I just wanted to let you know the newest info because I always promised that I would update you whenever I knew something or something happened to me. However, since both is happening… I felt like it was time to write again.
First of all… I guess I should start with what is happening. I am really not doing well at all and really deteriorating. Ever since the accident in May, I have been deteriorating at even a faster rate. It is like the accident lit a match on this disease and started a fire under it. I so wish that accident occurred because it really changed a lot. Even though I was sick before and was deteriorating, at least I was better than I am now. The accident really set off my illnesses and caused it to severely worsen because any trauma sets off my accident and causes it to worsen and exacerbates it.
I know it sounds weird, but my disease spreads trough ‘trauma.’ Unfortunately, my body cannot handle anything that ‘hurts’ it and of course the more traumatic the experience such as surgery or a major car accident like I was in will cause it to spread very easily. However, it can just as easily spread from a hug, a needlestick, etc. but the more traumatic the event, the more likely my illness will spread. My disease, RSD, involves “irritation and abnormal excitation of nervous tissue, leading to abnormal impulses along nerves that affect blood vessels and skin.” That being said, it is no wonder that the more traumatic an event, it will cause more of this ‘irritation and abnormal’ excitation of nervous tissue. It’s not well understood why injuries or traumatic experiences can trigger complex regional pain syndrome, but it may be due to a dysfunctional interaction between your central and peripheral nervous systems and inappropriate inflammatory responses.
However, it is known too that emotional stress is a known factor to worsen the illness as well and spread the disease and since the accident, I have been more ‘stressed’ than ever before. I mean how can I not? Look what has been happening. I have been deteriorating at a faster rate, feeling horrible, needing even more treatment that I can’t afford, etc. So it is like one thing than another. I am like its never-ending cycle as one thing affects the other and its snowballing out of control. But the end result is only that I am the one that gets hurt because even though one thing is causing the other, I am the one who is suffering in the end because my illness is worsening, which is causing me great harm. Not only is my body shutting down at even a faster rate, but also the pain is totally out of this world.
One of the upcoming treatments that I will be having is a huge intensive ketamine coma in North Carolina. Even though I have been getting ketamine comas in New York about every other week, these comas are no way in close to the amount of ketamine that I require to help me. Ideally, I really need to go out-of-the country to seek a very intensive ketamine coma. However, at the present moment I cannot go because it is unaffordable along with other reasons. Therefore, the only choice I have is to have a more intensive ketamine coma in the United States in North Carolina. Like I said before, even though I am getting ketamine in New York, it is only for one day and the amount I receive is very little in comparison to the amount I require. Very few places in the United States do the ketamine coma at a much higher amount and the places that do offer this are extremely costly. But since it is at least cheaper than going out-of-the-country, at least it is better. But I still of course need to find a way of finding ways to pay for this coma because even though it is ‘cheaper’ it is still a tremendous financial hardship and I honestly don’t know how we are going to end up paying for it in the end. I only fear in the end that I won’t be able to receive it because they want over $30,000 just for the coma, which is something that I definitely can’t afford. That is only one of the many reasons why I am pleading more than ever for help from others. Without this coma, I will continue to rapidly deteriorate and end up dying. Even the doctors have said that I need this in order to have a chance of living.
Ketamine is a dissociative anesthesia that is often used on children and in veterinary medicine. The patent has long expired so the drug makers have no interest in research. Even if they donated the medication, it is not the expensive part of the treatment. When being given intravenous Ketamine, you must be on a cardiac monitor, have oxygen monitoring, blood pressure monitoring and direct nursing care. It is this component that makes the infusions very expensive.
