I see your and others on the news feed but I can only see where to reply to the comments. I don't see where to post a new comment.

No idea what's going on here now. I can't find anything!

This new website isn't user friendly! Anyway, glad I've found my way back. How is everyone?

Perplexed (by this new website) and in severe pain. How are you Dixie?

I am
Onlin

Had a good sleep. Bone pain and headache mostly gone. I check in to this group whenever possible. I am not on dialysis. I have lived with PKD for 4 years. My PKD is inherited from my Grandmother.

Tell us about yourself Rhi.

I have good health car

I have had PKD since 2013. I am not on dialysis. I live in a small mountain community. I have the fortune to have good,health care. My GP is extremely intelligent. I started Procrit shots May 2015. My husband thinks that I have to be myself at all times. I am not myself at all times. Right now Im having bone pain stemming from a recent course of Procrit shots. Other than that, I do have a good attitude out my PKD. I drink clean water and breathe pure air. I live in an Alpine Rainforest. I garden, read fiction (mysteries are my favorite). Thus, I keep my thoughts and fears as far away as possible. I went on the Internet to look up PKD on the Internet, and imagined that iI had all kinds of symptoms which I did not. My PA confirmed this. Please do not scare yourself on the Internet.

Excuse me, May 2016 is when I started Procrit shots.

Good to hear from you Rhi. You seem to be doing well at the moment but I'm sorry you have bone pain. Your home sounds lovely. Here in England we're having a cool, wet summer so far. At least it's not too hot, but we would prefer a little less rain!

You can share your thoughts and fears here without worrying about upsetting loved ones. We try to help each other. It's good advice to avoid worrying yourself with mis-information found online or imagining yourself into symptoms you don't really have. We don't need that.

Welcome Rhi. You seem to have a positive attitude towards your pkd, which is great. We all have to be sensible about using the internet (Dr Google!) There are, however, some very useful websites and personally I like to do my own research. One point Rhi - pkd can't skip a generation, so if your Grandmother has it and you have it, either your mother or father must have it too. They may not know - I wasn't diagnosed until I was 60 and I still don't have any outward symptoms, though I have dozens of cysts throughout my kidneys, liver and pancreas.
Hi Chewitt! Sorry to hear your pain is not under control. I know you have been suffering with pain for such a long time, it doesn't seem fair. I follow all your posts. Are you any nearer deciding on the next stage of treatment.
Finally, whoever thought this website format would be an improvement on the old one needs their head examined!

Hi dixie, I've decided against the Tolvaptan. My consultant thought they could just about swing it for me, but ai didn't really fit the criteria as I've now moved to stage 4 (it's safety and efficacy have not yet been tested below eGfr 30). Also, I'll be 50 next year, and over 50s are another population on which the drug has not been tested. The need to drink a great. Deal of water would be a problem for me (can't fit that much in my crushed stomach) and I'm already in the bathroom far too often. All this would gain me a few months before being tipped over into needing to start the procedures for renal replacement therapy. That's another story which I'll share another day.

As for this new format: I couldn't agree more! Does anyone know whether there is a list somewhere of discussion topics as on the old site? Without it you can't see at a glance whether there ate any new posts or additions to old ones and when they were made. I hate it when things are "improved" and end up much worse than before.

I did a long reply on this thread a couple of days ago and it isn't showing. Trying again!

Hey, I'm back. I was having trouble accessing my account since they changed it. I'll be checking here again like usual now though. How is everyone?