Just wanted to write tonight because there is stuff to be known and tomorrow we are hopefully off to the Cleveland Clinic in Ohio. Yup… dad and I are off on another adventure!! So I just wanted to write and let you know all that is happening, as well as let you know about the upcoming trip!
To begin with, I want to announce that unfortunately the walk that was scheduled to bring awareness for my illness and to hopefully bring the much-needed funds for the lifesaving treatment that I need has been cancelled for this weekend and has been rescheduled. Due to the weather and an offer to have it “recorded” and made into a full-length (90 min) documentary, we thought it was best to have it postponed for about 2 weeks. I am so fortunately for this lovely lady to be willing to do this WALK for me across Fire Island. She is definitely an angel.
The walk across Fire Island will be about 35 miles long and will take over 2 days. The lovely lady willing to do this walk is a lady who I never met, but we have a lot in common. She is finding it in her heart to do this walk and trying everything in her powers to help to bring me the much-needed funds that I need in order to receive the lifesaving treatment that I desperately need. She has even started a group page on Facebook that you can join and follow known as FEET FOR FALLON 2014. Please go to it and “like” it and follow it so that you can know all that is happening.
Besides the walk that was supposed to take place this weekend, I am leaving for Cleveland Clinic on Sunday. Unfortunately though we don’t have the funds that we need to stay the amount of time that we really need to stay. The doctor really wanted to admit me as well when I see him on Monday, but unfortunately we are short on funds and therefore, it is really impossible to stay there an extended amount of time this time.
When we go to Cleveland this time, we are going to be meeting a ton of people. We are going to Cleveland Clinic because the transplant team wants to see me because I am soooo very sick. In fact, I have such severe gastroparesis and so very sick that they are thinking about giving me a multivisceral transplant. Originally, all that the surgeons wanted to really do was take out my colon even though my entire GI system was affected. Yet, the transplant team feels I am too sick and just taking out the colon will not be enough. They feel that it will go far beyond that and will include transplanting the colon, small intestine, stomach, pancreas, and liver. It is a massive transplant that is supposed to be extremely dangerous. In fact, it is the most dangerous transplant you can have. Any transplant that deals with the intestines is considered the most dangerous because it deals with the circulatory system and all different veins and such instead of nerves and such. Only 6 hospitals in the country really do this surgery because of how rare and risky it really is.
It is such a rare and risky surgery that only very few surgeons do it. Fortunately, I am scheduled to see Dr. Kareem Abu (I call him Dr. Kareem and so does everyone else because no one can pronounce his last name) and he is supposed to be the best surgeon out there. He has done the most transplants ever and there is supposed to not be a complication that he hasn’t seen. Well… I wonder what he will think of me because I am such a complicated condition. After all… I tend to stomp all physicians because there is really no physician that has seen anything that is happening with me. After all, I usually have doctors running all over the hospital with their feet not even touching the ground because they are scared and don’t know what to do because they see things with me that they never have seen before. So I am only hoping that this doc will really be able to help me.
However, I am still crossing my fingers that I will be able to see Dr. Kareem even though we are scheduled to see him first thing Monday morning. The reason I say this is because since he is the best surgeon and the head honcho there, I was told that if an organ becomes available while I am there, he will have to miss my appointment and go to the operating room instead to do the transplant. I can’t blame him because I would definitely want the same respect if the shoe were on the other foot. You can’t control when a transplant comes available and if a transplant does become available, you always want the best of the best doing the transplant. So hopefully I am not going to be making this trip all for nothing.
Not only will we be seeing Dr. Kareem, we will be seeing other doctors as well. We are also scheduled to see another doctor who is supposed to be the “father” of TPN. I have had TPN in the past and unfortunately, it has failed me multiple times. Yet, I only weigh in the 60s and my BMI is like 10.8, which is extremely dangerous. I desperately need to gain weight and losing even an ounce is extremely crucial. With the weight that I am, it makes any surgery (especially a transplant) extremely dangerous. Therefore, they want to try to make gain some weight. I can’t eat or anything by mouth because my entire GI system is gone. It is completely paralyzed. All my organs from my stomach to intestines are basically ‘dead’! Even my esophagus doesn’t work. I can’t even swallow anything thicker than water and even with water, I basically have no ‘swallowing.’
I barely can tolerate eating or drinking anything as it is. I am so limited to what I can eat and drink. I only really can eat egg whites and ice cream … and even that is extremely difficult. I also have to be careful with eating and even taking my 50 pills daily because they keep getting stuck in my esophagus because my esophagus doesn’t work. There are so many times that the doctors literally have to go into my esophagus and remove it because it is stuck. My esophagus is so bad that one shrimp or something takes up my entire esophagus.
I can’t even drink anything because I keep bloating up. If I want to drink anything, it has to be made into a slushy. I can definitely forget about drinking water because that is the absolute worst. I have learned though how to make soda slushies in like 3 hours. It stinks though because if I forget to put a drink in the freezer, I have nothing to drink because I have to then wait for it to “freeze” and become a slushy. I have to be so careful of what I drink nothing quenches my thirst no matter how thirsty I am. Then I have to worry about how much I drink because the slightest amount that is considered “too much” for my body (i.e. a cup that my body considers too much) will trigger off my autonomic dysfunction and really bloat me. I also have to be careful because every time I drink, it is also spilling into my lungs and making me ‘drown’ in my own fluids. I am aspirating like crazy as it is, and when I drink… it is making it even worse.