However, I have been fortunate to find a place that will give me a more intensive ketamine coma, as I would be given a higher dose and in the coma for about 8 days even though the dose still will not be nearly as high as I would receive out of the country. But it would be much better than the ketamine that I receive in New York. However, the problem is that unlike the ketamine that I go for in New York, there is a different protocol in undergoing the coma. Whereas I could remain on all my medications for the ketamine comas in New York, I cannot remain on certain medications for the coma in North Carolina because the ketamine will not work well with it. As a result, it gives me no other choice but to come off the meds because I desperately need that more intensive coma in North Carolina because I am weakening and getting so bad. I desperately need that higher dose of ketamine because has the ability to block NMDA receptors. Ketamine is the only potent NMDA-blocking drug currently available for clinical use. It is believed that an appropriately prolonged infusion of Ketamine appears to maintain a level of Ketamine in the central nervous system long enough to reverse the effects of the sensitization process and associated pain as well as reverse this disease including the autonomic dysfunction and all neurological dysfunction. Experimental evidence suggests that this disease is due to a release of glutamate from peripheral nociceptive afferents onto dorsal horn neurons within the spinal cord. The glutamate released, in turn, stimulates NMDA receptors on second-order neurons that produce the phenomena of windup and central sensitization. As a result, it is reasonable to consider that, by blocking NMDA receptors like with Ketamine, one might also be able to block cellular mechanisms supporting windup and central sensitization. Inpatient admission for the admission of IV Ketamine coma is considered the standard of care for my neurological disease.
That being said, I have to come off many medications that would interfere with the more invasive coma and as a result, it means that I have to come off some of the painkillers that I am taking to ‘ease’ the pain. I also suffer a lot of comorbidities such as Gastroparesis, Osteonecrosis, pituitary tumor, etc. and taking me off these medications are not just affecting the neurological illness and causing me to feel worse in that area, but it is causing me to feel worse in the other areas as well because the Gastroparesis, Osteonecrosis, etc. is just so very painful. You know things are bad when you speak to other people suffering from these conditions and who underwent this procedure and they say that they had to take sleeping pills just to make it through this ordeal because it is too painful otherwise. However, I am on so much medication and the coma isn’t right around the corner and I can’t sleep the next few months. I cannot be Rip Van Winkle even though I really wish I were. Unfortunately the coma isn’t scheduled until the latter part of the summer like in the beginning of the September or October because it takes time to come off of all the necessary medications, and I can’t sleep til then. I can’t come off them too fast because it can easily kill me if taken off too quickly. So it looks like I will just have to endure what is to come on top of everything else.
I have really been suffering worse than ever though. The pain is just so excruciating and the autonomic dysfunction is totally out-of-control. I keep breaking into blisters because I get so hot and I can’t sweat because of the autonomic dysfunction. Nothing cools me down and I can’t even tolerate things blowing on me or a cold compress or an ice pack anyway because of my extreme hypersensitivity. I am in extreme pain 24/7 and having the a/c directly blow on my skin or putting water or ice on me literally sends me through the roof. I can’t even tolerate anything on my skin like pants because I am so sensitive… especially when I get these ‘hot flashes.’
In addition, I have been getting the worse pains in my abdomen. I never had pains like I have been receiving. Every time I eat or drink it is even worse. It really is hard because I am so thirsty that I am dying of thirst. Yet, every time I drink the pain worsens so much that all I can do is curl in a ball and cry. I can’t even ‘walk’ with my crutches because every step feels like there is a knife going through my abdomen. We don’t know what the cause is. When I spoke to the doctor he said it could very well be pancreatitis, which is extremely painful, or it could be a result of the ‘obstruction’ or colon twist that I have in my abdomen. I never had it so bad.
Knowing how bad I am suffering, something has to be done. Like I said before, we are planning that intensive ketamine coma in North Carolina, but it isn’t for a while. I just hope that I will be able to make it that long because every day is extremely CRUCIAL. We aren’t even sure each day if I am going to make it through the day because everything is ‘touch’ and ‘go’. But we are just keeping our fingers crossed like we always do that I will make it. No one thought I would make it this long, but I am still here. I am defying all odds, but to be honest with you… I don’t know for how long. I also don’t know how we are going to afford this treatment, so we are hoping that in the meantime we will be able to find a way to pay for this ‘coma’ as well since it is very expensive. It would definitely stink to suffer all this and wait all that time to have the coma and then I won’t be able to go for it after all because we can’t afford it. So if you have any suggestions or can spread the word that we need desperate help, we would really appreciate it.
