I just figured that I would write and let you know how the big surgery went and let you know the absolute latest. I don’t know how much I am actually going to be able to say tonight because I am very sick still and not doing well. But I wanted to at least post something on how I am doing.
The surgery itself went very well. However, my body didn’t take it very well and I am having a very difficult time recovering. In fact, the surgery took such an impact on my body that we think that it spread my illness big time, which is definitely something that we were hoping would NOT happen and definitely couldn’t afford to happen. However, it appears our worst fears have come true in the fact that this surgery has actually spread my disease.
I will be honest with you… this surgery was definitely no walk in the park. The surgery was about 6 ½ hours in length and it really was exhausting for not only me but also my entire team. I must say that I did have the best “team” on my case, as my surgeon was absolutely wonderful. He had meetings with everyone in the operating room prior to me being operated on so that everyone was familiar with my case. After all, I am not the ‘typical’ patient and can’t be treated like the ‘typical’ patient. I need special care and I can’t be touched like a regular patient. For example, the doctors have to be extremely careful with the lower portion of my body because my legs are extremely hypersensitive due to my illness. Nothing and I mean nothing can touch them because of the extreme pain.
So the doctor did everything in his power to make sure that I was as comfortable as possible. He posted signs all over my bed that said “don’t touch legs” in order to aware anyone and everyone not to touch my legs because it would really send me through the roof. He also showed everyone my pictures as well because he wanted everyone to understand my illness and I am definitely not an illness that people are familiar with. The doctor made sure that the room was the appropriate temperature since I can’t tolerate extremely cold temperature and the ORs are usually kept at very cold temperatures. He was extremely gentle and caring in everything that was done. Even when the operation was completed, I was taken off the table and placed into a bed that would be brought up to the actual room that I would be in instead of having me transferred into another bed once we got up to the room. I couldn’t have asked for a better surgeon.
But what a surgery it was. It was a very long surgery that was extremely hard on me and now I am having an extremely hard time ‘healing’ and recovering. I was of course put under general anesthesia and since the surgery had to take place on my jaw, mouth, and teeth, I had to be intubated through my nose and down into my lungs that way. So now that I had to be intubated through my nose, I am now continuing to suffer from bloody noses.
The surgery definitely was a long and exhausting surgery. I ended up having part of my jaw removed, 3 teeth extracted, and 11 teeth fixed. However, I had no choice because I was suffering from a massive infection that needed to be taken care of. Besides suffering osteonecrosis, I developed a massive infection due to my entire body shutting down. My colon is completely dead and as a result, it is spilling toxins and poisons into my bloodstream and the poisons are entering my organs and brain and shutting them down. I am being intoxicated and poisoned by these toxins and I really need to have the colon removed ASAP and also to have a multivisceral transplant, which incorporates receiving a new small and large intestine, spleen, pancreas, and liver. However, I first need to have heart surgery to put ports into it so that the surgeons will have emergency access to my body for these operations as well a way to try to give me TPN so that I can try to be made stronger for these operations since they are extremely dangerous and very difficult to heal from. Yet. I ended up developing this infection in the meantime and therefore needed to deal with this massive infection before we could worry about moving further towards the other surgeries. We also learned that I will also most likely need further heart surgery because my coronary artery has dense calcium calcifications in it. So my heart is being blocked as well, which can result in a heart attack or stroke.
But as I stated before, it was first important to deal with this infection because I couldn’t have these other surgeries until this infection was cleared up. We think it developed because of how bad my body is doing in general. It is just an outward appearance and a reflection of what is doing in my heart and body. My body is just shutting down and dying. As the doctors have continuously told me, I definitely need something to happen to me fast because I am at the point where I am rapidly deteriorating and I am going to constantly downfall until we get this problem fixed.
This surgery was torment. When I woke up, I was in such enormous pain. I was put on a IV pain medication of receiving Dilaudid every hour, but even that wasn’t enough. I never felt pain like I was feeling. Little did I know that not only was I feeling so badly, but also I didn’t look like a ‘beauty’ either?
