Let me warn you ahead of time that this email is very filled with lots of info because there has been and is so much going on. I am really not doing well and with everything happening, my head is literally spinning. My head is spinning so fast that I am surprised it has spun off my shoulders like a propeller.
I am really deteriorating and need desperate help. Knowing how sick I am, how sick I am getting and how I don’t have very long to go… it really bothers me to know that I should actually be in Cleveland right now getting the help that I need to help get me out of my suffering and to help put me on the track to getting better and living a long, healthy, and normal life. Yet, unfortunately, I am here suffering and hoping that I will make it until my next appointment at the Cleveland Clinic comes.
It really hurts me that I couldn’t go to the Cleveland Clinic this week because I am a ticking time bomb that has officially detonated and it is only a matter of time before I explode. However, unfortunately we didn’t have the funds available to be able to go. It is a sham how the world relies on money and no one does nothing for free. My life is literally at stake, but since we didn’t have the money it was a “no go” for us.
I tried so hard to raise the money so that we could go because I needed to get there so badly. I hated to sound like a “beggar” because I never was. Yet, I don’t want to die and therefore, I am basically out of options. I really had no other choice but to actually plead for help. Yet, despite all my pleading and ‘begging,’ we unfortunately didn’t get the funds needed so that I could get to Cleveland.
We really needed to go because I am getting sicker by the day. The doctors don’t honestly know how much longer I can exist this way and to tell you the truth… I don’t know how much longer either. I am barely hanging on. I am so tired. I am so tired of all the pain and suffering. I am so emotionally, physically, and psychologically exhausted. Sometimes I wish I could just close my eyes and close them forever because I am just so tired… tired of fighting.
Despite my attempts to get to Cleveland, I was unable to go and therefore, I had to reschedule all my appointments. These appointments were extremely important also because they needed to occur so that I could have the surgeries that I need. I need to have heart surgery to put ports and lines in, which includes a central line so that they can have emergency access into me for the surgeries and so that they can try to give me TPN. I need to have my colon removed because it is causing me to become intoxicated. The colon is literally spilling poisons into the bloodstream, which are intoxicating all my organs and shutting down my entire body. I also finally will need the multivisceral transplant, which includes getting a new stomach, small and large intestine, pancreas, and liver. So it was very important to get to Cleveland this week so that I could get all the necessary appointments out of the way so that I could get all these necessary surgeries done to save my life. I also needed to get a bone infusion because my bones are extremely weak and the doctors are worried about me getting a life-threatening fracture. So it was also important to see the endocrinologist at this time so that I will be able to get this special infusion because I cannot get it in New York.
Yet, now that we were unable to go to Cleveland Clinic, we had to reschedule all my appointments to a later date. I am only praying that this later date will work out. I only hope and pray that by the time the date arises, we will have the necessary funds. After all, we cannot cancel again. The surgeries that I am having are massive surgeries that incorporate a lot of planning, scheduling, and a huge team effort throughout the entire hospital because many specialists are needed to be on my case and scrub in on the surgeries. So essentially, I am taking up a lot time of the doctors there and we aren’t just talking about one doctor either. So, I was already told that if I cancel again that they don’t know if they will be able to follow through and do the surgery because they can’t keep making plans and then canceling them. I can’t blame them for how they are feeling because I am taking up so much time and I am taking up so much space from doctors’ schedules that could be given to other patients, but I really need help too.
I just hate that I don’t have the money to help myself. Now I know how a dog feels when he is shown a bone and how he is salivating and wanting it so much as he watches it being swung back and forth right in front of his nose and then he is tricked and not given it.
I can’t afford to miss these appointments again. The doctors don’t even know how I am going to be make it that long because I am NOT in the ‘greatest’ shape at all. I am literally walking a tight rope and the only way that it is staying up is by hanging on by a thread. Well, that thread is ready to break, and I just hope that it doesn’t break before I get to the off of it and too the other side. I am really running out of time.
Like I said before, I can’t miss these appointments again because not only is it crucial to my health and I can’t survive without them, but the doctors will not continue to care for me and proceed with all the necessary treatments that desperately need in order to save my life. That is why I am ‘begging’ and pleading to please help me raise the money needed to have all this done. I really need so much help from as many people as possible. If you can please help me out in any way possible… please let me know. I can be reached through email at Femirsky@gmail.com or you can even send me a comment through this. Any help whatsoever is much appreciative. Please help me because I don’t want to die and this is basically my last hope!
