This isn’t going to be very long, but I just wanted to wish you a very HAPPY and HEALTHY New Year and a very wonderful and successful 2014. This is the very first blog of 2014, which I am hoping is the start to a great year… a year that I will be able to tell you of wonderful and interesting information instead of the same old information of how “horrible” I am doing. I am hoping this will be the year that I will be able to say that a MIRACLE has happened and I am better instead of sounding like a broken record already by always saying how “horrible” I am doing and always saying how I am “deteriorating.” I am only hoping that this year is not a great and wonderful year for me, but one for you as well.
I tried to have 2014 start out on the right foot right from the beginning. I have been extremely ill… especially tonight. I really need to have something done and something done fast because to tell you the truth… I am really deteriorating. I don’t know how much longer I can honestly hang on. I am barely hanging on by a thread.
I am so very weak. I can barely keep my head up and I barely can get off the couch or out of bed. I do have my VERY FEW good moments and I try to take advantage of them as much as I can, but on the hold… I am so incapacitated. I spend the bulk of the day and night on the couch or in bed screaming and crying because the pain is just beyond belief. I ache from the very core of my body and the center of my bones to the surface of my skin. It is nonstop!
Not only is the pain out of control, but also so is my stomach and Gastroparesis. I can barely eat anything and I can’t even go to the bathroom at anymore. It is at the point that barely anything comes out and if I am lucky (and only if I am lucky)… I will get some mucous. It is so foul smelling and smelling like rotten eggs because nothing is moving. The doctors are worried that I am going to go into Sepsis or something because the food and drugs that I am taking in are just “rotting” and “fermenting” in my body instead of leaving, as they should. It is also getting to the point where my intestines are getting so “weak” that they don’t even want to “push” anything through. Therefore, it is even harder to go to the bathroom because I have lost that “Pushing” and “contracting” feeling. Whereas I used to be able to push and contract my intestines to try to eliminate the wastes even though nothing would come out because there would feel as if there were a blockage, I now don’t even have that ability anymore.
In addition, I lay on the couch in a curled up ball because my stomach hurts so badly and is so bloated. I can’t eat or drink anything at all because even though I am dying of thirst, the little amount I do drinks only bloats me further. I literally look at times like I am 9 months pregnant and all I can do is hope and pray that someone “pops” me.
I am also having extremely hard time breathing. I am aspirating like crazy. I am drowning in my own fluids. Therefore, even the littlest amount I do drink is causing even more breathing problems because it is going directly into my lungs. The doctor said it is really bad if I am aspirating when I am “awake” and sitting up because usually people only aspirate when they are sleeping or lying down. They are blaming a lot on the failed GI tract, but whatever the cause is… the fact is that unless something is done… I am going to drown in my fluids because I can’t breathe. All you hear is “gurgling”. In addition, I am starting to go through the exact feelings that I went through with my intestines in that I can know longer have the energy and ability to contract my lungs and actually “breathe.” Just as I explained earlier in how that they are so weak that I can’t even contract my intestines anymore to push things through in order to go to the bathroom and eliminate things, it is getting to the point that I am feeling too weak in the lungs now too to get them to “squeeze” and “breathe!” It is really freaking me out because the exact same feelings I went through with the intestines in how they felt really “weak” and it ended up with not being able to push them anymore at all… that is what I am feeling now with my lungs. So I am really afraid that if something is not done fast… I am not going to be able to breath soon especially since it’s getting so bad so fast!
