I just wanted to write a brief update on all that is occurring because I will be leaving in a few hours for the hospital. I will be undergoing another surgery in a few hours. Aren’t I the lucky one? Hopefully it will be successful.
Well, like I just said… I am off to the hospital in a few hours for another surgery. It appears that this is going to be my new routine now until something is done. The surgery that I am having is that they are going to go into my intestines and colon and try to vacuum as much liquid out as possible. As I stated in a previous update, my colon has totally stopped functioning and as a result, I need to have it removed. It is extremely urgent that it happens because the doctors are worried that the colon is going to perforate or rupture and that I am even going to into sepsis. The colon is so “dead” that nothing is even making it into the sigmoid colon and the rectum is not working as well. Everything in my GI tract is a very thick liquid and it is just remaining in there with no place to go. I am constantly leaking “mucous” that looks like chicken fat and smells like rotten eggs because I am literally “rotting” inside because anything that is inside me such as the meds that I am taking or the food that I am taking in and not throwing up are not moving through. Therefore, the doctors are so afraid that I am going to go into Sepsis and die.
I really need my colon out ASAP. However, the problem is that there is really no hospital in the area that is equipped to handle my overall condition and do this highly risky surgery. So I need to go someplace else to have it done such as California or something. We are scheduled to leave on Tuesday for California, but it is all contingent on the funds available. Unfortunately our hands are tied and my health really lies in the hands of the rest of the world because we no longer can afford my medical expenses. We have paid for them for so long that the “well” has to dry up sooner or later. You know? So since my disease is so expensive especially since treatments aren’t always covered by insurance, we have exhausted all of our funds and can no longer pay for the much-needed treatments that I need. We sold whatever we could, made cuts wherever we could, but we still cannot afford the much-needed treatments that I require to save my life.
I really need to get to Mexico ASAP. That is the best place for me to be. It would be the answer to everything because it would get to the root of all problems since all of my problems stem from the neurological disease and autonomic dysfunction. When I go to Mexico, I will be the 38th patient to be placed into a rare and radical ketamine coma that is saved for patients who are the worst cases in the world and are unresponsive to other modes of treatment.
During this procedure in Mexico, patients are put into a ketamine-induced coma– essentially shutting the body down & giving it time to “reset” the nerves, brain and spinal cord. Patients are supported by a ventilator and monitored in the ICU. The hypothesis is that ketamine blocks the neurons and manipulates NMDA receptors which might reboot aberrant brain activity, the coma shuts down the nervous system, allowing damaged nerves cells to heal and “reboots” the patient’s brain, much like a computer.
However, even though it is a miraculous treatment, it is quite expensive and we cannot afford it at the current moment. It will cost us at least $100,000 and despite all the fundraising that I have done, I am still very short on the funds. But I desperately need to get there because I am running out of time and without this treatment, I will die. Doctors have already stated that I am a ticking time bomb that is going to detonate really soon. In fact, I have gotten so bad lately that we think that time has even come. I have no other choice but to go to Mexico to receive this treatment because since Ketamine is considered a schedule 3 drug in the U.S., only a small amount of ketamine is legally allowed for medical treatment according to federal law. The high doses required for the Ketamine coma are currently only legally available in other countries. We are scheduled for this coma to take place in July, but we honestly don’t know if I will make it that long because I am really getting bad. It has gotten to the point that we take each day as it comes and even making it through a day or night is not a guarantee anymore. Yet, I continue to push on hoping that I will be able to have those funds so that I can get the Coma in July and get better.
In the meantime though, we really need to buy time. I am drastically declining and unless something is done, I am definitely not going to make it to Mexico. My entire GI tract has shut down and as a result, I am suffering from severe Gastroparesis. I ideally need a multivisceral transplant, which incorporates receiving a new stomach, small and large intestine, liver, and pancreas, but it is a very risky and dangerous transplant. Only 6 hospitals in the country perform this transplant and it is the most dangerous transplant you can have. The doctors have said that it is has gotten to the point that I desperately need this transplant, but I am also so sick that they don’t even know if I will be able to survive it.