Well, if all goes according to plan, I have all the new dates for my upcoming surgeries. The task now is just to hold on and make it until then, as well as to raise the money that I will need in order to go through with them. It just stinks because now I am forced to miss all the holidays. It is a shame that I will have to miss the holidays and spend them all in the hospital because I won’t be able to be with my mom during any of them when holiday time means “family” time. Unfortunately we don’t have the finances for my mom to come to Cleveland with us and therefore, my dad is the one who will be taking me while my mom remains at home. After all, she has to watch the business, house, and animals. Just because we will be in Cleveland, my mom will be having her own troubles and struggles because she will be all alone trying to run the business so that it will survive until my dad gets back and so that some money can be made to pay the bills. We don’t have money to board the animals at the vet and my mom has to take care of paying the bills that come into both the house and office.
But I would have really loved to be with my mom during the holidays. Now it appears though that Thanksgiving, Chanukah, Christmas, and New Years will all be spent in Cleveland. Thank goodness for Facetime because it appears that will be closest I will get to see my mom for the holidays. I guess my family will also lose out on my famous cooking, which I always do on every holiday.
As of right now, I am scheduled to go to Cleveland November 12th. That is the first available appointment that I can get for the specialist that is known for my neurological disease. My neurological disease and autonomic condition is extremely rare and complex that not many doctors are knowledgeable about it. In fact, there are only about 3 doctors in the country who are really “known” to know about my condition, and the one that I am seeing at the Cleveland Clinic is one of them. They have written papers on my illness and everything. In fact, these doctors are so well known that it is impossible to get an appointment with them. They have like a 2-year wait (no joke). So knowing that I have one of the worst cases in the world for my illness and how badly I am doing and how it is spreading, it is imperative that I seek the expertise of a doctor who is very familiar with my condition. In fact, I actually have seen this doctor before and thank goodness I have because this doctor has since “retired” and will only see “past” patients that he has seen.
I am also scheduled at that time to see the endocrinologist. It is very important to see her because I have to undergo a bone infusion because of how weak my bones are. The doctors are afraid I am going to get a life threatening reaction and unfortunately the infusion that I need cannot be given in New York. I also have to see the cardiologist, as it was discovered that on top of everything else that is happening with me, I now have dense calcium calcifications in my coronary artery. This is extremely dangerous because it can easily cause me a heart attack. If you factor in all the other components that I have such as the bad bloods, arrhythmia, bradycardia, autonomic dysfunction, etc. I am a heart attack waiting to happen.
I will only have to stay there for about 3 days for all these appointments, but I will then have to return back to Cleveland Clinic during the last week of November, which is also the week of Thanksgiving. During that time, I will be undergoing all the necessary and final testing that I will need for the upcoming massive surgery to remove the colon. I will need a lot of final testing, which includes getting a special type of stress test because the doctors need to know how my body will react to everything because this surgery is extremely massive and will be putting a lot of pressure on my entire body. I would have had this stress test done already, but when I went to have it done the last time we were in Cleveland, we had to stop it because I was considered “too small” to undergo the test. I didn’t weigh enough and they thought it would be too dangerous to be injected with all the IV dyes needed to do the test. So we had to reschedule it to a later date, which is now, and it has to be a different kind of test.
I am still not counting Thanksgiving out though. I am trying everything to make it home for the holiday… even if it means that I fly on that actual day. There is actually one flight going out that day and I plan on being on it.
Hopefully will be able to make it home for the holiday because I will then have to return to Cleveland then following week to start all the surgeries. I will be having all the lines and ports placed, which includes the central line. A central line can be used to give treatments such as chemotherapy, blood transfusions, antibiotics, intravenous (IV) fluids and liquid food if unable to eat. It can also be used to take samples of blood for testing, which means not having to be continuously stuck each time you need blood drawn.
This surgery will be very intense because not only do I have to have tubes and ports placed in me and they have to work on my heart, but it will also stir up my autonomic dysfunction and disease because any traumatic event that happens to my body will do that. I am extremely hypersensitive and my disease is known to spread through surgeries and trauma. In addition, as I will have the ports and lines coming out of me afterwards, my body will also have to get used to that as well, which will be very difficult considering how hypersensitive I am.
