I know… it has been quite some time since the last time I have written. It doesn’t mean that I had nothing to say or that nothing was the matter or that things weren’t worsening, but it was just the opposite. So much has actually been happening and to be quite frank with you, I am doing so horrible that writing these ‘blogs’ are actually getting harder to do.
But to be honest, even though these blogs might have to become less and less, I am hoping I will not have to stop them. These blogs are my only outlet to let me let out my feelings because I don’t have anyone to really ‘talk’ to (I can’t talk to my parents because they are working so hard and so overstressed that I don’t want to over burden them more with this stuff; Believe me… I already cause enough havoc and troubles in their lives. They are so exhausted as it is… they don’t need the extra burden of me laying my bothersome problems on then. Plus, with them working all the time. They come home so exhausted that they can’t really even handle anything more…. It also wouldn’t be fair to them either). In addition, this is a way for me to get my feelings out on paper and to seek things out. I also made a promise that I would let everyone know along the way what was happening because it is such a ‘mysterious’ disease that no one has really known about and this is the only way people are going to learn about it and bring attention towards it; it is the only way I can leave my legacy even though I would have much rather have became a doctor (my true dream). But things happen for a reason and this disease has not only been hurting me deeply all throughout it, but it has also taught me so much like how much to appreciate your health because it can be taken away in an instant and ‘health is wealth.’ Without your health, you really don’t have anything!
Finally, these blogs have been a way of trying to raise money for my lifesaving treatment. As you know these illness are very painful, debilitating, and life-threatening. They are also extremely costly to get the lifesaving treatment that I desperately need to save my life. But from being sick for such quite a while, we have used up all our funds and as a result, we don’t have the money for the treatment needed to save my life anymore. So I really need others to donate money so that I can get the treatment that I need to save my life. I know that I sound like a broken record already but without treatment I will die. I am rapidly deteriorating and desperately need help. Yet without the help of others… there is no way I can get it and the end result will be death. I am walking such a fine line right now that all I can do right now is plead through these letters.
Things have gotten so bad lately that I barely even move anymore. Any physical exertion is just way too much for me. I literally go up to my bedroom to take my medicine and pass out from them at 9 PM, and that is where I stay until about 1 in the afternoon the next day. Even that is getting too hard to get out of the bed at that time. But to spend so much time in bed… I know I have to at least get out of bed to do something before I officially ‘waste’ away. Even just getting up out of bed and going to the bathroom, which is the next room away is getting to be too much.
Anyway… I also wanted to write to you and let you know the latest as to what is happening. A lot has happened since the last blog. What a day I had today. It was such an unlucky day… but I was all putting it up to the fact of it being FRIDAY THE 13th. I am not usually “superstitious” and don’t believe in FRIDAY THE 13th, but with the luck that I was having… there was just no other answer. I had to blame it on something.
As usual, I had my usual surgery to clean out my intestines today because my GI tract is completely “dead.” Without the doctors cleaning them, nothing passes through and the doctors are afraid that I will perforate my intestines and I will go into sepsis or something and die. Then we would have a real disaster on our hands. Anything that I take in, whether it be food or meds that don’t end up getting vomited backup because of the extreme gastroparesis literally remains in my colon and rots. Therefore, I am getting toxins leaking into my bloodstream and they are intoxicating/poisoning my organs and brain, which is essentially killing me as well. So it is very important that I have these surgeries to try to clean out as much of the colon as possible because otherwise I am chancing perforating my intestines and going into Sepsis, as well as poisoning my entire body…. Including my brain.
However, due to my overall situation getting so much worse, my stomach is not emptying at all anymore basically. The anesthesiologists are getting petrified for putting me under anesthesia on a ‘full’ stomach because I can easily aspirate and then I will obviously die. So… the doctors are making me literally fast for 48-72 hours a week prior to the procedure, which is something I can’t afford. I weigh so little already (in the 60s) that even losing an ounce is extremely crucial and can be life and death.