Therefore, the doctors have tried various ways of feeding me to try to build me up and give me nourishment. They have tried TPN multiple times, but it has been unsuccessful because it has burned up my veins and I have not been able to tolerate it. I have also tried J-tubes and G-tubes, because some individuals have difficulty digesting nutrients in their upper GI tracts, but their lower GI tracts function very well. But since the organs are already ‘failed’ and giving me problems, those tubes don’t really work on me either.
So I am going to be meeting with this doctor who is supposed to be one of the “founding fathers” of TPN. He really must be good and know what he is doing because he graduated medical school in 1966. So he probably has seen it all. When I spoke to the transplant team, they said that he is the absolute “best!” After all, he is the one who developed Cleveland Clinic’s Home Parenteral Nutrition Team.
However, there is so much to be done at the Cleveland Clinic and unfortunately there isn’t enough money to stay there for the duration that is needed. They really wanted to admit me and do some procedures on me as well there. Additional testing and procedures will be needed because of the transplant that is needed and they don’t know what is going to be needed before they see me. Therefore, they can’t set anything up without seeing me first and by the time they see me and everything, it will most likely mean that it will cause me to remain there longer than if everything was scheduled before I arrived because so many people go to the Cleveland Clinic and they are already scheduled with previous appointments. So I will have to wait my turn. However, since we are lacking funds, I don’t have the money to wait around there.
Therefore, since we are lacking the funds, we are planning on now going and getting everything together and then we will return at a later date to do everything. The group will have a meeting and this way when I return, we will be able to do everything that is needed. Yet, it is so important to have these funds as soon as possible because I am really deteriorating and I am not going to make it much longer. The sooner I have these funds, the faster they will be able to have me return. So if you can please spread the link to my fundraising website (www.gofundme.com/FallonMirsky) or think of a way to fundraise and email me at email@example.com, I would really appreciate it. All donations are welcome, as no donation is ever too small!
To make matters worse, I had surgery today like I always do every Friday to get my intestines cleaned out. I am starting to get a new appreciation for Fridays. I am starting to understand really why they say “TGIF!” It is the only day that I actually get relief. I look forward all week to this day. I think it is pretty sad this is what my life has come to looking forward to. Yet, you can’t imagine how much better I feel when I have this procedure performed. It really makes a difference. Not only does it make me physically feel better, but also it is a necessity because if it is not done, nothing passes out. Therefore, whatever are in my intestines remains in there and it literally ‘rots’ and ferments. The doctors are so worried that it will result in me going into sepsis or that it will rupture or perforate my colon. If that should happen, I will easily die.
However, it is getting harder and harder to pay for this procedure because even though the insurance company is paying for this weekly surgery for right now even though it is not completely covered. We are running quickly out of the funds on hand to pay the difference and copayments that are needed. Therefore, unless we come across some donations, I don’t know how we are going to continue to pay for this treatment… which is something that I desperately need.
In addition, we all know that they are not going to be paying forever, as it is extremely costly. I only fear the day when they tell me that they won’t cover me anymore. I don’t know what I will do because I desperately need this procedure. I need this more than they know because it is the ONLY thing that helps.
Well, today we had a little emergency when I went to have the surgery. I was getting undressed and the alcohol sanitizer that the hospitals have hanging on the wall happened to squirt on me. For some strange reason it started giving me such an allergic reaction that I started turning all red and itchy and in pain. It really triggered off the autonomic dysfunction and everything.
When the nurses saw what was happening, they were shocked. I was shocked too because all that squirted me was the hand sanitizer that they have hanging on the wall. Who would have thought that would do anything? They tried various things to try to calm it down but nothing worked. The allergic reaction was so bad that not only did it stir up the autonomic dysfunction, but also my blood pressure skyrocketed. Instead of my blood pressure being the usual 80/60, which is usually what it is at the max, my blood pressure was actually reading like 130/90. They knew something was wrong.
So the doctor brought me into the OR quickly to try to give me meds by IV to stop the reaction. I guess it worked because when I woke up, I was better. But with everything going on… I never got to give my dad a kiss like I usually do.
So… I guess that is about it. This is going to be a very busy week for me. Today is George’s birthday. I can’t believe he is 19 years old. Thank goodness turtles can live for 50 years because this way I still have many more years to come with him.
Speaking of birthdays, my mom’s 61st birthday is quickly approaching, as her birthday is August 9th. I really hope to make her birthday special. She is such a special mom who doesn’t deserve this life that she is living. She has given up so much in order to help me and to care for me. She is not well herself, as she suffers from multiple sclerosis. Yet, she handles her illness, my dad’s business, the house, and me! My mom is simply the best. She is WONDERWOMAN!! She is the type of mom I hope I become if ever become a mom. She is absolutely the BEST!
I only wish I could make my mom’s life better!! She hasn’t been out to eat at a restaurant because I can’t go out or on vacation in the longest time. All her life consists really of is going to work and coming home and taking care of me. She doesn’t even buy herself anything to enjoy, as she would love to buy new clothes, furniture, etc. It really is no life that anyone should be living… let alone someone as wonderful as my mom. All she does is remain in the house looking literally at the 4 walls. Her only source of ‘fun’ is playing the games and apps on her iPhone and Kindle. Even when we go “away” to appointments, everything at home is left on my mom’s shoulders to handle.
Well… I guess I will be going. Have so much to do in preparation for tomorrow’s trip and not feeling well. Thanks again for all your encouragement and support. I would definitely have not made it this far without you. Wish me luck in Cleveland. We all know I am going to need it. Of course I will keep you posted with all new info.