To help deal with the entire surgery and the central line afterwards, they will be giving me lots of medication including ketamine. I was hoping to be able to possibly come home after I had this surgery and before I had the huge surgery to take my colon out because it will be another 14 days until that will take place, but the doctors are very skeptical about that happening. They feel that this won’t be an option because they don’t think I will be able to get off the ketamine and pain meds to be able to leave the hospital. In addition, they are hesitant to let me go home because it is only for a short period of time because no matter what the surgery to remove the colon will be 14 days after and they are scared that I will get sick or catch something with all the traveling and with being around other people. That would be the last thing that we would need at this point.
I still have to decide whether I want the “Hickman,” which is a tube that is inserted into one of the veins of the heart through the neck or under the collar bone, or a line known as a “PICC line” which is a tube that is inserted that into a vein of the heart by going through a peripheral vein such as the upper arm.
This surgery will be very intense for me.
But as I stated before, I am having the colon removed 14 days after the surgery that was done to put in the ports. Therefore, that means that I will be having my colon removed on December 23rd. I could have had the operation the following day, but I wanted to make sure I was up enough to be able to celebrate Christmas and everything. The doctors are not looking for me to per se gain weight on the TPN or reach a certain number before they do the operation. They just want 14 days of the TPN and they are doing the operation no matter what. In fact, the doctors think that gaining weight will be extremely difficult for me because I have to deal with the refeeding syndrome, which is extremely dangerous and they also feel that the chances of me getting even into the 90s is impossible. So they just want to do the TPN for 14 days to try to get me to be a little stronger so that I will be able to make it through the operation and to help me recover especially since it is such a massive and dangerous operation.
Depending on this removal of the colon will determine how fast and urgently I will have the transplant. It all depends on how badly the small intestines are affected. But we won’t know that until we remove the colon.
So I will be in Cleveland for all the holidays including the New Year. From the time I have the surgery to put the ports in to the time I will be allowed home, it will be about 5 weeks. So I will definitely need as much help as possible with raising funds because there is no way that we can afford to go through with all this by ourselves. That is why I am hoping and praying that others will be kind enough to find a way to help me out as much as possible. Like I said before… any help whatsoever would be much appreciated.
It is definitely going to be weird spending all the holidays including Christmas and New Years in the hospital. But the doctors say that hopefully Santa will be bringing me the best gift of them all… a new lease on life. After all, the huge surgery is right before Christmas. So hopefully I will be starting 2015 as a brand new and healthy person. I really hope that all will work out. It would really be amazing if that happens because I have been sick for so long that it would be a dream come true to be “normal” again and to regain a life again.
In the meantime though, I am still not doing so well in regards to the previous surgery that I had on my jaw and teeth. I am still in a ton of pain and still having a harder time than ever eating and drinking. If I thought I couldn’t eat or drink before because of my gastroparesis, it is literally impossible now. Even the very few things that I could have before such as the ice pops and eggs are giving me problems. The only thing that really feels somewhat ok going down are gummy worms. I know it sounds weird but that is basically the ONLY thing that feels good going down.
It really worries me though because I went to the surgeon and it appears that I am not “healing” and recovering like I should be. It really scares me because if I can’t heal or recover from a surgery like this, how am I supposed to heal and recover from a huge and massive surgery like I am having on my colon and with the transplant?
I was thinking about asking the doctors if they think hyperbaric oxygen might be an option that would help me. I know that it helps people “heal” and therefore, I was wondering if possibly they could do that on me and it would help after the surgery. I don’t even know if the Cleveland Clinic does it, but I can’t imagine them not doing it especially since it is so well known for burns and Cleveland Clinic is such a top hospital in the country. So I will ask and find out. Can hurt to ask.
So I have a huge task ahead of me. I really gotta hang in there so that I can be strong enough to undergo these huge surgeries. Hopefully my weekly surgeries to “clean out” my intestines will also buy me time because without that happening, I am a goner. I have to worry about those toxins spilling into my body and shutting down my organs and I also have to worry about my colon rupturing because nothing passes through. I can easily go into sepsis because everything just sits in my colon and rots.
Well… I guess that sums everything up that is taking place. Not to sound repetitious but I would really appreciate it if you can lease help me. Any help whatsoever is much appreciated. Please say a prayer for me in the meantime! Until next time.