad would never recover. He is constantly bribing me about staying here. He is constantly saying how he would “never take care of himself” or “take his medications” if something happened to me. He acts like I am in “control” of this situation, but he is just doing whatever he can to try to keep me here. He has a theory that either I am being “tested” for something higher or I am being “challenged” for something better. He has an answer for everything and he won’t let me give up. I not only want to get better and live for myself, but I want to get better and live for my dad. Not only do I want to become a doctor so that I can make others better, but my dad wants to be able to see me become that doctor that I desire to be. I only hope that my dad gets that opportunity to see it because I know that would make him the happiest in the world.
With the holidays approaching this month and my health deteriorating so fast, we have been celebrating the holidays earlier than they are. This way if anything should happen, we already have given each other our gifts. I saved up and bought my mom this beautiful heart in another heart necklace. This way she can always remember me and how much I love her. She can always have my love around her neck. As for my dad, I bought him a new pair of shoes for work and new work shirts. He needed these items desperately and he wouldn’t buy them himself. So… I figured that he could also use the shirts when we went away as well, so it was a good idea. As for my brother, I bought him a electronic tie rack for his closet. He has started working and since he is wearing ties everyday, I thought it was a good idea. I really wanted to make these holidays really special for them because like the doctors said… these are probably my last ones unless that “miracle” happens. After all, they have done so much and given up so much for me. I wanted to make them extra special for them.
I have been trying anything and everything to try to bring some “luck” to me and to try to bring that “miracle” into my life. I not only put rocks up that are supposed to “heal” me, but I have put on my necklace the “Evil Eye.” This “eye” is supposed to stare back at the world to ward off the evil spirits and keep me safe from harm. I am willing to do anything and everything to try to help me.
Well, I am going to get going. I am not doing too well and I have bloods in the morning. Sometimes I wonder why I bother going because I only ever hear bad news. But…. I have no choice. I just hope that I don’t end up in the hospital because everything is “touch and go” right now. Not only am I medically unstable because of my organs and such, but my bloods are not good at all. As of my last bloods, my heart bloods are very low and I can easily have an arrhythmia and cardiac arrest. I am also having a difficult time clotting. Never a dull moment with me. I just hope that my bloods don’t worsen because there is only so much that my body can take. I am barely hanging on as it is; I am hanging on by a thread.
I have also set up another site in the meantime for the holiday season in hopes that I might receive additional donations. It is located at http://www.wishuponahero.com/wishes/?id=1358295. Even though I haven’t received any donations as of yet, I have received some comments and some well wishes, which I haven’t expected to receive. So, it was really nice to receive them to my surprise!
Well… I will hopefully write again before I leave for Nebraska or Cleveland (if I end up going there). When I know anything new, I will of course try to write and update you again. It is just getting harder and harder with how I am feeling. But, I do want to keep you abreast as much as I can. I really hope that you have a happy holidays. Enjoy the rest of the year… there is only a few more days left!!
Thanks again for all your support and encouragement. I definitely wouldn’t have able to have made it this far without you. In fact, like I have said before… I am basically holding on and continuing because of you and your support. You can’t imagine how you rejuvenate me. I am so thankful and appreciative for everything that you have done for me. You really re-energize my batteries so that I can continue to be the “energizer Bunny” and so I can “keep going and going.” Take care!! If you can offer any help whatsoever, it would be much appreciated…. whether it is by donating (even a $1 makes a huge difference), sending a prayer, or spreading the word that HELP is needed.