Just wanted to write tonight before the big day tomorrow. Going into the hospital tomorrow for surgery, so I wanted to get in one last post beforehand.
Although we are learning more and more, there are still too many unanswered questions. So many people and even myself constantly wonder what exactly is wrong with me. I suffer from rare and life threatening illnesses known as Reflex Sympathetic Dystrophy, severe autonomic dysfunction, severe gastroparesis, osteonecrosis, and a pituitary brain tumor. Doctors have also diagnosed me with mitochondrial disease, otherwise referred to as simply “mito”. Mitochondria are responsible for producing most cellular energy, and when they do not function properly, Mito develops.
I continue to push onward. Many people wonder how I ended up the way I did. I mean it is quite rare that you meet someone afflicted with all these diseases? Who would think that someone could be struck with so much? I guess I just had the luck of the draw. However, although we are learning more and more, there are still too many unanswered questions. But right now the predominant hypothesis as to why and how I possibly acquired this, um, impressive collection of rare diseases is this: Most likely I have had some genetic abnormalities my entire life. As a child my mild stomach troubles, hypermobility, and abnormal healing may have been early evidence of this. When I was 19 years old, perhaps the stressors of the surgery that I had triggered an over-exaggerated immune response and things got crazy, setting off my mito, RSD, digestive tract paralysis, and all of the symptoms that go along with them. But we continue search for a way to save my life.
I have had very harsh treatments to give me any chance of survival, and I seriously need your help in order to continue to be able to live. I desperately need to get to Mexico to undergo that radical Ketamine Coma, but it will cost me $100,000. I am scheduled to go in July, and I am only hoping that I will have the funds available and I will be able to hold out until then.
I have really been deteriorating and worsening lately and unless something is done now, I will not make it much longer. Doctors weren’t kidding when they said I was a “time bomb waiting to detonate” because I think the time has finally come that I am going to detonate. As a result, we are hopefully going to be heading to California on May 13th to see doctors at Cedars-Sinai Hospital because I desperately need help ASAP. However, even though this trip is so important and quickly approaching, it is also contingent on the fact that we have the funds available in order for us to go. I am only hoping that we receive enough donations so that we will be able to afford to go because the medical expenses that we have now have really snowballed out-of-control and as a result, we can no longer pay for any of my medical expenses (whether it be appointments, medications, surgeries, etc.) without help. We have exhausted all our funds because my disease is so extremely expensive and we have paid for so many years. There just isn’t anything left. So essentially… my life rests in the hands of the rest of the world. So I am only hoping and praying that I will be able to continue to go to California on May 13th as planned.
It is really imperative that we go to California because I definitely need something to be done as soon as possible. Not only do I need something to be done for my neurological disease, but also my GI tract has completely shut down and I really need a multivisceral transplant, which incorporates getting a new stomach, liver, pancreas, small and large intestine. However, this is a mega and dangerous transplant, as it is the most dangerous transplant you can have and we are trying to avoid this. The best option would be to hopefully go to Mexico and have the Coma because it has the potential to help this area as well, but since we don’t have the funds available ($100,000) as of now, we have no other choice but to make other arrangements and take care of the GI issues separately.
Since the transplant is very risky and I am very sick, the doctors are trying to avoid the transplant and “buy” time. They need to get me stronger to get the transplant because they don’t know even if I will be able to even survive the transplant. Therefore, I desperately need to have my colon removed and have a NJ tube placed in me. However, the priority is to have my colon removed first, as nothing is going to work unless that happens first. My intestines are completely dead, and as a result, it is causing blockages and the intestines to dilate. It is putting so much pressure on my organs that they are also shutting down. The doctors are worried that my colon is going to perforate and rupture. They are also worried about me going into Sepsis because whatever is in my intestines is just remaining in my intestines with no place to go.
