I just wanted to update on the latest that is happening. The call came in today that the doctor in California wants to see me on May 13th! This is amazing news because this doctor literally had no appointments for months. However, due to my circumstances and how badly I am doing, he made special arrangements and made a special opening for me.
There are not many specialists that are knowledgeable about my condition in the world… let alone in the United States. However, there was this one doctor in California at the Cedar-Sinai Hospital that is supposed to be very knowledgeable in dismotility and in severe gastroparesis. As I am suffering from severe autonomic dysfunction and severe Gastroparesis, I need help desperately because I can’t eat and my entire GI system is completely “dead!” I only weigh in the 60s and have a BMI that is less than 10.8, which is unheard of. I suffer from more specifically from Intestinal pseudo-obstruction (a form of Gastroparesis), which is a rare condition with symptoms that resemble those caused by a blockage, or obstruction, of the intestines, also called the bowel. However, there is actually no blockage that really exists. Instead, the symptoms are due to nerve or muscle problems that affect the movement of food, fluid, and air through the intestines. It is a result of my severe autonomic dysfunction and severe reflex sympathetic dystrophy. These illness cause problems with nerves, muscles, and/or interstitial cells of Cajal. Interstitial cells of Cajal are called “pacemaker” cells because they set the pace of intestinal contractions. These cells convey messages from nerves to muscles, and problems with nerves, muscles, or interstitial cells of Cajal prevent normal contractions of the intestines and cause problems with the movement of food, fluid, and air through the intestines.
This condition is very serious and very uncomfortable. It causes abdominal swelling or bloating, abdominal pain, nausea, vomiting, and constipation. There are so many times that I walk around feeling and looking like I am pregnant. I also feel so full of air at times that I wish that someone would take a pin and pop me like a balloon. Over time, the condition can cause malnutrition, bacterial overgrowth in the intestines, and weight loss. Malnutrition is extremely serious because the body is not getting the right amount of the vitamins, minerals, and other nutrients needed to maintain healthy tissues and organ function. That is why all my organs are failing ad why I am also having problems with my esophagus, stomach, bladder, etc.
We have been searching everywhere for help, but unfortunately there isn’t really a lot known about my illness nor are there a lot of specialists that are able to help me. I have had various types of treatment to try to combat this problem such as Nasogastric tubes, NJ tubes, TPN, enteral nutrition, parental nutrition, etc. but nothing has been successful. Not only do they not work, but they literally cause havoc in my body and cause other problems such as burning up my veins and further causing more autonomic dysfunction, which is intolerable. We even tried all different kinds of medications and even get medications that are not FDA approved and are forced to pay out-of-pocket for them totally since we have to get them overseas. I also have to take daily injections to help with this problem.
Due to my condition, I cannot go to the bathroom at all. I constantly feel constipated and I am constantly expelling mucous. The doctors are very worried that whatever inside me is “rotting” because the medications and whatever little food is remaining in my body cannot get out. So it just stays in my body and rots and the doctors are extremely fearful that it is going to lead to one massive infection. I take numerous laxatives from everything from 6 colasces, 6 senokots, 8 ducolaxes, etc. daily along with injections, but nothing works. We have tried enemas and even enema bags, but those don’t even work either. I have even shocked doctors and nurses when they can literally give me an enema bag that is as big as a big IV big with 1000 mL of solution and I still don’t go. But my organs are just so paralyzed that nothing works.
I am so blocked up that we are even having problems finding out where the bleeding is coming from. We also know that I am bleeding from somewhere in my GI tract, but the doctors are unable to figure exactly where it is coming from or what exactly is occurring because they can’t “empty” me out enough to do a colonoscopy. The doctors have tried to put an NG tube in me to pour the mixture “Go-litely” in me to empty my intestines and bowel, but unfortunately after only pouring in ¼ of a liter, the NG tube started to back up and the mixture started to come back out of my nose. Therefore, the tube had to be removed. So we are still trying to figure out exactly what is going on. We also know that due to the air and all the distensions that are occurring in my intestines, it is putting extra pressure on my organs and causing them to fail as well. The doctors are also fearing that the colon has also twisted because of the pressure, which is extremely dangerous.
