At Wed, 8 Jan 2003, K Nygren wrote:
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>I am writing this having been up all night in extreme pain. My MS Contin hasn't done anything, I have doubled up on my hydrocodone and taken it every two hours instead of every four. I saw my urologist today...of course, I wasn't in all of this pain at the time. The pain is all left sided. I have my nephrostomy tubes hooked to their drainage bags, but have not had any urine draining out the left tube. The urine output from my right tube as well as the urostomy has been somewhat decreased as well. I am at the point right now where I just want to die and have this all over with. I can't deal with it any more.
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>The urologist and I had another long talk today. When he talked to me while I was in the hospital and brought up the idea of doing the surgery he talked about my being DNR or Do Not Rescusitate. He wanted to know how far I wanted that carried and if it would be even worth it to do surgery. I explained to him that my feelings were that if something went wrong and they believed that they could restore my life to the way it was without the benefit of machinery than I would want to be rescusitated. But, I do not want to be brought back only to live a life which had less quality than my life does now. Knowing that, he does want to proceed towards surgical intervention. At this point, I have a lot of soul searching to do. He believes that it is very likely that I could end up with not only a urostomy bag, but a colostomy bag as well. Most likely it would also be something that is permanent. Given that I have had such major problems with my urostomy, I really have to put some thought into whether I want to go down that path or not.
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>He is planning on contacting my surgeon from Chicago as well as sending me to a number of different surgeons to get their opinions. Is this something that I want to start doing again? Or should I continue as I am being hospitalized every two weeks with awful infections? He told me that at this point my kidneys are relatively healthy. He said that typically in people that had the problems that I have, the best solution would be to remove the kidneys (to stop all of the infection) and undergo dialysis. But given that my kidneys were in pretty good shape, it didn't make a lot of sense. I didn't even bring up the fact that I had been told that I was not a candidate for dialysis. I'm thinking though that he has a different opinion on that matter. To me, the removal of my kidneys is too drastic of a measure and something I will not consider. I have no doubt, though, that this would not be something that my doctor would be willing to do unless it was under dire circumstances.
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>I did discuss the matter of the SprayGel with him. He is very interested and wants all of the information I can give him. He also indicated that he would ask around to see if he could find out what others think. He agreed that it sounded like a good thing...if we can get the compassionate use. He is taking this all very slowly, exploring all options. He knows that this will most likely be another 15 hour procedure so is proceeding very cautiously.
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>At this moment, I want the surgery and I want it now!!!!! I can't handle this pain anymore. The home health nurse comes in a couple hours. I will see what she has to say and then I will call the doctor's office or go in to the ER. I feel relatively good.....not like I was in the middle of an infection or something. I have no clue what is going on....I just want it to be over with. Please, please, please say an extra prayer for me today.
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>Love to all,
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>Karla
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>**Soaring with my angel**
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>http://www.geocities.com/karlasfamily2001
>http://www.geocities.com/princessd82000/BraydensHaven