I know I haven’t written in awhile, but to be honest… everything is really in a whirlwind and I am not doing too well. I haven’t really been feeling well and even tonight I am really bad night. As we speak right now, dad is contemplating whether to bring me to the ER because I am not doing too well and rapidly deteriorating. Everything lately has been ‘touch and go,’ but unfortunately there is no easy answer. Even though I am not doing too well though, I really wanted to write tonight to you and let you know a bit of all that has been going on and happening because a lot has happened. I just don’t know how ‘coherent’ and understandable all this will be considering everything that is happening tonight.
I am not doing well and we are supposed to be leaving for HOPKINS on Sunday. However, we don’t know honestly if that is going to happen because not only are the finances not there (which really makes it a hardship to go), but a lot of unexpected complications have occurred and there have been a lot of unexpected twists and turns… not just with me but also with the HOPKINS healthcare system that has played a huge role in the care that I will receive.
First of all, I have had a really bad accident about a week ago that really caused an exacerbation of my illness. I ended up dropping a soup can on my foot and unfortunately, it really caused my disease to flare up because any bit of trauma to my body is really MAJOR to me and causes my disease to flare up and spread. When you have my disease, I constantly suffer from excruciating pain 24/7. However, when I had this even more painful event occur, you can just imagine how much more pain I was in. If I was climbing the walls and couldn’t deal with the pain before the occurrence with the can despite taking all the pain medications that I am on (the methadone, morphine, dilaudid, nucynta, ketamine, etc.), you can imagine how much I am suffering now.
In addition, when you have a my neurological disease, cases don’t present as they typically do and you have to be extremely even more careful in treating the problem. That being said… when I dropped the soup can on my foot… my foot immediately swelled, felt broken, looked broken, and even developed a huge fracture blister. However, with my disease, you can’t immobilize any limb or anything because that would cause immediate harm and cause my disease to definitely spread. So to be honest, there really isn’t much that can honestly be done for a ‘break’ except to know about it, watch it, and to make sure that it doesn’t get further injured.
I have a real problem though with my disease though because I can’t ‘heal’ like a normal person and or have normal circulation. The doctors are always fearful that I am going to lose a limb (especially my left leg, which is where the soup can fell on because that is the worse limb), because I change all these different colors and even turn black as night. It used to be that when I elevated the limb, the coloration somewhat went resumed normal coloration, but lately that doesn’t even occur. The disease is really getting so bad that no matter if it is raised or dependent, my body remains discolored. I can literally go from normal coloration to totally black in a split second and that is why I have pictures documenting it because I don’t want doctors or other people to freak when it happens. I know for sure that I would definitely freak or think it is totally bogus if I saw someone change colors the way that I did.
Of course turning black and discoloring is not good because it means I am being deprived of oxygen. The doctors are even fearing that if I get well that I may still even end up losing a limb (especially my leg since it is the worst) because it has been deprived of oxygen for so long and so much tissue has already died. Anyway… I have to be extra careful not to get it infected or to further injure it because it won’t heal. It can easily get infected and go gangrene and if that occurred, I would definitely need it to be amputated.
Since I am so very sick with my neurological disease and have all these problems going on such as the circulation problems, the pain, the extreme gastroparesis (my GI system is paralyzed and has basically ‘died’ because the nerves don’t work anymore), autoimmune problems, etc. I have been trying everything under the sun to try to get well. However, a new doctor recently joined our team and she has just been simply wonderful. She has been more helpful than ever and to be honest, I am so happy that she is on our team now because I feel like if I am ever going to get better… it is going to be now because she is on the team. Not only is she knowledgeable and treats me like a patient, but she treats me like a ‘daughter’ as well because she just doesn’t think as a doctor but as a mom as well. She isn’t just interested in her field like most doctors are. Instead, she is interested in helping the whole entire person. She even stated that she is ‘emotionally involved and going to help me in any way possible.’ I am so glad to hear that because she really is such a wonderful person.
That being said… she has really started the team in working to getting me treatment. We are going to be trying hyperbaric oxygen to see if possibly it can help. It is of course experimental, but I am really hoping that it will help. Hyperbaric Oxygen Therapy (HBOT) benefits your body by helping to increase your body’s ability to absorb oxygen. Oxygen is vital for health; it is the single most important element your body needs. Oxygen is our primary source of energy. Not only does oxygen fuel the body, it supports the immune system by destroying toxic substances. Anaerobic bacteria, fungi and viruses all have a common intolerance for oxygen; they cannot survive in an oxygen-rich environment. The body’s vital functions are enhanced by increased availability of oxygen. Increased pressure also stimulates blood flow and decreases inflammation, and has a calming effect. Sleep is enhanced, absorption of nutrients and digestion are improved. At the cellular level, oxygen is required for proper function.
