Sorry that it has been awhile and I haven’t written, but things haven’t been going too well. Plus… a lot and I mean A LOT has been happening and I haven’t known where this roller coaster was going to stop. I didn’t want to write about things to only give you false information or to have to correct anything. So I thought I would let the smoke clear out and get all the facts straight before I went and said anything.
The smoke is still clearing and the dust is still settling, but I do have news to share and unfortunately, the news isn’t so ‘good!’ As you might have heard, I will hopefully be leaving Sunday for California. I know… you are probably wondering, “Whatever happened to Cleveland Clinic?” So I figured I would get this out into the open and answer this question right off the back.
The fact is that the surgeons at the Cleveland Clinic backed out and I have gotten way to sick and “fragile” to go there. Unlike other hospitals, the actual surgeon that is actually going to be doing the surgery on you doesn’t admit you. You need other doctors such as a “regular” med-team to be the admitting physicians. Therefore, after I waited so long to be admitted due to the facts that I had no money to have all these complicated surgeries and live down there for that amount of time, I deteriorated immensely. That being said… the admitting team refuses to admit me despite the fact that my head surgeon is still willing to do the surgeries on me. Yet, since the hospital doesn’t give the surgeons in the hospital technically “admitting” privileges… I am kind of out of luck because no one wants to take my case on.
Doctors think that I am way too fragile, complex, and complicated for them. Even though my transplant team and head anesthesiologist has assured them that they would be doing everything and just needed them to “admit” me and to do the regular daily stuff like the blood work and everything that a “normal” patient would receive on a day-to-day basis, they still refuse to do it because they feel I will need more care than that and they don’t want to be bothered. So despite all the pleading and begging, and even though my surgeon wants to pull the trigger because if I don’t do it now it will be hopeless, the I still need the admitting doctors and they don’t want to do it. So my surgeon’s hands are technically tied and I have no other choice but to not to have the surgery there. I would never have thought even in the first place that I wouldn’t be admitted under my surgeon. I thought that since I would have him as my head doc, I would be admitted under him… just like I have always done in New York, California, etc. I guess this is how they keep their hospital working on a sufficient basis and keep each working and focusing in their field. They don’t have to worry about doing anything else but what they are trained and ‘hired’ to do. You know? I can see where they are going with this thinking, but I am not quite sure if I agree with them.
So that still leaves me though with no doctor and it leaves me not receiving the life saving treatment that I desperately need. I don’t understand why this whole world has to depend on money. If it wasn’t for money, we would have been able to afford the surgeries that I needed at the Cleveland Clinic and I wouldn’t be up in this predicament. I wouldn’t have deteriorated in this way in the time we needed to try to get the money and as a result, the “admitting” team wouldn’t have chickened out. But… apparently this isn’t the world we live in and as a result, I am now forced to move on.
I can’t stop walking, but have to keep going. I don’t know where I am “walking,” but I know that I am still walking. The doctors in the meantime only gave me 6-8 weeks left because of the way my body and organs are functioning. I did notice a lot of different things that are occurring that I never experienced before, so to be honest… it is scaring me a lot. I am a very complicated individual and I do need a very complicated and radical procedure. It is very difficult to find a hospital and surgeon that is competent and able to do these surgeries and able to handle me as well.
But my team has pointed me in two directions to go into. They pointed me to a top surgeon in California called Zuri Murell and to the Mayo Clinic. They are both the only hospitals really capable of handling me. These doctors are very fine physicians and were possibilities we were thinking about going to see besides the Cleveland Clinic in the beginning, but what made us go to the Cleveland Clinic was that it was the ‘cheaper’ route. So I am scared now that if I couldn’t afford Cleveland, how am I on earth going to afford these other doctors. I know I am desperately running out of time by the way I am looking, feeling, and the way doctors have told me. I don’t know how I am going to do this especially when I have to find ways of coming up with even more funds since they will be costing more than the Cleveland Clinic. Whereas the insurance company did pay a part of what was happening at the Cleveland Clinic, we will be responsible for the total cost at the Mayo Clinic and if we go with Dr. Zuri Murell in California.
I don’t know how on earth this is going to happen. We will have to pay for everything from traveling arrangements, to doctor fees, to hospital fees, etc. I don’t even have “out-of-network” benefits, and therefore, I have nothing to take the burden off of us. But this is like the only and last place we can turn to. We are kind of out of luck after this and the clock is ticking down. I am like a grenade and I have been detonated. I only hope that I will receive the necessary donations/funds that I will need to be able to have these lifesaving surgeries and all hope is not lost. There is so much people in the world and if everyone would just donate even a $1…. I would be ok. I just need help and I need to find the kindness in everyone to help make that happen. I really appreciate and thank all the people that have helped me previously but this operation is going to be astronomical especially when everything is going to be out-of-pocket and I am going to have to live there for a while. It is especially going to be tough because dad will have to be with me therefore awhile and he won’t be able to work either. I have already seen what has happened if I have to “wait” because I don’t have the money and to be honest with you… I don’t have the time for that anymore.
I don’t have the time to postpone surgery anymore. My body and organs can’t take it anymore. I am in so much pain and my organs are shutting down. I can barely function and even have to wear diapers because my GI system isn’t working. I am losing weight, which is not a good sign especially when I am already in the 60s, and the doctors are so worried that I am going to rupture my intestines or go into sepsis, which would be a disaster and basically automatically kill me.