So the doctors are saying that something has to be done ASAP and I have to get to Cleveland Clinic to have this surgery ASAP already because time is not on my side. I literally have only weeks on my side to live because if I don’t have these surgeries every week to be decompressed, I will die in a matter of weeks. The same goes the other way. If I fast for 48-72 hours every week so that I can have the surgeries to try to ‘buy’ this much needed time… I will die because I am going to lose way too much weight. So I am between a rock and a hard plate.
But in the meantime we don’t have the funds to go to Cleveland Clinic to have the necessary surgeries to save my life. That is why I am pleading to please help me with raising money because I desperately need these surgeries now or I am going to die. I desperately need surgery for my heart, placement of a central line, removal of my colon, and a multivisceral transplant. It is a lot and I will be there for quite some time. So not only do we have to worry about paying for the medical procedures, which thankfully we got the insurance to help out a bit with, but we still have to pay for the living expenses, medical expenses etc. In fact, we are even having trouble paying for my day-to-day treatment now to buy me time so that I can even make it to Cleveland. We can’t afford the appointments, copayments, procedures, medications, etc. because they are definitely not all covered by insurance and they are very expensive. My meds are extremely expensive, as I takeover 50 pills daily and they don’t even come from the US and some are injections. I also have to worry about traveling expenses and everything else. Our health insurance costs so very much as well, but we need to have it because the little that it does pay… at least it is paying for something. It stinks when you are sick. Health insurance is good when you don’t need it… once you do … watch out. Things are even more expensive for me too because all treatments that I get is out-of-the-state and therefore, I am not covered really by insurance.
So to start my day off horrible today, I didn’t have a good time today when I went for surgery. Unfortunately, we were a bit late to the hospital today because the girls in my doctor’s office told us a different time. I just so happened to have the recording on my voicemail to prove to the doctor that the girls told me a different time than I was supposed to be there, but the doctor didn’t want to hear it. Anyway… I ended up having to stay there even longer than usual and my meds wore off too during this time. So you can just imagine how much pain I was in. All I wanted was to go home already, but I knew how imperative and important it was to have this procedure doe.
Oh by the way… I found out that the anesthesiologist that I happened to love and used to always work on me happened to be the one that was the actual anesthesiologist that was in the room working on Joan Rivers when she died. It’s a shame it had to be her because she was really nice. I kept telling my dad that it had to be her, but we didn’t know for sure. However, the truth finally came out the other day that it was indeed her that was the anesthesiologist treating Joan when she died. I kept saying to myself…. It could have been me!!
So since that anesthesiologist hasn’t been there, I have been having another anesthesiologist usually taking care of me since the time of Joan River’s passing, which has been for the past 6 months. So at least this new anesthesiologist already knew all about me and how to take care of me, as I can’t be treated like a “normal” patient. Anyway… today they happened to have a brand new anesthesiologist and therefore she knew nothing about me. So… since she didn’t understand my case she ended up keep hurting me because I can’t be touched like a regular patient. For example, I am so extremely hypersensitive that everyone in the room even knows not to barely touch me until I am “knocked out” and that I can feel everything … even the gentlest breeze. The doctors also know how I can’t tolerate the IV and such, but she kept putting the IV on a fast rate, which felt like shards of glass through my veins. It was horrible and I couldn’t wait to get out of there.
Because we had to wait so long for the appointment and for me to recover this time, we also then ended up hitting rush hour traffic on the way home. So… this was just more added stress and pain that I didn’t need because I was already in enough pain as it was. All I wanted was to be home already in my own bed with everything happening… not to mention that I was freezing because of how cold it was outside and cold is definitely not good for me. When I got home, it literally took forever for me to warm up.
But thankfully, things started to change as the night proceeded. The doctor from the Cleveland Clinic called me tonight and I definitely wasn’t expecting it. Not only did he surprise me by calling, but also he surprised me by spending like 2 ½ hours on the phone with me until after midnight. He would have talked longer, but his phone got disconnected. I was totally shocked that he did something like that. Talk about a dedicated doctor.
I have the best doctors at the Cleveland Clinic. The doctor that called me tonight happened to be head of the anesthesiology department and one of the big shots. He was telling me everything that was going to be taking place when I come to Cleveland, as well as how desperately it was needed. He was dead tired, as he did 5 liver transplants in the past 5 days and he was totally exhausted and yet… he was on the phone with me all this time with me. He told me that even though I have lost a lot of ‘faith’ in doctors, I didn’t have to worry about that with him because he was an honest doc and was going to do everything in his power to help me. Most off… he wasn’t going to tell me any ‘lies’ or BS me like any of the other doctors have done!!