Therefore, the doctors are trying to work with what they have and what they are dealing with and as a result, I need to have my colon removed. Yet, in order for this to happen, I need to have it in a place that is situated to deal with my overall condition because it will easily exacerbate my underlying neurological condition and autonomic dysfunction. Any bit of trauma makes my disease worse. I am also in no state to be operated on because I am very high risk, as I only weigh in the 60s and have a BMI less than 10.8. With all my complications and organs shutting down, it is a real risk to undergo a huge surgery like taking out the colon and therefore I need to be in a hospital that is best equipped to handle my overall condition and me. I at least need to be in a hospital that will be able to give me ketamine around the clock because ketamine is the only drug that will hopefully stop the disease from spreading because we all know that when I have the surgery that the disease will spread because of the traumatic experience that will be occurring.
So we are off to California on Tuesday to Cedar-Sinai hospital in Los Angeles. This will be the first time that I will ever be in LA. I am really excited to go because I am hoping that they will be able to help me. I also am hoping to be able to see some real movie stars. I have this vision in my head of what Hollywood is like and I can’t wait to actually get to experience it. I only wish I was well enough to actually enjoy my trip and do some sightseeing.
If I was well and this was a “vacation” instead of a trip to the hospital, I would probably have the time of my life by going to LA. I can’t wait to see everything that LA has such as Rodeo Drive, the sign that states HOLLYWOOD on the mountain, Disneyland, Santa Monica, all the movie stars, seeing the Stars on the sidewalk, etc. California, especially LA, seems like the coolest place. The hotel said to me that since I can’t really get around to do anything that they will give me a room overlooking the Hollywood mountain that has the sign that says HOLLYWOOD. So I am really excited. I told my dad that when I get better… We are definitely going to Disneyland before we go home because that is one dream that I have.
So we are all set to leave on Tuesday, May 13th, for California. I just hope that we get enough funds to go because I desperately need this trip. Like I said before, I am drastically declining and definitely need something to be done to ‘buy’ time until we can get to Mexico. I really need to have my colon removed especially before something else happens because it is already over dilated and filling up my pelvis.
Since my colon has gotten so bad, I am now going to be forced to undergo surgery every week now until I have the colon removed or a better option becomes available. That is why I am going to the hospital in a few hours to have the operation. They are going to be vacuuming out the mucous and liquid that is in me because otherwise they are scared it is going to perforate and rupture. They are scared that I am going to go into Sepsis, and that will be the end to it.
However, this surgery isn’t easy on me at all. What stinks too is that it isn’t permanent. They can only vacuum so much out because the mucous and liquid that is in me is so much and way too thick. In fact, the doctor told me that it keeps clogging up his tubes and they have to keep unclogging it. In addition, even though they do vacuum it out, it only comes back and that is why I have to keep undergoing the surgery over and over again.
Thank goodness I have the best dad in the world because he has been taking me everywhere. I can’t thank him enough for all that he is doing. I am so scared though that something is going to happen to him because he is no youngster and he is so overworked. He only gets about 4 hours sleep a night and he is so tired. It isn’t even where his job is a ‘desk job!’ He is constantly on his feet, as he is exerting himself constantly. He basically puts in full days worth of work, he takes care of me at home, he takes me to all my appointments, he takes me to all my treatments, etc. I just don’t know how he does it. I just wish I could make it better for him because he definitely doesn’t deserve this life.
I know that it hurts him so much to see me like this. There is nothing that he wouldn’t do to help me. That is why he is working so hard. He is trying so hard to help me and to get me the medical treatment that I need, but despite all his trying… it just isn’t working. He keeps telling me “I am not going to let you die,” but I keep telling him “it is not in your hands.” I know that if he could… he would get me the medical treatment that I desperately need. I know it hurts him tremendously to know that I need this treatment and especially to go to Mexico where I can essentially be cured, but I get it because we can’t afford it. He works harder than ever to try to be able to afford my medical expenses, but it is like a “no win” situation. Between my very expensive medical illness and the bills of the house, it is just snowballing out of control. I never thought it would have gotten so bad. We can barely pay the mortgage, utilities, etc. You can’t imagine how even putting food on the table has become a huge task as well. We haven’t even celebrated birthdays or the holidays including Thanksgiving or Chanukah or anything because we have no money to do so. It really is a shame how bad things have gotten.
