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• Thursday, January 07th, 2010

Let’s backtrack a bit.

As my fistula was developing, and before I started hemodialysis, my nephrologist “suggested” (read: ordered!) my wife and I to make an appointment with a transplant co-ordinator at The Rogosin Institute, here in New York City.

I’m sure you have had blood drawn for testing. Should you get to go to a transplant center, (and for those who need one, please go as soon as possible!) be prepared to have about dozen vials of your blood drawn! It’s amazing to see a rack of test tubes with your own blood in them!

And, since my wife was there, the nurse asked her if she wanted to be tested to see if she could be a donor. My wife, with a shrug said, “Sure!”

And a dozen vials of her blood were drawn.

After a little class given by the transplant co-ordinator to the few of us who were there, we left. They said they would get back to us. So what else is new!

All I knew was that I was registered with in Rogosin’s transplant program. Note that I was not yet on a list.

About a month later my wife gets a call from Rogosin that her blood type and antigens were a good (not  perfect) match and could potentially be a kidney donor for me!

This was unexpectedly good news! By this time, I has already started hemodialysis, so I wasn’t expecting any “quick fix.”  Nevertheless, the Odyssey continued.

Over the next three months my wife underwent a lot of tests! And I do mean a lot!

X-rays. 24-hr urine wearing a blood pressure monitor, and, an angiogram!

Finally, around Thanksgiving of 1997, she was told that she qualifies as a donor!

Ultimately, surgery was set for Jan. 6, 1998. Imagine how that New Year’s Eve went!

But I still had to get checked!

And Murphy’s Law was involved!

A routine X-ray showed a cloudy spot. I saw it myself. I couldn’t convince the doctors at my local hospital that was a bit a asthma acting up (which it was.) The doctors didn’t want me to go home! They were sure I was dying of pneumonia! (I was fine. Not even a fever!)

Fortunately, my dialysis-center doctor “just happened” to be by the Radiology department. I called him over, and after some hassle, I signed a release form and was allowed to leave!

It took two weeks to resolve this. I finally got another X-ray which showed my lungs perfectly clear!

Further pre-op tests included an MRI (mainly of my head(!) to see that I was in no danger of aneurysms.)

My wife and I were scheduled to check into Rogosin on Jan. 5, 1998.

Stress.

The night before we were to go, we were at each other’s throats!

“Are you sure you want to do this?”

“Yes.”

“Are you sure you’re not going to hold this up to me whenever we have an argument?” (Notice I was the one starting one!)

“What do think I am?”

On and on.

Well, the next morning we went to Rogosin.

But wait…there’s more obstacles!

Stay tuned!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

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2 Responses

  1. 1
    Alexandra 

    I just joined this and am now wondering a bit if I should have or not. I have spoken at length with some of the representatives at the PKD foundation without much satisfaction. Is there any room on this blog for someone who would like to discuss living and dying with PKD I am a single 70 year old woman who has had a terrific life and is planning to let my kidney’s fail and die when the time comes…..This is a life choice and I am wondering if there is anyone else out there who has made a similar decision….I would love to share ideas and stories. Thanks Alexandra

  2. 2
    CoachRichie 

    Hi, Alexandra!

    Clearly, allowing your kidneys to fail is a decision that is irrevocable. I am not sure what you are seeking. If you have made up your mind, then, I would think no discussion is necessary!

    If you. as you say, want to share “ideas,” then, I wonder if you have really come to the decision to die!

    What ideas do you wish to share? With whom? To what end?

    What stage is your PKD currently at?

    What is your current life experience that would lead you to want to die?

    What would you have consider being “satisfied” with the people at the PKD Foundation? What were you seeking from them?

    I hope you consider some of these questions as you make your plans.

    Coach Richie Perl

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