I can’t believe that all that has happened today. So much has happened that I have to write and let you know because it is kind of a miracle that this all has happened, but at the same time I also need so much help because unless I get some help… this is all going to be worthless and for nothing.
I am so excited because I got the best news. I normally never say that because usually that never happens with me. However, it just happens that today I got news that two new doctors want to see me. It just so happens that if all works out well, 2014 can possibly be my year. The year will start out showing what the “human spirit” can endure. Just when I thought that miracles can’t happen, I was shown otherwise. I have finally found one miracle and feel very blessed, but it obviously won’t be able to happen without the help of others.
I have a new doctor that wants to see me in UCLA and a doctor in Mexico that both want to see me ASAP. In fact, I have the doctor from UCLA scheduled for January 5th and I am hoping to be able to go and see the Dr. from Mexico in the middle of January. The doctors would have loved to see me even sooner than that, but with the holidays and everything, it is really impossible to do so. In addition, it is all contingent on the ability that I have the funds available, which as of right now I don’t have the ability to pay for either trip. So if you can please help me find a way of getting the money whether it is by fundraising, spreading word of my website, donating, etc.… I would really appreciate it. Let me tell you all about these miracle upcoming doctor appointments that will hopefully give me my life back and get me well.
First off… I have an appointment at UCLA with a new GI doctor. This doctor is supposed to be simply amazing. He was originally at Cedars Hospital, but he recently moved to UCLA. One good thing about going to UCLA to see this doctor is that not only is he supposed to be one of the best doctors out there and supposed to be knowledgeable about my severe Gastroparesis and Pseudointestinal obstruction, but UCLA is a top-ranked hospital in the country which is one of the very few hospitals that do the intestinal transplants, which I need. So it is very good that everything will be at that hospital instead of having to be sent to another place for the actual transplant to occur.
I never went to Los Angeles, California and I always dreamed of going. So in a way this is kind of like a dream come true because I always wanted to go there. When I spoke to the doctor’s office though, they said to make sure that I stayed very close to the hospital, which is in Beverly Hills or Westward because they said that Los Angeles is very difficult to travel because of the heavy traffic. They said that the traffic is so bad and there are really only 2 highways to get around and therefore, if I would have accommodations further away or something, it would literally take forever to get to the hospital. So I can just imagine how much things are going to cost considering it is going to be in Beverly Hills and Westward.
But I must say that I am really excited about going to Los Angeles. I am really excited to see this doctor because I had him look over my records and I am really hoping he can help me because I asked him if I was “wasting my time by coming out to him” and he said certainly not. So… with him knowing everything about me beforehand and such and by saying this… I am really hoping that he will be able to help. I am hoping so much that he will be able to help because I am really suffering lately. Not only am I suffering in intense pain 24/7 but also my GI system has literally stopped working completely and I cannot go to the bathroom basically at all. Everytime I try to go to the bathroom, I end up vomiting instead because instead of the pressure pushing the contents out through the bottom half, it is like it backfires and I end up vomiting everything back up. It is like I am so “stuffed” that all it can do is come back up when I try to push it out! So my fingers are really crossed that he will be able to help me, especially when he is in charge of the digestive disease program and specialize in my condition.
Secondly, I am really excited because I spoke to the doctor from Mexico tonight. It appears that he wants me to come down as soon as possible to have the ketamine coma. It is a very rare and radical procedure that is extremely dangerous and is definitely not allowed in the United States because it isn’t FDA approved. The FDA has yet to approve this very type of coma that I am going to undergo because I will be given ketamine and midazolam up to 50 times the normal dose. 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. As a result, I will literally be put all on machines for some time, as my body will officially be “dead.” All I will be kept alive is on machines.
So far, only about 100 patients have taken part in the study. For many, it has been miraculous! The long-term effects of the coma suggest that the coma may provide long-term and perhaps permanent relief very severe cases as mine. However, like any treatment, there are no guarantees. There are also significant risks, especially in my fragile condition. But I am willing to take the chance to have this very rare and risky procedure because I can’t live like this anymore.