I have tried everything and yet, I am continuing to deteriorate. As a result, the doctors have been talking about performing a multivisceral transplant, which would include getting a transplant of the stomach, small and large intestine, pancreas, and liver. It is extremely radical and dangerous, as it is the most dangerous transplant that you can have. Only 6 hospitals in the United States currently do it. We are hoping that we can try to avoid it by going to Mexico and having the radical ketamine Coma, but unfortunately that will cost us $100,000 and we cannot afford it by ourselves. Without the funds of course that treatment is not going to happen and therefore, we have to no other choice but to look for other options. Of course the ketamine Coma though would be the best course of action though because not only would it help hopefully with avoiding the transplant and help with the Gastroparesis, but it will help with the Reflex Sympathetic Dystrophy and severe Autonomic Dysfunction as well. In addition, I am on a whole array of drugs that are extremely potent and are enough to kill a horse. The doctors can’t believe honestly that someone my size can withstand all these drugs because a person that is 300 pounds would never be able to tolerate it. Yet, I am in so much pain and discomfort that I need them in order to someone function and make it through a day! I am on everything from ketamine to morphine, dilaudid, nucynta, methadone, etc. The goal of the Ketamine Coma in Mexico is not only to “cure” me of my illnesses, but to also take me off these medications as well because there is no way that I will be able to come off of them without being in the coma because I will go into severe withdrawal and have seizures and possibly die.
But right now I am seriously deteriorating and something needs to be done immediately or I am going to die. I can’t wait around much longer and do nothing while I wait for the funds for the ketamine Coma. Therefore, I need to take care of my GI tract because I am unable to eat or drink anything. I am only weighing in the 60s and any weight lost… even a single pound… is extremely critical. I can barely eat anything and even the littlest things that I have been surviving on such as the egg whites, ice cream, and ices are getting to be intolerable to get down anymore. We are really running out of options.
I really need help immediately. After speaking to this doctor in California, he had no appointments for a couple of months. I just love how when you are sick that there are always such long waiting lists to see a doctor. The doctor told me though that he would look over my records and see if he could see me sooner.
Well… I got the call today that sure enough he can. In fact, he can see me as soon as May 13th. The doctor wants to see me as soon as possible because he said that I am “not going to make it much longer.” He said that I am extremely ill and a time bomb that is going to detonate soon. So… it looks like we are heading to California on May 13th, as long as we have the funds to do so.
I desperately need to get to California but unfortunately; we can’t afford it by ourselves. It really hurts me to have to BEG for help because I was never like that. I was always on the other side… helping others. I would help others in any way that was needed. I always put others before myself. But now… the tables have turned and I am basically on all fours begging and pleading that someone will please help me because I am literally hanging on by a thread. It kills me that I have to plead and beg like this for help, but I am just so desperate. I hope you and others don’t mind that I am doing so… but I just don’t know what else to do. I don’t want to die. The only way I will be able to get to California for this much-needed appointment is if we have the funds. However, we can’t do it alone and therefore, I am hoping that you can help me raise the money so that I can get to California. Please spread word that help is needed along with my website. If you have any ideas on how to raise money or fundraise for this… I would really appreciate it and you can message me at Femirsky@gmail.com.
I am really excited to go to California because I know how desperately I need to go. There is nothing here for me in terms of doctors or treatments and I know that I really have no other choice but to go across the country to California. The only thing that I hate is that I have to travel all the way across the country because it will really take a toll on my frail and fragile body. I really don’t know how I am going to manage the trip because I honestly am getting too weak and sick to travel. It is getting to the point that I can barely get off the couch nowadays. I don’t know how I am going to withstand a trip across the country. Thank goodness I will have my dad traveling with me because he is my best friend and my superhero. He won’t let anything happen to me. But I know that this traveling will NOT be easy on me at all. I only wish that we wouldn’t have to stopover on the planes and travel the entire day because it takes a huge toll on me, but we all know those flights are the cheapest and we need to save as much money as we can. I just hope that this trip doesn’t kill me.