My dad took some pictures of what I looked like after surgery and when I looked at the pictures it looks like I am wearing lipstick and received Botox. There was so much blood on me that it looked like I was wearing lipstick and my lips were so swollen that I looked like I had Botox. It was horrible.
The hospital had a very hard time managing my case. They had an extremely hard time managing my pain too. For some strange reason, I metabolize drugs so quickly that it’s literally amazing. I take so much drugs (like over 50 pills) that it would easily kill a horse. A grown man weighing 300 pounds probably wouldn’t be ale to tolerate my medication regimen. Yet, I am only weighing in the 60s and I take everything that includes ketamine, dilaudid, methadone, morphine, nucynta, etc. The list goes on and on. Doctors have such a hard time with prescribing medicine for me because by weight, I am so little and should be pediatric size. However, my body metabolizes drugs so fast that it is literally impossible to give me that size dose because it would literally do absolutely nothing for me. Doctors can’t believe how they can’t ‘numb’ me up for surgery and such and that is just one more reason why anything that needs to be done has to be done has to be done under General Anesthesia.
I am really upset that I had to have part of my jaw and teeth taken out. I already feel so ‘ugly’ already. This disease has taken so much from me already. It has taken away my social life, eating, walking, my career, my colon, etc. Now it is even taking away my smile. I already look like an emaciated skeleton and my skin literally sags on my protruding bones because there is no more muscle tone left basically anywhere in my body thanks to this wonderful illness. I can’t believe it is not going after my smile too. I really was fearful I would wake up looking like a Jack O’Lantern. I know that there are implants that can always be done, but when I can’t even afford the medical treatment that I need now, there is no way that I will ever be able to afford implants. Now that I have all this removed from my mouth… my dream and ultimate goal is to have implants done. I would do anything to have my smile back. I feel so inhuman already. I feel like this disease just keeps ripping me apart. What else is it going to take from me?
I really shouldn’t have left the hospital when I did because I honestly wasn’t ready to leave. However, I had surgery in one hospital and I had to leave because I needed to get to another hospital to have surgery today to have my intestines taken care of. After all, I couldn’t miss out on the surgery on my intestines because I needed to have my intestines ‘cleaned out’ because of the poisons that are literally intoxicating my entire body. There really was no question that I had to have this done because since my GI system is dead, I needed to have this procedure, which I have every Friday, as this is the only way I can remove and pass whatever is sitting in my colon. It has to be removed because it is this stuff that is sitting in my intestines that are causing further harm and further spreading the toxins and poisons throughout my body and shutting down my organs and body.
So I spent a few days at the hospital following the surgery on the mouth and jaw, and I was fortunate that my dad stayed with me every minute of it. I was also kept on the same floor that Jennifer Lopez was kept when she gave birth. She rented out the entire floor when she gave birth and now I know why she had that floor. That floor was absolutely gorgeous. It was all carpeted, had a salon, full-length mirrors in the bathroom, and even hair blowers too. I couldn’t honestly believe how nice the floor actually was. It must have been the best floor in the hospital.
Not only was I on the best floor, but also I also really have the absolute best dad in the world. He wouldn’t leave my side for a second. Both my mom and I kept telling him to go downstairs and get something to eat, but he refused to leave my side. He spent literally every minute with me. Who could ask for a better dad?
However, I feel so bad for my dad now because he has gotten sick from spending all that time in the hospital. The room was kept in a frigid condition and he must have gotten sick because of that in addition to the fact that infections are looming big time in hospitals. My dad tried to put towels over the air-conditioner vents to try to warm up the room, but it only did so much. Plus, him sitting over there for the entire time we were up there I am sure didn’t help the situation with him picking up a chill. It was so cold that his ring was basically falling off his hand because his fingers were shrinking because of the cold. Then when he wasn’t eating or drinking anything really to keep his strength up and also not sleeping because he was busy with me… there is no wonder that he got sick.
