Every clinic is different. My nephrologists office sends patients for teaching when they reach 3.5. There is a 2 half day program that teaches about all the modalities and diet and lifestyle issues. Given where your creatinine is right now, it's probably too early as it will most likely be many years before you require dialysis and if you get teaching now, it will probably be out of date by then.
While I delayed too long, my creatinine was about 10 before I went on dialysis.
It varies a little bit depending on your lab, but if you get to look at your results, they will show an acceptable range. My transplant clinic considers any creatinine below 1.3 (115 in numbers used in Canada) to be normal. As I said before, what you need to see is trends over time to see if the remaining kidney is holding it's own or getting tired.
Have you been followed over the years? My center follows yearly my cousin who gave me a kidney. She just has to send in her labs done locally once per year. Have your levels been changing? I would definitely see a nephrologist if you have any issues.
Sorry, but I'm not sure what the "normal" levels should be if you only have the one remaining kidney. They may be slightly different from the normal levels found in folks with two fully functional kidneys.
Hi there. I am a PAK (pancreas after kidney). I have no experience with the sort of swelling that you mention. For the first year or so I did have some slight swelling on the side of my new kidney, but that went away. I hope you can find some resolution to this issue.
As for changing transplant center, I have not done this either, but know of some people who have. I don't think it's that big of a deal. Just find a new doc you like and have the records transferred. A good place to meet others like us is Transplant Friends. They have a kidney/pancreas board. Best of luck to you.
I'm sorry, but without further information and test results, there isn't anything that can be said. It could be anything from high blood pressure (don't know if that's involved) to some sort of genetic issue. Post back when you get results and/or see the doc.
Most kidney issues are not fixable, but many are treatable and you can maintain function for a very long time.
Hi there and welcome. I didn't have pkd, my excuse was diabetic nephropathy. After more than 30 years of type 1 diabetes, my kidneys pooped out. I was very lucky and my wonderful cousin gave me one of hers - on her birthday! Believe it or not, I met my now husband on Lavalife after the transplant. I knew he was a keeper when I told him about the kidney stuff. All he said was to thank my cousin for him. We have been married for 3 1/2 years now and he also saw me through my pancreas transplant and an almost year long hospital stay. The last couple of years have been rough but I am now doing better (haven't been in hospital for 7 months - yeah!).
I can't give you advice on finding a donor, but I can suggest another website for good info. It's called TransplantFriends and it's great. Lots of folks with different issues but all very caring.
Hope you stay well and are able to continue to work! I'm a Disney fanatic and am a Vacation Club member that I've put to good use.
Your best bet is to find a renal dietitian and follow that diet. If you don't follow the renal plan, you can get into serious trouble with your kidney and your heart. And it can happen fast with things like potassium. Try to compensate with the diabetes as best you can. Is your husband on insulin? That will make things a bit easier. You can find good renal cookbooks on most online book stores.
You will need to speak to your nephrologist to find out what he/she has to say about what is in the various brands. Sorry, but it's been a long time for me and I don't remember what was ok. Also ask the pharmacist to see which ones are contraindicated on the labels.
Because of imbalances in calcium and phosphorus, you can get boneloss due to kidney issues. I didn't have any pain, but I know that I lost bone mass during this time and while I was on dialysis. Things improved after my transplant. I would talk to your doc and try to determine the source of the pain. It could be something unrelated like arthritis.
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