From initial diagnosis until the end of life, the Polycystic Kidney Disease is on an Odyssey. An endless journey that leads one through a whole range of physical and emotional highs and lows. Anyone on this Odyssey will rarely, if ever, be bored.

The shock of initial diagnosis, the ordeal of telling the people close to you, the fear of a limited life, the onset and worsening of physical symptoms, the day of being told that dialysis is necessary, the fear and newness of dialysis, the restrictions that dialysis imposes, the hope for a transplant, the wait, the hopefulness when an organ becomes available, and hopefully, the joy of a uccessful transplant, the fear of rejection, the balancing of meds and their side effects…that’s the overview of the Odyssey.

But describing it in words is nothing like “the real thing,” the actual living experience of  these stages. As we know, ther are days…and there are days.

PKD patients often seek some sort of support. I have asked people on various forums what they mean by support. Believe or not, I have never received an answer.

For me, support has several components:

First, the understanding of my nephrologist. This, surprisingly, is not always a given. It takes some skill to have your neph treat you as a person over and above a set of numbers. I helped this happen by relating my symptoms in the contect of my real life. Example: my bones were very weak and I often had bones bruises in my feet. I would tell my neph how painful it was to stand on the subway. This was something to which he could relate. It made me more “human” to him. I have a great relationship with him that has gone on for 14 years.

Second, understanding from my family and friends. In the mid 90′s, the Internet wasn’t like it is today. In order to explain the disease to those “who needed to know,” I had a brochure describing the disease from one of the pharmaceutical companies. I showed people the brochure. Since they were readin gabout the disease from a “neutral” source, it wasn’t like I was “whining” about how bad the disease is. The reaction of those reading the brochure indicated to me who would helpful, and who wouldn’t be.

Third, structure. I was fortunate that I was able to work through the symptomatic stage and through the hemodialysis stage. Although I was often fatigued, the work kept my mind somewhat off myself.

I’ll continue this on my next post.

In the meantime, I’d love to hear what your definition of support is.

Please enter your comments below.

Thanks!

Peace and Blessings!

Coach Richie Perl