Wednesday, March 5, 2008

The Kidney Post

Since it's no longer just my mother and husband reading, it's probably time to address the kidney portion of the blog, huh? For those who arrived after last summer's fundraising madness, I am one of three members of my family (so far) who have been diagnosed with polycystic kidney disease. PKD is a genetic condition causing uncontrolled growth of cysts in the kidneys (and often in the liver, as well). The cysts create excessive scar tissue, which eventually leads to loss of kidney function and total kidney failure in 50% of patients. Luckily, the cysts in the liver rarely lead to liver failure.

PKD affects one in 500 people -- more than Down syndrome, cystic fibrosis, muscular dystrophy and sickle cell anemia combined. There is currently no treatment or cure for PKD, though scientists are hard at work. The only treatments for kidney failure are dialysis and organ transplantation.

My father seems to have been the first in our family with this disease. He was diagnosed when his kidneys were already severely impaired, and a kidney transplant soon followed. I was diagnosed somewhat by accident 5 or 6 years later, at the age of 19. My two brothers were subsequently tested, and thankfully do not have the disease.

At the age of 19 you don't really worry about a disease that may or may not cause you problems in 20 years, so I really didn't give my condition much thought until my pregnancies (10 & 12 years ago). Pregnancy is rough on the kidneys, and my doctors kept a very close eye on things. Luck was with me, and the pregnancies were relatively smooth. (I'll gloss over the early labor and bed rest for weeks on end, as truly, who wants to revisit THAT?)

In October 2005, during a routine check up, a high blood pressure reading awoke suspicions. Blood work confirmed that my kidney function had started to ebb. I immediately went on a very low protein diet and started reading everything I could get my hands on about slowing down the progress of the disease. Reducing protein intake seems to be the most widely encouraged step that kidney-impaired patients can take, as processing proteins is very hard work for the kidneys. There is more ambiguity around caffeine intake -- my nephrologist believes that caffeine can encourage the cysts to grow, though the research is mixed -- but I've been almost-caffeine-free for years now, so that was not a difficult choice for me.

Since we starting monitoring in fall of 2005, my kidney function has dropped to about 40% and has remained steady for about 18 months, which is very encouraging. Most of the time I don't feel actively sick, but I have much less energy than I'm used to, and my immune system has pretty much crapped out on me. I've lost count of how many colds I've had this winter. My kidneys are hugely enlarged (about 17cm in length at last measure) and my latest scans show "innumerable cysts" in my liver as well. I can actually feel my liver through my abdominal wall, as it is hard and distended from all the cysts.

The conflation of enlarged organs in my abdominal cavity isn't leaving much room for anything else. The pressure on my bladder means that I'm in the bathroom with alarming frequency (you're welcome) and if I eat more than around 1 cup of food by volume at one sitting, my stomach is in misery from the surrounding pressure.

I expect that I will need dialysis or a new kidney within a 3-5 year time frame. I am incredibly lucky to have a brother of my blood type who is willing to be a donor (you'd be surprised how often that is not the case), so I'm in a much better position than many kidney patients.

What is fueling me these days is that our son Quin, who's about to turn 12, was (again, accidentally) diagnosed with PKD last winter. It's going to be a long time before he has any symptoms, but I'm determined to do everything I can to accelerate the research so that by the time it's an issue for Quin, there will be a treatment that arrests the progression of the disease.

Hence our involvement with the PKD Foundation, a terrific non-profit agency with dual missions of directly funding research and providing educational and advocacy services around the disease. Last summer with the help and support of a LOT of friends and family, Michael, the kids and I raised over $9,000 for the annual Walk for the Cure. We'll be active again this year, though probably not to the same extent.

Leading me to this question: as I develop my fundraising insanity marathon program for 2008, do you want to hear about it on this blog, or should I resurrect Cookies for a Cure and keep all the fundraising nonsense in one place? Tell me what you think, because it's all starting sooner than any of us realize...


Anonymous said...

So, so sorry to hear about your liver involvement. Your dad had a liver transplant if I remember correctly.
Please ask your acupuncturist about milk thistle supplements...milk thistle is supposed to be very good for liver function.
As to your question about where to put the fund raising information, it would depend on a number of factors, the most important of which should be, what would be easier for you? You already know you're going to be crazy busy, and I emphasize the crazy. lol
How you manage your already busy life with your considerable disabilities is admirable in itself, but the fund raising goes above and beyond, though your motivation is understandable. You are one impressive woman.
Can you more easily put PKD Foundation things in Cookies for a Cure, and then blog, or would it be simpler to just blog about the fundraising? Again,I think it should come down to whatever is easier for you.
Whatever you decide, it will be fine, I'm sure. My admiration for you and your family continues to soar.

O said...

Hey, as you said in Cookies as it wound down, everything has a season. If you want L&K to be a cyclical blog with sometimes-a-fundraising-bent, fine by me. If you would rather keep them separate, I'll still read both.