I know I just wrote yesterday, but I went to the doctor today and I just wanted to share some very important information that happened today. I knew that I needed treatment desperately and it was urgent, but when I went to the doctor today, he really made sure that we knew how important it was that I got the treatment that I needed like NOW! He made it known how I was I going to die without the treatment and how I am so sick that I am basically at the point where I can die at any moment. He said that he “never saw anyone as sick as I was!” I have been told this for a while, but for some reason, today was different. Never before did I have a doctor make it known of his thoughts and he wanted to make sure that both my dad and I thoroughly understood exactly what was going on and how we both knew how serious this situation was. It was as if this doctor thought that we were not taking this matter seriously.
We know how serious this matter is and my dad and I are quite aware of the fact that I am going to die without treatment. We know how sick I am and we know that treatment is very important and desperately need. But unfortunately, nothing is “free” in this world and therefore, we have been not able to receive the treatment that I desperately need to save my life. We have tried so many different ways, but every method that we have tried to raise money, it just hasn’t been as successful as we would have liked.
I want to get better more than anything in the world. I have so much to give to the world and I really want my life back. I have so many plans for when I get better such as to go back to being a doctor so that I can help others. Doctors don’t realize what it is like to know that there is a light at the end of the tunnel but it is unable to be reached. Everytime I try to get out of this dark and never-ending tunnel, I always end up hitting brick walls. I hate how if I ever come across something that can potentially help me, I can never get it because it costs too much money or there is another reason that is standing in the way. It is like holding a dog bone in front of a dog and watching the dog salivate. You keep teasing the dog with it and telling the dog that she can have it, but then you won’t give it to her. You know?
Doctors have been telling my dad and me that I am “dying” and not going to make it much longer for a while. It has been said that I am a “time bomb and now I am officially detonating.” However, no matter how many times we have been told this… there really isn’t anything that has been done or can be done because what needs to be done of course costs money, which is something that we are lacking. I desperately need treatment and I am really weakening and deteriorating. However, when I went to the doctor today… it all hit home.
The doctor told us that he is going to be quite frank with us. He said that he never saw anyone as “sick” as I am and that I desperately need help like NOW or I am going to die. He said that I don’t have a lot of time left and he also wanted to know if any of my other doctors ever told my dad and me that I am doing so badly and going to die. He thought maybe we were just not aware of this stupid little fact, but how could we not be? Of course we are aware of it. So we told him that we have been told numerous times that I am very sick and that I am going to die and such, but of course this doc went much further in his thinking. He actually told my dad and me exactly what was on his mind.
The doctor told us that I really need to get treatment NOW or I am going to die. When we tried to tell him about how we have been trying to do that and we have been trying to get the treatment to save my life, but there isn’t any money, the doctor said, “there has to be another way because you don’t have the time to wait around anymore.” He told us how basically the medical field has failed me and how I desperately need to find a way to save my life because I am no easy case. Of course it is easier for him to say because he doesn’t have to foot the bill over at the end of the day. You know? But he said that I am so sick and not only do I need help, but I need rapid detox off some of my meds because it is also further contributing to the decline of my health and shutting down my organs. He said that I desperately need this rapid detox to get off some of these meds because I can’t get off of them any other way. The only problem though is that of course it is illegal in New York and of course it isn’t covered by insurance.
It turns out that some of the meds that I am on are really causing me a lot of problems and further causing my organs to shut down. We have known this for a while, but we can’t really come off the drugs because I am so dependent on them and I also suffer from severe autonomic dysfunction. If I were to come off any of the drugs, it would really kill me… and I am not joking about that. There is no way that my body would be able to handle that. My body would go into severe withdrawal and it wouldn’t be able to handle it with the autonomic dysfunction. I would have severe seizures, other problems, go into comas, and even die. We have even tried to lower the meds in the past, so I know for a fact that this isn’t just words. I know that my body will literally go into chaos if this were to happen. We even tried to lower just one of my meds 30 mg and it caused such severe problems that I almost died from at one time. I also have to be extremely careful when taking my meds because if I miss a dose, I can easily feel it and it also causes my body to go into extreme autonomic dysfunction, which can also cause me to go into seizures, comas, and death. It is something that is really uncomfortable, scary, and something that I can’t afford to happen. Sometimes I think that this autonomic dysfunction is the worst part of my entire illness.