In the meantime though, something has to be done in order to ‘buy’ me time or I am definitely not going to make it. This is another reason why I am writing. As I told you before, we have an upcoming trip to California planned for July 21st. During that time, I will be having multiple surgeries including surgeries to have a PICC line inserted, surgeries to have tubes placed so that they can try to ‘feed’ me, surgery to try to remove the stool that I am so loaded up on, etc. It is really going to be a difficult time with all these surgeries. Even though I have had some of these surgeries before like a PICC line and tubes to feed me that failed in the past, they are going to try to do them again in hopes that it will work. After all, we are running out of time and running out of options. In terms of the tubes to ‘feed’ me… they are going to try to position tubes into my intestines in a low enough portion in hopes that they can find even a very small viable portion that would still be able to ‘accept’ food. But I am really nervous because not only am I going to be undergoing many surgeries, it will really be in a tight timeframe because I just found out that my head doctor will be leaving Stanford right afterwards.
I will be my head doctor’s final patient at Stanford. I was told that he will be leaving right after me and therefore, it is important that I be out of the hospital and everything accomplished by a certain date since he will no longer be there. I am really upset because I really hope that I will continue to be a patient of his because he is the only doctor who is knowledgeable, capable, and willing to treat me. Never before have I met a doctor that is so knowledgeable in my GI condition and know what to do. In addition, he has such terrific bedside manners and doesn’t do anything that will ‘hurt’ me. He takes my overall disease into consideration when he works on me and understands how doing anything can affect another condition that I suffer from. Instead of him doing what he wants, he works WITH me so that I am not suffering even more even though by textbook and medical books it might be the right way to go and the best option. For me, I can’t always go with what always is written in medical books as the ‘appropriate’ treatment. I am extremely complicated and what is normal for a regular person is definitely not normal for me. Doctors really have to use their brains with me and what is obvious on the surface is definitely not what is going on with me on the inside. That is why most doctors can’t treat me and refuse to treat me. I am not an ‘easy’ case and since I am a challenge to them, they don’t like to treat me. Doctors hate to ‘think,’ as they always say it is in a patient’s ‘head’ when they don’t know something or can’t figure something out.
My doctor is the first to admit that I am a real challenge. But no matter what, he always is able and willing to help. He always takes his time with me and lets me ask as many questions as I want too, as he never shuns me away from asking something… no matter how stupid it may sound or even if he doesn’t know the answer. Like I said before, he is the only doctor willing to even ‘touch’ me and do something without handing me off like a hot potato because most doctors are scared because I am not in the best condition. Doctors usually don’t want to do anything that will threaten their reputation. However, my doctor is always willing to help me in any way possible.
I have one of the best doctors there is in the business. However, I am really terrified that he will be going back to Africa or something so I won’t be able to continue being a patient with him. Of course if he moved to another hospital, we would love to follow him. However, when we asked him where he is moving to, he just continues to tell me that he ‘isn’t sure’ and that he has a lot of ‘options’ at the moment and won’t know until mid July. I know that he set up a whole intestinal program in Africa and I am so scared that he is going to go back there because I won’t have him here. But I guess all I can do at this point is wait and hope because I have been to numerous physicians and no one is like him. He is simply the best.
In addition, I am writing to you to inform you that I have an emergency appointment at John Hopkins coming up. I had to make an appointment for July 12th because of how horrendous things are getting. I am really hoping that they will be able to help me, especially with the chances of my current GI doctor leaving. My GI doctor in California always told me that if I ever had an emergency or had to go to a hospital, I should go there because it is the best hospital to go to besides California. I should also let you know that the mentors of some of my doctors in California are supposed to be there, so that is a good thing too.
