Well… I am writing to let you know that in a few hours I am off to Cleveland Clinic. I am only hoping and wishing that all goes well because I know that I have a long road ahead of me especially now. There is never a dull moment in my life. As if my life isn’t hectic enough, I was just thrown another bump in the road today that might have to result in the transplant being delayed. I am only hoping that it doesn’t though because I am literally running out of time. But you know MURPHY’S LAW? Well… it should be renamed to be FALLON’S LAW because anything that can go wrong will go wrong.
I can’t believe all that is happening! Never a dull moment in the life of “Fallon!” I am supposed to be leaving in a few hours and I am really not feeling well. I am sicker than ever because besides my usual illness, I just had emergency surgery today because I have a massive infection going on in my mouth and jaw.
I have been having some pain in my mouth, jaw, and teeth lately, but these past two days have really been horrible. It got to the point this morning that the pain was unbearable. For me to say that the pain was unbearable while on all my potent pain medications such as ketamine, dilaudid, methadone, morphine, etc., I wonder exactly how bad this pain actually is. This infection has to be MEGA if it was hurting me the way it was with all these meds. I really don’t complain that much when I am in pain because I suffer with pain 24/7. However, the pain that I was in this morning was so bad that I was hysterical. I knew that I needed help.
Thank goodness I went to the oral surgeon when I did. It turns out that I have a massive infection in my tooth and jaw. However, we had such a day dealing with it. Usually when I have to be worked on with something like this, I have to be under general anesthesia. Yet, we really didn’t have that as an option and all we could use was nitrous oxide and lots of novocaine. However, due to my condition, it was not helping me at all. They turned the gas all the way up and they gave me shot after shot. Even after 6 shots, they couldn’t get me numb. I was screaming while they tried to work on me. I felt so bad for my mom because she was the one trying to hold me down. I was in so much pain that I was literally holding her hands so tight that I was drawing blood. Her hands are all swollen now because of all that happened.
But like I said before thank goodness we went to the surgeon when I did because if I didn’t I probably would have died. The surgeon was on the phone constantly with the Cleveland Clinic because he of course needed their input since they are in charge of my condition and I am going to be undergoing massive surgery with them. The Cleveland Clinic said that with all the toxins and poisons going through my body because of my failed GI system and such, I am lucky that I am alive still.
Due to my failed GI system, I have all these toxins and bacteria leaking from my GI system (especially my colon) into my bloodstream and it is spreading to all my organs including my brain. As a result, it is literally poisoning my body and causing me to die. That is why I need the transplant surgery at the Cleveland Clinic as soon as possible. We have to stop these toxins from poisoning my body because it will end up killing me. That is the reason why my brain is “foggy” and why I am sleeping a lot.
So to have this active infection on top of being poisoned by this bacteria and toxins that were already occurring, I am in really bad shape. They immediately wanted to put me on high dose meds in order to help contain the infection. Yet, with all the meds that I am already taking, it was extremely difficult to do. I take over 50 pills daily and it was very difficult to find a drug that wouldn’t interact with the others. They also needed to give me pain meds as well, as the current pain meds that I was already taking weren’t cutting it. So the surgeon has been talking to all my doctors trying to figure everything out. What a problem!!
A bigger problem though is this infection and how close we are to transplant, as I am supposed to be going in the morning to Cleveland Clinic for pre-surgical testing and to finish meeting with everyone so that I can be prepped for the upcoming massive surgery on August 25th. At that date, they will be removing my colon. It is a massive operation, which will take over at least 10 hours to complete. However, after the colon is removed, all bets are off as to what will end up happening. They don’t know if the colon is the bulk of the reasons why my body is being poisoned or if it is another part of the GI system that is causing it. Depending which organ it is… it will determine how soon I will have to undergo the huge multivisceral transplant. But they were hoping that I would be able to get my colon removed and they would be able to wait a bit to have the transplant so that they can try to get me a bit stronger for the transplant because it is a very dangerous transplant to have. They are also hoping to be able to wait a bit so that they can ‘learn’ all that they can about their ‘enemy,’ which is my neurological disease and autonomic dysfunction.
Like I stated in the previous message, my doctor wants to know his ‘enemy’ before he transplants. He is an excellent surgeon and wants to be prepared for anything that could happen. Therefore, has sent out other doctors to do research on my illness and he is even calling other doctors who are knowledgeable out of retirement. Doctors say that he is like a ‘terrier’ in the sense that once he gets his teeth into something, he doesn’t let go or stop until he gets what he wants.