As such, the doctors really want me in the hospital as soon as possible to have my colon removed. They also want me to be in the hospital to have a tube placed in me because this way they will be able to “suction” and “vacuum” everything out. However, this is only a temporary fix because once the tube is removed, I will only be back to square one. So essentially I would have to remain in the hospital because the only way I can have the tube is in the hospital and that is no place for someone to spend their days. I don’t want to spend whatever time I have left in a hospital with a tube coming out of me just because there are no other options and I just need to have this tube to vacuum everything out of me. To make matters worse, there really is no hospital equipped to handle my overall condition. Although there are hospitals in the area that can remove colons, I also have all those other conditions that make it extremely risky to operate. I am extremely high-risk and therefore, I need special attention. Not many hospitals and doctors are equipped to handle my situation because they are not knowledgeable in dealing with my diseases, as I cannot be treated like a “normal” patient. I am very hypersensitive, need potent medications, need ketamine around the clock, need doctors to think ‘around the box because I don’t follow the typical plan’, and lots of things that you don’t expect to happen always happen. I only weigh in the 60s and have a BMI of 10.8 or less and therefore, operating on me is extremely crucial as I am very fragile. That is why it is imperative that we travel across country to places like California because only certain institutions are capable of dealing with conditions like me. So hopefully I will be able to go to California on May 13th because my life is depending on it even though it is going to be one exhausting trip because I have to literally travel across the country. It is a shame that I have to travel all the way across the country to get treatment, but I have no other choice. There is no other way.
In the meantime though, I am going into the hospital tomorrow for surgery. That is why I really wanted to write tonight. I wanted to alert you that I am going into the hospital for surgery just in case something should happen. I never count my chickens before they hatch, so I always like to be ‘prepared’ just in case something should take place. I am having surgery to try to further ‘explore’ what is happening and to help further help to buy me some time until I can at least get to California because even May 13th is too long to wait.
The surgery tomorrow is really not that major to a normal person, but to me… it is really major because anything that I undergo is magnified. A simple needlestick, for example, is like someone sticking a huge knife in me. During this surgery they are going to be doing some exploration to see if they can further diagnose and see what is happening, as well as doing some biopsies to see if they can further get an understanding as to what is happening. In addition, they are going to try to vacuum/suction some of the blockage/stool out of the colon, but it definitely won’t be as successful as if I were to remain in the hospital with a tube coming out of e. In fact, the doctor doesn’t even know if the suctioning/vacuuming will even work because the mucous can be too thick and too high up to come down in the brief window that he will be able to put the tube in. Plus the tube that will be placed in will be different than the one that would have been placed in me if I was to be in the hospital for days and therefore, they don’t even know if this tube will be capable of doing anything. They are just hoping! But they also told me that it is only going to be a temporary fix because once they take out the tube… of course everything will be back to where we began. Yet, they are hoping that they can alleviate at least some of the pressure and they are hoping that they can decompress me even if it is for a bit.
So we are on our way in a few hours to the hospital. I will let you know how it all goes. In the meantime though, I went to the surgeon today for my osteonecrosis and that has been getting worse as well. Two more pieces of my bone from my jaw came out and it is killing me. When I went to the surgeon, I brought the two pieces of bone with me because they had fallen out this past week and therefore I put them in a cup for him. I knew that he would want to biopsy them!
Well… I just wanted to write and share all that is happening. I will share more when I know more. Wish me luck tomorrow. I also just wanted to remind you that there is a fundraiser going on that will be ending in a few days. A dear friend is trying to raise money for me and therefore, she is hosting an ONLINE ONLY Pampered Chef party. You DO NOT actually go to a party! It’s all done online. Please add all of your Facebook friends onto this party AND please post about this on your wall with the link so people can make purchases. If you have friends or family outside of Facebook and they would like to make a purchase to help raise money for HOPE FOR FALLON email them this link with an explanation of the fundraiser.
http://new.pamperedchef.com/pws/dayna417/guest-landing/8868939021467 The more purchases…. the more money we can raise!!!! The deadline to this fundraiser is May 5th, so please get your orders in!! There are only a few more days left of this fundraiser!!! Please help and support me!! Every order counts… Please get your orders in ASAP!
Thanks again for all your help and encouragement. I would never be able to make it through this without the support of others. Please continue to pray for me. Please continue to spread the word that donations are desperately needed because every donation counts especially when time is of the essence.
I just want my life back. I don’t want to die. But like I said previously, it all depends on the funds and therefore my life is kinda resting in the hands of you and the people in the world. I just hope people find it in their heart to donate because essentially all I need is 100,000 people to just even donate $1 and I will be set because the Ketamine coma in Mexico that I desperately need costs $100,000. I don’t even think that is an impossible feat because for 100,000 people in the world to donate, it is really not a lot because the world is so overly populated. In fact, all I am asking is for 100,000 people in a world that is so overly populated. As of March 26, 2014, it is estimated that the world population was 7.159 billion by the United States Census Bureau. All it takes is $1 from each or 100 pennies.
Please continue to pray and send those positive vibes!