Tuesday, November 11, 2008

6 month check up

Everything was great. Everything except that pesky creatnine.

It's up. From .8 to .9. Now, other doctors will tell you that I'm still in the range of normal. They'd be wrong.

My nephrologist carefully explained that it's not about the range, it's about where you started. My creatnine started at .6, which is really pretty good. Now, 2 and a half years later, it's .9. That means I've lost 40% of my function in that time.

At this rate, my nephrologist calculated my kidneys would fail in 3 years.

She thinks that won't happen, though. She thinks that my function will level out--sort of hit a rock bottom quickly, and stay there. She said she doesn't think anything will need to be done for at least, oh, 5 years.

5 years.

I told all of this to my husband, and then I said, "We need to think about the next five years. We need to think about what we want to do, what we want to accomplish, the vacations we want to take. Because everything could change in 5 years."

I don't know for sure that I will be on dialysis in 5 years. I don't know for sure how things will change.

I do know for sure that we are going to the Bahamas this spring for our 10th anniversary. Yessiree, I'm gonna milk this thing for all it's worth.


the wiz said...

It's all about the vacations for you, isn't it?

Di Hickman said...

Done the bahama's for our first year anniversary. Hurrican floydd was there, not fun but we made the most of it.
I'm with you totally. Make the most of the time you have NOW. One girl I know did a book of things she wanted to achieve before she died. Listed them out 1 -100 and once achieved she'd scrapbook it. She didn't have PKD just kidney failure, her Mom was a suitable donor and ended up giving her a kidney. Definitely made me look at the whole PKD thing in a new light.
My Mom is 'scheduled' to go on dialysis in the new year, if her function levels drop another 2 points which they are doing regularly 1 point a month. Her life is going to change drastically, we know this, my grandad was on dialysis for years we know the drill. But it's been a HUGE wake up call for me.

Becky said...

wow! humbling to read. you milk this for all you can. you're worth it. 5 years will go fast. i'm praying for you my friend!

Liz said...

My parents went to Hawaii the summer before my mom started dialysis. They went for three weeks! Now she's on dialysis and talking about a transplant. I didn't realize what an ordeal that was. Test after test after test... hopefully it all works out.

Anonymous said...

I too have PKD. Was diagnosed 2 years ago at the age of 49. Was having health problems for years and was always told it was "in my head". After being stubborn enough to search for a doctor who would take listen to me SHE ran a bunch of tests and that was the end result. My kidney function is .6 right now and I am also involved with the HALT Study at Tufts in Boston. I am the first in my family history to be told I have the disease. The HALT Study has been a Godsend for me!

Deborah said...

I just discovered your blog today and have enjoyed reading about your journey and have found it very informative. I was diagnosed with PDK in June of 08. I was not one to visit the doctor, but when I noticed a large lump just below my left rib cage, I thought I'd better have it checked out. I was immediately scheduled for a CAT scan and 3 days later the doc called with the news. He told me to look the disease up on the internet and scheduled some additional lab tests. Those results came to me in a letter with the hand written comment "everything looks fine, lower salt intake and have blood pressure checked and labs in 1yr" My creatinine level is .9 which is within the normal range, but I have no earlier number to compare to. I guess I will have to wait until I go in again in June to find out if things are going downhill. I never got to see the pictures from the CAT scan, so I was suprised to hear that you have so much information about your kidneys. I look forward to reading about your participation in the Halt study.

Heather O. said...

Hi Deborah--So glad you found us!

I've never seen the initial pictures from my MRI, although I did call and request a copy of the actual report be sent to me directly. I kind of freaked out and threw it away after reading it a thousand times, and now I wished I had kept it, as so many doctors have asked for a copy since then. The only reason I have such an intimate knowledge of my kidneys is because I've had so many ultrasounds, and I always request to see the picture during the imaging. I have an ultrasound every 6 months, and then while I was pregnant I had several, so I always asked to see my kidneys then, too. I'm hoping with my MRI next week that I'll get to see those pictures. It never hurts to ask, right? :)

Janice said...

Hi Heather. I don't want to spoil your fun but in the "allotted" 5 years, you might want to consider doing research about hemodialysis and peritoneal dialysis system for early insight and preparation just in case. Wish you well and have fun! :)