Hi! I just wanted to write a brief blog to thank all my supporters and all the people who have contributed to helping me make it this far. I definitely couldn’t have made it this far without you. Whether it was through prayers, spreading word of my website, donations, messages of kind worlds, etc., I really want to thank you. I can’t tell you enough how much I appreciate it. I am really going downhill fast, but whenever I saw a message that someone donated or someone sent me a message or someone shared my site/link/message, it really put a huge smile on my face!!
I am so sorry that I haven’t written sooner and thanked you for all your thoughtfulness and generosity, but I have been really sick lately… Sicker than usual. Yet, as I am getting to leave for the Cleveland Clinic and embark on one of the biggest adventures ever that I have no idea what is going to happen, I really wanted to thank you all and tell you all how much I appreciate everything that you have done and continue for me. After all, I need all the support and encouragement that I can receive.
You are such a wonderful and generous person, and I only wish that more people can be like you. If only there were more of you… I perhaps could definitely get the treatment that I need to save my life and I wouldn’t have to worry about this. You are really an angel to me and I really am so thankful and appreciative to all that you have done and continue to do for me.
I can’t wait for the day to be able to announce on this site that “I AM WELL!” When that day should happen… please let it be known that it was because of you and your thoughtful donations and support that it was able to happen. You made it happen and it would definitely not would have been possible without you. I really don’t know how I can ever repay you. There is nothing more precious than your health, and people don’t realize it until it is too late that this is the truth. People are not appreciative of what they have until they don’t have it at all. It is the people that are like you that shine through in life because you CARE about others. You don’t take things for granted and you help others when in need. Health is wealth and when you have it… you definitely have everything.
I will be leaving shortly for Cleveland and I am so scared. I have never been more scared for something in my life. I am in more pain than ever, I am swelling up with pitted edema, my bloods are failing, I can’t clot, and they think I am in heart failure, and more. I am not going to lie and say I am not afraid for this huge adventure that I am about to embark on. But I also know that this is the only thing to do because I am rapidly deteriorating and I am at the point where it is “do or die,” as I am a grenade that has been detonated. I just hope I get to the hospital in enough time and be able to get the help that I need to save my life. But knowing that I have the support of people especially like you makes such a huge difference. I would never have made it this far and will continue to make it without you.
I will need so many surgeries in the next upcoming weeks, and who knows what is in store for me. I just hope that they all can come about because we are so short on funds and of course everything costs money. Even though we might be able to go to the Cleveland Clinic to get SOME treatment, I really need ALL the treatment if I am going to save my life. But unfortunately, we cannot afford it on our own. So if you have any way of spreading the word of my website (www.gofundme.com/help4Fallon), I would extremely appreciate it because I really don’t have time on my side. I was an active, healthy teenager, until, without any warning, my life as I knew it was ripped away from me by a rare, painful neurological disorder that has no cure. The doctors say that I have only a few weeks left to live… As the doctors have already told me… “If we don’t turn the corner now and do these operations NOW… I am NOT going to make it at all!” But I have a different plan, as I am going to make it through this with the help of others and reach my dreams and live the life that I was robbed of. I am going to become that “doctor” that I always dreamed that I wanted to be.
I am going into the hospital as a person and hopefully going to come out of the hospital well, but missing a few things. I need heart surgeries, calcifications taken out of my coronary arteries, pacemaker placed (which can’t be done like a normal patient because mine has to under the muscle and bone because of how thin and sick I am. It can easily get infected if it is placed like a normal one), bone grafting, jaw surgery, colon removed, multi visceral transplant, etc. We won’t know how urgently the multi visceral transplant (small and large intestines, pancreas, liver, and spleen) will take place until they take the colon out because I am so sick and my GI track is diseased and basically “gone” as well that they really don’t know what the next step is going to be until they remove the colon. Only then will they know because it all depends what the small intestines appear to look like because they know the colon is too far-gone to be saved, but there is a possibility of maybe saving the small intestines. If the small intestines can be salvageable, they will use it as basically the only organ in my abdomen for the GI track. The transplant wouldn’t be as urgently needed if this were the case. However, it would mean that they would bypass the stomach and use the small intestine basically to connect my esophagus to my rectum. I guess I can be thankful that even though the small intestine is considered “small,” it is still large (long) enough to do all this. After all, it is the small intestine that is the most important in the digestion process because it absorbs the nutrients. Even though the other organs play essential roles in the digestion process and they are needed, you can live without them. But the small intestines are too essential to live without. If they get inside to remove the colon and the small intestine doesn’t look good, it will signify that I will need the transplant urgently. So we will see what happens. The colon removal surgery is scheduled for May 11th, but there will be other surgeries to deal with prior, so I really will have my hands full from DAY 1. We are also hoping to have more funds donated by then because as I stated before…I will need many more surgeries prior to that date that we already can’t afford.
