Well… it has only been 24 hours since I last wrote, but so much has happened. I really wanted to write to you and let you know now because I don’t know what the future entails and I didn’t want to have it snowball until it is way too much to write and for you to read. Plus… since I just had my ketamine coma/infusion today, I am more than wide-awake now because I am now suffering from the after-effects of the procedure. I am also very nervous about what has occurred today and I thought maybe it will sought a few things out by putting it on paper (or computer… however you want to look at it).
Anyway… ever since I had the ketamine (even though I was in heaven while I was under), I am having severe problems now that it is over with. Not only am I having a reaction to the ketamine, but also my body is paying me back for ‘messing’ around with it. That is the thing with this illness… it hates to be ‘messed’ around with. If you start with it… you better be prepared to suffer afterwards. My autonomic dysfunction really starts up afterwards and my body always gets so much worse afterwards until it goes back to its regular ‘badness.’
Besides my usual pains that I always get, I am also getting a few more things. I don’t know why but my eye keeps twitching and pulsating. I had some complications when I had the ketamine today that resulted in me having to get additional medication (which I will explain later on), so I don’t know if possibly it had to do with that as well. But all I know is that it is really bothering me because my left eye keeps pulsating and twitching. I also am having severe pain in my neck and spine. I always get this pain in my spine and stiff neck afterwards and we never know why. However, if I press on my spine that is at the very utmost top (right in the base of the head), it makes it feel kinda better. I never had that sensation before. I tried contacting the doctor tonight, but I have not heard from him as of yet. I contacted him after 10, so he probably was sleeping because he usually is so good at getting back to me. So I guess he probably will call me in the morning or something.
But people always wonder why I go through with the comas and such if my body does this…. I go through with it because anything is worth getting a relief from the pain that I suffer from. So to escape my hell for the day…. it is worth it. I may curse myself afterwards for going through with it, but at least for one day… I get some vacation. You know? So now I am in pain times 100 and I am also suffering from the side effects of the ketamine as well. I am also having twitch.
Well… I guess I should start at the very beginning. Before I went for the ketamine coma/infusion, I had to go to the internist today for my bloods to be drawn because like I explained yesterday, my bloods are not doing too well. I got back my results the other day and it stated that I was in very ‘critical’ condition and honestly should be in the hospital. It stated that I was at very high risk of having an arrhythmia and cardiac arrest. It was also seen that the values for my clotting was too high, which meant that I was having a great deal of trouble clotting. However, I really didn’t have the funds to go to the hospital because the hospital that I really needed to go to is not local, as I would have to go to a hospital like at Stanford in California, Mayo Clinic in Minnesota, or possibly Hopkins in Maryland. I have a very complicated condition that many doctors are not familiar and not able to able to handle. I need to go to hospitals that are best able to handle my complicated condition, and even these hospitals aren’t too aware are capable of handling me. However, they do have more of the instruments necessary to helping me such as the access to doctors that are more knowledgeable about my condition, ketamine, and special procedures such as the multivisceral transplant (stomach, small and large intestine, pancreas, and liver) that I am hoping to receive as soon as I am able to.
I really need to go to a hospital that isn’t around here in New York because they can’t really offer me anything in a hospital located around here I really need to travel to a hospital like Stanford, Mayo, or Hopkins. I desperately need TPN or something. They might be able to do it in New York if I wasn’t too complicated, but due to all my compilations and all my needs, they can’t do it. I need ketamine because of the intense pain that II am in and how it will hopefully stop the progression of the illness (this procedure can easily exacerbate my illness entirely and spread it).
I also need to have my bloods raised, so they can give me IV with the appropriate medications as well. I can’t really absorb medications or food anymore because my GI tract is basically gone… so at least by getting them though IV… they would be able to help to a point. You know? They also would hopefully be able to keep me hydrated because I am so dehydrated. I can’t absorb and even though I keep drinking… It just isn’t working. I drink and drink, but I can’t quench my thirst despite drinking Gatorade or anything on that sought. I am just so thirsty and to make matters worse… the more that I drink… the worse the aspirations get. So… it is like I am drowning in my own fluids as well and only compounding the problems. the doctors want me to officially never eat or drink again, but of course that can only happen if I get the tubes and central lines and TPN. But since I can’t get that and you need food to survive, I have no other choice but to chance my odds and keep eating despite the aspirating and not absorbing. Hopefully even though it is causing all this bad stuff… it is doing something ‘good.’ You know?