I am so fortunate to have him. Not only did he say that I could reach him any time of day… day or night and when I am in the hospital he would make sure things got done… he also told me that even though he is one of the big-shots in the hospital, he is going to make sure that EVERYBODY is familiar with me in the hospital. In fact, the whole hospital knows that when I am in the hospital, I take priority and if there is another case, I get the priority. He also said that no matter what I needed… he would be there to sedate me. He would be there to sedate me for the littlest procedure such as a stress test to the major stuff like the surgeries for the colectomy and the TPN. I honestly can’t believe that he did that.
The doctor said how I am in the best of hands with them. For the first surgery, I will be having the heart surgery as well as the placement of the central lines. I need the central lines because not only will I need them for the later surgeries, but also since I am getting so ill…. I need something so that the doctors can get emergency access into me. Since I can’t tolerate IVs, he is willing to put me to sleep first just by using gas, and then he will start the IV lines. He is also going to be using this new lidocaine that came out on the market that actually numbs the site for at least 3 days instead of just temporary like the regular lidocaine does.
As I need ketamine because of my illness, as ketamine is the only drug that really relieves the pain of this illness and has the potential to reverse this illness (if given in a high amount and that is why I need to go to Mexico because the amount I need is not FDA approved), it also has the potential to not make the disease spread and hold the disease at bay. Therefore, he will be using the ketamine during the operation and in the PACU. They will then try waking me up and re-evaluate me. If I am in bad shape, then they will put the ventilator back in me and keep me on the ketamine and bring me back to the ICU.
For the Colectomy, the same thing will happen except I will not be woken up. I will be immediately brought to the ICU afterwards and remain there for at least a week. So I will be unconscious for a good part of that week as well and breathing on the ventilator. The doctors want my body to ‘rest’ as much as possible.
In addition, since I am a ‘special’ case… he is willing to put me asleep for everything I need to go through including stress tests and everything else. All I need to do is page him or call him and he will come in from work or home and he will do it. What an amazing doctor. I also found out that my doctor also worked on all these famous people too like Robin Williams. He told me that at 3 AM he was giving the patients a big show two days after he had the big heart surgery at the Cleveland Clinic.
The Cleveland Clinic is really the best place for me. Between my team and the overall hospital, I am in really good hands. They have a team where if you are in pain, you can activate them and within 15 min they are at your bedside for pain management and everything else. They are really going to make sure that I receive the best care,
When I know more about what is going on… I will let you know, but the big thing now is getting there. I need to get there ASAP. So if you can think of any way of raising the funds so that I can get there…. I would appreciate it. After all, it is going to be quite expensive since we have to live there for quite some time,
I am selling chocolate and lollipops. If you are interested in selling a box, please let me know. The boxes contain all different types of candies as well as lollipops depending what you want. They even have boxes that just consist of “snacks!!” If interested, please email me at Femirsky@gmail.com. Any help would be much appreciative.
I am also selling the bracelets still that say “HELP FALLON”. They come in pink or blue and go for $5 each. If interested in purchasing or selling, please email me as well at Femirsky@gmail.com.
I also recently found a neurologist who knows my disease so incredibly well. HE knows it better than anyone else I ever knew. I am trying to get an appointment with him, but of course he doesn’t take insurance, so this of course going to be extremely expensive, and he also has a long waiting list. I have to wait until the summer to see him, which is time that I can’t afford to wait. But I still made the appointment because I am hoping I will be able to go for the surgeries in Cleveland Clinic and then I will be able to go to this doctor in summer to finally finish getting well. This doctor isn’t around the corner though, so besides him not taking insurance, we will also have traveling expenses as well because he works out of DREXEL UNIVERSITY in PA.
Well… that is about all for right now. I am not feeling well but I wanted to let you know some of what is happening. Hope you have a very Happy Valentine’s Day.
Thanks again for all your support.