The doctor said to us that he never saw someone that was on so many meds. Well… what did he expect? I am sick. I take more medication that can kill a horse. That is why doctors are surprised that my body can handle all the pills that I take because I take over 50 pills daily. A grown man that weighs 200 pills probably wouldn’t be able to handle the amount of medication that I take. I take so much medication because my illness is so severe. They say that I am one of the worst cases to exist and that is why treatment is so imperative and that is why I am going to be hopefully the 38th patient to undergo that Ketamine coma in Mexico, which is reserved for the very worst cases. However, I also take a lot of medications because I have severe gastroparesis and therefore, not all the meds are even absorbed. There are plenty of times that I take my meds in the morning and then I throw up over 12 hours later and I can literally bring my pills to my father in a cup not dissolved because of the extreme gastroparesis. So essentially they aren’t working if they aren’t dissolved. So even though I am taking all those pills, who actually knows what is working and what is not. You know? Plus, the doctors think that I have a liver that metabolizes the mediation extremely fast and therefore I am able to tolerate the high doses.
But in either case… I am on a lot of medication and it isn’t good. I take a lot of potent medication such as ketamine, dilaudid, methadone, morphine, etc. So they really want me to get off of it or at least come off a lot of it because they are also not good for my body and are also contributing to shutting my body and organs down. So not only is my illness killing me, but so are these meds. I also need treatment of course for my illness like the ketamine coma and the removal of the colon and the transplant, which will all work better when I am off the medications. They also don’t want to ruin all the stuff that these treatments are going to correct by taking these meds. So they are really hoping that I would be able to come off some of these meds so that it won’t occur in that way. You know?
But like I said before, it isn’t an easy answer. I can’t just come off of them or “wean” myself off. It just isn’t possible. So the only way possible is to have rapid detox, which is not only expensive, but it is also illegal in New York. It is legal in so many other states, but of course it is not legal in New York. You would think that it would be legal in New York especially with New York having such top name hospitals and such. But of course that isn’t the case. So not only do we have to find a place to do it, but also we have to find a way of affording it. Luckily, it can be done at the time I go for the coma in Mexico or it can also be done in California. So thankfully I do have places to go to. However, that doesn’t eliminate the cost of this treatment though.
This rapid detox is extremely expensive. Of course the insurance doesn’t pay for it. Insurance stinks. You can’t live with it and you can’t live without it. So… I don’t know how on earth I am going to even be able to afford this treatment because I can’t even raise enough money to pay for the other treatments, medications, medical expenses, etc. You know? But this is really urgent and extremely important that I do it. I really need this to happen or I am going to die. However, it isn’t cheap. It is like over $20,000.
I love how doctors tell you that you need certain stuff done and then they are no help in giving it to you. Not only can’t they give it to you because it is not ‘allowed’ in the state, but they have to deliver the bad news that it is so expensive and not covered by insurance. Why can’t all doctors be like Patch Adams? Remember that movie? Why can’t people do things out of the goodness of their heart? Why does money have to play such a crucial role? Sometimes I wonder what this world would really be like if money wasn’t to exist.
I have to admit though that I am really fascinated with this procedure. Even though it is extremely critical and risky because it entails putting me into a deep coma for a few days, intubating me, and taking me off all those drugs that my body is so dependent on… I am really fascinated with it. It is amazing how this procedure can literally make me technically all better. It can make it so that I don’t feel any of the withdrawal affects. It will make it so that I won’t have risk dying by coming off the medications because my body won’t go haywire.