Everything is dependent on the funds that we raise. It stinks that my life basically rests in the hands of the world because we cannot afford it ourselves. We can’t afford to go to the doctor appointments, treatments, medications, etc. There are so many times that I don’t even know until last minute if I will have enough money to go to an appointment to see a doctor. Even the medication or treatments that can help to “alleviate” the pain even a bit like the wonderful ketamine that I take at home has to be curtailed because we cannot afford it. So all that is left is to suffer.
I can’t thank you enough for trying to help because it is so much needed. My health has taken the biggest downturn and is failing in the biggest way. I just wish I could close my eyes and sleep forever because I am suffering so much. I wish the tightrope would just break already instead of leaving me out there to straggle and suffer because I just can’t take it anymore. The “suffering” is the worst part. I can’t take it physically, medically, emotionally, psychologically, etc. anymore. Sometimes I just wanna die already because the suffering is too much to bear.
Dad and I know deep down that I am never going to probably get well or get to Mexico because the amount of money that we need for that to happen probably isn’t going to be attained and we cannot afford it ourselves, yet we keep hoping and praying while we sit and watch me deteriorate. That is why I not only plead and beg for donations. Not only do I not only want to get well so that I can regain my life and become the doctor that I have the desire to be or to be able to be “normal” again, but I want it also for my dad.
Sometimes I think how “easy” it would be to get the needed treatment considering how many people exist in the world. I mean there’s so many people and if they would just donate even $1 (which we all know would clearly not kill them… It’s a matter of not spending 100 Pennies or not buying a pack of gum or a cup of coffee or something) then I would easily have the money to b able to go. As of March 26, 2014, it is estimated to number 7.161 billion by the United States Census Bureau and therefore, getting 100,000 people to donate that little $1 should be no big deal. You know? Sometimes I really wonder where the problem actually lays or what is wrong with society that people can’t help others?
If something should happen to me, I don’t think my dad would ever survive it. I wanna have him see me become a doctor, I want him to walk me down the aisle, I want him to have his life back, I want us to have “fun” again, I want to be able for us to be a “normal” family again so that he can enjoy his retirement (if he can ever do that because with the debts that we occurred… I doubt that will ever occur). My dad is such a special person and certainly doesn’t deserve this.
In the meantime, I have really been lucky to receive two special gifts. One gift that I received a shirt that was signed from all the hosts of AMERICA GOT TALENT. I am an avid fan of that show and a very dear friend got me an autographed shirt. I couldn’t believe my eyes that she actually got me a shirt from them!! It really made my day!!
Then in the same day I also received a great gift from another friend. She organized a collection of rainbow loom bracelets and charms because I am collecting them. I am decorating my room and hospital room with them so that it doesn’t look so dreary. It also makes the IV poles and machines that are so ugly and scary looking look a little more “fun”. I am also hoping that if I collect 1000 of them that a miracle will happen. I thought of this after reading “Sadako and the Thousand Paper Cranes.” In this book, after being diagnosed with leukemia from the radiation, Sadako spent her time in a nursing home folding origami paper cranes in hope of making a thousand of them. She was inspired to do so by the Japanese legend that one who created a 1000 origami cranes would be cured by the gods. Her wish was simply to live. However, she managed to fold only 644 cranes before she became too weak to fold any more, and died on 25 October 1955 in the morning. Her friends and family helped finish her dream by folding the rest of the cranes, which were buried with Sadako. So not only did I receive the loom bracelets, but I honestly was surprised to receive paper cranes as well. So I am off on my journey to make 1000! Thanks for all the contributions.
Well… gonna get going. Gonna go rest for the next hour or so before we leave for the hospital. Talk to you soon. Remember… donations are much needed. Every $1 is one less than I need to come up with and really does help!
Thanks again for everything.