Wow. I can’t believe how close we are to leaving for the Cleveland Clinic. Just 2 more days (not including today) and we are off to Cleveland. Of course nothing is set in stone though yet because we are still way behind on the financial aspect. I am really praying and hoping that the financial part will work out in the next few days or at least continue to work out on a continuous basis while we are down in Cleveland Clinic because I am not doing well at all and I need so many lifesaving surgeries that we cannot afford without help.
So even though we may be able to get there to Cleveland to have the initial surgery or something, it doesn’t mean that we won’t need so much help from others. I will have to remain there for at least 8 weeks and undergo so many surgeries. So… we will never know when we will have to put a halt to surgery, which would absolutely be horrendous. So I am actually praying that this will never happen. I don’t think I can take it if that would happen.
I am so scared. I am so scared that I am going to die from this disease, I am so scared from all these surgeries that I am about to undergo, and I am so scared we aren’t going to be even able to have the surgeries because we aren’t going to be able to afford them. I am really deteriorating… worse than ever… and that is why you haven’t really heard from me. It takes so much out of me now to even get out of bed, as everything exhausts me and I am in soooo much severe pain.
Cleveland Clinic couldn’t come at a better time. In fact, the doctors can’t wait for me to get down there. They keep joking around with each other saying how I am ‘coming’ because they know how much trouble of a case I will be. I am definitely not going to be an ‘easy’ case and they know it. But they should be used to it because Cleveland Clinic is known for this. They are known for cases that can’t be helped elsewhere and for extreme procedures. So at least now I am not being passed around like a “hot potato” anymore.
Gosh… Cleveland Clinic is so close and there is soooo much to do and on top of everything else… so much is going wrong. To begin with, I fell out of bed and ended up injuring my left arm. All I kept saying when I fell was “please don’t let it be my hip.” I already broke my hip once and it was the absolute worst. I couldn’t have surgery on my hip because of how fragile I am and everything and therefore, I was on complete bed rest for like 12 weeks. It was so painful and every time I needed to go somewhere, my dad had to carry me. Thank goodness for my knight and shining armor!! I never want that to happen again though.
My dad knew something happened because it was really early in the morning and he heard “thump.” He then said that he heard in the tiniest voice, “help me! Help Me!” He knew right away that something happened to me. So of course he came in to rescue me and he picked me off the floor. I had my arm checked out but the x-rays showed that no bones were broken. Thank goodness because even if they were, putting any of my body parts in a cast is one of the worst things to do for my illness because immobilization spreads my illness. Plus, since I have the autonomic dysfunction, I would be absolutely uncomfortable because I can’t bear the feeling of anything touching my skin. I barely can sleep with my blanket touching me and I can’t even tolerate my parents hugging mw or anything. Then with the autonomic dysfunction causing me to swell and shrink at any time… it was not a good combination.
But instead of breaking bones, it apparently looks like I tore some ligaments and tendons. I will need more orthopedic studies performed to look into this matter further but it was already decided that since no treatment would be done here such as surgery because of my complex medical condition, there would really be no reason to run all those studies and run up medical bills… only to go to Cleveland to have them repeat their own studies because you know doctors like to have their OWN tests. So I have really been suffering.
On top of that, I have really been having severe jaw problems. My teeth are literally crumbling as we speak and I have huge potholes in my mouth and my bones that are holding the teeth in place are soooo weak and need bone grafting and other surgeries. It is really bad and causing me great harm. Even though this is really abnormal and I hate it because it is affecting my smile, it is completely normal for “transplant” candidates to undergo teeth problems such as these. It really stinks because it is like this disease has no mercy on me. It takes whatever it can grab. But, after speaking to my doctors in Cleveland, they told me that after all this is said and done, I will be able to get implants and then I will have such a perfect smile. But when I found out that it was like a 9-month process, I almost flipped. I have suffered so much already and all I want to do now is look “beautiful” and not a jack o’lantern! I really have lost all sense of patience already. I have none. I just want to get better already. I want my life back already.
In addition, my pain is escalating beyond control and my GI system is getting so much worse. I am not getting an increase amount of ketamine every week, as I am now getting about 300 mg of ketamine through the IV in the coma/infusion and then while I am under they perform other procedures such as injecting another 100 mg ketamine in my spine. They have also been doing radiofrequency in my occipital lobes (both of them) and injecting steroids such as Marcaine in both to help deal with the headaches. I just can’t deal with the pain anymore. Everything is astronomical. I am literally going through the roof.
