August 22, 2013 Hi- Just wanted to give you the latest update since things are happening! Plus, I am in so much pain tonight and suffering so much that I cant sleep (which is no different than any other night). I am weakening so much that I basically spend all my time on the couch. I barely ever get off the couch nowadays as I basically just lay the day away I would say sleep the day away but I am in way too much pain to do that!! I just wanted to let you know that tomorrow well actually it is today since it is after midnight when I am writing this that I will be undergoing surgery and being hospitalized. I know I spoke briefly about it in the past, but it has been decided to happen today and it is an emergency, so that is why I am writing to let you know all the new upcoming news. Oh... before I begin... I also want you to know that August happens to be Gastroparesis Awareness Month as well, so just wanted to point that out as well. Maybe by bringing awareness to my situation, I can be helped more because more people will know about it. After all, power is in numbers and the more people who is knowledgeable about all that is happening and about this illness, the more we can raise awareness and fight it. Even if I cant necessarily be helped, I hope that I can make an everlasting mark in the world and bring awareness and attention to this illness because no one really knows about this illness. I hope that other people dont have to suffer the way that I am. Treatment and a cure need to be found and the more people that know about it the more it can be sought! Since I am really deteriorating, the doctors feel that they have to move as fast as possible. Therefore, they have decided to proceed with surgery. As I discussed previously, I need to have a pump implanted because of how bad things have gotten. I can no longer swallow medication because it is getting too difficult and I am not absorbing it should be either. I can literally take the pills in the morning and then when I vomit over 12 hours later, I vomit them back up and I can literally bring them back down to my dad in a cup because they are not dissolved whatsoever. Therefore, it is not really doing me any good because they are not really being absorbed and I am not getting the medication like I should be. You know? In addition, I am deteriorating so much that the medication that I am currently on is no longer holding me. By getting the pump, I will not only have to take it orally anymore as it will continually dispense it, but it is supposed to be so much more powerful. Instead the medication going into the digestive system and into the bloodstream like it does when you swallow pills, the pump puts the medication right into your spine, which really makes it more powerful. So they are hoping that by having the pump, it will not only be beneficial because it will avoid me having to take the medications orally since I am having difficulty swallowing and such, but it will also help me more with the pain and such because it will be so much more potent. However the pump is an extremely high-risk operation especially for someone in my situation because I am not in any condition to be operated on. I have no reserves either to recover with because I am less than 70 lbs. and I have so many issues going on. Not only do I have the usual risks of having the actual surgery in itself, but I also have the risks of having an external device in me because I am having hardware being implanted in me. Especially since I have autonomic dysfunction, we have no idea how my body is going to react because my body literally rejects everything and anything. My body can literally shut down and go into total organ failure because of this pump because it will reject this foreign hardware. With my illness, my body hates when I mess with it and believe me I am sure that it is going to make me pay the price because I am going to be messing with it. You know? Not only do I have the regular risks of surgery, but I have the additional risks of having a severe infection or complication afterwards because the machine can easily erode through the skin as well. I am extremely thin and as a result, there is no padding really to go over it and cushion the machine. The doctors have a real fear that the skin is going to erode and the machine is going to come through the skin because of how thin I am. They are also really scared because they dont know honestly how they are going to fit the pump into me because I am so tiny. After all, I dont weigh a lot and the pump is so big. Even though I am only getting the pediatric size, it is still considered extremely large especially in consideration to my body. I am way too tiny to have this pump put into me, as I only weigh in the 60 plus pound range. There really is no room for it. The doctors told me that it is going to be extremely visible on me, but it is at the point that I dont care as long as it helps. It isnt like I wear a bathing suit anyway. You know? To help with the implant, the neurosurgeon is going to have a plastic surgeon help him implant the pump into me. He is hoping that with the plastic surgeons help that he will better be able to place it and that the plastic surgeon can possibly build something so that it can be placed more comfortably. He is hoping also that it will also be beneficial because it will lead to less chance of it becoming eroded because it is a real possibility especially in the condition and state that I am in. With that being said, the first part of the operation I found out is going to be tomorrow, which is actually today because it is after midnight. I am extremely nervous because I know how dangerous it is. However, this first part needs to be done because the second part, which is much more serious, is supposedly being performed on this coming Tuesday, August 27th.
Posted on: Thu, 22 Aug 2013 06:09:25 +0000
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