Monday, March 19, 2007

If you can't trust the internet....

This is the kind of stuff on the internet that I hate. The first sentence includes the word "horrific" with the disease PKD. This was the kind of stuff that terrified me when I first got diagnosed.

This article suggests that PKD is this terrible, awful, evil disease that will rob your life. That you can only live 4 years from a kidney transplant. That life as you know it will end once you get diagnosed with this "horrific" disease.

I'm sure whoever wrote this "research" paper did so with good intentions. And it sounds like he or she was personally affected by a death in the family as a result of PKD. But what I wish I had understood when I first got diagnosed is that everybody has his own story. And this is only one.

For example, not everybody dies after 4 years with a kidney transplant, that in fact, survival rates with a living donor after 10 years can be as high as 77%. Those are pretty good odds, if you ask me. I have been able to meet people who have been living even longer than that with their transplanted kidneys, and their lives are far from horrific.

PKD is not an easy disease. I doubt you could say any disease is easy. But certainly there are harder ones to live with, and ones that are more horrific. I hope that we can see more examples on the internet of people living happy and productive lives with PKD.


Jessa said...

I just glanced quickly at the article, but it jumped out at me that the author is recommending NSAIDs for pain, which is just plain WRONG. Every doctor I've seen for my PKD has said, "Don't take NSAID's; they're too hard on the kidneys." Good grief.

Heather O. said...

THere were a lot of things that made me say, "Good grief", like the sentence that used the word "crappy". Now there's a scientific term for you.

stephanie said...

Hi ,I am very new to all this ,and I am glad I did not find that article first. It is hard enough to deal with this thing, for me the worse thing is that it is hereditary, I did not know it was in my family and by the age of 42 I have 5 children. At least I had them, I read how you only have one and have been told to think about no more .I have said to my 21 year old daughter to not wait to have her babies but not have as many as me LOL .Up till now I have told her to wait, years.
I am at the very early stage, my fist symptom was the pain and with out the family history I had seen a lot of doctors to rule out lots of other things. I have been on pain medication but now I know what I have I needed to get off them all .I tried alternative methods and one that worked for me, (given I’m in the early stages, it would not work if your pain is from pressure) Is Acupressure, Cupping, it has worked so far, has any one else tried it? I don’t expect this to work forever but it is making life easier now.
It is a horrible disease but as you say, there are worse .I was thinking that the other day, thinking of all the things I could have and comparing .I have found out recently after a long search that my uncle has this in its full form and has lived on Dialyses for the last 14 years, he has had problems but basically treats it as just a routine thing he has to do, like a job, its his job to stay alive. He has also suffered an aneurism and heart values replacement, everything it can throw at us. Other relatives have just died from it with out being diagnosed till after death, it seems in my family the best thing is to know you have it and so prolong your life.
I appreciate your blog, keep it up.

Heather O. said...


Wow, 5 kids. Good for you!

I have not tried acupuncture for my pain, but I haven't ruled it out, either. My pain has been fairly recent, actually, as I have been able to manage it through diet and exercise. Weird that once I started exercising regularly, my pain went away, huh? I'm not sure what it means, and everybody I tell that to just shrugs and says, "Well, keep it up!" But as the pain gets worse, I think I would definitely consider acupuncture, if I could find a practitioner in my area.

Thanks for reading!

Lisa M said...

I had the opprotunity to sit in on many a legislative debate this year, and I cringed to my toenails when a a senator said,

"Now a kid born with a clef lip is a damn tradgedy."

People just don't *GET* it.

As always, Heather, I appreciate your take on these things, and thank you for sharing the information and personal experiences with me.

It teaches me more than you'll know.

Vicki said...

I was diagnosed last year with ADPKD at the age of 45. I was getting blood pressure readings of 130/100. "Horrific" is not a word I would like to hear. My diagnosis included my most hated phrase, "innumerable cysts", and then went on to say I also had renal artery stenosis. At least that could be treated with an angioplasty. I am on BP meds now. Thank God I don't have any pain.

In reply to Stephanie -- I am the fifth of seven children. As of today, only two have been diagnosed with PKD, one male and one female. The oldest is 57 and the youngest 38. I have only one daughter, but she is already doing the things that should prolong her life if she does have it -- eating a low protein diet, exercising regularly and watching her blood pressure.

I would love to participate in clinical research (especially the one involving Rapamycin) but unfortunately the renal artery stenosis diagnosis rules me out.

Anonymous said...

I understand about the word, "horrific" I wouldn't exactly put PKD in the "horrific" disease catergory. I can think of a handful of diseases that are worse, diabetes, lupus, shall I go on?
My only sibling and I both have PKD. My father also has it and has been living with his transplant for 22 years now!
Staying positive, yet realistic is the only way to go!