In the meantime, the doctor is making arrangements for my arrival since it will most likely require this immediate emergency surgery. Plus I am not a regular surgical case, as I am extremely complicated and need urgent and special attention. Since I am so complicated and medically unstable, I need more than one anesthesiologist and need a whole special team in the room because if something should happen, I need more than one person able to help. Plus, I need all different specialists in the room during the operation as well because they never know what to expect with me. Any little thing can set something else off especially since I have that rare neurological disease and autonomic dysfunction. So all bets are off. Not only am I nervous, but also so are they. In addition, I will require ketamine before the surgery, during the surgery, and after the surgery. Having ketamine around the clock is not an everyday occurrence and therefore, it requires careful planning as well. I need it because it is really the only medicine out there that can potentially help keep the disease at bay and stop the spread of it. Any traumatic experience can spread this disease and of course surgery is extremely traumatic and therefore can spread it BIG time. It is hoped that through the ketamine around the clock, I will not only be kept comfortable because it will act as a painkiller, but it will also allow the disease not to advance. At this point especially we cant afford for this disease to advance because it is extremely horrendous already and it is everywhere. I already am suffering so much already and all the time. I cant imagine it being any worse nor do I want to. You know? I was really nervous because originally we were only supposed to go to Maryland for a few days and then we were supposed to come home because later on that week we were supposed to leave for California to have all those other surgeries. I was planning on having all those other tubes put in when we went to California, as they were trying to buy time since I was running out and deteriorating so much. They were going to try to put that NJ tube in me to try to find that piece in the intestine low enough that is still viable and able to accept food by bypassing the entire GI tract, as well as putting in that vent tube and central line. However, now that I will be having that emergency surgery in John Hopkins, I obviously cant be in 2 places at the same time and therefore, I wont be able to go to California most likely. It really complicates things as well by not being able to go to California at that time because my head doctor was supposed to be leaving the hospital right after I was supposed to have my surgeries in California. So now that I am not able to have those surgeries at that time, I dont know what is going to happen because my head surgeon will not be there any longer after August. My head doctor is still not sure completely where he is going or anything, so I dont know exactly what I am doing. But, it does look like he is going to be going to Kaiser Permanente, so I guess that would be where I would be heading in mid August if I wanted to remain with my head doc. I mean I really want to stay with him because he is one amazing physician. I never met such a great doctor. He is extremely knowledgeable, an excellent doctor, and even set up a whole successful program in Africa. Yet, since I am so complicated, I just hope that the other doctors in the other specialist areas can help me because it isnt Stanford hospital. You know? I never heard of the hospital Kaiser Permanente and even though I might have an outstanding head GI doc, it doesnt mean that I will have excellent care overall because of my other complicated conditions. You know? So I am just hoping it will all work out in the end. I am also hoping that I will make it that long because I am deteriorating so much that pushing it off is not the smartest thing to do. I am really nervous because I am losing weight and such and with surgery I definitely dont have the reserves to recover. Especially with having this emergency surgery, it is going to take a lot out of me. I just hope that I will be able to make it to see him in mid-august to try to buy this time because if I was deteriorating before I have this surgery I can only imagine what this surgery is going to do. In addition, I was so afraid that we would have no place to stay now that we were going to have to remain in Baltimore longer. The hotel that we were staying at was completely booked for the days that were originally booked for and I really thought that booking for additional days was going to be an impossible task, especially since it is the summertime and we are staying in the harbor. I guess Baltimore is a prime place to be in the summertime especially the harbor because it was literally impossible to get a hotel. Plus they were extremely pricey too. Thank goodness though that I got a discount because I am going to the hospital though. But even so it is still expensive just not nearly as much as it couldve been. Thank goodness for the little things. So as I said, I was extremely scared that I wouldnt be able to get the additional days that I needed. I mean I knew they were completely booked for the days we were already staying and I needed to add on at least an additional 1- weeks. But, after speaking to the manager, he told me that I could add the additional days. What a relief that was. At least I know that there will be a place for my dad and I to stay well actually for my dad since I will most likely be in the hospital during that time. I am really getting nervous about going to the hospital because of the surgery. I have been to Hopkins one other time, but it was with my mom. I already told my dad that since we are arriving on Thursday and my appointments arent until the next day I want to just spend the day walking around the harbor. I never get any FUN in my life and the only thing I have in common with that three-letter word is the first letter. I basically spend my entire life cooped up and isolated in the house because my illness has robbed me of so much including being able to go out. I really cant do a lot because the weather has to even be perfect to even go outside. The slightest difference in the temperature that is tolerable for me can send me in excruciating pain. I cant go out in rain because the drops that hit me feel like bricks being dropped on me. I cant go out in wind because it is extremely painful. I even cant go out in the sun especially when it is a hot sun because it burns me. So essentially I need the perfect weather in order to go out and I need to be extremely careful or else I exacerbate my illness and suffer more. This disease is HELL. In fact, the doctors have even stated that if Hell was a clinical medical condition, it would be known as my disease. But like I said I really want to go to the harbor and just sit around and watch the boats and stuff. It looks really beautiful and something will be really relaxing. I just hope that the weather permits me to do so. I think it will be good for both my dad and me to be able to do that because not only will it relax us but it will give us something to do and get our minds clear for our big day that follows.
Posted on: Sun, 07 Jul 2013 06:18:16 +0000
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