>----- Original Message -----
From: "Karla" <ifirgit@yahoo.com>
To: "Multiple recipients of list ADHESIONS"
<adhesions@mail.medispecialty.com>
Sent: Monday, October 07, 2002 2:11 AM
Subject: It should be cancer.
> 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!!!
>