My dear Karla,
sometimes I feel that it would be better to have cancer than an
incurable diease of the liver. With cancer you have options &
treatments. With alot of other dieases you don't have that luxury.
Please feel assured that I know what suffering you are going thru. May
God ease your suffering.
Annie
At Mon, 7 Oct 2002, Karla wrote:
> >Hi all! > >I am home again....I don't know for how long. It seems that I can't >even stay out of the hospital for a whole week anymore. I was home for >about three days and was scheduled to undergo surgery to replace the >nephrostomy tube in my right kidney and possibly place one into my left >kidney last Monday. Unfortunately, before the Thursday before my pain >became totally unbearable. I didn't feel sick as I have with all of the >infections that I have been going through lately, but I just didn't >think that I should be tripling up on my Ms-Contin and my break through >medications. My urologist had me admitted to the hospital in Green Bay >where, yes, I had yet another infection...actually pretty mild. But, >there was a larger obstruction to my left kidney. They did postpone my >surgery until Wednesday when I was feeling more up to it. At that point >they went in through my back (all while I was awake) and removed the >original nephrostomy tube in my right kidney and placed a new one. They >then placed a stent into the right kidney. Just when I hoped and prayed >that they were done....I was crying because the pain was so bad....they >placed another tube into my left kidney and a stent into that one as >well. They had me on vancomycin almost every day of my hospitalization >to that point and I still managed to develop an infection along with >pneumonia and high fevers. I was sent home on Saturday with the tubes >actually clamped off to try and get all of the drainage to come through >my urostomy. Hopes are to be able to remove the nephrostomy tubes and >just have the stents...boy would I love that because these things are >impossible to sleep with. > >Anyway, I went in for my first dosage of outpatient vancomycin last >night and learned that I was running a fever again so the tubes had to >be unclamped. Please realize that they have been trying to remove the >tube from my right kidney since August and they are starting to believe >that I may be stuck with that one for the rest of my life since when it >is clamped most of the urine just backs up until being unclamped....thus >all of my infections. I hope you all can follow this. Now I have two >of them and I cringe at the thought that the left kidney could have that >same result....that I would have to live with these tubes coming out my >back for the rest of my life. This may sound trivial to all of >you...but it is soooo painful and I am feeling sooo sick. > >I was thinking about all of this today and I began to wish that I had >cancer. Not to trivialize that disease...because I know that it reeks >devestation...but at least with cancer there would be an end. I have >been suffering with all of this since 1991. At least, that is when all >of the surgeries first began. I thought it was bad when I was having >all of those surgeries in the early 90's...26 of them from 91-99 with >probably 20 of them being from 91-95. I learned to say no to anymore >surgery. But, when all of the stuff started getting bad with my kidneys >and doctors said that the next infection could kill me, I started >wanting something done. I am ready to die...but, I am a fighter and >would never just roll over. Enter a brilliant urologist new to this >area whom when he entered my life at the beginning of this summer had >ideas to help prolong my life when my doctor wanted to put me in a >nursing home. Mind you...I am a relatively able-bodied (meaning I can >walk, talk)46 year old. I don't need any nursing home...so I jumped at >the ideas he had...and my doctor thought him to be brilliant as well. >This doctor developed different plans to try and correct the problems >with my kidneys...everything short of abdominal surgery which he would >not try nor would I allow him to. But where has this gotten me? I am >much worse off then I was at the beginning of the summer. The pain is >so intense. My daughter worries because I cannot eat and the weight >just falls off....luckily I have been overweight since giving birth to >her. Even the thrill and enjoyment of seeing my grandchildren is >darkened as each hug and kiss is filled with pain. All they have to do >is touch my back and I scream in pain....never meaning to scream at >them...but scaring them at the same time. > >Today, for the first time, I went to Walmart and had to ride a motorized >cart. All the friends that I ran into thought I looked awful...I didn't >argue because I felt worse than that....but I am sure the total stranger >wondered why I was being lazy...except they did stare at the iv tubes >hanging from my neck. I don't want to be this helpless person. I want >to walk through the aisles...even if it hurts..but I know now that I >can't...at least not now. I apologize for this email being so negative. >I always try and be positive. But I have realized that at least with >cancer there is an end. Either I'm cured or I'm dead. At this >point...I'd be happy with either result. > >Every time you think about having surgery because the pain is so >bad....think of me. If you can't get to the best doctors out >there.....don't do it. A lot of people don't like it when people tell >them not to have surgery....I don't care. I say it because I can....and >because I care enough for each and every one of you to want to scare the >crap out of you so that you won't do anything you will regret in the >future. > >Love ya!!!