Mild Hyperbaric Oxygen Therapy has been shown to benefit many people and therefore, I am hoping it can benefit me. It has helped athletes desiring peak performance and rapid recovery from workout or injury, anyone seeking general health improvement and relief from non life threatening conditions, such as headaches, fatigue, arthritis, asthma & allergies and more, people requiring rapid recovery from injury, trauma, or those preparing for or recovering from surgery, and sufferers of chronic and/or serious medical conditions or illnesses such as Multiple Sclerosis, Lupus, Lyme Disease, and more.
Hyperbaric Oxygenation Therapy, however, can make the switch in the brain back to the central nervous system. The affected parts of the body and the brain are treated by different atmospheric pressures, as different undersea depths work on different parts of the body. Deeper depths (up to 33 to 45 feet undersea) work more on tissue and bone, while milder hyperbarics (such as 18 to 24 feet undersea) work on the brain. Hyperbaric oxygen therapy supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, the hyperbaric oxygen therapy has a tendency to constrict vessels by about 15 percent, which causes a decrease in swelling from the edema present in most people with my neurological disease. With my disease, they are hoping that there could be a reduction in pain, improvement in sleep, The thought is that even if I have necrosis in my tissues and in my GI system, they are thinking that besides helping with the other stuff, perhaps it can restore neurological function and tissue life. So… I am definitely keeping my fingers crossed that it can help me. It definitely can’t do me any harm, so it is definitely worth a shot. I was told that almost always, the first symptom to come is the last to go.
Of course I don’t want surgery and tubes and such because it is not only very risky and dangerous in general but it is even more so for me because I am not in the best condition. In fact, the doctors are very skeptical about doing any surgery or procedure on me because I can easily die because of how medically unstable I am and how sick I am. After all, I am only weighing in the 60s and have a BMI of 10.8. Even if I make it through the surgeries, the recovery will be so hard on me because I don’t have the necessary ‘reserves’ to help me.
So… the doctors were thinking that perhaps seeing if the hyperbaric would improve my condition and get me stronger before I had the surgeries. This would mean postponing Hopkins for a bit, which is really a scary thing to think of because I am so very sick right now and postponing could be definitely the wrong decision because I could easily go in the other direction. Instead of hoping that this time of receiving hyperbaric oxygen will buy me time and get me stronger, it can also not help me and I can further deteriorate, which will further harm me because it can easily kill me because I am so weak as it is and can’t survive much more. Plus… it would also make me weaker for surgery too at a later date. But on the other side of the coin… it could really make a HUGE difference and perhaps really improve my situation. It can easily save my life. Whereas these operations can easily kill me just in themselves, the treatments with the oxygen can rejuvenate my system so that when I do have the surgeries I will be better off and better able to heal. So… we really have to decide if we want to take the risk.
In addition, there are other components that are weighing into possibly delaying treatment at HOPKINS. Another big component of delaying treatment there is that they want to put a pump in me to give me medication 24/7 and the doctors don’t really want to do it after I come back from HOPKINS with tubes. As I am rapidly deteriorating and worsening, my meds are not holding me anymore. I have tried every single medication out there and currently take over 50 pills daily. I even take injections and yet… I am constantly in excruciating pain. I am also having the problem of swallowing because of my autonomic dysfunction and neurological disease and therefore, it is making it literally impossible to get the medication down too. In addition, I am also not always absorbing all the meds too because of my gastroparesis. I can literally take my meds in the morning and then when I throw up over 12 hours later, I can actually bring my pills to my dad in a cup that are still ‘whole’ and that I took 12 hours earlier because they are not dissolved or anything. So it isn’t like they are doing me any good that way either. You know? Plus, taking all these medications are only complicating my Gastroparesis too because I am taking so much. If I would get the pump, I would need far less meds because the amount needed to get the same effect is so much less because it goes directly into the bloodstream and spinal cord instead of having to be absorbed into the digestive system like pills do. The pump would also benefit me because like I said before, I can’t swallow anymore, as even swallowing ices and egg whites (which is the little things I can get down) is getting impossible. The pump would make sure that I get my medication because I wouldn’t even have to bother swallowing anything. So it would really benefit me in a lot of aspects.
Doctors have always been hesitant to put a pump in me because of the size that I am. I am really small and even the pediatric pump is too large for me. But it is at the point where we are really running out options and it is really becoming crucial for me to get medications because I am extremely deteriorating and in severe pain. Therefore, my new doctor that has joined our team did some searching and found a doctor that said that this pump is a MUST and should be done. However, it is a multistep procedure to be done and it is a ‘team’ effort. It isn’t just up to this one doctor. There is a whole team of surgeons that must do it and therefore, I am meeting with the final surgeon tomorrow to see if he will do it.