It is really important to know all that he can about my illness because this transplant is so very dangerous. In fact, it is the most dangerous transplant to have and only 6 hospitals in the country do it. I need a new stomach, small and large intestine, pancreas, and spleen. However, if they find that the toxins and poisons are coming from something else after the colon is removed, I will have to transplant immediately.
After speaking with the Cleveland Clinic, they said that I would not be able to have the transplant or even the massive operation that I am scheduled for to remove the colon at the end of August. This surgery is extremely dangerous as it is and they expect to have lots of complications already as well as an extremely difficult time recovering from it as it is… they don’t need further complications. So the surgery might be cancelled unless I can overcome this infection.
This infection is very serious that I have in my mouth. The problem is also that I don’t absorb medications like a normal person. So despite being on a high dose, we don’t know how much I am actually absorbing. I can literally take pills and then 12 hours later when I vomit, I can throw up the entire pill in its “whole” form so it isn’t dissolved. In addition, I am extremely hypertensive so that any “minor” problem is a “huge” problem. I am not like a regular patient, as everything in my life is so much magnified.
So we are keeping our fingers crossed that this infection will go away and not stand in the way of the surgery. It is just another bump that is added in the road along with the funding bump that we have to get over. But in the meantime, we are heading in the morning to Cleveland Clinic to finish everything so that we are all prepared for the upcoming surgery that will hopefully be taking place the last week of August… providing that there is no infection and we have the funds.
So our flight leaves in the morning and it will be a busy 48 hours. We have so many doctors to still meet because since my case is so complicated, it takes an entire team in the operating room to handle it. They literally are going to have a doctor in every specialty in the room. I am also going to be meeting interventional radiologists because even they will be needed to put a central line in me for this surgery.
Besides meeting with the docs, I am also having some final tests performed so that they are fully prepared. Besides the usual tests such as the CT scans and x-rays, I am also going to undergo a stress test so they can really test my heart out. They already told me that I am going to hate this test because it is probably going to cause the autonomic dysfunction to stir up. Gosh… sometimes I think the autonomic dysfunction is the worst part of the entire disease.
What stinks is that I can’t eat or drink absolutely anything before these tests and I will be flying on a plane! I don’t know how I am going to manage especially not drinking when I am going to be in the air. The tests aren’t until 2 PM and therefore, I am literally going the entire day without eating or drinking especially since I am going to be leaving for the airport at 4 AM. Gosh… I am going to be dying of thirst and hunger. Some might think it is no big deal because I can’t really ‘eat’ or ‘drink’ anyway. But it is a big deal for me because even though I really can’t eat or drink because swallowing is extremely difficult and I also vomit it back up, at least I get something into me. Now I can’t get ANYTHING into me. I always find that when you are told you can’t have something, you are always more thirsty and hungry than if you weren’t told you couldn’t have it.
So we are off. Just wanted to let you know the latest! At least I know when I get there, my SNUFFLES will be there waiting for me. There is a white SNUFFLES being sent there thanks to my mom. Even though she can’t be there in person… she is sending me a bear so that I can always have something to hug. This way whenever I need a ‘hug’ from her, I can hug the bear.
I am in love with GUND bears and I am in the process of collecting all the different GUND SNUFFLES. I love the SNUFFLES because besides them being extra cute, they make such great “cuddlers”. With my stomach beign the way it is… they are in the perfect shape and are made in the perfect way to hold so that it helps with the stomach pain. I only wish I still had my original SNUFFLES. The SNUFFLES today is celebrating the 30 year anniversary.
In addition, I wonder if I am going to see another one of those “waterbugs!” Gosh… I will never forget how I was walking out of the hotel when we were leaving for the airport and one of those things ran right in front of me. It scared me so much. I never saw a bug that big! Of course I had to take a picture of it and show my dad. My dad being the expert that he is in pest control told me immediately what it was!
I can just imagine how much this trip is going to cost this time. With all these doctor appointments and tests… I don’t know how we are going to afford it and then be able to come back about week later for the huge surgery, which will entail us being in Cleveland for at least 3 weeks. That is why it is imperative that I get as many donations as possible because we cannot afford it by ourselves. So please continue to spread the word of my website at http://www.gofundme.com/FallonMirsky so that I can receive as many donations as possible. Remember… no donation is ever too small.
Please continue to pray for me because I am going to need all the prayers and support to overcome this. I need to be stronger than ever because I have to beat this infection now too!
Thanks again for everything.