To make matters even worse, my heart isn’t doing well either. I went for my bloods the other day and like always… they have fell. I got the call from the doctor that the bloods have fallen again and I desperately need to go to the Hospital for a transfusion. No longer are my bloods even listed in just “out of range” anymore but they are listed in the extremely “critical” values. I know that I am really walking a dangerous line with those bloods, as I can easily have an arrhythmia and cardiac arrest, but I don’t go to the hospital because there really isn’t anything that they can do around here. The truth of the matter is that I need to go to a hospital like John Hopkins or even to Mexico where they can handle me because not only do I need a transfusion that will stir up my entire disease and I need to be in a hospital that will be able to handle my entire disease (which very few hospitals are able to), but I need to be in a hospital that can correct the issues as well because otherwise it will just be a merry-go-round back to the hospital because there are underlying issues causing these problems. The hospitals around here are unable to handle me and they have even discharged me in the past even when they have acknowledged how “sick” I am because they say that they can’t “help” me because they can’t “handle” my situation. I am extremely complicated and I need to be in a hospital that is able to give me the care that I need. Unfortunately there aren’t hospitals around here that can do that. So… not only does it mean that I have to worry about traveling to the hospital and having my dad away from work and such, but I have to worry about expenses as well. There are so many burdens that come along with this disease… and one of the worse burdens is the financial burden.
I spent the last day of 2013 having a ketamine coma/infusion. With everything happening, at least I was able to “sleep” the day away and it was a way of “peacefully” ending 2013 even when the year was such “HELL” for me because at least when I am under ketamine… nothing bothers me. If I can remain under ketamine 24/7… I think I would. The doctor gave me an all-time high of the amount of ketamine today. He gave me 200 mg per hour. When he told me how much he was going to give me, I was a bit hesitant because I knew that was a lot. I was scared a bit because I never had ketamine at that amount. But when I asked the doctor about if he was “sure it was safe and ok?” he said, “When I go for the ketamine in Mexico, it will be much higher.” But the difference is that when I go for the ketamine in Mexico, I will be fully on breathing machines and other machines to keep me alive, which is not occurring today. So I was afraid that the amount of ketamine that my body today would not be able to support the amount of ketamine that I was given today. But he told me now to worry.
The ketamine that I was given today was extremely strong. My dad said he never saw me so deep into a “sleep” before. He said that I was making the weirdest noises when I was breathing, as I was making these very deep “snoring” noises. My dad said that I looked like I was gasping for air, as if I couldn’t breathe. I was told that not only was my dad getting worried, but so was the doctor. It appeared that the ketamine was a really heavy amount and it really suppressed body. My dad couldn’t wait for me to awaken because of how “out of it” I was.
Not only did we run into that complication that the ketamine was too heavy of a dose and it was suppressing me into a really deep sleep and such, but I ended up waking up when the infusion was only halfway through. I ended up kinking the line somehow and therefore I woke up because the infusion had stopped. Yet, when the doctor realized the half the ketamine had not entered my body, they had to knock me out again to put in the remaining half of the bag. What a day!
The truth is that I really need to get to Mexico. I need to get to Mexico in more ways than I can tell you. In fact, that is my New Years wish. I am doing so horrible. Mexico is like the ONLY place that can help me to tell you the truth because that is the ONLY place that can give me the amount of ketamine that I need to hopefully put this illness in remission.
This coma in Mexico is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer. Patients are supported by a ventilator and monitored in the ICU. So far, only about 100 patients have underwent this coma. For many, it has been miraculous! However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition. Yet, it continues to be my only hope because there are really no other options available, and unless something is done soon, I will die.
Yes, going to Mexico and having this intensive ketamine coma is a radical and scary treatment, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself. !! I have lost even the simple things in life that people take for granted… eating, walking, taking showers, even having that three letter word known as FUN. I think that everyone in this world should know about my disease in the same way that they know what cancer or AIDS are.
I have been in constant contact with the doctor who is supposed to be doing the coma, and he is a really nice doctor. Even though he is Mexican and I will be in Mexico, he does speak English and extremely helpful. I was a bit scared about going because my dad and I barely speak any Spanish whatsoever, but the doctor has been really helpful in helping us in understanding everything that we need to do and getting things done. He even said that he would make sure that he would make sure that my dad understands everything that is happening when I am in the coma and he would be fully in the picture on every aspect.
This doctor really seems like one amazing doctor. He even gave me his cell phone number, which is very out of the norm for a doctor. It is so weird when I call him because everything is in Spanish… even him when he answers the phone. However, when he hears my voice and I tell him it is me, he then of course changes to fluent English. However, until he changes, I have no idea what is said. I have no idea what the messages are being said if I do incur any because sometimes I reach an answering service and I also call the hospital and the calling card. I guess I better start brushing up on my Spanish if I am going to end up going.