I will be meeting with so many people when we go to John Hopkins. I will be meeting with the whole entire GI team and the neurological team as well. Hopefully between the two of them, they will be able to help me out. John Hopkins Medical Center is a very well known hospital and I am only hoping that they will be able to help. I know that they have a very good team for my GI problems and gastroparesis, but I don’t know in the end if they will be able to do the multiorgan visceral transplant. Maybe I won’t have to end up having that in the end. I can hope, right?
I also know that John Hopkins has one of the best swallowing centers in the world and since I am unable to swallow due to the disease affecting it, I am hoping that they will be able to help me in that area too. Many doctors don’t now how to treat my ‘swallowing’ and it is getting much worse. I cannot swallow basically any food and even swallowing pills is getting literally impossible. It has gotten to the point that even the carbonation that I have been using in order to get the pills down is not working anymore. I basically live on medicine, as I take over 50 pills daily. It literally takes me forever to take my medication and I can’t afford not to take it. I need the meds to function and stay alive, so it is important that I take them. Yet, if something isn’t done soon… I don’t know how much longer I am going to be able to take them. It is getting to be impossible to take them!
I have been to John Hopkins before and they are an amazing hospital. I went there last time with my mom and this time I will be going with my mom. When I called to make the appointment, they really didn’t have any appointments for a couple of months. However, they saw how very ill I was and how much this was an emergency. Therefore, there ended giving me an appointment as soon as possible and with one of the best doctors too even though they are all good doctors who practice there. This hospital is used to dealing with rare and difficult cases… so I am hoping that they will be able to help me. They work on cases that no other doctor can figure out or willing to take on, so I am hoping and keeping my fingers crossed that they will be able to help me too.
So… that appears to be the upcoming plans. A lot is happening. I will have this big trip to John Hopkins on July 11th for a few days and then I will have the huge trip to California on July 21st. I just hope that I can make it. I also hope that my body will hold up because I am so much in pain and weakening so much and deteriorating every day. Each day is a battle to get through and getting harder and harder. In addition, traveling is not the easiest on me and really worsens and weakens me as well. I never come back the same when we go away and that is one reason why it is crucial that they will be able to help me because I really don’t have ‘room’ to weaken anymore without dying.
I just hope I am going to make I through all this… physically, medically, emotionally, and financially. I am definitely going to need as much help as possible in order for this to happen!! I am definitely going to need the help of others more than ever because I need them for support, encouragement, and prayers because like I said before… I am weakening every day and deteriorating and all this traveling takes a huge toll on my body. In addition, I will be undergoing so many tests, procedures, and surgeries that I really need to be ‘strong’ in order to make it through them. Having the support of others and knowing that they are behind me really makes a huge difference because it gives me the extra strength to keep going. It definitely helps get me over the bumps in the road. In addition, I will need help financially as well because besides needing help paying for treatment, the traveling costs will be extremely costly as well. We don’t know how we are going to afford all this traveling, surgeries, procedures, etc. Everything is just so costly and we really don’t have the money. Yet…if we don’t get this done, I will end up dying. So what choice do we have? I only hope and pray that others will find it in their heart to help donate and raise funds because I don’t want to die and need as much help as I can get. If you can bring as much attention to my illness and donations as possible, I would really appreciate it because it stinks that the green paper is so important in this world and basically controls whether I live or die.
Well… I gotta go. It is that time to take more meds. I have been living on ice-pops that are medicated. Thank goodness I have the best dad in the world because besides working so very hard and taking me to all these appointments, hospitals, surgeries, etc.…. he will wake up all throughout the night to take care of me. He will constantly go downstairs throughout the night to the freezer so that I can have my medicated ice-pops even though he rather be sleeping. Who could ask for a better dad? Not only is he my dad, but also he is my best friend and my hero. I love him so very much.
Well… hope to talk to you soon.