Not only has the pain escalated and so has the discoloration, but also my body is developing bilateral pitted edema. This shows that something is definitely wrong in my body. I am only hoping I am not going into heart failure. My legs (both of them) are so swollen that I can’t even get a shoe basically on the foot that is considered the ‘better’ foot. I have no idea what is causing this, but it is horrible. I can’t even get IV fluids anymore because I am filling so much up on fluids and aspirating. My cells can’t hold the fluid inside and it is just spilling out into my lungs. It is making it impossible to breathe. All you hear is gurgling. I am so thirsty and yet, the more that I drink, the worst I get and the worst I sound. Plus… since I can’t technically ‘absorb’ anything, I can’t quench my thirst on anything… not even my ice pops that are supposed to be filled with heart meds and Gatorade. It is a no win situation.
Speaking of heart meds and bloods… that is another area that I am really deteriorating in. The doctors at the Cleveland Clinic are telling me “not to worry” and they will “handle everything,” but I am still freaking out. One of my head doctors actually gave me his cell number in case something should go wrong. Since I am so complicated, he is making sure that the whole entire hospital is familiar with my case and if something should happen, he is going to make sure that I get the help that I need immediately instead of the doctors just ‘passing the buck!’
But there is so much to do before we leave. We are going to be there for at least 8 weeks and I don’t know how we are ever going to manage financially and psychologically. We won’t have an income during this time and therefore, that is one of the main reasons why I desperately need donations. My dad will be with me in Cleveland and therefore, he will not be working. We are leaving the business in the hands of my mom, but of course my mom can’t go to clients’ houses and exterminate. So if you can please donate or help me raise money during this time, I would really appreciate it. I can always be reached via email at Femirsky@gmail.com.
Even though my first surgery is not until Monday morning, they want me to check into the hospital Sunday due to my complex condition. So that means that we are flying into Cleveland Clinic probably on Saturday. I am trying to hold off though until Sunday because I am hoping that they will allow me to checking Sunday night, which will permit me to fly in earlier that day. It will save me a day of a hotel stay and any way of saving money is better than not.
As it is, one of my head doctors is simply amazing. Not only is he going to make sure that I am as comfortable as possible and try to get everything run as “smoothly” as possible, he is also going to try to make things as “cheap” as possible. For example, he knows that after I get certain surgeries I will have no choice but to spend days in the ICU. However, on other surgeries, he will babysit me afterwards and if he can manage to get my pain somewhat under control and everything, I will be able to go to a regular floor. This will allow me to skip the ICU, which is a lot of money compared to a regular nursing floor. He is just one amazing doctor.
I also told the doctor that he needs to keep my dad busy because my dad will literally go insane being in the hospital everyday for that length of time. He said that once I am ‘stabilized’, he will take my dad out in his Porsche that is supposed to be some speed demon and go for burgers. My dad really would like that. He already offered to take my dad to strip joint. I really have the best doctor. My dad just loves his burgers too because when we go to the hospital, it is basically the only time he is allowed to have them.
I asked the doc, “what is in it for me?” So he said that he will show me some really cool things as well. He knows how interested I am in medicine and everything and therefore, he is going to take me to the observatories to see the operating rooms and everything. He is going to be the one doc that is responsible for getting everything that I need he says that I have nothing to worry about with him in charge. He is also the doctor that will be putting me to sleep for everything that is needed. Even regular things that people aren’t normally not put asleep, he will put me asleep because he wants me to be as comfortable as possible.
Gosh I have so many upcoming surgeries to prepare for. Not only will I be having heart surgery and having ports placed in me so that they can have emergency access into me, if needed, but they are also going to try to use those ports for TPN. I have tried TPN before, but unfortunately I failed them. But we are going to try them again with the usage of different drugs and hopefully between the drugs, the ports, and everything else… I will be able to tolerate the TPN because I desperately need it.
I need the TPN so badly because I have absolutely no reserves since I am only weighing in the 60s. If I get an infection or something, that is the end… I am a goner. We would really have a huge disaster on our hands. So we really need me as strong as possible for these surgeries because they are rough on the ‘normal’ person and let alone someone like me… I need to be in the best condition possible so that I can heal.
Besides the heart surgery, I am also going to have the pacemaker team come down as well. They want to put a pacemaker in me as well because in case I have an autonomic dysfunction attack or something, I will kind of have a ‘safety measure.’ As it is, my heart rate is only in the 40s and therefore, when I go to sleep, my heart rate drops to the low 30s and everything. So the nurses literally freak and I have to sleep with the paddles right next to my bed. You can’t imagine how scary and freaky that is to know they are so close.
