I can’t believe that the New Year is here already. Wow… 2013. Do you know that this is the first year since 1987 that there haven’t been 2 of the same numbers in the year? For example, 1988 had two 8s and 2012 had two 2s. How weird is that? Anyway… I thought maybe I would be able to leave all the bad stuff that was happening to me in 2012, and I thought that 2013 might be my “miracle” year! However, apparently I was wrong. Just as in 2012, my life just continues to unravel and worsen. It is only the 4th of the year and already I am filled with bad news.
I feel so lost and confused! What do you do when you feel like your world is coming apart and you’re at crossroads of life and death and you don’t know which direction to go in? Feel like I don’t know which yellow brick road is going to take me to the wizard to make me all better. I can’t do this anymore!! I don’t know how much more I can take!!
I just went for a ketamine coma yesterday and it kinda was the “icing” on the cake as to all the problems that I was having. It kinda was the final ingredient to make the volcano erupt because as of right now I am in complete turmoil and can’t stop crying. I am crying because I don’t know what my life has turned into as it went from a life that was full of so much promise to a life full of nothing but sorrow and disappointment. I had so much going for me. I was top of my class and was looking forward to becoming a doctor, having a family, and leading a happy and healthy life. Little did I know that my life was going to come apart at the seams and I was going to be robbed of everything that life had to offer. Even the littlest things that people take for granted… such as eating, walking, showering, etc.… I have lost. I have went into a life that is isolated and into a world full of nothing put horrible and excruciating pain 24/7. I can’t even walk, eat, or enjoy what life has to offer. I have lost basically all my friends and family because you really learn who matters most when you are sick because they are the ones who “stick” around.
In addition, I have made my entire family suffer as we went from having money and living comfortably to being “broke” and now having barely enough money to pay the bills. My mom and dad work harder than ever ( dad works 7 days a week and mom works 6 days… and they are no youngsters) and yet, we can’t even muster enough money to pay my medical expenses to get me the necessary treatment to get me well. We have enough trouble paying the necessary bills like the mortgage. I can’t believe what has happened to me and what I have done to my family. I am so sorry for what I did to them and wish I could change it because they certainly don’t deserve the burden that I have become on them. They literally have had to give up their lives because of me.
About a year ago I started this blog as a way to keep my friends and family, as well as others updated on what I was going through. I was diagnosed with a rare and life-threatening disease and it was a disease that people didn’t really know about. I was hoping to bring awareness to this disease, as well as hoping to bring funds towards my illness so that I could receive the necessary lifesaving treatment that I needed. Even though my family would do whatever they could to save my life, it has gotten to the point that they can’t afford the astronomical cost of my disease anymore. It has basically consumed all our finances. Between the doctor bills, medications, copayments, insurance, traveling expenses, etc.… the cost is just too great. Just in copayments alone, we spend over $25,000, and that is with the insurance paying part of it. We still have to worry about the doctor and medication that the insurance doesn’t pay for. I take over 50 pills daily, so it isn’t like I don’t take a lot of medication. Plus, the medication I take is extremely expensive and I can’t even get it all in the United States. Some medication isn’t FDA approved and as a result, it is definitely not covered by insurance. Finally, since my disease is so rare and complex, I have to seek the help of top specialists. You would think that I wouldn’t have to travel far because I live in New York, which is supposed to be full of such wonderful hospitals. However, we are forced to travel throughout the country including to California, Indiana, Florida, etc. In fact, I even need a procedure that is given outside the United States in Santo Domingo because it isn’t FDA approved in the United States. As a result, the traveling to these doctors exhausts so much of the funds and really drains us. It is really important to get some donations because otherwise I won’t be able to receive treatment.
This blog was also a way of getting support from people. This journey has been a long and difficult one. I don’t think that I would have made it this far without the support and encouragement of other people. Sometimes it was because of this support and encouragement that actually made me continue onward. It gave me hope! It’s hard to give up on something that you always have wanted (which was to get well); but it’s even harder to give up when you know it’s everything you want. However, it is only through the encouragement and support of others that have kept me going.
However, lately I don’t know what to do. I am at a point right now that is so crucial because I am rapidly deteriorating and time is of the essence. Making the wrong decision can easily kill me. I need to make the right decision because I don’t have the time, strength, or finances to afford making the wrong decision.