Yes, these are radical and scary treatments, but for me, “scary” is thinking that I could spend the rest of my life in this condition, unable to walk, eat, or take care of myself. Since all reasonable treatments have failed to help me, I am hoping that you might have something to help regain my life. I can’t live like this anymore though. The pain and disease has gotten way too severe. I really need a miracle. Not only do I want to regain my life back and to live, but my goal is to one day become a doctor, and I will be a great doctor because when a patient presents in my office says, “Doctor, I am in pain and words cannot express how bad it is” I will be able to say, “I know how you feel, I’ve been there too. So, take a seat and let me tell you a story.”
My current doctors have stated, “I am a time bomb waiting to go off.” I am extremely hypersensitive and the slightest tough sends me through the wall. The pain has been so intense lately that I can’t do anything but scream and cry all throughout the day. I am in pain from head to toe… from the very tips of my fingertips to the very tips of my toes. I am in pain from the very top surface of my skin down to the inner core of all my bones in my body. The pain is so excruciating and intense. I don’t even know how to describe it anymore. The pain is horrific. It is like being electrocuted or stabbed, as well as having flaming hot gasoline being poured on me. The “best” I can hope for is a dull ache that can last during periods of an attack of extreme suffering. This disease isn’t a joke. It hurts so much.
I even have severe allodynia. Sometimes just the air from a breeze is too much to handle. I’ve cried myself to sleep countless times, from the painful day I had, and because my body, especially my limbs, had to touch a blanket. The slightest touch, even the caress of a loved one, the kiss from a parent, the touch of the sheet on the foot, the tightness of a sock, sometimes even the very breeze itself blowing over the body, can cause such pain it will bring tears to my eyes.
Another strange symptom that has to be factored into my daily life is that vibrations and noise bother me, as it can actually make the pain skyrocket! A simple ride in the car over a bumpy road can cause a spike in pain. Due to the noise and vibrations causing me extra pain, for instance, there are a lot of things I cannot do, places I cannot go, and again. These are places most people take for granted and may wonder why we are not there. If there are a lot of people making noise, even if it is simply singing or clapping, a baby crying, it can cause my pain to spike. Visits sometimes have to be cut short due to all the regular noise that is typically generated, or I just have to go off to another room; and don’t even start on things like thunderstorms, whew!
Even the sunlight bothers me and I have to wear dark glasses due to the pain of the bright sunlight. Even though I am in pain 24 hours a day, the pain always escalates in the evenings that I rarely go out. In fact, by the time lunchtime rolls around, the pain and meds get to be too much to bear that I rarely go out and its like being Cinderella because my whole life changes if I am not back home by a certain hour.
This disease really has really taken a great toll on me. I get headaches from the devil, I have track marks from my doctors, and my entire GI system has shut down. I transpose letters and words in my head, sometimes skipping over letters or entire words. I can be talking to someone, and mid-thought, completely forget what I was talking about. I repeat myself for no reason. I repeat myself for no reason. When writing, I oftentimes mix up tenses or combine words to make new words that you won’t find in a dictionary. Things happened during surgeries that should have killed me, and in the end, they probably will.
In addition, I also have another illness I suffer from, as I suffer from Acute Intestinal Pseudo-Obstruction (ACIP), which is a form of severe Gastroparesis. It is a rare disorder characterized by persistent signs and symptoms of intestinal blockage in the absence of any physical blockage. The small and large intestine loses the ability to contract and push food, stool, and air through the gastrointestinal tract. There is a delayed emptying of food and liquid into the small bowel, and often food will sit in the stomach for many hours or several days. This results in nausea, vomiting, early satiety, heartburn, weight loss, vitamin deficiencies, fatigue, malnutrition, abdominal pain, bloating, and dehydration. It is also no unusual for other portions of the GI tract to be affected such as having dysmotility in the esophagus and having problems emptying the bladder. In fact, when I get “air” in me, I actually have to use my hands and manipulate it out of me by working it out of me by pushing on different parts of my abdomen until I get it out.