So now my dad is really sick with a fever and all. He has the chills, his body aches all over, his eyes are bulging, etc. My dad never ever complains that he is sick so for him to do so, it is bad. Yet, he is still not letting any of this get to him because he is still working himself as a horse. He knows that we are leaving hopefully for Cleveland in the week to come (September 23rd) and he knows how desperately we need the money and therefore, he is not even ‘resting’. With being sick and with a fever, he is continuing to work like a horse by working from 4 AM to 7 PM and not even taking a break. I am so scared that something is going to happen to him because it isn’t even where he is ‘well’ now. If anything ever happened to him, I would NEVER forgive myself. He is not only my dad, but also my very best friend. He is my superman. He is everything to me. I definitely would not be where I am today if it wasn’t for him.
But as I was saying before, this operation has not been easy on me. I literally can’t eat or drink anything. I usually can’t eat or drink much anyway except ice cream and egg whites and my medicated ice-pops, but even the very few things that I can usually get “something” down is impossible. I had surgery on both sides of my jaw and therefore, it is impossible to chew or swallow on either side.
We are also having a hard time controlling the bleeding. The incisions just keep bleeding and bleeding. Everytime they stop bleeding, it starts right back up again especially if I eat or drink anything. But I of course can’t afford to lose even an ounce and therefore, I am in a catch 22. I have to eat and drink because of my weight and yet it is so entirely painful and it causes me to bleed even more. Never a dull moment!
I have been in constant touch with the surgeon though about this matter and to control the bleeding the surgeon has me biting on gauze and warm tea bags. It is helping to a point, but then it starts right back up again. I really hope that this gets better soon because it is not only really painful, but I hate seeing the blood that is coming out and it tastes really bad too.
But as I stated before, this surgery was not easy on me and we think that this surgery also spread my illness as well. When I went for surgery today for my intestines, I was getting changed into a hospital gown when I noticed that my legs looked really funny. Last night I noticed my ankles looking a little weird but I didn’t look much into it. However, when I was changing this time, I definitely started to freak out because it was definitely not normal what I was seeing.
I kind of knew instantly what was going on. I knew deep down that it was the disease spreading. But I was hoping that I was wrong. I immediately called in my dad to look at my legs because he was on the other side of the curtain because I was getting ‘undressed’ and into a hospital gown. He didn’t’ like what he saw either. He knew kind of what that meant as well. When we saw the doctor, we showed it to him as well, and he was the third person to confirm the fact that it was the disease spreading, which was something that we couldn’t afford at all to happen.
I don’t know what we are going to do now that the disease is spreading and getting worse. It is definitely not a good sign that the disease spread the way it did. We instantly called my doctor who takes care of my ‘ketamine’ and he wanted me to come in ASAP. However, with everything happening and with the finances, the earliest that I can see him is Wednesday. Yet, with my illness, every day is crucial and counts. I am only hoping that nothing more disastrous will happen in the next few days. I am only hoping that the ketamine infusion that I will undergo on Wednesday will suppress the illness a bit. I know I can’t expect the ketamine to do miracles and work wonders because the amount that I really need to make an impact can only be attained and done in Mexico because it is not FDA approved, but I am hoping at least it will help and hopefully suppress the spread of whatever amount of the disease happened to spread due to the previous surgery. I have never been so scared because this disease spreads like a weed. Once it gets started, it is so difficult to slow down and stop. It just takes over like you wouldn’t believe and it has taken over my body enough. I literally can’t afford for it to takeover anymore.
So as I was saying, I had surgery today to clean out my intestines today. I was not a very good patient today because they had a difficult time getting an IV in me. I ended up squeezing the doctor’s fingers too tightly and bending them backward because of the pain that was occurring as the anesthesiologist was trying to put the IV in me. Unfortunately, I have had so many IVs already that there is so much scar tissue in the area. Therefore, she had a very hard time putting the IV in and I was not holding still. The doctor had to literally hold my arm while the anesthesiologist tried to get the IV in me. I felt so bad for killing the doctor, but the anesthesiologist was killing me. It was so painful!
