Amanda’s Nephrologist and I had discussed the importance of notifying my family of the genetic results so that any family members suffering high blood pressure could decide if they needed/wanted to check and see if they actually had PKD as well. It was my intention to discuss it with them when I saw them all Christmas day, but somehow I just did not feel that the timing was right. Christmas is supposed to be a day of fun and family, not intense news of a potentially life threatening condition.
I actually have 8 other siblings (yes, I am one of nine). Several have had high blood pressure over the years, but no one has ever been diagnosed with PKD until me. There is a possibility that I self mutated the gene myself, but since our mother was adopted, I feel that I have a responsibility to tell them. If there were a family history on my mother’s side, we would never have known. I didn’t want to sound depressing on Christmas, but really, how does one tell friends and family about something like PKD.
I guess I will be making several telephone calls now to explain the situation, and then leave it up to them to decide how they want to handle it and if they want to follow-up with their own doctors.
Subscribe to:
Post Comments (Atom)
2 comments:
I think you made the right call by not discussing on Christmas day.
Personally, I've often wondered about the statistics they give on how many people mutate this disease. My wife, Jeanne, falls into this category of people who have PKD, but no known family history. I hear numbers like 10-15% of people mutate the disease, but I'm suspicious that they are overcounting because in some cases, the disease can progress slowly enough that a person can live their life without ever knowing they had it.
Hopefully, your siblings will take your phone call as an opportunity to become educated about the disease so they can factor the possibility into their future medical care.
Eight siblings and you got to see them all on Christmas! Sounds like the makings of a formidable Walk for PKD team in 2008! :-)
I think someone needs to come up with a script for how to talk about this. Those of us with PKD are on our own to discuss it and it never seems to be the right time to bring it up. For me, it has been easier to discuss because things are slightly different from when I was diagnosed over 20 years ago.
Post a Comment