I really need the pump and so far all the surgeons and doctors are on board except for the doctor who will be ACTUALLY implanting the pump. I first have to meet with him tomorrow to find out what he says. I am hoping that he will consent and be willing to do it like all the other doctors want to do because I desperately need it and they think it will really benefit me. The surgeon had no appointments, but thankfully he is fitting me in because he knows how urgent this situation is and how much it is needed. He knows that I need to know tomorrow if he will be able to do the surgery because it is basically resting in his hands. If he is going to be doing the surgery, then more than likely it will result in HOPKINS being postponed because like I said before, the doctors do not want to do this surgery afterwards because they don’t want to do it after tubes get placed in me. So we really need to know what we are dealing with beforehand.
If the doctor does consent to do the pump, it will be a multistep procedure. I will have to be admitted into the hospital for about 2 days to first trial it. They will have to give me morphine by IV into my spine because that is the law to see if I can tolerate it. Since I am so medically complicated and unstable, they will of course keep me in the ICU. The doctors told me that since I cannot tolerate an IV because I am so hypersensitivity and everything causes me pain (even the fluid running in the IV), they will keep me totally sedated during this time in the ICU with high doses of valium and other sedatives so that I will be so groggy that I won’t feel any of it. So at least that is good. If I can tolerate the morphine, they will then implant the pump. Of course there will be other medications that will go into the pump, but the law is that I must be able to tolerate morphine if I am going to have the pump so that is a MUST medication to be able to tolerate prior to having it implanted.
The pump will probably be implanted at Winthrop and I will most likely need plastic surgery because of how small I am. There really isn’t a lot of space to put the pump in and the doctor can’t even put the size pump that they really want to put in me or in the location that they normally put it in. The doctor will probably need a plastic surgeon to build me a location, but we will get all the details tomorrow… providing that the doctor is willing to do the operation. So I am keeping my fingers crossed that he will give the OK to do it and of course I will let you know.
In addition, another thing that is also factoring into delaying HOPKINS is that even the hospital itself has changed there. The hospital is moving away from drugs and only really giving the drugs that I need to ‘end of life cancer patients.’ Even though I am considered ‘terminal,’ I cannot receive the needed drugs because I am not considered to have ‘cancer.’ I am not too sure why they are moving away from all these medications that I need like the ketamine and pumps and everything else. Maybe it all has to do with money. Instead, they are doing interventional pain management, which means that they are just doing injections and stuff like that. That means that people will have to constantly see them and have shots instead of being able to manage themselves at home. I know injections and such are much more expensive and in this way it makes sure that the doctors also get more money because it forces the patient to always have to see the doctor because it is the only relief that they can get because there is no other way to manage their pain. You know? So I don’t know if it is a matter of health benefits or because they are becoming more money grubbing that they are changing the way they practice medicine.
With that being said, we don’t know if I will be kept so comfortable. With me suffering the way that I am, I don’t know if I will be able to handle all that is going to occur down there with the way they will be managing my case. I can’t be treated like a typical patient as it is and I will not be able to tolerate the pain that will accompany the surgery if they don’t put me on a ketamine pump afterwards. Also, if they are going to be giving me tubes and other stuff, I am definitely going to need intense methods to manage the pain such as the ketamine but they don’t know if they will be able to give it to me. Not only will that hurt me because I will be in pain more without the ketamine, but I also need the ketamine to hopefully stop the spread of my illness because my illness spreads through trauma. You can bet your dollar that with all the ‘trauma’ that I will be going through at Hopkins between the surgeries and everything that the disease is going to spread like a wildflower. When I went for the surgery in California the last time to put the tubes in, the disease spread and I couldn’t even stand up. Thank goodness though the doctors rushed me into the ICU and put me into a ketamine coma/infusion because it reversed the damage and got me able to stand back up again. But I was really freaking out because I thought that was it! Ketamine is a ‘magic’ drug because it cannot only help me with the pain, but it can reverse the disease too. That is why I need such a high dose that is not FDA approved and why I so desperately need to go out of the country to get that coma (I really feel like if I got that high dose coma that I could be cured). So I just don’t know what they are going to do.
To be honest… the best hospital I ever was at was in California. The only bad part was that it was located on the other side of the country and therefore, it wasn’t so easy to get to and it was hard on me especially to travel it. However, it really was the best overall because it had the best doctors, nurses, etc. We never felt so comfortable there with the entire hospital because not only were they so knowledgeable, but also the care was off the charts. Everything there was phenomenal. With how I am deteriorating and getting worse, the best place for me probably would be back there.