Another thing that freaks me out is that I can’t be treated like a NORMAL patient. That is one more reason why one of my head doctors has to make it known to everyone how to treat me. All the normal things that you would think that would “help” a patient such as covering a patient with a blanket, giving IV fluids to raise bloodpressure, etc. would all end hurting me in the end. For one things, I am definitely not a patient that most people have witnessed or seen before. For example, they can’t touch me and I turn all these different colors. I am so hypersensitive that even a simple needle stick is like someone sticking a knife in me. When I am having an ‘attack’, I can not only change colors and look necrotic or something, but my veins can bulge out so much that you can actually seethe valves in the actual veins. In previous hospitals my dad had to write on the washboard on the wall “Do not touch legs” so to make the nurses and staff aware of the ‘not touching.” I had so many doctors and nurses running around the hospital and everything because they are literally freaking out for what they are seeing. Never before me have they seen something like this. My dad and I try to calm them down and tell them “not to worry” because this is something we see all the time. But that still doesn’t’ calm them down.
So I will be having the pacemaker team down. If I undergo pacemaker operation, I won’t be able to get the traditional pacemaker operation. My operation would be much more intensive and the actual pacemaker would have to go under the muscle and rib (unlike others that are just under the skin) because I am just way too thin and it would erode too easily and cause infections.
I will also have the dental and jaw team also work on me besides having my ports placed in my heart and my colon removed because of the holes in my teeth and jaw. I am huge pain from them. You know toothaches and everything… they are real killers. Well think about having all this pain on top of all the meds that I am taking such as methadone, dilaudid, morphine, ketamine, etc. and still feeling this tremendous pain? You can see how horrible it feels.
I also need a bone infusion because I am a life-threatening fracture waiting to happen. I used to get it done here in New York, but I got too sick and the doctors are too afraid now. My bones are really deteriorating and if I ever get a fracture, it could be extremely life threatening. So I will have to take care of that as well.
Finally May 11th is the famous day my colon is coming out. Turns out that I will need three other transplant surgeons besides my head transplant surgeon. The night before the list came out of who was scrubbing in with my head surgeon, I was talking tone of my anesthesiologists, who happen to be also one of the head surgeons on my team and responsible for my care, and we were talking about the different surgeons we could have a choice of. Sure enough I get the ones that I was not really wanting. But the ones I got are terrific with a knife… but bedside manners stink. My anesthesiologist said that we will just deal with them afterwards. The important thing is that when surgeons’ hands shake… their hands don’t.
So there is just so much to do while we are there and everything will be so risky. I just hope everything will be ok because my dad will be there by himself and won’t have any support. He is already secretive, so if something happens, he probably won’t tell my mom right away. When I broke my hip and was all blue, not breathing, having seizures, in the ER, my mom kept calling and he wouldn’t even tell her a single thing that happened. She had no inkling that I even fell or tat I was in the ER.
At least I will be getting some good meds… meds that nobody else really heard of. They aren’t afraid of giving medications because of a heart rate too low or anything. If you need it, you need it. Simple as that. They also have drugs that are unheard of at other hospitals. For example, they will have me on Precedex and Exparil. Whereas I can get Exparil on a regular floor, I can only get the Precedex, along with the ketamine, in the ICU.
Precedex is the coolest drug. It basically puts you in a “coma state” and then when they need you and walk in to the room and call your name, you become conscious and can carry out a normal conversation with them. Then when they leave, you go back into a “coma state.” They use this drug to put people into comas yet they can still test neurological functions.
Exparil is another cool drug. He said this is like a really long lasting and strong lidocaine. People get this drug and walk around with absolutely NO pain whatsoever. You can only insert it at the site, but that is better than nothing. He said that he gives it to people who have hernia operations and they walk around like they didn’t have it ever done. It is amazing.
In terms of the colon surgery, we don’t know how urgently I will need the transplant until they get inside. It will be even riskier surgery for me because they can’t empty my colon prior to surgery. So even though the intestines are known for bacteria, I am going to have much more bacteria because I can’t empty the colon at all. So they are really going to have their hands full. The doctor said that my colon is really bad and diseased and must come out a.s.a.p. The doctor said it is huge and it is really causing a lot of problems. He told me though that they will measure it and he will also take pictures of it and of my insides when I have it. I can’t wait because I always wanted to see my what my insides looked like. How many people can say that they have this kind of view of themselves?