I just went for a ketamine coma yesterday and the news that we received from the doctors wasn’t good. I am very complex, as I suffer from rare and life threatening diseases that doctors aren’t sure how to go about to treat. I suffer from a rare and life threatening neurological disease known as Reflex Sympathetic Dystrophy as well as Autonomic Dysfunction. I also suffer from severe gastroparesis and a brain tumor. It is thought that the gastroparesis developed since I have this severe neurological disease and autonomic dysfunction. The Reflex Sympathetic Dysfunction affects everything that is on the nervous system or is controlled by the nervous system and as a result, the GI system is greatly affected. As a result, my entire GI system has become paralyzed and has “died.” I now need a multivisceral organ transplant, which includes a small and large intestine, stomach, pancreas, and liver. I only weigh in the 60s.
RSD is a complex, mysterious and very confusing disease. It is incredibly hard to understand, for both regular people and medical professionals alike. But I have great faith that the doctors on the frontlines of RSD research and treatment are getting closer to those answers. However, as of now, they aren’t too sure about how to treat the illness.
I was supposed to be leaving on January 20th for Indiana because I am in need of a this multivisceral transplant. However, we aren’t sure if that is the best thing to do. Some of my doctors think that I am going to die if I am to have that transplant. It is a very rare and dangerous transplant, as only 6 hospitals in the United States even perform this operation. Plus, I am so fragile to begin with because of my complex condition. Due to my neurological disease, I am very hypersensitive and therefore, anything that is considered “traumatic” can cause extreme havoc to me. Even the most innocuous touch can be considered too traumatic for me and therefore, it can cause a great host of problems for me. Everything is magnified for me. A simple needle stick is like someone sticking a knife in me. A simple cold is like getting the flu to me. So, anything minor is considered major and can easily kill me. So you can just imagine how MAJOR a MAJOR surgery would be on me when it is already considered MAJOR surgery. It already only has a one-year survival rate of 75% roughly. Out of those numbers, the 5-year survival rate is only 50%.
However, we don’t know if this is the right thing because I will still have the neurological disease and autonomic dysfunction. The transplant surgeon say that it will “save” my life in the sense that I won’t die tomorrow anymore, but it won’t really solve my problems completely. They don’t know how long it will last or how “normal” it will make me because I still will have this underlying problem.
Therefore, we don’t know if we should proceed with this transplant first or first go and treat the neurological/autonomic disease. The problem is that even the treatment for the neurological disease isn’t cheap or easy. In fact, it is very expensive, as it is over $100,000 and not covered by insurance. It is also given outside of the country because it is not FDA approved. So, just with finances alone, we can’t really afford to do both treatments… the transplant and the treatment outside the United States. We are having a great deal of problems just trying to afford one.
Even though I do get ketamine comas in New York, the amount of ketamine that I require for my illness is far too great than is FDA approved. As a result, I would need to go to Santo Domingo to have that performed.
The Ketamine Coma is a very radical procedure that is considered for patients with the most severe, intractable cases, who have exhausted all other reasonable treatment options. During this procedure, 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. So far, only about 100 patients have taken part in the study. However, like any treatment, there are no guarantees. There are also significant risks.
Ketamine is a central nervous system depressant that produces a rapid-acting dissociative effect, blocking signals to the conscious mind from other parts of the brain. It was developed in the 1970s as a medical anesthetic for both humans and animals. 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.
Ketamine can have some nasty side effects. Especially when emerging from the coma, patients may experience hallucinations, lack of body awareness, visual distortions, confusion, and weakness. Because 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. My doctor in Florida is one of only a few specialists that are teamed up with these doctors in Santo Domingo to perform this ketamine coma.
If we go down that route, we need to go ASAP to Florida because my doctor there makes the arrangements. So, I need to decide if we should do that. However, we were also thinking about going back to California because my west coast doctors have another option.
Since the coma out of the country is so radical and expensive, the West coast in Cali has a different treatment that wouldn’t cure me but it would give me a great reduction of pain. Ziconotide is developed from marine life. It is a synthesized peptide component of a neurotoxin secreted by the cone shell snail, Conus magus, which is thought to work by preventing the release of neurotransmitters involved in the transmission of pain at the spinal cord level. Ziconotide was recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of chronic severe pain in which intrathecal (IT) therapy is warranted. In IT therapy, medication is delivered by catheter to the spinal fluid by means of an internal pump implanted in the abdomen. The only thing is that I would need a pump and I am way too small for it. However, I found a technique that possibly they could use by implanting it subfascially. Indwelling intrathecal drug delivery systems are becoming increasingly important as a method of neuromodulation within the nervous system. Usually they are implanted subcutaneously. The most common complications leading to these pumps are skin breakdown and infection at the pump implantation site. When you are as thin as me and undernourished, I have a dearth of soft tissue mass to cover a subcutaneously implanted pump. Therefore, I found a technique of subfascial implantation that provides greater soft tissue coverage of the pump, thereby reducing the potential for skin breakdown and improving the cosmetic appearance of the implantation site. I don’t know if it will work, but it is a suggestion. I will have to call Cali to find out. But now I have to decide which route to go.
