I saw the neurosurgeon today and it appears that he will be implanting the pump in me on August 27th at Winthrop Hospital. I cant believe that I am at least going to be able to have this surgery in New York. I am so glad because this way I am close to home and I will be able to have the comfort of my entire family being there. Usually I only have my dad with me because my dad is the one who travels with me across the country. However, now that I am close to home, I will be able to have as many visitors as I want and I will especially get to see my family, which is very important to me. It gets so lonely and scary in the hospital, so to be able to have visitors (especially my family able to visit), it really is a plus. Usually I am so far away that the only visitor that can come is my dad. I will be having a pump placed I me, which is an automated piece of equipment that is programmed to deliver medication into the spinal fluid through a catheter. Unlike medications that circulate throughout your body in your bloodstream, drug delivery therapy releases medication directly into the fluid surrounding your spinal cord, which may lead to fewer or more tolerable drug side effects. The pump releases prescribed amounts of pain medication through the catheter directly to the fluid around the spinal cord, in an area called the intrathecal space. The pain medication approved for use in the pump includes morphine sulphate and ziconotide. Since I am deteriorating so much, they think that I desperately need this pump because it is at the point that I am having too much trouble swallowing my medication. In this way, I wont have to swallow the medication, as it will be delivered directly into my spinal fluid. It will also be more powerful and potent than taking pills, which is something that I desperately need. The illnesses have become way too painful and it is at the point that nothing is helping to alleviate the pain even a little. I am literally climbing the walls. Therefore, they are hoping that by getting the pump, it will give me better pain relief. The doctors are also hoping that the medications will be able to possibly work better because I will not have to absorb the medication through my digestive tract first, which is paralyzed and then go into the bloodstream. I can literally swallow my bills and when I vomit over 12 hours later, I can still see my pills that are not dissolved. By having this pump, it will bypass the digestive tract and I wont have to worry about pills having to dissolve. Finally, it will also cut down hopefully on the amount of medications that I need. I take over 50 pills daily and I am on high doses of meds, which also cause further problems. After all, nothing good comes without paying a price and of course all medications come with side effects. Unlike oral medications, drug delivery therapy releases medication directly into the fluid surrounding your spinal cord rather than traveling throughout your body in your bloodstream. This may lead to fewer side effects, such as nausea and constipation The surgery is very dangerous in itself, but it is even more dangerous for me because I am not like the typical patient. I am medically unstable, I only weigh in the 60s, I am malnourished, and I have this illness that worsens and spreads like a wildflower if any trauma occurs. I also have severe autonomic dysfunction and as a result, it can cause many complications during the surgery especially changes in my blood pressure, heart rate, etc. at any time that can easily throw me into cardiac arrest and stop it. I am already in extreme pain 24/7 and going through surgery will only make things worse. Not only will the surgery in itself be dangerous, but so will the recuperation and recovery because I dont have the reserves such as the nutrition and fat to recover. I can easily catch an infection and if I do suffer any complication whatsoever, it can easily become life threatening because anything minor is something major in me because everything is scaled upward in me due to my illnesses. I also risk getting inflammatory masses at the tip of the catheter, which may lead to complications, including paralysis. Not only is the actual surgery dangerous, but I will also be having a hardware being placed in me. That means that there will be a foreign object being placed in me. Not only do I run the risk of my body rejecting it because my illnesses do not tolerate foreign objects (it doesnt even tolerate IV lines), but I also run the risk of infection not just from the actual surgery itself, but from the device afterwards as well. Since I am so thin, I dont really have any cushioning or padding for it and as a result, it can easily erode through the skin. That being said, it can easily become infected or cause additional complications. The doctors are extremely fearful that I am going to have many complications of having the pump implanted because I am so thin such as the catheter or pump moving within the body or wearing through the skin. The catheter could even leak, tear, kink, or become disconnected. That being said, the neurosurgeon has arranged for a plastic surgeon to be in the room as well during the operation because he is going to try to help fit the pump in me since I dont really have the space necessary for it. The Plastic Surgeon is going to try to build me up an area that will have more cushioning and padding and hopefully be able to fit the pump better in me. I cant believe that I am going to have a Plastic Surgeon in the room on top of everyone else. It is going to be like standing room only in the room because there are going to be so many doctors in the room due to my complex condition. They will need a separate doctor to monitor each aspect of me and they will even have a backup in some of the specialties that are in the room just in case they run into a problem. For example, there is going to be more than 1 anesthesiologist in the room because if there is a complication there will be someone there to help the other anesthesiologist out. I just never thought that I would ever be having Plastic Surgery. I made a joke when I heard that I was having Plastic Surgery and I said that I was making a list of all the things that I wanted to have done when I was under. I told the Plastic Surgeon that I wanted to have my nose redone, breasts implanted, a face-lift, etc. He thought it was really funny. Even though this pump is going to be extremely prominent in me, I really hope that it works. So I will be having the surgery on the 27th and it will be a long day. I will then be put into the ICU because of how hard the surgery will be on me. I will also be given ketamine during the operation and afterwards to try to keep me comfortable and as a way to try to not spread the disease, as any bit of trauma can potentially spread my disease and surgery is extremely traumatic and basically a guarantee to spread it. So hopefully by taking all the precautions with the ketamine (by having it during and after), we will be able to control the illness and have it not spread.
Posted on: Sat, 17 Aug 2013 07:57:03 +0000
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