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!!!