I really thought it wasn’t going to be so bad ‘inside’ my intestines especially since I haven’t eaten anything for like 4 days. But apparently I was wrong. The doctor told me that it was just as bad and I was so surprised about this because of the fact that I didn’t eat for 4 of the last 7 days. But he explained to me that in my condition, I can literally not eat for many days and the food can be there because my GI system is so paralyzed and ‘dead’ that nothing goes through no matter what. That is why it was so imperative and important that I have the surgery today because I would have had all these toxins and poisons spilling into my bloodstream and going into my organs if I didn’t.
So… it looks like the next week is going to be extremely hectic. My dad is going to have to get over being sick and hopefully I won’t get it. That is a real big fear of everyone. I have no immune system whatsoever and therefore, I literally catch everyone. In addition, whatever I get is so much worse because everything is magnified for me. So, this illness that my dad has can really have a severe impact on me. Plus, with all that I am going through already, my body most likely can’t handle fighting another thing at this time. So we have to really be cautious that I don’t get sick.
Dad has to really take a “easy” too because he needs to rest out this illness. We are supposed to be leaving for Cleveland in the following week (Tuesday, September 23rd) and therefore we can’t afford for him to be sick. Yet, on the other hand, we need the funds in order to go too, so we can’t afford for him not to work either. So… unfortunately working and relaxing are not compatible so who knows what is going to happen.
If all goes well and according to plan in the sense that we have the funds and no one is sick, we are off to Cleveland Clinic in 10 days. It is more imperative than ever to get there now because that is the place where my neurologist is and he is one of the top specialists in my neurological disease. With the disease now spreading the way it is doing because of the surgery on my jaw, it is really important that we see him ASAP because he will probably be the only one to have insight as to what to do since he is one of the “founding fathers” of my illness.
In addition to seeing my the specialist for my neurological illness, we are scheduled also to see anesthesiology and to get all the pre-surgical clearances so that we can go forth with the surgeries to have the heart surgery to put the ports in and the TPN and then 14 days later to have the colon taken out. Depending on how the small intestine looks and such inside will determine how urgently I will need the multivisceral transplant. We are also going to be seeing the heart specialist because we have to know what to do with the blocked coronary artery now since I can easily have a heart attack or stroke. We are also scheduled to see the endocrinologist too, which is a very important appointment because she is supposed to be giving me a bone infusion that I desperately need since I have extremely weak bones and the doctors are extremely worried that I am going to suffer from a life-threatening fracture. If all goes well, they want to proceed with having the surgery for the ports at that time as well. So it is a very important trip there. I just hope it all works out.
When I think about having to go to Cleveland Clinic in 10 days, I don’t know how I am going to do it. I am in so much pain and I am so mentally and physically exhausted. I also don’t have the funds that are needed. There is just so much to do before we can even go. Yet, knowing that my disease is now spreading and everything, I know I have no other choice but to go. I only hope that we will be able to go and everything will work out.
So that appears to be it. Other then that nothing else is really going on. I have been trying to read Joan Rivers Book called “I Hate Everyone… Starting With Me” and I am also reading “Finding My Prince Charming” by J.S. Cooper. They seem pretty good. I can’t wait for my absolute favorite author to come out with her book, which is in October. I just love Sophie Kinsella and her “Shopaholic” books.
Well… I am going to get going. Thanks again for all your support and encouragement. Please continue to pray for me. Please continue to spread the word of my donation site (www.gofundme.com/FallonMirsky) because donations are strongly needed. I need so many lifesaving surgeries, medications, appointments, etc. and unfortunately I cannot receive them without help.
Thanks again for everything. I wouldn’t be where I am today without your wonderful support and encouragement.