I am basically at a crossroad… and I don’t know which road to go down. I don’t know if I go for a transplant first and save my life that way because I weigh nothing and I can’t eat. My entire GI system is basically “dead.” However, like I said before, the doctors said they don’t know how much better it would be because of the other underlying problems. At the very least though, I won’t be dying tomorrow though, which will definitely happen if something isn’t done fast. I can also try to go and treat the underlying disease first, but then it matters which way I go for that. Do I spend the money and go out of the country for the rare and radical coma or do I go to Cali and have the snail venom, which is also rare and radical. All this stuff is completely risky.
In addition, just because I go for the treatment for the neurological disease, it doesn’t mean that I won’t need the transplant afterwards. It is very possible that the coma in a very high dose can reverse the paralysis of my GI stomach, but the doctors already think that it is so far gone that nothing will bring it back. Yet, ketamine in extreme high doses have done miraculous things that doctors can’t believe. It has been seen to close up wounds and such that nothing else would. So, there is a very possibility that the transplant might get to be avoided if the ketamine coma out of the country is successful. But… there are no guarantees. In addition, just because I get better from the coma, it can very well come back. Hitting my foot or any wrong move, injury or sickness can still cause a setback or bring back my disease totally.
All I know is that I desperately need help. RSD is ranked as the most painful form of chronic pain that exists today by the McGill Pain Index. Worse than that of cancer, childbirth and even amputation! It’s a vicious cycle that has been best compared to an engine revving out of control, even though the key is no longer in the ignition.
I need help because I am in so much pain. Imagine what it would be like to endure a burning sensation so intense that the most potent pain relievers are completely ineffective, leaving you with the feeling that your body is actually on fire. Reflex Sympathetic Dystrophy (RSD) is a painful & debilitating neurological disorder that occurs when the nervous system malfunctions. RSD is characterized by: Continuous sharp, stabbing & burning pain; Extreme sensitivity to touch; Severe headaches; Painful skin ulcers; Intense muscle spams; Softening of bones; Dystonia; Skin temperature & color changes; Hair/nail growth changes; Muscle atrophy; Vascular & Autonomic dysfunction; Sensitivity to lights & sounds and Paralysis.
So… we just don’t know what to do. When I went for the ketamine coma today, my doctor also wanted to give me a injection called Celiac Plexus Block because of the huge stomach pains that I have been getting. I have been having such excruciating stomach pains that all I can do is curl up in a ball and cry. A celiac plexus block is an injection of local anesthetic into or around the celiac plexus of nerves that surrounds the aorta, the main artery in the abdomen. Normally these nerves control basic nerve functions. In certain conditions, these nerves can carry pain information from the gut or abdominal organ tissues back to the spinal cord and brain.
A celiac plexus block is performed to block the celiac plexus of nerves that go various organs and parts of the abdomen. The purpose was to reduce the pain in my abdomen and stomach. However, even though it could cause pain relief for a couple of hours, it could make the gastroparesis worse. Therefore, we don’t think that we are going to proceed with this.
Well… I guess I will be going. I really have a lot to think about and my head is spinning. I really don’t know what to do. I don’t know which way to go… do I go to Indiana for the transplant, do I go to Florida so that my doctor can send me out of the country so that I can have the radical ketamine coma, or do I go to California to have the snail venom? I just wish my doctors can all decide on the one treatment to have instead of each of them having their own beliefs. I guess that is what happens when you are so rare, complex, and deathly ill.
I really need to make the right decision and soon because I can’t afford to do them all and I am rapidly deteriorating. If something isn’t done soon, I am going to die. As it is… we don’t know if I am going to make it from one day to the next. Why does life have to be so complicated? All I know is that all these treatments, no matter which I decide on, are incredibly expensive and I probably won’t be able to afford without help from others. So maybe all this worrying about what to have is pointless because I don’t have the funds right now to get any of them. I am just hoping that we find the means to have any of these treatments so that I can possibly live.
I know I sound like a broken record, but if you can possibly think of any way to fundraise or raise any money or support for treatment, I would really appreciate it. As of right now, we can’t really pay for the needed treatment to save my life. All parts of my treatments are expensive and we definitely need the funds. As of right now, we are headed to Indiana on January 20th for the transplant. So… if nothing else… please say a prayer for me and spread the word of my website. I am desperately pleading for help because without it, I don’t know how much more treatment we are going to be able to afford.