But the mechanism that it does do to perform the “detox” is really something else. They said that during the detox that I will be given another drug called Naltrexone. This drug will bind to all the receptors that the other drugs that we don’t want in my body usually binds to and as a result, it won’t allow for any of those other drugs to no longer bind to them. Therefore, if I were to take any of those drugs again, there would be no receptors for them to bind with since the Naltrexone would be already bonded with them and therefore, it would essentially be like taking water. Those drugs would basically do absolutely nothing to me and pour right out of my body. However, the Naltrexone only works for about 1 month and therefore, it has to be injected monthly. I will have to be in the coma for some time until all the medication that we don’t want in my body and don’t want my body addicted to is out of my system. We have to wait for all the half-lives of those meds to be done. Unfortunately though, some of the meds do have a long half-life. For example, Methadone has a 24 hour half life and therefore I will have to be in the coma for a couple of days in order to have that drug completely out of my body and for this detox to work and be completely effective. That is also why this will cost so much money and such. You know?
So… we are hoping that perhaps this rapid detox can all be accomplished in California when we go down at the end of July for the exploratory surgery and presurgical testing that will be all in preparation for the huge surgery that will be taking place about 2 weeks later, which will entail removing the colon. We are also wondering if it can’t be done at that time, if it can be done when I have the colon removed on the next visit. But of course it is dependent if we have the funds and therefore, I am hoping that there will be a way to raise the money. If you can think of any way possible to raise the money, please let me know. Please also continue to spread word of my site for donations because I desperately need this rapid detox and I definitely won’t be able to afford it and have it done without the help of others. So please remember to tell others about http://www.gofundme.com/FallonMirsky.
In the meantime, we are awaiting to hear from the surgeon to make sure everything is finalized for the trip at the end of the month for the presurgical test and for the exploratory surgery, which is all needed in preparation for the removal of the colon that is taking place 2 weeks later. I am scheduled to have the exploratory surgery to map out the colon and to finalize things on July 28th, but the doctor is working on putting me as an inpatient the day before because it is impossible for me to prep for the procedure as an outpatient. Not only can’t I prep for it because I can’t drink the liquid, my bloods are not good and dehydration is a problem. Therefore, it is extremely risky to prep for this procedure as an outpatient and it is much safer to do it under supervision. The doctor also wants to give me ketamine before the procedure and after the procedure to make sure that the illness doesn’t spread. So there is a lot that needs to be done.
In addition, we were thinking that if I were to have to spend the night in the hospital, my dad and I were thinking about maybe flying into California that day and then going directly to the hospital to be admitted. We were also thinking about just keeping everything at the hospital with us like our suitcases and everything instead of checking into the hotel room because my dad would spend the night with me in the hospital and this way we possibly can save money because we wouldn’t spend money on a hotel room for those nights. Of course it would be much better to fly the day before so that we can check into the hospital bright and early in the morning and have the entire day for preparation for the procedure, but we are trying to avoid paying for extra hotel stays that we can avoid. Also… we figured that if my dad could spend the night at the hospital with me and he was going to have to do so anyway because I need help, then perhaps we can also save a night’s stay at the hotel. So we will have to see.
I have surgery on Friday to be cleaned out and boy… I am counting down until I am going. I am so uncomfortable and I can’t wait to get the blockage taken out. My colon is literally dead and therefore, I have been going every Friday for surgery. My GI doc literally goes into my colon and as he says, he removes the ‘schmutz’ from my colon. You can’t imagine how much more comfortable that I feel afterwards. Not only does he do it so that I am more comfortable, but he does it so that we can hopefully avoid my colon from perforating or rupturing since nothing moves through. The doctors are also afraid that I am going to go into ‘sepsis’ since nothing moves through and as a result things end up fermenting and rotting inside.
Well… that appears to be everything. Just wanted to share the newest info. Thank you again for all your support and encouragement. Again, if you can please think of a way of raising money, please contact me at Femirsky@gmail.com. Please continue to pray for me because I need all the prayers that I can get.