*save the kidneys*
...or Ann's PKD Story so far
* I was diagnosed on March 18, 2009. I know the date like my own birthdate because that’s the day my life changed. Some tech was on the phone giving me the results of the MRI I’d had just 4 days before. “Everything’s normal except they noted cysts on your liver and kidneys… were you aware you had Polycystic Kidney and Liver disease?” And with those words, life as I knew it was gone. I didn’t know that. I didn’t even know what that was! But as I googled – that’s what geeks like me do – I realized quickly what a mess I was into. I had gone to the orthopedist for some low back pain thinking maybe it was my scoliosis acting up although I had thoughts way in the deep dark corners of my mind that something might be up with the kidneys but yet none of the infection signs were there so I brushed them back into the darkness. But with the MRI news, the spotlight was now right on those thoughts and just what sort of state my kidneys were in.
No treatment and no cure. With those words the tears fell. They still fall some days. The kidneys and liver are still kicking and totally are in the game but that doesn’t mean that I’m comfortable in this body I’ve been given. Although with random low back pain that finally got me to the ortho doc, I’d had pain in my low right groin and I’d been tired. Like really tired. For months. I remember back to Christmas when I really just didn’t have the Christmas spirit and was so glad when it was over and I could just sit and not have to run everywhere. I remember Thanksgiving just not wanting to move off the couch and not because I’d eaten too much – I can’t eat too much now cause the enlarging liver is pushing on my stomach. I remember back to September and having the weirdest spell of acid reflux for a week – that was the liver starting to push on the stomach most likely. I have to think back a couple years at least to actually think I remember feeling GREAT and being myself. Turns out that with the cyst formation comes anemia in the form of low levels of Vitamin B12 as well as Vitamin D deficiency. I took a trip down to Mayo Clinic in Florida to have them verify that I'm getting the right treatment for the kidneys and liver and on that trip we may have discovered yet another cause for the fatigue - a thyroid that's not working properly so hopefully now that I'm on meds for that I will start to feel better so that I can battle PKD with all that I've got! That low groin pain that it took numerous doctors’ visits to get one to listen to me and check it? Turns out yet another complication of PKD, an inguinal hernia which I had repaired in mid-June. It was caused by the lack of room inside as my crazy cystic organs pushed down on my intestines, stretching that abdominal wall. Fun, huh? Then there’s the kidney stone I’ve got lurking in my right kidney. Yep, I’m having loads of fun! *NOT.* PKD can also cause cerebral aneurysms, mitral valve prolapse, and diverticulitis. Let’s hope those stay away and I’m done with complications. Then, there’s always the dark cloud hovering on the chance that my kidneys will start to fail and I will either have to go on dialysis or have a transplant.
So, for now, the game plan seems to be for me to be kind to my kidneys. Drink water. Keep my blood pressure down. Lots of praying that my organs hold out. And hopefully the extra vitamins and thyroid treatment will help resolve my fatigue. Doesn’t seem like a lot, does it?
This is a disease that is usually passed down genetically however in my family I seem to be the lucky one. My mom was tested and her kidneys and liver are cyst free. My brother and nephews too hopefully have missed this – or so I pray! My father might have had it but he died in 1986 from a heart attack at the age of 63 and no autopsy was done so we’ll never know for sure. He could have had them and not ever been diagnosed. I’m also not aware of anyone else on his family side that has it either so maybe I’m the genetic mutant of the clan. Ha!
We’ve known about this disease for years but yet we don’t have much in the way of treatments or even a cure. It affects every race, every age, every gender, every ethnicity. It affects 1 in 500 people. There are parents seeing their babies for the first time on an ultrasound finding out that their little bundle of joy is coming into this world with diseased kidneys and who, if they live any length of time, are doomed to need a transplant at an early age. There are people in their 30s like me who go and have a random diagnostic test only to be told the news - sometimes it’s just news that they have the disease, other times they are told their kidneys are failing. Then there are people in their later years discovering that they have it but their organs have held out for them and the cysts are just a minor annoyance.
I’ll be doing the Walk for PKD in Nashville on Saturday, Sept 19, 2009. This is the big yearly fundraising for the foundation to fund research, education, and awareness about the disease. I’m asking for donations to support my fight against PKD. No donation is too small – every penny is a penny closer to a cure!
If you made it this far, I want to thank you for reading this! It means I've done part of my goal to raise awareness about this disease.
Ann & the Kidneys
If you are interested in learning more about PKD, please visit the PKD Foundation’s website:
http://www.pkdcure.org
To donate online to my Walk for PKD:
http://www.pkdcure.org/annj71
** or you can send me a check or give me cash if you see me and I can turn it in for you at the Walk.
Rich is also walking and you can donate online on his page if you'd like:
http://www.pkdcure.org/richj70
To check on Team Annie's progress towards the goal or to join our team in walking in Nashville, visit:
http://www.pkdcure.org/teamannie
And lastly, if you are curious about what a polycystic liver looks like, go here to see photos of MY liver, taken during my hernia surgery back in June 2009:
http://ponygurl.smugmug.com/gallery/8817114_m4cmF