The truth is that I need to get to Mexico ASAP. In fact, I was just telling my dad tonight that I need to get to a hospital because I am going to die soon. I am barely hanging on and I need help. But the truth is that I can go to any hospital, but the only place that really potentially help me is going to Mexico because only that intensive ketamine coma can really hopefully “cure” me of this Hell of a disease. Doctors have once said that if “HELL was a clinical medical condition, it would be known as my illness.” Everything basically stems from the neurological condition and autonomic dysfunction. In fact, they are saying that this ketamine coma not only can “cure” me of this neurological condition and autonomic dysfunction, but it can also cure me of the severe Gastroparesis as well. They said that they had patients who couldn’t eat for years are able to eat again. In fact, the doctor even said that he would definitely choose this risky and radical ketamine coma over going for that multivisceral transplant that the doctors want to do if I don’t get to Mexico because that transplant is the most dangerous kind of transplant that you can have. This doctor really feels strongly that even though this ketamine coma is radical and risky, it is very hopeful that it can make a huge difference and “cure’ me. It can be the great answer we have been looking for. He said that I need ASAP.
The doctor says that this ketamine coma really can make this whole entire disease go into remission. He said though that I will have to have the support of friends and family especially after the coma though because this procedure is so powerful that not only does it “reboot” your entire body and essentially wipes out your nervous system and “resets” your body, but you have to actually relearn everything. You have to relearn how to use your entire body and therefore, I will really need the help of friends and family. So I am really hoping that this coma can really make me a “Changed” person and leave this old life in the past. I can’t wait to be able to start anew and have a fresh start on life again. I can’t wait to be able to enjoy all the stuff that life has to offer and be able to achieve all that I ever wanted to do and was robbed of such as become that doctor that I dreamed of becoming.
Yet some things stand in our way. First…one of the major things is that we can’t get out of the country without passports. Since my father and I never really have been out of the country, we had to get passports issued. We immediately went to get them issued, but of course they couldn’t be done overnight. We couldn’t believe the cost of getting them, but we had no other choice but to pay the high price of them. Even the cost of getting them sent regular mail, which took 4-6 weeks, was astronomical. To have it sent “regular” mail they wanted $180 per passport and then to have it rushed to 2-4 weeks, they wanted an additional $60 per ticket, which would mean it would cost “$480.” Of course we couldn’t afford that amount, as we are having even a problem even managing coming up with the “regular price” of $360. To make matters worse, they didn’t even take credit cards, so we had to even have the money up front. So… we are hoping that the passports will come as soon as possible and as close to 4 weeks as possible even though they allot 4-6 weeks. I just don’t know how long I can manage, so I am hoping it is soon.
In the meantime, it will give us time to get money to pay for the trip. This is another HUGE problem. The coma will cost OVER $50,000, which is something that I definitely can’t afford without the help of others. I desperately need help from people, so if anyone can think of any way of raising funds, please let me know. My life literally depends on this. I am rapidly deteriorating and desperately need it. I have tried to contact the media, post on Facebook, make posters, asked to spread my link, etc. but nothing really has been successful. The truth is that I need help from you. I know when you go to my “gofundme.com” site, it looks like I might have raised a lot of money, but the truth of the matter is that I raised all that over the course of nearly 2 years and as a result, it was really like raising nothing because the amount that was spent during that time far outweighed that amount. So even though it did make a difference and was extremely helpful in paying for things and much appreciative, it didn’t make much of a difference as you might be thinking and it isn’t where this money is still available to have to put towards Mexico. You know? So if you can please help me in anyway possible… please do. My website is www.Gofundme.com/FallonMirsky.
In the meantime, my dad and I are supposed to be leaving on Sunday for John Hopkins Hospital in Maryland. I am supposed to be going to see my team of doctors there. I desperately need to see them because of how bad things have gotten. Plus, this is my last and basically only option that I have if I can’t get to Mexico. If I can’t get to Mexico to have that really intensive ketamine coma to help things, I need to take other actions. I definitely can’t last the way that I am doing now. I might even be forced to undergo that multivisceral transplant that is very dangerous because I just don’t have many other options.
