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.
Often the itching is due to high phosphorus levels. Do you know what hers is? Has she been checked recently? Try cutting back on dairy, legumes, and nuts as these are high phosphorus foods.
I had this problem while on dialysis (due to phosphorus) and found that the occasional oatmeal bath messy but helpful. I rinsed off afterwards and it was a pain to clean the tub though. She will need help.
As far as I know (I'm a biologist, not a doc) there is no connection between a double ureter (a physical plumbing issue) with incontinence (neuro-muscular issue). My cousin gave me a kidney with a double ureter and neither one of us have had problems.
I'm glad you've gotten a diagnosis. I know that some supplements are helpful for peripheral neuropathy, but don't know if they help with the autonomic stuff. These are ALA (alpha lipoic acid), GLA (gamma linolenic acid) and vitamin C taken in combination. You might want to try this. Check with your docs first though.