Kidney Patient Guide

Thanks for your reply Wagolynn, the measurement is in pmol/l that’s why I’m confused, I can find no reference to that measurement online......I will keep looking!
Thanks again

My levels of PTH and calcium have always been elevated since my transplant in 2009. It has been over 200 in the past but my last level said 13.46.... I’m not too sure what that means. Has anyone had a raised PTH for years? I worry about the calcium too, I used to take vitamin D but they stopped that...

Hi Sheila Thanks for your reply and sorry for not replying earlier.... I went for the ultrasound today. It was very quick and I was told they couldn't see the glands at all, none of them! I asked if that was a good thing but they said not really and I would need a nuclear medicine scan to locate the...

Hi Sporti, thanks for your reply,
No they haven't tried any other medication except for alphacalcidol which I think is a form of vitamin D.
I will ask about Cincalet and let you know.

I have had a high PTH level since my second transplant. I have been taking alpha calcidol twice a week and have now been told that it has stopped working, my calcium levels are high and I may need an operation to remove my parathyroid glands. I am going for an ultrasound scan next week.....has anyon...

Thanks for posting the information Emma.....I have suffered the same way but through Myfortic which I'm sure is the same drug . I caught pneumonia and after was very ill with chest problems for a year or so, I thought I would never get better! I kept getting chest infections and was admitted to hosp...

Thanks for your reply AmandaClare, it's good to get some first hand information.
Usually the letters from my GP come under the snail mail heading. I will be ringing my transplant nurse in the morning to be on the safe side.
Thanks again for the information
Lizzyie

I have had my transplant for 7 years. A month ago I got a sore throat, felt tired and generally unwell....as though I had a cold developing. I rested and just didn't improve so went to see my GP. My GP did blood tests and said all was ok, my CR was slightly elevated and not to worry. I went back to ...

Not sure if any of you can help me or give some advice but after 20 years on immune suppressants I have developed AK which can lead to skin cancer if not treated. I have been prescribed Efudix cream which is a form of chemotherapy, after reading about the side effects though I feel unsure if it is t...

Hi Chris I have just come back to the forum for some advice and I came across your post. I fully understand what you were feeling in your first post in 2012......we all hate dialysis, we just don't have much choice! I have always looked upon it as a way to stay alive whilst waiting for a transplant....

Thanks for your reply SKM23435 - I am happy with your "rant" - you are quite right! It will be exactly 6 weeks on the 5th of September that my problem started and I have an appointment with the GP on the 6th. In the back of my mind I do have the worry of something serious lurking, with ove...

Hi Jan You asked me to let you know how things were when I got back from holiday...........not good so far! The problem remained the same, it didn't make a good holiday as I always needed to be near a loo. As soon as we got back I went to GP who said to wait a full 6 weeks, then if not better he wil...

Thanks Jan - I will.

As I was replying to your post to me I saw this message. Just thought I would let you know that my fistula made my hand cold and it did ache quite a bit on and off for several months. I used a soft ball to exercise it every day, my unit told me I needed to strengthen it and it was important. I was a...

Thanks for the information Jan, it's a great help. I am off to Norfolk for a holiday tomorrow so I am hoping things will "behave" while I am away. The GP said I could go away if things calmed down, they have a bit, so I am planning to go. I will see her when I get back, as long as I don't ...