The first person that I ever spoke to about living with PKD was in 1987, after I had ruptured a cyst. This was a gentleman whose name was given to me by Dan Larson , head of the PKD Foundation. I spoke to this gentleman on the phone. Unfortunately, I do not remember his name. But what he told me about his life with PKD was EXTREMELY encouraging. He told me that he was on hemodialysis, worked, and played softball regularly. He said, “You can have a full life with PKD!”
It was very fortunate that my first conversation with a PKD was a positive one. It definitely was a major ingredient in the development of my attitude towards my disease.
Basically, I was told that I still had much to live for and much to look forward to.
I know that younger folks with PKD worry about their future. And this is good. Indifference is usually not helpful. However, “worry” is often wishing that a bad thing won’t happen. And whatever you focus on tends to expand.
Many of us tend to fill our minds with “what if…what if…” and conjure all sorts of negative scenarios. Why this is, I’m not 100% sure.
But suppose the mind was filled with “I wonder what would happen if I…” wrote a letter, made a telephone call, initiated a contact, asked a “deep” question of an acquaintance.
The suggestion is to develop a positive “Big Why” for your life. Give yourself a mission, a purpose!
If some avenues of life appear closed to you, seek one that is open to you! Dwell on what you can do, don’t waste psychic energy bemoaning what you can’t do!
I was told of a man who wrote a book while on hemodialysis. He utilized his time productively.
Again, for younger people “worrying” about attracting a mate, remember that medical technology is improving daily. Keep up with the latest developments. Connect with other PKD patients through the internet. Join the various “message boards” and be encouraged by those who have travelled the PKD Odyssey ahead of you.
Developing an attitude of “positive expectancy” as you go your Odyssey will help you keep your eyes open for life opportunities that put a “charge” into your life.
True, there are days when you don’t feel “positively expectant.” This is understood. But I think you’ll agree that having a “Big Why” will help prevent your mood to get too far down.
Let’s connect! Perhaps I can assist you in developing your “Big Why!”
Please contact me at
to set up a complimentary coaching conversation on developing your “Big Why!”
Why Not?
Peace and Blessings!
Coach Richie Perl