Plus… since I can’t absorb I really are not absorbing all my meds really. By being in the hospital, they might be better able to manage my pain because I will be able to get all IV stuff and everything. However… it isn’t so easy because I won’t be in my own environment, which really can hurt me. I am really hypersensitive and the slightest deviation can hurt me. So since everything can’t really be technically catered to me because of other patients and how they have needs too such as the exact temperature and such… it can hurt me too. Also… nurses and doctors aren’t so familiar with my illness and such so they can’t really treat me like a typical patient. They don’t always realize that and therefore the slightest thing that they do that they think is OK because it is generally OK for a typical patient… it can really hurt me. That is why when I am in the hospital, my dad usually stands guard and watches and tells the nurses what they can and can’t do. He usually posts on the wall that they can’t touch me really …. especially my legs… because the slightest touch (even the most innocuous touch) will send me up the wall screaming. They don’t realize that and they don’t realize that even the gentlest breeze or even putting the covers on me kills me. They have to be careful about everything because even just bumping into me or touching me with the stethoscope or putting a syringe or gauze pad on me will cause problems.
Plus… the hospital is known for infections and with me not having any reserves… it is a haven for me to get sicker. The doctors are so afraid for me to catch anything because they said that if I catch anything… even the simplest cold… I would never be able to fight it. So they are really afraid if I would have to go to the hospital because there are so many infections looming there and a perfect place for me to get something. You know? Plus… with me… I am so hypersensitive and everything is magnified… so the simplest cold is like getting the flu to me. So you can just imagine if I were to get something like the flu… I would be dead in no time.?
So even though it was best if I went to the hospital, we really couldn’t afford it because besides the cost of the actual traveling, the cost of the treatment too would also be too great. Unfortunately my medical treatment is so expensive that we cannot afford it by ourselves. Even when things are covered by our health insurance plan, we still have to pay a copayment and it clearly adds up to be astronomical quickly especially if I was to be hospitalized. Just being hospitalized will cost me a copayment of $150 per day, $100 per blood test or procedure or radiological test, etc.… and that is if they take my insurance at all. I can never catch a break, as not all my treatments, medications, doctors, etc. are even covered by the insurance and therefore, it isn’t just the ‘copayments’ that I have to worry about. So we decided to see if we could manage my condition a few more days at home by raising my meds and see if possibly we could avoid the hospital.
However, we knew that we were really playing with fire and taking a very BIG risk. But honestly… we really didn’t have a choice because unfortunately we were quite strapped for funds. It is a shame how this world is so dependent on the green paper. I sometimes wonder what it would be like if money didn’t exist. Anyway… I knew that if my bloods dropped today further, I would pretty much have no choice but to go to the hospital tonight because there was no possible way the bloods could drop any more.
When I went to the doctor though today to get the bloods drawn, I found out some information that I didn’t know. It appears that not only am I having trouble clotting, which is extremely dangerous, but also it now appears that I am showing the beginning signs of liver failure. I can’t believe it. I can never catch a break. Now another thing is failing me… my liver!!
I am really upset about my liver failing me and I am really scared. I really don’t know what is going to happen to me. I really wonder how much more my body can take. My BUN level is also extremely elevated. The BUN measures the amount of nitrogen in your blood that comes from the waste product urea. Urea is made in the liver and then passed out of the body in the urine. I have been showing symptoms for awhile such as the edema and such, but we just never picked up on it.
I am really worried about my liver, but maybe in the long run that this liver failure isn’t such a ‘bad’ thing. I know it sounds weird to be saying that, but let me explain why I am saying this. The multivisceral transplant is extremely rare and risky. They say that the survival rate of the transplant isn’t the greatest and to make it the 5 year mark is really amazing. They say that this transplant is like the most dangerous transplant that you can ever have. However, they found that people did much better and lived longer if they did get the liver when they got the other organs during the transplant. Yet, before I got this news today, I was not able to get a liver when I was going to have the transplant because there wasn’t anything technically wrong with my liver and they aren’t just going to ‘give’ a liver to someone even though a person would do better with a transplant if they got that organ along with all the other organs. So… it might not be such a bad thing now that my liver is giving me problems because at least now I will be able to get a new liver along with my transplant. This will greatly help me in the transplant. So, I guess things have a way of working out, right?
Besides finding out about the liver, we also spoke about the upcoming surgery for the osteonecrosis as they had a meeting about me. I was told how they want to perform the surgery as soon as possible, but they need to get everything organized and set up so that no surprises are met. They said that the last thing that they need is for something to ‘pop’ up especially when they are dealing with enough complications already. So they want me to go see my cardiologist and have an echo, as well as my pulmonary doctor as soon as possible because they really have to get everything noted. They also want to see exactly what to do about the aspirations because it is a huge problem in general and to have that as an issue especially during surgery… it really is a big deal. So I am hopefully going to see the cardiologist on Friday and I am supposed to hear from the surgeon on Monday about the exact day that the surgery will take place.
