I have wanted to write for a while now, but haven’t been well. Plus, a lot has been happening lately and I didn’t want to write anything until I was sure exactly what was happening. But not that everything seems to have “simmered” down in terms of what exactly is taking place and when, I thought I should inform you all that is happening because there is a great deal that has been occurring since the last time I posted anything.
It seems like the harder I try to overcome this illness… the faster I am deteriorating. I literally can’t catch a break. The doctors have always said that I was a “ticking time bomb waiting to go off” and guess what? The time seems to have come that the bomb is finally going off. I am freefalling basically and there seems to be no stopping this illness. Whereas before we tried “littler procedures, surgeries, and treatments” because they were cheaper, more affordable, and not as invasive… it appears now that unless we do the major treatment, which are the colon being removed and the transplant… I am not going to make it much longer. There is no guarantee that even with the colon being removed and the transplant that I will be able to “beat” this illness, but that is my best option. I need to have the colon removed and this transplant because the toxins that are being produced by the colon and GI system are literally poisoning my entire body and shutting down my organ including my heart and lungs. It is causing massive infections in my body that I can’t even fight anymore. Of course I also need that huge intensive ketamine coma (which will cost $100,000) for my neurological illness and autonomic dysfunction in Mexico because the amount of ketamine in the United States is not FDA approved, it is more important right now to deal with eliminating these massive infections that are raging in my body because they are going to kill me. I am at the point where I can’t fight anything and my body is shutting down because I can’t even absorb nutrients anymore.
My tightrope is basically snapping, and I am plunging to my death. I am basically drowning in debt and yet, I desperately need these surgeries in order to survive. That is why I desperately need your help. Unless something is done quickly and unless I get the colon removed and the transplant at the very least, I will not have to worry about anything else because I am honestly not going to last much longer. Yet, even to get the colon removed, I still need other surgeries prior to it in order to ‘prep’ me for the surgery and to make it successful because they have to make me as strong as possible to survive the surgery since it is one of the most dangerous surgeries a person can have and they also have to manage this massive infection as well because it can easily kill me.
Therefore, I am pleading for your help. I desperately need any help that anyone can give me. Even $1 is one less dollar that we have to worry about. If you can please help, it would be much appreciated. I am really suffering and I am really knocking on death’s door right now. If you can please donate, I can’t tell you how much that would mean to me. Also, please say a prayer for me and please spread the word of my website. Perhaps through your prayers and through you spreading the word to others, I will be able to receive the necessary help that I need to get the treatment that I desperately need. Without your help, I will be honest with you… I don’t know how we are going to be able to afford all this. This surgery for the colon and transplant is going to be a long and very expensive road!
As I have stated in past emails, my GI system is basically paralyzed and ‘dead.’ Nothing is passing through and as a result, I am being intoxicated by all the poisons that are leaking into my bloodstream and entering my organs and brain. I am literally going into heart failure and lung failure among other things because of this. As a result, we knew that my colon was going to have to come out and a transplant was going to be needed, which included getting a new small and large intestine, stomach, pancreas, and liver. It is an extremely dangerous surgery and it is the most dangerous transplant that you can have. Only like 6 hospitals in the country actually do this transplant.
However, in order to do this surgery and transplant, the transplant team said that I would need a central line placed in me such as one called a HICKMAN. The HICKMAN would allow the doctors emergency access into me, would give a way to deliver medication and also a way to draw blood from me. It would also take away the need for repeated peripheral IV sticks. Finally, it would be a way to give me TPN so that they can try to feed me because I only weigh the 60s and I can’t afford to lose any weight. In addition, I am extremely malnourished and my body can’t fight any infection whatsoever. I desperately need the TPN because I am not in the state that I can definitely survive even a simple operation because I am so ‘weak.’ I have no reserves and no resistance towards anything. The doctors don’t even know if I will be able to heal and they are scared that I won’t be able to heal especially when I undergo a MAJOR surgery like this.
But just as we were about to leave for Cleveland Clinic to have the port placed in me so that we can get the show on the road so that I can have the colon removed and then the transplant… everything just started to fall apart. That is when the huge downfall that started and now there seems to be no stopping it. When I went for pre-surgical testing it turned out that my heart was doing worse than we originally thought. Not only is my heart failing me, but also it turns out that I have dense calcium calcifications in the coronary artery. This is definitely a big “uh oh” and very dangerous because it can easily cause me a heart attack or even a stroke. The doctors wanted me to go for a “stress test” to further determine how bad it is, but when I went for the test they had to stop it and they couldn’t do it. It turns out that I am too small for the test and they didn’t know how much radioactive stuff to give me because of my weight. So I couldn’t have that test after all. They have to come up with a new way of doing that test now.