Even my organs are suffering not just because they are being affected by the disease since they also work on via the nervous system and everything on the nervous system in my body is affected, but my organs are being compressed from this disease because the air buildup is exerting pressure on all of my internal organs such as my heart, but they are shutting down. The doctors are so very worried about how my dilated GI tract (stomach and colon) is compressing my organs. They are worried about the organs shutting down further and worried about me going into septic shock. However, there really isn’t much to do without the transplant. I can go for “decompression,” but it is only very temporary. The doctors are also very worried that I am going to perforate my cecum or other parts of my intestine because I can die once that happens.
I’ve tried so many things to help with pain, to try to kill the disease, and to try to get my life back. I have been to top specialists in the country because not many doctors are familiar with how to treat me. In fact, not many doctors have even heard of my disease. I have traveled throughout the United States in search of help including to the Cleveland Clinic, Vanderbilt Medical Center, Hopkins University Medical Center, Boston Medical, Temple University Medical Center, etc. I am on a countless amount of medications and even though I am maxing out on all the meds that I have, they don’t help. I take so many meds that it could probably kill a horse if they took it. I have tried many (if not all) opioids, anti-depressants, etc. but nothing has worked. I even have tried injections as well. I am currently on Nucynta, Methadone, Ketamine, Oxycodone, Senokot, Colasce, Ducolax, Avinza, Topamax, Singular, Domperidone, Bethanechol, Colchicine, Vancocin HCl, Misoprostol, Ketamine, and Relistor and more. In total, I take over 50 pills daily just to be able to function. Yet, I would love to be able to come off these medications as well, as these medications come with their own host of problems and issues.
I have undergone so many treatments that have not proven to be very effective. These have included surgeries such as implanting a spinal column stimulator (which had to be removed), sympathectomy, epidurals, sympathetic nerve blocks, Botox, etc. I also tried aquatherapy, blocks, physical therapy, occupational therapy, aquatherapy, biofeedback, massage therapy, TENS unit, acupuncture, ketamine infusions, and hyperbaric therapy. Hyperbaric therapy has helped to a point (when you are in my condition and state, you will take any relief you can get), but it is extremely expensive and not covered at all on the insurance plan. Ketamine infusions also have helped, but the dose I need is a much higher dose and it is not FDA approved in the United States. 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. As I am getting worse, the doctors are claiming that I need a “miracle” or a radical treatment in order to survive because I am “running out of time.”
So I am so fortunate to be able to be given this opportunity to go to Mexico for this coma treatment. This coma treatment is only for the worst of the worst patients, and it has only been done a limited amount of times. I will be under the care of a great physician, who I am really excited to work with. Not only is he very knowledgeable about my condition, but also he is extremely nice and has excellent bedside manners. He even gave us his cell number (even though it is in Mexico) so that we can contact him anytime.
This doctor in Mexico happens to be the best of the best. So I am so glad that he is willing to see me. He said that this coma would hopefully give me back my life back, if all goes well. Of course it is very risky and dangerous, but of course I am willing to take that chance. I spoke with the doctor tonight and he spent an enormous amount of time on the phone with me. He answered every single question of mine and didn’t turn away any question… no matter if it was repetitive or stupid.
The doctor is trying to get another study approved at the hospital in Monterrey, but since he does not know when that will be approved, he is willing to take me to another hospital in Monterrey called HOSPITAL CIMA SANTA ENGRACIA. He said that I would have nothing to worry about with my dad and I not being fluent in Spanish because he would assure us that he would understand and know everything that was going on… even when I was in the coma. The doctor spoke very good English, so he assured us that he would be there for us in any way possible that we might need because he understood that we didn’t speak Spanish. This was very comforting because it was one of our fears since we would be in a different country and I would basically be having this life-threatening procedure. My dad was afraid he wouldn’t know what was taking place or going on, but the doctor assured him otherwise.
The doctor stated how impressed he was of my condition, as he reviewed my records and such that I sent to him. He said that he has been fortunate to see the “worst” cases since he does this ketamine procedure and therefore he knows exactly what this disease is unlike the doctors in the United States. Whereas the doctors in the United States aren’t quite sure what to do 100% with me because they aren’t sure what the disease really is or what is due to what, this doctor actually understands it all. He said that everything could be cleared potentially by this coma. Wouldn’t that be a miracle if that were to happen?