Before I left the doctor’s office so that I could go for the ketamine, I asked if I could have the flu shot because it is almost flu season and if I were to get the flu, it would certainly kill me. I can’t afford to catch anything because the simplest thing will really kill me.
I then proceeded to go for ketamine. What a time we had there. Usually while I am having the ketamine coma/infusion, I usually have an additional procedure where I get injections into knees because I am in extreme pain in the knees especially every time I bend or extend my knees. I also keep getting bursitis there and I have severe arthritis too. My disease really has taken a toll on them. Anyway… they usually do some injections into my joints of the knee while I am under the ketamine because I can’t tolerate the injections at another time without the ketamine.
It turns out that the doctor had to switch the injections to something else today because the current injections that I was getting were giving me an allergy in my knees. I was getting all these additional sores on my knees where he was giving me the injections and when I showed him, he said right away that it was due to the injections. So… he had to change the injections that he was giving me and as a result, I ended up having additional problems.
I didn’t tolerate the new medication too well and therefore, I was in a huge amount of pain when I woke up. I was screaming so much and I had pain all throughout my legs and up to my butt. The doctor immediately came in and tried giving me something through the IV, but it wasn’t helping. I was just in so much pain.
In addition, when I had the ketamine today, all my lines filled up with blood and they don’t know why. They thought maybe it had to do with the more intense pain that I was in because of the injections and such and it was causing the spikes of my bloods pressure, but they don’t know for sure. They think it possibly had to do with my autonomic dysfunction as well. They also don’t know if it has anything to do with the fact that I have my clotting off and my blood work shows that it is difficult for me to clot. It was definitely something that happened that never happened before.
Anyway…want to hear something hilarious? I can’t believe that my dad actually did something like this. My dad needed to get into my phone and my phone can either be unlocked by putting in the code or my fingerprint. The code is the easiest code to know… but of course if you don’t know it… you are out of luck. I am surprised after all these years living with me and such, my dad doesn’t know it because I basically use the same code for everything and I use the same principal for choosing my code as he does for the code he chooses for his stuff. You know? Like father, like daughter, right? Anyway… when you can’t talk… he is kinda out of luck, right? Well… I was under the ketamine coma and of course he was out of luck of getting into my phone because I couldn’t tell him anything. So you know what he did? He literally came over to my hand… took my finger… put it over the scanner… and unlocked it that way!! Who would have ever thought he would have done something like that EVER? Who says my dad isn’t a good problem solver and thinker? LOL. Only my dad would have done something like that. I can’t believe the actually did that to be honest with you. You would think that fingerprints are supposed to enhance the security. I guess they never thought about what to do if a person is unconscious or something and how easy it would be for someone to then unlock the phone.
Halloween is around the corner, which used to be my favorite holiday. I know I am getting ‘sick’ because I used to go all out on this holiday and couldn’t wait for it to come. I used to love decorating the house, which was something that my brother and I did together, and the house came out looking totally awesome. I must say that we had one of the nicest and coolest looking houses. Not only was the house so decorated, but also we would go and look for the biggest pumpkins and even bought a really huge pumpkin that would weigh over 50 pounds to put on the outside. Of course that huge pumpkin wouldn’t be carved but would remain outside until after thanksgiving, but that had to stop after awhile because it got too expensive. After all, those big pumpkins are expensive.
I also loved cutting up the pumpkins to get the seeds out, carving it to make the coolest jack O’lantern, giving out the candy to the kids, etc. But now I couldn’t really care less. I couldn’t really care if the holiday came or not. I haven’t decorated my house, cut open the pumpkins, and I honestly wish that I can lock the door and have no kids ring my bell. I really just can’t be bothered because I am so uncomfortable and in pain. I can’t keep getting up and down and be bothered by kids to answer the door. Even decorating the house just takes too much out of me. I really am not feeling well and all I can really do is stay on the couch. I am just so weak. I will probably end up cutting open the pumpkins tomorrow morning because it is a ‘tradition’ and because I have to get the seeds out for eating. After all, my family really looks forward to that and you can only have them once a year. Nothing tastes the same as fresh seeds from the pumpkin. It is like when you go apple picking… nothing tastes the same as a fresh apple from the tree; you can never match the apple in a store even though it says ‘from the tree.’ My family will literally fight over the seeds and try to steal each others because they love it so much. They will finish it so quickly, so I probably will get 2-3 pumpkins. Hopefully they will have a lot of seeds.
Well… I guess that takes care of everything. I think I am going to get going because I really am not feeling well. I just wanted to write and let you know what is going on. Hope you have a great Halloween if I don’t talk to you before. Thanks again for all your support and encouragement. I would never be where I am today without it.
Until Next Time,