KPTX news

Les,

My kidneys have been failing for some time; was told 8/94 that I had 2-6
years to need a tx. Function is now at 23% - dialysis begins at 15%. I DO
NOT want to go on dialysis - but who has a choice when it’s a life/death
situation? I’m on a tx e-list and some there had it done w/o dialysis. Some
had dialysis for several years. One recently died never receiving the tx.
some have had K - P separately, some just one of them, and some together.
Together is better from the same cadaver. That’s the sad part, someone has
to die so I may live.

With my decreasing deterioration (almost 50 yrs of DM) it is inevitable at
this point that a tx would be necessary. My nephrologist had no hesitation
in proceding. The *list members* do not recommend Chicago. I think I could
maneuver around Indy better. BUT, a recent tx-er within 45 miles of me

highly recommends (as do others) Northwestern U in Wisconsin. The main
surgeon there is from U. of Minn where they began the whole tx thing. He is
highly recommended and PERSONABLE!! That gets high marks in my book!! I’ve
dealt with 100s of drs. over the last 5 decades and no about UNpersonable
ones. The facility there is new, etc. After the testings and I qualify, I
will be listed for kptx, then it may be 1-3 years.

Jan

4 Responses to “KPTX news”

  1. kristan_180 Says:

    Jan,
    Your account is very interesting to me, since I was advised over 10 years ago
    that I would be on dialysis within three years, based on the increasing
    creatinin levels. But, after starting using Vasotec (an Ace Inhibitor), the
    creatinin increase stopped, and I have been stable for 9 years with no
    increase. The nephrologist even stopped seeing me every three months,
    pronouncing it a waste of time; now it is every six months. He even said
    that the Ace Inhibitors had altered their group practice, causing them to have
    to do more family practice as there was no longer enough business to support
    the operation full time since the advent of the Ace Inhibitors. I presume
    you have been down this path, but you did not mention Ace Inhibitors in your
    history….
    David

    jan hughey wrote:

  2. damian150 Says:

    David,
    I think anyone on this list who has had a history with doctors can agree
    that not all doctors are *personable,* I began seeing a neph about 4/94 (35%
    function then). At the first visit I had told him I took Dyazide for 16 yrs
    but it was removed from the mkt because it was harmful to diabetics’
    kidneys. He said he disagreed that anything that lowers BP is good. He said
    I would hear about ACE inhibitors and Captopril was patented for being the
    *best* because they thought of putting it on their literature first, but I
    shouldn’t believe them. I was taking Vasotec at the time and lost another15%
    in 1.5 yrs.. 3 mos. later at the next visit he took me off V and gave me
    Captopril. I became very ill - coughing and coughing to the extent of
    coughing up foam. I had no appetite and lost 7# in 10 days. I could only eat
    cream style corn and white bread with bacon. (well, it was food).

    This went on for about 6 wks. I called his office a couple of times with no

    response,
    and even *popped* in so they could view me. He ordered an inhaler. That made
    me gag and vomit. I asked 5 pharmacists what was making me cough like that.
    They all said the Captopril. I looked at that tiny little pill (3 a day) and
    said, "I cannot put one more of these in my face if this is what’s doing
    this to me." I went back to the Vasotec. That was a Thursday and my next
    appt was to be Mon. On Mon. I told the ass’t what I had done. The neph came
    in and was fuming. He gave me a song and dance of how uncooperative I was
    and hadn’t given the inhaler a chance, and that Captopril helped 95% of
    people, blah, blah, blah, blah, (I began looking at the ceiling). Then he
    said something about how he was trying his best and my fault and that in all
    his 10 months of practice he had never had a patient like me…and something
    else, I said, "Hog wash." He gathered the papers, got up and stormed out of
    the room. I get lost very easily and said, "I don’t even know how to get out
    of here." He pointed the direction and said, "That way!!!"
    I now go to his boss. (wrote a letter). I am taking 16mg Cardura, 200mg
    Cozaar, and 10 mg Norvasc daily. I had to quit the Clonidine - put me to
    sleep to heavily in the a.m. I went to the Uof M in Ann Arbor for a 2nd
    opinion on that many diff meds (didn’t know about the ‘net yet) and they
    agreed it was the proper treatment.
    Jan

  3. kristan_180 Says:

    Jan, that is quite a tale. My experience was much better; I was on four or
    five different BP things and after starting Vasotec got off of all the others,
    and with 20 mg once per day stabilized the kidney problem and all the side
    effects from the other stuff went away. That was almost 10 years ago. So I
    am sold on Ace Inhibitors.
    David

    jan hughey wrote:

  4. rodney_800 Says:

    Jan,
    I had a somewhat similar reaction to captopril. Except I spent a couple
    years on mine. Finally asked the pharmacist about my cough and he said it
    was due to the cap., mentioned this to my dr and within about one day the
    coughing stopped.
    Gail

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