Well… I am officially back from Ohio and I wanted to write to let you know all that has happened, as well as to wish you a very Happy and Healthy Holiday Season. I can’t believe the holiday season is upon us already and 2016 is less than four weeks away. I only pray and hope that 2016 will be a great and amazing year for both you and me. I only hope that 2016 is filled with happiness, good health, no pain, and of course prosperity. I have been suffering so much that I really hope that 2016 will really be the year that starts a brand new life for me.
I can’t remember the last time we celebrated the holidays. Due to my illness… life in my family has taken a drastic change and life is just not the same. We don’t do things like we once did like go on vacation or celebrate the holidays. In fact, I can’t even remember the last time we even went out to a restaurant for dinner. All the happiness that was once in my family has been taken by this family as this illness has become nothing but a heavy burden on all of us. Not only has it been directly affecting me because I am the one afflicted with the illness and dying, but my entire family has been struggling with it as well along with me for the duration that I have had this horrific illness. This illness has really taken a huge toll on my family both financially and emotionally
Due to how expensive the cost of this illness is, it has put so much pressure on my family to try to get the funds in order to afford the treatment to save my life. However, I have been suffering so much and for so long that there comes a time when the money just runs out because money can’t last forever. After all, it isn’t like we have a money tree in our backyard. So we have given up everything that we could… vacations, going out to dinner, celebrating holidays, etc. just so that we can try to put all the money towards getting the treatments that I desperately need. However, even by doing this… it is literally impossible to get the treatment because it isn’t nearly enough. We desperately need the help of others in order for me to get this treatment because we can’t afford it ourselves.
So I am only hoping that this holiday season that others will find it in their heart to help me receive the medical treatment that I desperately need to live. I know I am asking a lot and I don’t mean to sound like a crier or beggar, but getting donations so that I can get the treatment and medical help that I need would be the best gift that I could ever get. I only pray that perhaps my miracle can come this holiday season and that I will finally be able to get well because if I don’t, I fear that I won’t see the next holiday season. I am just deteriorating too fast at this point and things have gotten soooooo bad that it is unbelievable how bad it can be and yet I am still living and pushing on.
I can’t believe that I am still pushing on despite how bad things have gotten and how badly I am doing. But it is because of my family and great people like you that I am still going. Even the doctors are shocked that I am still alive. Never before did they see someone as sick as me, with a BMI as low as me, and a weight of being only 60 somewhat pounds still alive. Yet… I am still pushing onward hoping and praying that my miracle will soon come about and I will be able to get back the life that I was robbed of. I have so many dreams and aspirations and so many things that I have not been able to do. My time on earth is not done yet. So I keep hoping, going and pushing onward
So If you can please help me achieve my miracle this holiday season by helping me get the medical treatment that I need to live… I would appreciate immensely. Any donation is greatly appreciated and no donation is ever too small. Please donate at www.gofundme.com/help4Fallon. If you have any questions or have any ideas on how to fundraise or receive more donations, feel free to also contact me at Femirsky@gmail.com. Please spread these links to as many people as possible because I am desperate.
I also need donations so that we can afford to go to Nebraska. We just got back from Ohio a few days ago, as I was at the Cleveland Clinic, and now it appears that we have to go to Nebraska. We barely made it to Cleveland because we didn’t have the funds. There is no way we are going to make it to Nebraska without help and I definitely need to get there because I will die if I don’t. We are scheduled to leave January 10th, so that gives me about a month to get the funds.
Unfortunately, when we went to Cleveland, we were told that I got too sick for them to do the procedure that they originally wanted to do, which was to first remove the colon because it is completely useless and diseased (so I can easily rupture it and go into sepsis) and causing so many other problems in my body like putting pressure on my other organs and causing them to fail such as with my heart. After that was supposed to happen, I was supposed to have a multivisceral organ transplant, which consisted of getting a new small and large intestine, stomach, pancreas, and liver because my entire GI system is gone. This was all supposed to start taking place awhile ago when I was much stronger, as I have deteriorated a lot over the course of time and a lot has taken place. We didn’t have the funds right then to have the surgery right away and since no one does nothing for free, we of course couldn’t have the surgery at that time. Plus, who would think that in the course of waiting to raise the money needed for the surgeries that I I would need to have major surgery to repair the fracture to my hip, pelvis and femur, which took a huge toll on me. So with everything happening… I just deteriorated so much that the original plans couldn’t happen anymore. I now need to now go to a hospital that is even more specialized supposedly and better able to care for me, which is the hospital in Nebraska.
Dad, Scooby, and I went to Ohio last week with great hopes that something was going to be able to be done and I was going to get better. What an adventure it was!! This was Scooby’s first plane ride and not only was I nervous for going to the hospital for myself, but I was nervous about how Scooby was going to take the entire trip… especially the plane. But boy… Scooby really surprised me big time. He took the plane like a real ‘trooper!’ Everywhere we went… whether it was on the plane, to a restaurant, in the hotel, in the hospital, etc. we kept getting compliments on how well-behaved and amazing Scooby was. In fact, I even had him wear a diaper on the plane and in the hotel just in case because you can never be too careful. After all… when you are on a plane you can’t tell the pilot to ‘land the plane, my dog has to go to the bathroom!’ But to our surprise he never had one accident for the entire trip, and he would not go to the bathroom from like 8 AM until 4 PM. He was just simply amazing.
I made sure that Scooby was well packed with anything and everything that he could possibly need. Whereas dad and I shared a suitcase, Scooby had his very own. After all, he had to bring all his clothes too. In fact, he even was helping me pack his suitcase when I was packing it. It was so funny. Then when I was all done, he even tried to pull it along. I had to keep telling him “not now Scooby… we aren’t leaving!”