When we go to Maryland, we are supposed to be seeing not only my team of doctors who have been caring for me, but a new GI doctor who is supposed to be the GURU of Gastroparesis. He is supposed to be one of the best in the nation. I am really hoping that he can help me. Everyone seems to know of him, as when I was talking to my doctors in California, they wanted me to see him as well.
However, we also run the problem of the financial problem with this trip as well. Like I said before, I desperately need your help because we can’t basically afford anything. I don’t mean to sound like a broken record, but that is the truth. I never thought that I would ever be writing about this, but the weeks that we have food on the table, I actually feel “lucky” and “fortunate” because there are so many weeks where we cant even afford that. We have been having so many troubles paying our bills… including our mortgage. We honestly are at our wits because despite all the cuts that we have made (even cuts that had to be made in my treatments and have caused me to suffer more), we just keep getting deeper and deeper into a hole.
Even though we are scheduled to go to HOPKINS this Sunday, we really don’t know 100% sure if we are going. I am hoping that we are going to be able to go because I am suffering so much and I also need to see those doctors, but like I said above, we are having these financial issues and we don’t know if we are going to have the funds necessary to pay for this trip. As it is, we already had trouble with the plane tickets to even get to HOPKINS. I had discounted plane tickets that expired the last day of 2013, and the airline refused to extend them for one more week. Can you believe that I was just one week short? Anyway, I ended up having to pay an extra $250 in order to be able to still use those tickets and it wasn’t like we really had that money to do that with. Luckily, we recently received a donation that at least covered that part. So now all we have to do is worry about the rest of the trip, which is still plenty because we still have hotel, doctor bills, food, car rental, hospital, etc. It just never ends. But at least this donation got us there.
I just hope that I get the tickets in time for the trip too. In fact, in order for the tickets to be reissued, I had to literally send back the old ones along with the money so that they can reissue me the correct tickets. I immediately sent them overnight mail, which of course ended up costing me even more money because overnight mail is so expensive, but I had not other choice. So the airline should have received it Saturday. Even though they don’t work on Saturday, they would have it on Monday when they opened and therefore they hopefully could work on it right away. I also sent along a letter explaining how URGENT this was that they did it ASAP and also asked them to not process the check that I sent them because I really needed the money because of the medical treatment that I desperately needed and couldn’t afford. I am only hoping that they will find it in their hearts to acknowledge my letter and refund me my check and issue me the tickets without taking the money, but I doubt very much that will happen. After all, this is the 21st century and people care more about the green dollar than a person’s life. I am just hoping that that they will at least listen to my letter and at least listen to my request about sending my tickets back to me as soon as possible and with overnight mail because I desperately need the tickets back by Saturday at the very latest. It doesn’t give them very much time, especially when there is no mail and no one working today because it is New Years. But I am keeping my fingers crossed that it will all work out.
Well like I said in the beginning of the letter… today is New Years. I was fortunate to be able to celebrate it with my parents. Maybe this year will be better because the year 2013 had the number “13” in it and we all know how unlucky “13” is. Maybe that was why I had all this bad luck this year? So… that only gives me more reason to be more optimistic that 2014 is going to be a much better year!
I only hope that 2014 is good for my parents as well. They certainly deserve it. We all wished at one time or another that our parents were cooler. Well, how much cooler can parents get than superheroes? Well… my dad is MY superhero. Not only does my dad me everyday lessons—cover your mouth when you cough, wear your seatbelt, etc.—but his real hero work may be saving me from the utter darkness and Hell of this disease which consumes me. My dad always makes me feel better when I am sick. He always tries to wipe the tears from my face, and always tries to do trick to make me smile. Even when I was little, he used to buy me toys and played with me acting like one of those powerful superheroes. As far as he is concerned, I am his “little” girl and does whatever he can to “protect” me and bring whatever happiness he can into my life.