No one knows what the outcome will be or anything until they go in for the huge colon removal. I have so many other health problems so these surgeries are really going to be even more dangerous and risky for me than for the traditional person. That is why I am also thankful that I have your support behind me. They are going to have to be extremely careful with me because they have to first worry about setting off one of my other diseases and making those illnesses worse as well in the process, as well as keeping me comfortable because these other diseases really complicate things by making me extremely hypersensitive and everything intensified and 100 times magnified and worse. I suffer not only from a failed GI tract, but also from RSD (which is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System that is known as the most painful and debilitating illness in the world to exist. I am extremely hypersensitive, feel like I have gasoline and spasms all the time, constant burning pain. RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis). I also have severe autonomic dysfunction and severe Gastroparesis, my entire GI tract is affected and is basically ‘dead.’ My colon is especially diseased and needs to come out. Nothing passes through and as a result, I am getting toxicities leaking into my bloodstream and they are intoxicating and shutting down my organs as well. So I really need to have this colon taken out as fast as possible. This is 24/7 and I never get a break.
Since my GI tract is totally tract dead among my other health problems, it is really going to be a huge problem taking out that colon. I am just scared that I am going to end up with a “bag” especially since after you are put out…. that really is it! You don’ really have a ‘say’ in the matter after you are out and the cutting begins. It is weird to think that I will be losing some organs… organs that I have had since time of conception. It also freaks me out that once the cutting begins, there is no going back. So I can’t keep thinking that maybe this is a mistake even though I know deep down that this is not and how immediate and essential I need this to be done ASAP.
The only comfort that I get is at least one of my head doctors tell me that my head transplant doctor is “not a bag guy!” So hopefully this doctor is right, everything will go as planned, and I won’t have to worry about the “bag!” I do know that when I do wake up from that particular surgery, the first thing that I am going to do is look for that bag and feel for it. If I do find one… they better get psych immediately because I think I am going to freak out. No wonder they are going to keep me in a coma for a couple of days afterwards. It is not just to let me “heal and recover” but it is also to help me deal ‘soughta’ with this just in case it goes wrong. The doctors did say, “If it did come down to it and I needed a ‘bag,’ it would be only temporary and I shouldn’t freak out.” However, I don’t count on anything being temporary because it isn’t like we can go back anyway. Once those intestines are out, there is no putting them back. In addition, one I get that bag, there is no guarantee that it will be only a ‘temporary bag’ and that I will be able to be reconnected in about 6-8 weeks especially with my history. With my history… it is like MARSHALL’S LAW. Whatever can happen will happen!!
I am so tired of being sick and I really can’t do this anymore. I don’t want any of this ‘wait and see’ attitude anymore. I told the doctors don’t hesitate to remove anything. I told them only think carefully and really think about things when you have to ‘add’ stuff to me such as a bag. There are two things that I am deathly afraid of and I don’t want… a bag and a tracheotomy. I know that if stuff gets hairy and they ask my dad what to do because I will be ‘under surgery’, my dad will do anything and everything to get me well. You know Walt Disney and how he is supposedly ‘frozen’ and waiting for a cure to come around? Well… my dad wants me to be the “2nd Walt Disney.” He really wants to freeze me as well because until a cure comes around because he doesn’t want me to die. I just can’t hang on anymore and I am at the point that I want them to do everything and anything and I can’t wait around for any of this stuff anymore. It is just getting to be too much! Ether fix me or just let me go already. I can’t take the physical pain or the emotional pain. It is too hard already. It isn’t fair to me already. Don’t get me wrong, I am not giving up… I just want to get well so badly that I don’t want to ‘wait’ anymore for anything because the longer that we wait because we hope that I get stronger for the next step, I only end up getting worse and therefore, the doctors end up doing nothing because I am weaker than where they feel comfortable doing anything.
I am just getting scared… scared more and more as the time ticks down until the time comes when they do the surgery. Unfortunately even though I will be leaving for the Cleveland Clinic in a day, I still have time to be ‘scared’ because the surgery for the colon isn’t until May 11th. In the meantime, I will be undergoing other risky, intensive, and dangerous surgeries and therefore, I will have my hands full for the next couple of weeks. I know that all the surgeries and procedures will be long and dangerous, but the surgery for the removal of the colon will be at least 10-12 hours especially depending if they bypass the stomach and have make use of the small intestine.
