Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hey guys! I'm Brian!
I'm 29 years old and I was diagnosed with PKD about 3 years ago.
I'm on Nefedipine, Metropolol, Novastatin, Vit D, and Allopurinol.
I was diagnosed after a baseball game when I slid into 3rd base hard and kicked the ball lose on impact. I landed feet first with most of my weight on my ribs. The following morning I had shooting pains up my ribs and kidney region (clearly an infection) accompanied by a serious fever. I almost passed out on the way to the ER. Apparently I clean sheared off all of the cysts on one side of my right kidney. That seem to be the event that set everything I'm motion.
I always had high BP and a large gut. I thought it was diet but it is mostly enlarge kidneys causing my belly and bladder to protrude. When I was 18 I weighed 207lbs. After my diagnosis I have slowly over 3 years risen to 325lbs. Looking at me, I have a gut, but I don't look fat. More like a pregnant man in a way. It's a tough thing to shop for for sure. I don't know how much weight is kidneys or getting older and not eating a good diet. I know I've put on plenty of stress pounds since my diagnosis. I work out 6 days a week weather it be P90 or going for long hikes. I also work a job on my feet all day. So hopefully I'd like to lose as much weight as possible.
My brother is a twin, he also has PKD.
I've accepted this burden and this experience has brought me closer to God. I spend my time being more... Understanding and Positive to people and their chronic difficulties.
I've quit a 9 year addiction to chewing tobacco and a 20 year addiction to pornography. I do yoga and read. I do a lot of mindfulness and journaling to keep perspective.
This is a hard road. It sucks. But we most strive to do our 130% every damn day. If anyone has any questions please let me know.
If we have any fitness buffs here is like some thoughts on weight loss and fitness with PKD.
Also when I can get a webcam I plan to start a PKD vBlog.
Nice to meet you all.
Welcome to the group. I've been here for 8 years (!) and it's good to have new members. I've recently been told that I will need dialysis/transplant within 12-18 months so am currently trying to get my head around that. I will need a dual kidney/liver transplant because of my enormous polycystic liver. I sympathise with the shopping for clothes problem and at age 50 now, being asked when the baby is due is becoming increasingly embarassing! My husband says I should see it as a compliment as I must still look young enough to be having more children. I guess you have to look for the positive. I'm thin apart from the huge abdomen, so people assume it must be a pregnancy. What else could it be?
Looking forward to hearing more from you.
Chewitt
I get called Rudolph, told to "calm down" or to "relax" all the time at work from my red skin.
Im 36 and recently been diagnosed. Like my fitness but have had to make some changes. I'm fortunate in that it hasn't caused me too many issues as yet. Have had to quit Jiu Jitsu for obvious reasons but still doing gym and running for now. Some of the heavy lifting causes slight issues if puts pressure on back but mostly okay. Also brought a bike so may start riding
I'm new to this group as well as recently diagnosed with PKD and PKL. I'm 35 and I lift 6 days a week and I'm doing cardio. I'm not sure how this diagnosis will impact my fitness routine. I'm hoping it won't for quite some time. I've been reading about lowering protein intake, reducing caffeine and drinking lots of water. Is that what y'all do?
Thanks!
Drinking lots of water is a must. Not sold on the caffeine debate, the doctors in the kidney unit here don't seem to think sensible intake is a problem.
On the protein issue, we are not advised to reduce protein intake in PKD. It's a bit different from other kidney diseases and we don't need to watch our protein until the later stages of the disease when it might affect things like phosphorous, if phosphorous levels are climbing. Again, we should eat a normal (moderate) amount of protein and not overload our bodies with red meat etc. Avoiding protien unnecessarily may lead to malnutrition, which brings a whole new set of problems.