In addition, I developed an infection in my mouth and jawbone, as I have osteonecrosis and the left side of my jaw basically was giving me a lot of problems. As a result, the Cleveland Clinic said that I needed to have the surgery to deal with the infection in my jaw and mouth prior to having the port placed in me and then following with the rest of the surgeries. However, with it being the end of the summer and Labor Day, it was difficult to schedule because the doctor was on vacation and everything. So the surgery was finally scheduled for mid-September!
In the meantime though, I ended up developing a massive infection on the right side of my mouth and jaw as well. So now not only do I have an infection on the left side of the jaw that needed surgery on, but also now I developed a massive and I mean massive infection on the right side. The right side is so bad that there is no saving the teeth there or the bone. The doctor said that the infection is so bad that even in a healthy individual that the bone and teeth would have to come out because the infection is just too horrendous. So whereas the surgery was originally scheduled for mid-September, the surgery was just moved to this coming Wednesday, which is like 5 days away.
I just don’t understand it. No one takes better care of his or her mouth than I do. I mean I literally brush my teeth and gums like every time I eat, which is like at least 3 times a day, and I use a special fluoride treatment that is supposed to be really strong. But it seems that the more I try to keep my mouth in tip top shape, the worse it’s getting. My jaw and teeth are literally crumbling.
It turns out that my body is failing me so much and my heart is doing so bad that it is now showing itself in my mouth, jaw, and teeth. When I spoke to Cleveland Clinic, they said that my organs are failing so badly and that is why all this is happening in mouth and jaw. They said that I am extremely sick and desperately need surgery for my colon and transplant ASAP. They said that my body isn’t going to make it much longer. They told me that my body is in “survival mode” right now in that all my veins literally shrunk and even the values that are being shown on the bloods are not the true value because of this shrinkage of the veins. They said that my bloods are really much worse but because of the veins shrinking, the values are elevated since the veins are so small and the values go per ml. But if you took normal size veins and put them in me… you would see exactly how bad it really is. So we already know how horrendous my bloods are now… I can’t imagine how much worse they really truly are. I don’t think I even want to think about it. My veins are shrunk so much and my body is in survival mode and that is why I am so thirsty. I just can’t absorb anything anymore.
So now I scheduled for surgery on Wednesday to take care of this huge massive infection. I am really scared and worried because I am scared that I am going to wake up with no teeth in my mouth. I already know that part of my jaw will be missing, I am going to be losing at least 3 teeth, and I need at least 4 root canals. At least I will be under general anesthesia, so I won’t feel anything. It is going to be one long day though and one really long surgery. I am so scared though what my mouth is going to look like. This disease has taken so much from me already… I don’t want it to take my ‘smile’ as well. This disease is literally stripping me of everything. It is stripping me of my social life, my colon, my intestines, my stomach, the ability to walk, the ability to eat, etc. and now my smile.
I don’t want to wake up and look like a Jack Lantern. I don’t know what I will do if I wake up and you can see all those spaces when I open my mouth. I know that you can always get implants, but implants are expensive and I know for a fact that will NEVER be an available option for me because I will never be able to afford them. I don’t even know how I am going to afford this surgery because even though the hospital is covered by insurance, the surgeon is not and I know that is going to cost us an arm and a leg. Last time I had this surgeon work on me it cost us about $7000 and it wasn’t nearly this bad. I am so scared.
So surgery is scheduled for Wednesday at 8 AM, which means that I need to have everything done by Monday in terms of clearances. I need to have clearance from my medical doctor, anesthesia, cardiac, pulmonary, and also have an echo. I really don’t know how on earth I am going to be able to have all that done by Monday especially since I have surgery today (Friday) and then I am sure that I am not going to find a doctor that works on the weekend. Therefore, I will really have to hope that everything can be done on Monday. I have medical clearance and anesthesia clearance definitely on Monday morning. However, I don’t know how I am going to get the other 3 accomplished. I only hope that perhaps the hospital can fit me in to have those as well when I go to see them on Monday for anesthesia clearance. I can’t believe I was just told today that I needed all these clearances and I need to have it done by Monday. I can’t afford to have my surgery postponed and yet, I definitely need these clearances because of how sick I am especially since my heart and lungs are failing me among other things. Never a dull moment, right? So we will see what will happen. As it is the hospital wasn’t going to give me anesthesia on Monday because they said they were all booked up and wanted me to only come today for it. After I had to tell them literally how sick I really am and how I had surgery today to clean how my intestines like I do every Friday, they finally granted me the ability to come on Monday. But what a fight that was to get!