When I told him of all that I have been through and all that they want to do such as the multivisceral transplant and such, he basically gulped because he knew how intense the transplant especially was. He said that if it was all related to the neurological condition and autonomic dysfunction than the ketamine coma should help it. He even stated that he had a patient that couldn’t eat for 5 years and was basically just like me who was a very severe case and after having the ketamine coma, not only is she better but she is eating everything. She is actually attending school now and becoming a Physician Assistant. A real miracle happened to her with undergoing this coma. I am only hoping that I will be as lucky.
The doctor wants to get me down to Mexico as soon as possible. He is going to get everything organized and see the exact dates that he can do everything. But ideally he wants to get me to Mexico in the middle to latter part of January. Hopefully I will be able to last that long. However, it does take some time to get organized and plus we have to get passports and everything. The doctor said we would initially come down for an evaluation and for the doctors to make sure that I am a good candidate for the coma, and if all goes well (which it should), he will do the coma then. He won’t make me return home so that I will have to travel back and forth, but he will do it while I am there already.
This is the best holiday present I can be given as well as a birthday present too. Not only can it give me back my life and let me live, but it will be done during a time that will hopefully allow me to awaken just in time for my 32nd birthday… a birthday I might not see if I don’t have the coma. To think that I can be made better by this coma and not have to have the transplant or anything else. To think I could have my entire life back. I would love for that to happen.
Monterrey can be my miracle. Where we will be staying will be a location where there are majestic mountains called “La Sierra de La Silla” because of how the central portion of the mountain range resembles a chair or “silla”. At night, when the city of Monterrey is all lit up, I was told that it will truly your breath away!
The only problem is that the cost of this procedure is going to be incredibly expensive, as it will cost about $50,000. The doctor is going to try to lower the cost as much as possible, but he said that is the cost is going to be about. So… as you can see it is extremely expensive and definitely cannot be afforded on our own. So if you can please help out by doing anything… whether it is fundraising, spreading word of the website, donating, etc. I would really appreciate. I really need this treatment, as it is my only chance. I have such a desire to get better because the pain is so bad… and it is definitely all worth all the risk. After all, my life is not mine anymore. The pain is constant.
Well… the doctor and I have another meeting set up to talk more and such because things have to be scheduled and there is a lot of planning to be done. I was really shocked because he told me that we would set up another meeting on the phone for Christmas Day and Christmas Eve, as he said he would wait for my call and such. When I reminded him that it was the holiday, he said that I was more important than a holiday. This is one great and dedicated doctor.
In the meantime though, there is so much to be done because not only do we have to find the funds to pay for this trip, which is most important, but also we have to make arrangements to get a hotel, airfare, etc. In addition, we have to get passports as well because neither my dad nor myself have one since we never have been out of the country. I really hope it doesn’t take that long because we really need them urgently. Plus, I know that they are also very expensive, as each passport is over $100. I don’t know how we are going to afford everything. But I am just praying that there will be a way because this is the miracle I have been praying for.
Well… I just wanted to let you know the good news that I heard today, as well as to ask you if you can please help me by anyway find a way to get that miracle to happen. Like I said… there is no way that we could possibly get that coma on our own because we can in no way afford it. If you can please do anything, I would appreciate it. Anything and everything… even a prayer… is appreciated.
In case I don’t write again before, I want to wish all a very MERRY CHRISTMAS. May you all have a wonderful day celebrating his birth with your family and friends.
Thanks so much for reading this. I really appreciate all the support you have given me. We are still planning on going to California despite this news of Mexico because we still want to hear what California can do for me just in case it doesn’t work out in Mexico or if we go to Mexico and they think that the Gastroparesis and CIP won’t be helped by the ketamine (even though the doctor said on the phone that it should, but he can’t be 100% sure until he sees me and evaluates me in person). Please keep your fingers crossed and please help me on the next battle in this war against this horrific illness. After all, I have too much to live for and I don’t want to die. I am not ready to surrender as of yet. By finding out this news today, a new match was lit under my butt and I am ready to fight even harder right now. Words cannot express the renewed sense of hope that me and my family have that I will be able to beat this and that one day I can regain my life that has been taken away from me. Please join me. Hopefully 2014 will be my year!!