The problem though is that my head doctor that I had at Stanford hospital in California has left the hospital this month and moved to another hospital. Therefore, what I need to have done has been changed. Even though the rest of my treatment team is there and can still do what my head doctor proposed and such, it is still not the same as if my head doctor was still there. In addition, I really need a multivisceral transplant, which is a transplant of the stomach, small intestine, large intestine, pancreas, and liver. It is extremely radical and risky and to be honest… only 6 hospitals in the country do it and they are very skeptical that I would even survive it. However, it is becoming basically my only option. They had this transplant in California, but since my head doctor has left the hospital, they had to stop it.
So after speaking to my team of doctors today in California, they agree with me that I need treatment and something to be done immediately because time is definitely not on our side. They said that I can come to them, but they also said that they don’t have the transplant going anymore, which is something that I most like will require. That being said, they want me to go to the next best hospital to have the transplant, which is Georgetown in Washington D.C. The doctors ended up faxing over my records and speaking to the hospital there and I am supposed to call them in the morning to find out when I can get the soonest appointment. I don’t know where I am better off going. If I don’t go to HOPKINS because I don’t know anymore if that is the best place for me because they won’t be able to manage me after surgery and for the rest of my diseases and pain, I don’t know if I am better off going to California or to Georgetown.
I really have to decide where I am best off going. I would love to go back to California because I know my doctors there and I know the treatment there is phenomenal. However, knowing that they don’t have the transplant available, I don’t know if it is worth it. However, I don’t know 100% if Georgetown will do the transplant because even though California would want to do it if they had the option, it doesn’t meant hat Georgetown would be willing and wanting to do it even though they had the capabilities to do it. So I don’t know if it is worth going to Georgetown because it is again more time and money… which is something that I don’t have. At least if I go back to California, they will take care of me quickly. They can admit me directly into the hospital and do the surgeries and everything. However, if I go to Georgetown, I first will have to wait and get a consultation and then see where it goes. I have never been a patient at Georgetown either, so who knows how long the waiting list to see the doctor is. Hopefully it won’t be long because my doctor contacted them. As it is… if I was a new patient going to my doctors in California, the soonest appointment she had was not until February. Can you imagine? So who knows when the soonest appointment would be for Georgetown. Thank goodness though that my doctor in California wouldn’t make me wait that long.
So… I have so much to think about and decisions have to be made quickly because I am supposed to be leaving for HOPKINS on Sunday. I am meeting with the surgeon for the pump tomorrow and I am also speaking with all the doctors from the varying hospitals tomorrow as well so that I can get all my cards on the table. Hopefully by the end of tomorrow we will know what we are doing! I will definitely keep you posted. Something really has to be done though and we have to have a plan of action because I am suffering so much. I am really getting worse because not only is the pain getting worse, but so is the neurological disease, gastroparesis, and autonomic dysfunction. I am really bleeding and we don’t know where from, I am getting a lot of mucous still, and I still can’t go to the bathroom. I am also becoming more distended and bloated (filled with air) more than ever because of the obstruction or twist in the colon, and I am so uncomfortable. I walk around literally holding my belly and feeling like I am 9 months pregnant and ready to give birth. I really need someone to ‘pop’ me. Something really needs to be done quickly because I am suffering so much and worsening. I just don’t know honestly how much more of this I can take.
My disease has really taken off though. I have been really weak and in lots of pain. The doctor raised the dose of ketamine that I have been taking at home. There have been so many times that I am so close to going to the hospital, but I don’t go because I am so scared that I won’t come home. I don’t want to die in the hospital and I don’t want to be left there. Even though I know my parents can’t be with me 24/7 because they have to work and such, I really don’t want to be left there because I can’t be treated like a regular patient. The slightest touch or the slightest wrong move can really exacerbate my illness and cause me severe pain. At least when they are around… they are like my guards in the sense that they make sure that no one touches me because people sometimes bump into me by accident or they touch me by accident like when they are examining me and such, which causes me extreme pain. They also make sure that I get the care that I need because I am not a typical textbook case and I can’t receive the same care as a regular patient. For example, I can’t get IV like a regular person and I need meds on a certain schedule too. They make sure everything goes how it should. After all, when you are in a hospital, you really need someone by your side to advocate for you because I have seen so many times that things are done more for patients that have people by their side than others who are alone! In addition, I don’t want to go to the hospital because I am so scared that they will only make me worse because like I said before… they can’t treat me like a regular patient and things that they might think might ‘help’ me actually hurt me. Like I can’t have a blanket on me and they come over and cover me. I also need the thermometer at a certain temperature because I can feel the slightest deviation. When you are in a hospital, you literally freeze to death there. They also do other things that they think will ‘help’ people and it only ends up hurting me. So… I just try to stay at home as much as possible because no place is as good as home! At least I have my family at home and my space!
