People with kidney disease welcome to share there experiences
I have chronic kidney disease Mark.. Plodding Hippo is on Fetch more than this site but is the expert.
She told me I wouldn't notice any problems until it got worse than it is. I totter between Stage 2 and 3 and tbh I swear the tests are wrong because I do feel pretty well.
Hi, I seen on some sites that endurance raises can cause kidney problems which sent alarm bells ringing. Im on stage 1 My Renal function is normal just that over the last few years ive had quite a few relapses mainly because ive stopped my medication without doctors consent lol. I never really understood how dangerous this was as i didnt feel ill so i thought i was ok. Now im more aware the more damage i cause the worse im going to be in the future so i do my best now to look after them. Im glad to speak to someone else who runs with the same condition because theres nothing i can find on the internet with knowledge on running with kidney disease. Hopefully all stays well for us. My kidney disease is minimal change nephrotic syndrome whats yours and how did you come to find out you had it?
I try not to think about mine tbh because it just makes me anxious.
I don't think I have a diagnosis! I had a serious health issue resulting in surgery and a spell on ICU and it came on following that. Not sure if it was due to a general inflammatory thing or the drugs that I was treated with. I moved rapidly from Stage 1 to Stage 3 and was going to have a kidney biopsy but I also have thrombocytopenia which meant that was more risky so they decided to do further tests....it stabilised and the further tests suggested it wasn't Stage 3 so biopsy cancelled. I also took anticonvulsants (am I sounding like a Munchausen ) for epilepsy so they stopped those in case they were making it worse and I think I'm fairly stable but tbh I really have no idea because I developed headinsand syndrome following all of that!Anyway occasionally I'm ridiculously tired and a bit pale but the headinsand syndrome means I ignore all of that and assume it's anaemia but don't get tested for fear of what else they might find
My belief is that it is not affecting me. I think it's more the awareness of it ...that is affecting you.
I know how you feel im 24 now but when i was 15 i was diagnosed with Chrohns Disease where i was really ill and lost a whole lot of weight tbh i thought i was on my death bed but i took my medication and recovered well and im still in remision now which has been 9 years so im lucky really i keep thinking they have miss diagnosed me. Then when i was 18 i was partying way to hard and one day i noticed that my stomach was swelling and that i hadnt been to the toilet for god knows how long. i wnet to hospital and the little urine i could pass was tested and was found to be packed with protein. I didnt know what this ment if it was bad or normal but they said it was bad and i had to stay in for ten days. I had a Kidney biopsy which confirmed i had minimal change nephrotic syndrome and ive been on medication since. Prednisolone, cyclosporine. My blood pressure also went up but since i have lost weight this has sorted itself out. Im anxious everytime i go for my checkups as the tablets i am on are dangerous so they have to monitor me making sure the dose im taking doesnt become toxic. This is one of the reasons why im trying to get myself into shape to try and prevent anything else popping up lol
Have you tried discussing your specific anxiety with them?
I find it very hard to get information - it's either alarming or uninformative. I do think headinsand is a vital stategy now
I don't have kidney disease, and know very little about it either, so sorry, and please excuse me for coming along here with no knowledge or advice whatsoever.
But reading this thread made me think of this guy who I accidentally stumbled upon when I was doing some IM-related Googling...
He's set up a foundation in America to encourage people with renal failure to look after themselves/improve their health through exercise. No branch in Europe at the moment, but it looks as if they're planning to roll out the foundation more widely than just the US/Canada.
Probably not of much help to your situations, I know, but just made me think, that's all.
Good luck with getting to grips with it all.
Hi guys, just wanted to pop on to add a bit to the 'running with kidney disease' thread.
I was diagnosed with IgA Nephropaphy late last year, came completely out of the blue, was just trying to change an insurance thing for the mortgage and they kept finding blood (microscopic) and protein in the wee tests! Eventually (why does everything take so bloody long on the NHS!) had a kidney biopsy last October and was finally diagnosed with the IgA.
The reason I'm sharing this is because I had signed up for my first marathon last year and was in the middle of my training when I had the biopsy and was adamant it wouldn't keep me from running. I ran a 10K about 4 weeks after the biopsy and was absolutely fine. Bit apprehensive (the nurses do like to scare you after a biopsy making out you can't do anything BUT my consultant was very relaxed about the running) but all was hunky dory . Kept up the training and have since run a half marathon and a full marathon this April.
Currently not on any medication but my last kidney check up shows that kidney function has worsened since last time and I'm still waiting to see what they decide to do next, however, I still feel fine!!
And yes, still running - albeit a little less at the moment, but that's only because I haven't got back into a proper routine since the marathon - and intend to keep running.
Kinky Pig - love the headinsand syndrome Am often guilty of that one too!!
Mark 1986 - I would say definitely go for it with the running. The thing I keep reading about the kidney stuff is maintaining a healthy blood pressure to keep the kidneys in order and in my opinion surely exercise is the way to go with that?
Mark - you're doing great to be running 3 times a week already, well done you Regularly I never got more than 3 runs a week in for any of the races I did last year! Hope the legs are keeping good for you.
I can understand you feeling anxious about the hospital checkups, tbh I think I was a bit blase about this whole kidney thing, especially after the consultant told me that IgA can rumble on for years without getting worse and even sometimes disappear altogether apparently. I assumed because I feel fine that I'd be one of those statistics so it was a bit of a shocker to be told the kidney function had worsened - wasn't prepared for that at all!!
Am still waiting to hear if they are going to do anything at the moment, had to see a young Dr. at that appt (an hour and a half delay on appt. times and then had to see the inexperienced one!) and she wanted to check with the main man, so took more bloods, made a provisional appt for Sept. and said she'd write to let me know the results of chat with big Doc and bloods. Guess what...still waiting! Ah well, hopefully no news is good news.
Hope you're still enjoying the running, really must get back into that properly!!
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