So I am just hoping and praying that I get enough funds and donations. If you can please be of any assistance, I would really appreciate it. I need the money to have the operations, as well as to stay down at the hospital and live there for many weeks without my dad working. I can’t afford to “wait” anymore. So please. I am begging. If there is anything you can do, suggest to me in order to raise money, spread the word, pray…. I would really appreciate it. Please help me. I have been robbed of life so much and I want to live so badly. I have so many dreams and so much I have not been able to do and want to do. I even want to become a doctor so that I can make a difference in the world. At least if something does happen to me, I hope that through these blogs I may be able to help others in learning about this illness since a lot is not known and I can show others not to give up no matter what. I want to show that no matter what happens, you need to keep walking… even if you don’t know where you are going.
Even though things are going downhill quicker than ever, I still try to look my best. I am seeing and experiencing stuff that I never experienced or thought I would ever in my life. I never thought I would wear diapers all the time and I would be bleeding the way I am. I go through more bedding and clothing than you can believe. Even if it is for like 20 minutes, I can be covered in blood if I am not careful. You never know what to expect. It is horrible. I am so hungry and so thirsty, and nothing quenches it… not even IV. I can’t even go to the bathroom. Yet, I am trying to look my best even though I have notice some physical signs that have told me otherwise. But I have discovered that life is hard enough and if you can make yourself look good and feel good about the person looking back at you… then that is half the battle.
As it stands right now, we are hopefully heading to California on Sunday to see Dr. Zuri Murell. He is from Los Angeles and also supposed to be one of the world’s leading surgeons. It is amazing how the top surgeons barely ever take insurances. I don’t understand how they can do it. I guess they get enough patients that you need them more than then need you. Dr. Murell has conducted numerous, high-profile research studies and remains at the forefront of innovative developments in colon and rectal surgical techniques. His extensive qualifications place him within an elite circle of the top colorectal surgeons in the United States. He is also supposed to have excellent bedside manner, which is definitely a huge asset especially with me because everything with me isn’t straightforward and I need someone with a lot of patients and can remain calm and keep my dad calm and me as well. Dr. Murrell, a Beverly Hills proctologist, recently became Director of the Colorectal Cancer Center at Cedars-Sinai, the team that consistently pioneers colorectal cancer treatments. He is a member of the American Board of Colon and Rectal Surgery, the American Board of Surgery and the American Medical Association.
As of right now we don’t know exactly what to expect. At the very least, we know a complete colectomy (removal of the colon is definitely necessary). The colon is completed diseased and it is so diseased that it takes literally like over 5 people to navigate it. Just to get to the cecum, it takes over an hour. I have so many twists in the colon called “intussusceptions,” which would usually be an emergency, but because my colon is so distended, I have been able to live with it. The doctors can’t wait for me to take it out so that they can physically see it and measure it and everything else they need to do with it.
Even though my entire GI is completely basically dead, they are hoping that they might be able to get me through a colectomy and hold off the transplant for a while even though a multivisceral transplant is definitely a possible (small and large intestine, stomach, pancreas, liver). They know that the stomach and colon is gone and they are hoping that they can use the small intestine as the sole organ from the esophagus to the rectum to bypass the stomach. Hopefully this might alleviate the need for the transplant or be even able to delay having the transplant. But we won’t know until we see physically what the small intestines look like when they get inside. I just hope I don’t wake up with a bag. I guess I will know more of my chances of having a bag when I meet with Dr. Murell this weekend.
So I am leaving Sunday and I am kind of bittersweet about it. I am glad that they are fitting me in so quickly, but kind of sad because it is also Mother’s day and I can’t be here with my mom. Even though we really don’t have anything planned, it is still a “special” day that I wish I could have spent with her. After all, I only have one moms and she certainly is the absolute best. I love her to pieces even though it kills me that she can’t travel with me across the country to see doctors or go for treatments, but someone has to stay back and watch the business, house, business, etc. Someone has to try to make sure we come home to “something!” I just love her to pieces. But… hopefully it will all pay off by going to LA on Sunday. I will definitely keep you updated.
In the meantime, I am continuing the same regimen that I have been doing before and hoping to keep going as long as possible. I have ketamine treatments on Wednesdays and then surgeries on Fridays to clean out my intestines because nothing moves through and this is the only way of “cleaning out” my intestines. We are trying to buy enough time as needed, but I am definitely getting weaker by the day. We don’t even have a hospital around here to attend if something happens and if we need to go to the hospital because so many doctors and hospitals have told us “not to show up because they can’t help us.” So it is more important than ever to get to California or wherever to get this surgery because I am going to die without it.
So that is the big and upcoming plans and what is doing. I will write again soon, but as of now… I just going to go and rest because I am so not feeling well. I just hope that I get the necessary funds to have this surgery soon because I can’t afford to wait any longer. Not only can’t my body physically afford to do it, but also I can’t do it emotionally either. Plus… the longer we wait, the weaker and more fragile I am getting and the more scared doctors are getting. So please… please help me. If you can, please donate to my website at www.gofundme.com/help4fallon or email me at Femirsky@gmail.com. I will take anything… a prayer, a donation (no matter how small), a suggestive fundraiser, words of encouragement, even someone to even just talk to because you really find out how ‘small’ your life is when you get really sick because you can’t really do anything anymore. Despite the fact that I keep “walking”… I am definitely not the same person I once was no matter how hard I try. I again want to thank everyone who has tried to help me in the past. I def wouldn’t have been here today and made it this far without you.
So hopefully I will be writing to you next either right before I leave for Cali or when I get there. I have been trying to read, but it hasn’t been so successful. I have been trying to read some books of Joan Rivers because she really is one of my favorite people. She also has such a sense of humor that I am trying to use to get through this.
So… until next time!