What a trip we had. We had a stopover in Chicago on the way to Cleveland and they ended up leaving Scooby’s stroller there because we gate checked it. I was literally freaking out when we arrived in Cleveland and there was no stroller for Scooby. After all, Scooby loves that stroller and he basically lives in it. He doesn’t go basically anywhere without it because he sleeps in it and feels more confident in it and everything else. Plus… I needed that stroller to because I use it as a walker too. I can’t really walk myself and using the stroller as the walker is much easier because a traditional walker is too tiring because it doesn’t really move because it has no wheels or anything, and a rollator is too big and heavy to use especially when I am so small. The rollator is nice when I am home and don’t need to transport it, but when I have to go someplace and bring it…it is so big and heavy. So basically I was freaking out when there was no stroller to be found.
Yet when I went into baggage to file a claim, Southwest told us that it was left in Chicago and will be on the next flight here and they would deliver it to the hotel. I was so relieved because we both needed it. However, to make a long story short, the stroller never showed up by 1 AM and after calling them over and over again, they finally brought the stroller at 2:30 in the morning. I never saw Scooby so happy! He ran to it when he saw it. However the stroller did break when they had it so I am going to see if I can file a claim and if they can do something about reimbursing me for it. Can’t hurt to try.
Scooby had such an amazing time though. We all did. Even though we were there because of the hospital, we still tried to make it as ‘fun’ as possible. In fact, Scooby and dad would have races up and down the hallways. It was so funny to watch.
In terms of what happened though at the doctor, we learned that they did have this new machine out there would act like a stimulator and be placed in my sacrum. It would function in a way so that I don’t leak any mucous and help with the peristalsis in my colon and rectum. I was really excited about this idea because it would stop me from having accidents and wearing a diaper at times. However, upon examining me afterwards… the doctor saw that there was no place whatsoever to put the machine. I had no body fat whatsoever to hide it or anything. SO there went that idea. The one thing that I was absolutely happy for and wanted. I couldn’t get. I asked about plastic surgery, but they said it was impossible
Then the doctor moved on to the next area of business, which was to remove the entire colon. Originally the plan was to remove the entire colon and then hook up the small intestine to the rectum. They would then try to get me stronger because they were hoping that the small intestine wasn’t as bad as they were thinking and it would possibly function better without the large intestine. They wanted to do this so that I would hopefully be able to become stronger so that when I underwent the multivisceral transplant that I would be able to survive it because it is extremely dangerous and risky. Only 6 hospitals in the country do it and it is supposed to be the most dangerous transplant you can have.
However, as I stated previously, too much time had passed between trying to find the money for the surgery and then breaking my hip, femur and pelvis and recovering from that particular surgery and as a result, I got too sick and weak for them to undergo the removal of the colon. This surgeon just didn’t feel comfortable enough doing it and rather would have given me tubes and bags instead, which is something I didn’t want at all.
This surgeon was really scared that something was going to happen if I had it done in Cleveland because I wasn’t strong enough to undergo a huge operation to remove the colon. Therefore, she proposed giving me a bag like an ileostomy and then putting tubes in me as well along with vents. The tubes would be to put stuff into me and pass things along and the bags of course would be used to take things out. They would also put vents in me because if I should get bloated or anything, I would then be able to open the vent up and release the gas. Basically I would be a walking machine…. Especially between all that and then the rods in my leg. I am like no longer human anymore and I am becoming more and more like a machine.
The tubes, vents, and bags would be placed in me in a way to kind of mimic a digestive system in me, as it would make it so it would bypass my real digestive system. The goal would to have me get stronger through this method and then once that occurred, then they would first proceed with how they originally intended, which was to first remove the colon and then they would get ne even stronger, and then they would do the transplant. So basically this would take a while and it would be a never-ending procedure. There is also no guarantee that I would ever be strong enough for them to take out the colon. In addition, I can easily die while I am getting supposedly stronger from this because in the meantime that they are feeding me and building me up through my ‘alternate digestive system,’ I am still going to have my colon, which is still going to continue to cause problems and will still eventually kill me. However, they are hoping that with it not being so much in use, that it won’t happen so quickly and hopefully nothing will occur with the colon such as it rupturing or me going into sepsis even though the colon is ‘dead!’
I really don’t want to have bags and tubes coming out of me everywhere. That is not a way to live. I am only 33 years old and I have suffered enough as it is… to me that is only further suffering. Not only would I have bags and tubes coming out of me, but I would also be constantly hungry. Although they would be technically feeding me through the tubes, I would still be hungry because it wouldn’t register with my brain since it isn’t passing though my mouth and my stomach and other organs. So what type of life is that?
So the doctor is sending us to Nebraska where there is a hospital that is supposed to be like the #1 hospital in intestinal rehab and transplants. In 1990, Nebraska Medicine transplantation specialists were among the first to recognize patients suffering from the complications of intestinal failure and began performing liver and intestinal transplants. In 1993, they became one of the first medical centers to perform isolated intestinal transplants. Nebraska Medicine is one of a few facilities with expertise in intestinal failure and a leader in intestinal failure, as well as it is one of the busiest programs in the United States. The survival rates are very high there. In fact, they have been calling me for years and trying to get me to come to see them. So we leave January 10th to see what they can do for me.
So that appears to be all that is happening. I desperately need something to be done because I am rapidly deteriorating and I definitely won’t see the holidays next year if I don’t get treatment and get better now. I am getting the worse debilitating pains in my life that all I can do is crawl I in a ball and cry. Plus we know something is wrong and that I have an infection somewhere because my white count is so incredibly high. We are really racing against the clock.
So perhaps I will get the best gift this year. Perhaps I will get my miracle. Keep those fingers crossed and please pray for me. If you can please spread my link (www.gofundme.com/Help4Fallon), I would really appreciate it. Thanks again for all your support and encouragement.