Saturday, June 24, 2006

Diagnosis stories

This weekend at the PKD conference was the first time I met anybody else who has PKD. I meant to slide in, stay quiet, observe and take notes on anything important, and then quietly leave. Well, darn it if I didn't meet a whole bunch of people, including the leader of my chapter of the Foundation who now knows my name, my address and phone number, and every other piece of pertinent information that he could use to pull me into this whole thing, full force. Am I ready for all of this? 6 months ago, I would have never dreamed I would be where I am.

6 months ago, I was on the phone with my sister, and I mentioned that my toes were often numb. I don't know why it came up--who talks about her toes, anyway? But it did, and she insisted I tell my doctor about it, rattling off all the reasons it could be deadly disease X, Y, or Z. Seemed silly at the time, but the next time I happened to see my doctor about an unrelated, simple medical issue, which took about 2 seconds for him to resolve, I said, "Oh, my sister thinks I should tell you that my toes are often numb. I don't think it's a big deal, but I told her I would tell you, so, there you go."

Apparantly, the doctor agreed with my sister, and ordered a series of tests, one of which was a back MRI to rule out spinal cord tumors, or something of that nature. The radiologist who did my MRI actually let slip that she saw something, something serious. Yeah, lady, you're gonna have to give me more than that, especially after I sat in that freaky MRI machine for 20 minutes! She shrugged, gave me the usual disclaimer that she is not a doctor, but then said she thinks I have PKD. I'd hever even heard of it. And certainly, since I'd never even heard of it, it must not be true. But just in case it was, I did call my husband from the doctor's office and told him to book us a flight to Hawaii. If I was dying of a deadly disease, I might as well do it on the beach!

The day after the MRI, my doctor called me at 7:30 am (never a time you really want to talk to anybody, much less a doctor) to confirm what he called "freaky news". It was real.

So that's my diagnosis story. A lot has happened in those 6 months, and I've learned more than I ever thought I would about a disease I didn't even know existed. Please share your diagnosis stories: what symptoms did you have, what led the doctors to the diagnosis, etc, etc. Let's get sharing, people!


Raoul said...

Hi. Good to read about your experience with PKD. You might want to visit my own at

Also a PKD patient.

Jennifer P. said...

Hi everyone,

I just found out three days ago that I have PKD. I am 35 years old, a mom of 5-year-old triplet sons, and in "perfect health" in every way. I recently had a C/T of my abdomen because of a small painful lump near my ovary. That turned out to be an easy one - scar tissue from my c-section that can simply be removed under sedation. What I got as a freebie was a very unexpected PKD diagnosis! I am adopted, so I never knew if I was at risk, and I have absolutely NO symptoms (perfect blood pressure, perfect kidney function, etc.) Now I am trying to figure out how to get my head around what may lie in the future. It is all very surreal to say the least because I feel so healthy, you know? I am really trying to focus on the positives here: 1. I found out VERY early and can possibly (??) do something to slow the disease's progression. And 2. As much as I don't want PKD, there are SO many worse things that C/T could have found. My "it could be worse" outlook usually gets me through, so that's what I'm hanging on to! :-)

Anyway, I love your blog - you seem to have great attitudes! Let me know if you need another "regular".

Jennifer P.

Jeanne said...


I don't have PKD but I lost my 66-year-old mom to the disease in 2003 and my brother has also been diagnosed with it. My mom was diagnosed when she had a kidney infection in the mid-1970s and was told that she would never see her children grow up. My brother was having a scan of his bladder for a totalyl unrelated problem when the technician said to him "and of course, you know about the cysts in your kidneys". Both diagnoses were so badly handled and caused so much distress!

My mom also always used to say that of all the incrable diseases she coudl have been diagnosed with, she got off pretty lightly.

I wish yuo a lot of success with your "online support group" :-)

Brent H. said...

I am happily married to a wonderful women and 2 beautiful children. I work in the health care field, as a Paramedic, and never heard of PKD until September 2004. That was my diagnosis month. I woke up one morning to use the bathroom and it all started with hematuria, peeing blood. One test led to another, and my urologist referred me to my nephrologist I have now. I have had kidney function tests and I monitor my blood pressure every other week. I do have occasional episodes of back pain, then I know the bleeding will begin soon and then it finally disipates. There is no documented cases of PKD or any other forms of kidney disease in my family. I recently started a workout regiment through my work to try to stay healthy and doing a lot of cardio exercises.

Thanks for having an online support group and keep up the good work with your blog.