There is nothing that my dad wouldn’t do for me. He wants me well more than anyone I know… maybe even me. I only wish I can grant him that wish. I can’t wait to be able to be well so that I can be that doctor that I so dream to be and so that my dad can see me become that doctor as well with that white coat. I can only dream of that day! I only wish and pray that day will only happen. I feel so bad because he runs himself ragged because he is trying to do everything that he can in order to provide whatever he possibly can for me. He gets up at 3 AM and is out the door by 4 AM to go to work. Then he doesn’t come home to nearly 7 PM. Complicate all that by taking care of me, taking me to doctors, and taking care of the home… he really is a superhero. I only fear that he will run out of his power. I see the pain in his eyes though all the time because he knows that even though as much as he is trying to help and change things, his hands are tied. He keeps saying that “I am not going to let you die,” but the truth of the matter is that he isn’t in control. If he could help it… I would be having every treatment in the world and I would be in Mexico undergoing that coma right now. But unfortunately it kills him that he can’t provide that for me. I am only hoping that nothing happens to me because my father will never get over it. We have such a special bond and everyone that knows us even says that if something happens to me, my dad would never get over it.
My mom is also very special to me. She always knows where the hurt is and knows how to make it go away. Even though she doesn’t come along with my dad and me on our trips, she is never far because we constantly talk to her on the phone. I only wish that she could come with us as well, but unfortunately someone has to stay behind and take care of the house and business to a point. Plus, we have a hard enough time affording my dad and me to be able to go… it is even harder to have her go with us as well. But even though she may not be with us, she is always calling and making sure that things are being done.
Even though it is so difficult to eat and such, it is my mom who is always trying new and innovative ways to get me to eat. She and I lately have been making this new butternut squash. I love cooking with her and I love being with her.
So I was so glad I got to celebrate the start of the New Year with the people I love most. Even though I was too weak to stay up the entire night until the ball dropped, my parents made sure that I was with them by 11:30 when the ball dropped. My dad came into my room and carried me into the room so that I could be with them when the ball came down. It was really nice of them to want me to be with them to start the New Year with and I felt so special that they wanted to wake me up and bring me into their room so that they could have me with them when it happened. So the last half-hour of 2013 and the start of 2014 were spent in my mom and dad’s bed together including the dog. We watched the Miley Cyrus perform and the ball drop. Then when it was all over, my dad brought me back into bed by carrying me back. What a nice way to ring in 2014.
So I will let you know definitely what is happening before Sunday. I should have news about whether we are definitely heading to HOPKINS or not because it depends on the funds received and saved up, as well as if the tickets are received. I desperately need to go because I am so very sick. As it is my dad carries me all over the place because I am so very weak. I am also supposed to have a meeting with the doctor in Mexico on Friday to further finalize some more plans. So I will have more news regarding that matter as well. If all goes well, I hope to have the coma and be better for my birthday. From the looks of it… I will hopefully be spending my birthday in Mexico because my birthday is February 7th. That would be the BEST birthday present ever… the gift of getting better… a new body… and a new life! Wouldn’t that be wonderful!!
Just wanted to write and wish you a very HAPPY and HEALTHY New Year. I also wanted to bring you up-to-date on all that has been happening. I also want to please ask if you had any ideas or can you at least please spread the word that funds are desperately needed. I desperately need to receive treatment in Mexico and at Hopkins because my life literally depends on it. Not to sound like a broken record, but I am barely hanging on as of now. I am walking a tight rope and it is ready to snap at any moment. As it is… I am collapsing when I walk. Remember… the website is www.gofundme.com/FallonMirsky. If you can manage to do anything, I would really appreciate it. I also recently made up new cards to hand out. If you want cards sent to you so you can give them out as well, please email me at email@example.com and let me know.
Thanks for checking in & catching up! I am so thankful for all of the amazing people who continue to take this journey with me! Having your love, support and prayers mean the world to me! My prayer is that this year brings healing, peace and comfort for not only myself, but also for you. I won’t stop praying for the cure to be found soon – and I pray 2014 will be the year for it!
Please stay prayerful and hopeful!