I am not going to continue to bore you, but I just want to say how thankful I am that you supporting me and wishing me well. I only hope that this all works out because we can’t even afford the “little” things anymore like even my day-to-day current treatment. For example, we can’t even afford my meds anymore without help… especially when you take more medication than a horse. I take everything from ketamine to methadone to dilaudid to morphine to klonopin to more. If I was better, I wouldn’t have to worry about all these expensive and costly treatments, all these expensive meds, or where and when I will get this money from to pay for it. I was never one to cry and plead for money before I got sick and I can’t wait for the day that I can be independent again and not have to rely on others in order to receive the lifesaving treatment that I desperately need.
Well I guess this is it. The next blog will be from hopefully Cleveland Clinic. I will try to keep you as up-to-date as much as possible, but please be understanding because I will be undergoing multiple surgeries and in intensive care a lot. I will be placed in many comas and on very high doses of medication and therefore, there will be times I will be unconscious and unable to write.
My dad is already freaking out in how he is going to be spending so much time in the hospital. One of my head doctors promised me that he will keep him busy as much as possible… like even take him driving in his Porsche to get incredible burgers because that is the only time he is permitted to have burgers. So… since he is going to be in the hospital and ‘bored’ so much… I am going to try to teach him as well to write some blogs so that he can keep you up-to-date as well when I can’t write for myself. I am also going to try to do some “video blogs”, but I don’t know how that will go because I don’t know how much I will be up to ‘typing!’
Well I guess this is it. There is so much still to do before we leave. We have so much packing to do. We are leaving Sunday morning and checking into the hospital probably Sunday evening. One of my head doctors is on vacation and will even be going away and first coming back to the area earlier that day. He did say though that he will come into the hospital that night when I call him to say that I am “checked in” so that we can further talk and so that he can start an IV line and I can receive some hardcore meds. I am especially going to need these meds because not only am I going to be in my regular pain that I can’t usually take, but I will be even worse because it will also be my big traveling day, which makes everything even worse in general. Traveling really takes a huge toll on me over all, so I will be in even worse condition than usual too. Then to put the icing on the cake, I have surgery for the my heart and to put the ports in first thing Monday morning, so I will be freaking out over that as well. So you can imagine how much pain and worries I will be having during this time. I am just so thankful that I have such a great team of doctors because no other team of doctors will go beyond what they are doing already. Not only are they doing everything to make me as comfortable as possible, but they are even coming in on their ‘vacation days’ to make sure things are done as comfortably as possible for me. He said, “once I am nice and comfy, he will leave and I will l see him first thing in the morning for surgery.” Who could ask for a better doctor?
I know I have the top team in the hospital and even the world working on me because even the best surgeons in their fields have turned me away and placed me in the hands of Dr. Kareem and the transplant team of the Cleveland Clinic. For them to do this and say this is a “Kareem” case… it shows how difficult I am already because they only get the really difficult or “hot potato” cases that no one else wants to take on. This small knit of surgeons (like 10 of them) are the best of the best because Cleveland doesn’t just take anyone! My anesthesiologist even said to me that there is no one better than these guys and how these surgeons are STELLAR!! So I am only hoping and wishing for the best.
There is so much packing to be done and I have to still sought all the medications. That is something that is going to be so time consuming because of how much meds I take and my dad takes as well. Even though my dad doesn’t take nearly as much meds as I do, it still will take time because I have to set each dose of medication up and label it with who’s medication it is and the time of day because my dad has no clue how to even set up medication. I am like the ‘nurse’ in my family because I set up everyone’s meds at home. So I bought little pill bags to put the pills inside because even though we usually use vials, we are going to need to many vials this time because of the length of time we will be away and therefore, I thought it would be easier if we just used little pill bags. So I will be busy for a couple of hours setting that all up.
I am also preparing just in case something should happen. I am making my mom a book of how to do everything. It is really funny because I usually do everything that I can at home. So I want to make sure that everything is covered.
I also want to add some stuff to my iPad in terms of movies, books, apps, etc. so to make sure that I will have some stuff to do in the hospital. If you have any suggestions, please let me know. Also…I would love to hear from you while I am in the hospital, so if you ever want to contact me, please email me at Femirsky@gmail.com and I will email you back.
Well… thank you again for all you generosity and support. I will never forget you. Please continue to follow my story and please continue to pray for me because I am going to need all the prayers and support that I can get in order to overcome this. I can’t tell you enough how much of an “angel” you are to me and how thankful I am. Please always remember how special of a person you are.