If the small intestine looks salvageable, it will mean the transplant can wait till later rather than do it immediately. Therefore they will bypass the stomach and just use the small intestine from the esophagus straight down… bypassing everything. I keep telling them “no bag,” but they said that Kareem (the head transplant doc) is not a ‘bag’ guy. It doesn’t make me feel any better because once you are asleep… you don’t have a say and once it is done… that is it.
So… I guess we just got to have a good attitude and see what happens. The doctors did say that whenever I can’t tolerate it, I can activate the AMET team, which means that they have to be at my bedside within 10 min and they will bring me into the ICU and put me under so I don’t have to feel anything. It is going to be a long 8 weeks at least, but hopefully there will be a light at the end of the tunnel and I will get better and be able to get my life back! This disease stole too much from me.
I am starting out with one central line, but unfortunate by the end of all my surgeries, I will have lots of other lines coming out too. I will probably even need another central line. I told the doc that I don’t want one coming from my neck out of the jugular. I think I rather go with the one called a HICKMAN, which goes under the sub clavicle and into the heart that way. Since you have two sub clavicles, I can get both done that way. But I still have a bit to decide.
I can’t wait to be all better. I just don’t know how we are going to get all our stuff there. My dad absolutely refuses to do the wash and therefore, I don’t know how he is going to manage to bring all that clothing (I don’t even own that much). Since I am the “nurse” in the house I usually set up everyone meds and I asked him if I gave him a list if he could set up his own. Of course he couldn’t so that means I have to fill a bag of just vials of medications. You take into account both our medications and like taking them three times a day and that comes out to over 160 vials… not to mention how many medications are in each vial. Especially for me because I take so many meds for each dose of medication that I take. That is going to take up a suitcase in itself.
I am going to definitely miss my animals, especially my cat. It is going to be Missy’s birthday. She is going to be 11. I wish I was going to be able to be home for her to celebrate it with her. I told her that when I get home we will do some big celebrating.
I also bought my dog so many dog toys. I don’t know how my dad is going to last without my dog being around because that is my dad’s absolute best friend. He is the ONLY one that can calm him down and my dad comes home every day looking for him. Sometimes I think he looks more for Max than he does for the rest of the family. We are surely going to miss him. I gave him the toys already and he loves them!
I got a special bear to bring with me to give me a little taste of home. It came all the way from England and from ROYAL MAIL. It is so adorable. So even though my mom is unable to go with us, at least when I look at it, I can still feel like she is near me. After all, you know I am a GUND freak too. I am bringing him and my SNUGGLES. Because after all, it is SNUGGLES who helps with all the belly pains, which I am sure that I will have plenty of because I am having HUGE abdominal surgery, as I am having my colon removed and I am either going to be urgently having the multivisceral transplant (small & large intestine, pancreas, spleen) or they will bypass the stomach and just use the small intestine, if it isn’t so bad. It all depends when they go inside what it looks like. I am so nervous because like I said before, I don’t want a bag whatsoever… even a temporary because all temporary things don’t always stay temporary. I am so scared that even though they say ‘temporary,’ it will end up being permanent.
I am also bringing my pillow with me. The doctor told me not only do the pillows in the hospital stink, but also he wants me to feel as comfortable as possible. So, since I will be in tremendous pain as it is, the best thing would be to have my pillow with me. After all, you know nothing is as good as your own pillow that you sleep on every night. I will be in the hospital for like 8 weeks and having extensive and intensive surgeries. So I have to be as comfortable as possible. So that is just another thing that we have to fit into the suitcase.
Well… I guess that is about it for now. If you know any good books or movies, please let me know because I don’t want to be bored in the hospital. I already downloaded a few movies that I have been waiting to see such as INTO THE WOODS, ANNIE, and some others. I downloaded my favorite authors’ latest books. I got some books from James Patterson and Sophie Kinsella. There is a new book I was looking at about a doctor’s first year. I saw it written up in a magazine, so it looked good. You can always email me at Femirsky@gmail.com. If you want to keep in touch as well, please feel free. I would love to talk while I am there. So if you email me we can work out texting.
If you can think of any way of donating or fundraising, please let me know because we desperately need all the help that we can get. I can’t tell you how much we appreciate all the encouragement and support that you have provided. I never would have made it this far without your support.
Well… gonna go rest. Last time I am going for ketamine and everything in the morning. Then I go for surgery on my colon on Friday to Clean it out, as well as down my esophagus and then it is off to Cleveland. So with everything happening, ill try not to be a stranger.