I have recently been blessed with 3 angels in my life. They are doing a movie that will be released hopefully in the next year or so and they not only asked me to do a part in their movie, but they also did a promotion for my fundraising site. They also are looking for ways to further fundraise money so that I can hopefully receive the much-needed lifesaving medical treatment that I desperately need. They are doing whatever they can in order to facilitate this, which includes contacting the media such as Channel 12, Fox, etc. I am only hoping that this will work out because I desperately need help and in this world it isn’t WHAT you know, it’s WHO you know and unfortunately I don’t know anyone. So despite how many times I have tried to contact them, I have not been successful because I have no connections whatsoever. More importantly, these 3 angels have entered my life and have become 3 friends that I have not had before and will hopefully stand beside me until the very end. They are also thinking seriously about coming with me to Mexico and filming the entire Ketamine Coma so that others can see exactly what is taking place since this treatment is extremely radical and rare… and not given within the United States. In fact, I will be the 38th person in the world to undergo this Ketamine Coma.
In addition, I really want to thank all the people who have contributed to making the charms and bracelets for me out of the rainbow loom. I can’t tell you how much it has meant to me. When I went on the computer today and saw that the moms from Massapequa had all those charms and everything… I couldn’t believe it. I really don’t know how I can thank you enough. I immediately showed my parents and I want you to know that they too are extremely grateful. They said, “For once they have seen a smile on my face that they haven’t seen in a very LONG time.”
I have lost everything in my life and to be quite honest with you… it is hard to smile anymore. There are so many times I wish I don’t wake up in the morning because I can’t take living this life anymore. However, I just want you to know that these bracelets and charms have brought “hope” and a smile finally back to my face. I am still hoping and praying in miracles. That is why I am trying to collect 1,000 rainbow loom charms and/or bracelets. I am doing so because I am doing it in the spirit of Sadako and the Thousand Paper Cranes. Even though they aren’t the paper cranes, I am still hoping that a miracle will take place when I get to 1000. I have had the worst luck and I am hoping that a miracle will occur with all of these bracelets and charms… just like a miracle was supposed to occur with the paper cranes. Maybe my miracle is on its way. I do find it awfully weird that the same exact day that these looms were told that they were on their way that I got the good news that the doctor in California wants to see me ASAP.
I haven’t received a gift (not even a holiday or birthday gift) in the longest time… so I can’t tell you how much receiving a gift like these charms means. In addition, when I am in the hospital… it is such a scary and lonely place and when I look at all the charms… I feel so loved and special. I really feel like I have support with these charms and bracelets and that I am not ALONE in this battle. If it wasn’t for the support of others… I don’t think I would have made it even this far.
On a better note, I have recently joined TWITTER. I finally woke up and joined Twitter, but have no idea what on earth that I am doing. All these symbols like “@, #, etc.”… I have no clue what they mean. I guess I am going to have to learn. All I know is that my name is @FallonMirsky and if you follow me it will be some interesting journey. I guess I finally came out of the dinosaur age!
To try to make me feel better, I recently tried putting on some new makeup. I have a way of thinking that if you “look good” you “feel” good. So I tried to make myself look as good as possible lately to see if I could possibly be stronger and everything. I have always been an avid makeup person. That is why when people see me they don’t realize how much I truly am suffering because I conceal it so much. I don’t cry in public nor do I walk around like I am “sick!” I try to look as normal as possible and try to look my best. After all… even though I am sick… I still want to be beautiful (even though it is getting harder and harder). But I must say that I did get this new makeup that really is working wonders!!
Thanks again for all your continued support. I really can’t thank you enough. Until next time!!