I was fortunate to be able to spend my mom’s 60th birthday at home with her. I was really happy that I was able to do that. She really had a great birthday even though I would have loved to make it better for her. I got her a really nice cake and they enjoyed it. However, I never got to have my piece because I put my piece aside for the next day and I accidentally left it out of the freezer when I was putting something away the following morning. By the time I realized that it was out of the freezer, it was a little too late because it had already melted. At least they got to have the yummy cake. I guess I will just have to wait until next time!
However, now that her birthday has passed, my dad’s 60th birthday is now quickly approaching, as it is exactly one month after my mom’s. My dad had broken his phone and since he had to get a new one, he finally joined the technological age. I chipped in as his birthday present and he finally graduated from having a ‘flip’ phone to a iPhone. It wasn’t the iPhone 5, but it was the 4S. He didn’t need to have top-of-the-line because for what he needed it for, it was good enough. You should see him with it… it is so funny. He is trying to figure it out! He loves it though! He thinks he will never figure it out, but he is learning. He likes the apps. He loves especially to take his pulse on his phone and the magnify glass app. He is so funny. I am so glad though that I was able to get him something that he truly enjoys and loves because it isn’t often that I get to see him have a smile on his face. He rarely ever gets himself anything and to see him actually get something new and then to be so ‘happy’ over it… it really was great to see.
Speaking of cell phones, the case for my phone finally arrived. I had this case made especially for me and I have been waiting on pins and needles for it. It was coming from California and I have never been so on edge before waiting for something. I think in my opinion (of course I am bias) that it is gorgeous. I am just hoping that the case holds up instead of falling apart because I am so afraid that the rhinestones or pearls will fall off. But this person that made the case is supposed to have really good reviews, so I am hoping that it won’t be the case. This case looks good enough to eat!!
I really have to get better and better soon because all these medications that I am on are not good for me. I have found out that the methadone and ketamine that I am on actually interact. However, they still have me on it because there really isn’t any other choice. However, I found out that because methadone and ketamine are both NMDA antagonists, it is dangerous because they are metabolized on the same pathway. Significant interactions can occur with other medications that are metabolized by the same pathway and in fact, cardiac arrhythmia has been described with high-dose methadone due to QT-interval prolongation. I already suffer from prolong QTs, so I am already at risk. I also don’t want to be on medications forever because even though they may ‘help’ now… nothing comes without paying a price. I found out that even though ketamine might be so helpful to me now, I don’t want to pay the price for it later on because I found out that It was shown that ketamine causes neuronal cell death in developing rodents and nonhuman primates. Based on the absence of human toxicology studies, mixed reports of animal toxicology studies, and anecdotal reports of neurological injury, ketamine should be reserved for terminal patients who fail to derive pain relief from more conventional analgesics.” I don’t want to have my brain fried after all this because when I get better I still want to become that doctor that I want to be. I want to be able to help others so that they don’t suffer the same fate that I had to suffer. So I really have to preserve my brain.
Well… I guess that appears to be all for tonight. I am really not feeling well and I really need to rest. I’ve been trying to read as much as possible even though it is really hard to concentrate and retain what I am reading because I not only want to preserve whatever brainpower I have, but I am trying to do whatever I can to enjoy myself and bring some ‘fun’ into my life. I am currently reading J.K. Rowling’s new book that she wrote under a different name called “The Cuckoo’s Calling!” It is pretty good, but it definitely isn’t like the HARRY POTTER books that she wrote. Nothing can compare to those! They were the best! I miss them!!
I recently also saw in a magazine a picture of a person walking past a billboard and it had all these famous designer names on it. But guess what? It has my name on it too. I don’t know why, but I thought it was great especially considering how rare and unique my name is. So I ended up taking a picture of the picture in the magazine because I thought it was the coolest thing in the world. I know… I am corny.
Well… thanks again for listening. Talk to you when I have more info. Please continue to pray for me and please continue to spread awareness of my website. Please continue to bring attention to my situation because I so desperately need funds for treatment. I hate to be a crier and to constantly plead and to sound like a broken record, but it is just that I am so desperate. I know how important these treatments are to saving my life and I know how impossible they are to have without the help of others. I know that I desperately need these expensive treatments and there is no way that I can get them on our own. So I hope you can understand.