I am really hoping that everything will go ok and the infection will get cleared up. I know already from the doctors that it is a very massive infection… even for a normal and healthy person. I have been on a very strong course of antibiotics, so to be honest with you I am really unsure how it even developed on the other side and even got so huge when I was taking that high dose of antibiotics. The doctors say that due to my GI system being ‘dead’ that I don’t absorb anything. So apparently even though I was taking all these antibiotics, I was just not ‘absorbing’ them. Hopefully though after I have this surgery, I will be able to have the infection clear up quickly because while I am in the hospital I will be given IV antibiotic which will hopefully definitely be absorbed because it bypasses the GI system and goes directly into the bloodstream. I definitely need this to be cleared because doctors have determined that toxins from the bacteria in the infected tooth and jawbone may inhibit the body’s natural ability to suppress tumor development.
Well Wednesday is the big day!! I am scheduled for 8AM surgery. My dad will then spend the entire day and night with me because he can’t leave me alone in the hospital since the surgery is being done here and the nurses and doctors don’t really know how to ‘care’ for me because I can’t be treated like a typical and normal patient. I need special care, as I can’t really be touched especially on my legs. Also, if I need meds, to go to the bathroom, or something, someone has to make sure that I get it right away because I am so hypersensitive that I can’t wait. I am hoping that my mom will be able to come up to the hospital that night to visit me. Usually I never have surgery in the state and therefore, my mom never gets to come to the hospital to visit me. However, now that I am actually having surgery in the area, I am hoping that she will be able to come up to the hospital. But it all depends if I am done with surgery and if I am out of the ICU.
I am so glad and fortunate that my dad will be with me. I really do have the best dad in the entire world. I just feel so bad because I know he really is working so hard to finish all his work, make money, take me to doctors and care for me at the same time. I feel so bad because he is really working like a horse and he is no youngster. There is nothing that he wouldn’t do for me and I am so grateful for that. But I don’t want him to kill himself in the process. If anything ever happened to my dad, I would never ever forgive myself.
So it is really going to be hectic next week. Between all the clearances and surgery, I am really going to be busy. I also have my typical surgery on Friday to get my intestines cleaned out.
Besides having the surgery on Wednesday, we are scheduled to leave for Cleveland Clinic about a week after the surgery. But even with going to Cleveland Clinic, there is still so much to do before we even go there. I need to get a updated bone density scan because I am seeing the endocrinologist when I go to Cleveland Clinic. I need to have a bone infusion because my bones are so very fragile and they are scared that I am going to get a life threatening fracture. I also need to go to my pain management doctor and pick up my pain meds because I can only get them in New York and I am due to for them. So there is so much to even do before we even leave for Cleveland. I don’t know how we are going to fit everything in.
So dad and I are off again to Cleveland Clinic. Not only are we seeing the Endocrinologist and hopefully having the infusion at that time as well instead of having to come back for the infusion, but I also have an appointment with all these other doctors to get the necessary clearances for the surgeries that I need there. I also have appointments to further look into my heart. I also have an appointment with the doc who is supposed to be one of the leading doctors in my neurological disease. He is retired, but he still comes back once a week to see his “old” patients.
If all goes according to plan, the Cleveland Clinic wants to do the heart surgery at the end of that week. They want to deal with putting the HICKMAN central line in and they also want to do the heart surgery to deal with the dense calcium calcifications in the coronary artery because it is causing a blockage. They really want to get these surgeries done ASAP because not only do they want to get the show on the road because the sooner I have these surgeries, the sooner I can have the colon removed and transplant, but they want to have a central access into me because I am really not doing well and this is an emergency way to get access into me right away. Also, they want to deal with the heart surgery because I can easily have heart problems such as a heart attack or stroke because of the dense calcium calcifications.
The plan is that I will be able to come home for a bit after these surgeries at the Cleveland Clinic and after I get the TPN going in the central line. After all, they want to give me about 14 days of TPN before I undergo the surgery to remove the colon because this way it will give me some time to get some nourishment and build some reserves up so that I can ‘heal’ from the operation and fight infection. As it is… the doctors are extremely fearful of the operation that I am having this coming Wednesday because they are afraid I won’t heal or that I am going to get even sicker.
However, they will only allow me home for a little bit until I get the colon removed only if I can tolerate the TPN without the ketamine. I will be getting TPN with ketamine so that I can hopefully get the TPN more comfortably since in the past I wasn’t able to tolerate the TPN. The hope is that the ketamine will keep me as comfortable as possible especially since ketamine is known to “quiet down” my neurological illness, the autonomic dysfunction, and pain. However, if I can’t get off the ketamine, then I will have to remain in the hospital for the entire time I get the TPN and until I get my colon removed, which is for about 14 days. I will then have to stay in the hospital for about 10 days after the colon is removed and then even stay in the hotel in Cleveland for about another week or so after that to make sure that everything is “ok” before heading home. So if I can’t go home before the colon is removed, I will be stuck in Cleveland for about 5 weeks. It will come out to 5 weeks no matter what, but it is just a matter of being able to go home in the middle for a bit or not depending on whether I can stop the ketamine and tolerate the TPN by itself. Depending on how badly the small intestines are when the colon is removed, it will determine how fast I will need the transplant.
