Re: Fw: [TRNSPLNT] Living donor liver transplant at Lahey, Boston, Ma.

[Guest guest]

>Thanks, Lori, for the VERY interesting article about the liver-kidney

>transplant.

Earlier, I posted my questions about association between liver and kidney

disease and it gave me chills when I read the article after I'd posted.

I've been checked for kidney problems over and over for more than 25 years

but no one has ever pinpointed a problem. They've found excess protein in

my urine and I've had repeated urinary tract infections. In 1989 I had an

attack of what my doctor suspected was kidney stone pain but like a dummy,

I declined an ultrasound.

In 1991 I developed severe pain in my left side at the waist (not in my

back). We were living in Europe and there was a bit of a communication gap

between me and the first doctor I saw. He said the pain was probably

caused by a spinal disc reduction and sent me to a physio-therapist, who

kind of pummelled my back hoping to reduce muscle spasm. It just made it

worse and the therapist was concerned so he stopped the treatment and told

the doctor he was afraid he was causing more harm than good. I lived with

the pain for almost another year, then during my routine annual

gynecological exam, my doctor found considerable blood in my

urine. Amazing that I'd never noticed.

The 1-1/2 cm (about 3/4 " in diameter) stone that was detected was so large

the technician was shocked that I'd managed to develop a kidney stone that

big without it being detected. He said that he'd never seen one so enormous.

I had lithotripsy, which in Switzerland is like something Dr. Mengeles

might have dreamt up, and it didn't touch the stone but I thought it was

going to kill me since they didn't give me anesthetic until I was ready to

pass out from pain. In 1993 I had it done again in Portland, Oregon. The

fragments were examined and I was told it was an oxylite stone, the hardest

kind. It took 3 weeks to pass the fragments through a stent and I

developed a latex allergy so that the stent also became a problem.

From then on, right up until 1997 just before I was diagnosed with AIH,

there was always blood in my urine. However, ultrasounds and IVPs and

repeated analysis could never find the cause. After AIH was diagnosed,

possible kidney problems became low priority and I've only had 3 urinalysis

since November 1997. As usual, one of the urinalysis detected a urinary

tract infection of indeterminate cause. I didn't even know I had a

problem. I felt nothing unusual.

Apparently there are different types of kidney stones. Oxylite stones are

the hardest but I don't know if they are the most unusual. I was told in

1993 that I would almost surely develop more stones. The pain in my left

side never went away, even after the lithotripsy, but for the past year and

a half it's moved to my upper left side just under my rib cage though

sometimes it still hurts at my waist.

On the 8th. of November I had another ultrasound and they still don't

detect new stones. But, apparently because of the pain, my Internist is

now sending me to an Urologist who I'll see in two weeks.

I don't for a minute think that I have anything like the man who had the

liver-kidney transplant, but I DO develop oxylite stones and apparently my

body produces massive quantities of oxylite.

This points out once more that it is so important for each of us to be

persistent with our doctors and to do all we can to find a physician who

wants answers and doesn't just shrug off anything he or she can't

understand or diagnose. I am so grateful I have a doctor now who obviously

isn't going to stop looking for answers until he has them. If we have a

pain in a specific location that doesn't go away, the fact that the cause

can't be determined doesn't mean that the pain is in our heads. It just

means that the cause can't be readily determined.

I'm really grateful for the article and I'll pass it on to the new

Urologist for his consideration. It might give him someplace to start in a

direction he might not have followed.

Take care,

Geri

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