I just wish I could close my eyes and it will be over with already. I don’t know how much more I can take of this. It is just too much already. I can’t take it physically or emotionally anymore. I have to say though that I never met a better team of doctors than the Cleveland Clinic. My transplant team is simply amazing. They really take the burden off of me with everything. In New York and every other place I went, I had to make my own appointments and worry about everything. Yet, the transplant team in Cleveland Clinic actually handles everything for me. They are completely on top of me. They wanna know everything about me, they make all my appointments for with any specialist I need (even if it isn’t directly related to the transplant), they get me in with doctors that are booked or don’t even have hours, they call back and spend countless hours on the phone talking to me and explaining things and answering my questions, etc. They are simply the most amazing doctors that I have ever met. I am so glad that I have them as my doctors. I don’t think I have ever been happier.
Well I have my surgery in a few hours to clean out my intestines. It’s just another Friday. I wonder though how it is going to be because my doctor is the same team of doctors and the same place where Joan Rivers went. I hope that there isn’t that much media camped out there and I hope that we will be able to get parking close to the door. I can’t believe honestly that Joan Rivers passed. She was one of my favorite people. I am not one that usually particularly cares for comedians in the sense that I never think that they are “funny” and such, but Joan was different. There was no one else like her. She was hilarious. I loved watching her on TV and everything.
Laughter is an instant mini-vacation. Smiling and laughing can have a positive effect on your well being, as it acts as the body’s natural painkillers and is something I definitely I need. I have also decided since Joan Rivers has made me laugh and smile so much, that I am going to read one of her books because not only will I hopefully enjoy it, but I am hoping that the laughing that I will get from her books will hopefully also better prepare me for surgery and make me stronger since laughing expands the lungs, stretches the muscles in the body. This exercises the body, replenishing the cells from a lungful of oxygen and gaining all the benefits of exercising the body. Also… since I have been in such a rotten mood lately with everything happening, I figured what more appropriate book is there to read than Joan River’s book called “I Hate Everyone… Starting With Me!”
I have also been busy trying to learn how to put on makeup in a “professional” way. I hate the way I look and I will definitely not show my face unless I have makeup on. I am very embarrassed by the way I look because I am so emaciated and I am extremely pale. In fact, my dad always calls me “Snow White” because I am so pale. I hate my face because my skin literally sags on my protruding bones because I basically have lost all my muscle tone everywhere in my body including my face. Therefore, I am very self-conscious on the lines and wrinkles that are made on my face.
I used to be a person that loved to take pictures. However, now I will not even put up a picture unless I ‘airbrush’ it. Even with airbrushing I am not satisfied with it. But at least it is better than without. I also like to dress up as nice as I can be everyday by wearing makeup and nice clothing because not only do I like to feel as “normal” as can be, but I also believe that if you “look good” than you “feel good.” That was something that my grandma always instilled in me and she was right. In fact, I try to conceal how sick I am by dressing up as much as I can with makeup and clothing, and I must say that I do a good job. Most people don’t realize the extent to which I am so sick because of how much I push myself and how “good” I look with the makeup. Yet, who would think that beneath that beautiful façade is a person suffering and literally dying.
So I have been watching how to put on makeup in a more ‘professional’ way so that I can look my ultimate best. I must say that I have improved so much. I have been getting compliments like I have never gotten before. So that must mean something! I even gave my mom a makeover last weekend. It was a surprise to her. I must say that she did look so pretty after I gave her the makeover. What a difference it made!
Well… Yesterday was my dog’s birthday. He turned 9. However, since I didn’t get to really celebrate his birthday because I really wanted to take a birthday picture of him and get him a birthday bone and everything, I told him that we are celebrating his birthday today too. I love those ‘birthday’ bones and since you can only get it once a year because your birthday only comes once a year, I wanna get it for him. I can’t believe he is turning 9.
Speaking of birthdays… Dad’s birthday is next week. Yup… his birthday is September 9th. I really wish I could have made his birthday better. Hopefully next year I will be better and we can celebrate it BIG time. After all, he deserves nothing but the very best because he is the best dad in the world. He is not only my dad, but also my best friend, my superman, and my knight and shining armor. If it wasn’t for him… I definitely wouldn’t be here today. I owe him so much. He is the absolute best. He is one of the MAJOR reasons why I am holding on!!
Thanks again for all your support and encouragement. Again, I want to thank you for all that you have done and continue to do for me to keep me going. It definitely has not been an easy road and I really hope that I will be able to get the necessary treatments that I really need soon because I am seriously not going to make it much longer. If there is anything that you can do… whether it is to donate, spread the word of my website (www.gofundme.com/FallonMirsky) or even say a simple prayer… that would be much appreciated. Remember… no donation is ever too small and anything that you do is very much appreciated.
Thanks again for everything!