Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Kidneys & Bladder
/ Polycystic Kidney Disease (PKD) Support Group

Great PKD discussion Group

rogerjd
rogerjd
Hello to everyone out there who has read any of my posts recently. You may have noticed that I just ramble on and on. I have never opened up like this before and realise now how much I was bottling up and how much support/ advice I could give to others, and how much I could gain from others. This is still very new to me and am struggling to talk tomy own friends and family at the moment so just want to apologise for my rambling messages. I am usually typing them at early hours in the morning and tend to go on and on- with lots of typos- but just want to get things off my chest. I know some of you have found my posts helpful and I hope the rest of you are not bored with me. It really is helping me a lot.

So thank to everyone who has interacted with me in one way or another and long may it continue.
deleted_user
deleted_user
Please never feel the need to apologize for opening up. Speaking your mind or asking questions or adding your experiences is not considered rambling on this site! I am glad it is bringing you some insight and comfort...exactly what it is meant for. Many of us here have been in your hoes...facing end stage renal disease and worried about the future. Once you feel better you too will be able to "pay it forward" and offer your advice and expereince to those who come next.

By the way, I am the typo queen!
norma67
norma67
I'am so sorry that I haven't been around today, I have arthritis so bad that it's killing me, slowly but surely. I am going to a pain clinic, but not much help there. Please keep telling and talking, thats what we are all about. If I am not there to listen and give advise, there will always be someone else to help you. the one great thing about an online support group is that we are always there, no matter what. My recommendation at this point, is for you to get more sleep!!! LOL Go to bed!!! haha...

Love you, as always,
Norma....
Chewitt
Chewitt
Rambling is fine. I do plenty of it! I've sent you a long and windy personal message as evidence. As one Brit to another, I have to say that traditionally it's not been in our nature to "open up" and bare our soles, but there are times when we should, in order to save our sanity if nothing else. We're becoming more like our American cousins in this respect, I think! Keep talking and we'll all keep reading (listening) and talking, too.

Chewitt
deleted_user
deleted_user
when first told my kidneys were failing I didn't want to speak to anyone tho I knew I had to tell family.
after joining a support group I realized this was nothing to be ashamed of, it was not a personal failure. knowing others who, through no fault of their own, were suffering the same disease, helped me to open up.
a few days ago I met a man who said he was on dialysis and I pushed up my sleeve to show him my fistula like a badge of honorl
good to know you are not alone.
rogerjd
rogerjd
Thank you to all of you with your responses. I feel much better knowing that I can continue with my rambling. I try sleeping with 2 sleeping pills but if I go to bed at a reasonable time -say 10.00-11.00- I'm awake and up at 3.00 am. If I stay up till 3.00-4.00 then I sleep in till say 9.00- 10.00 am- so which is preferred option? either way my posts are going to be early morning ones- well especially the rambling ones- because that is the quiet time when I get to thinking about everything.
So glad that I am a member of this group - I would never have thougth it would help me so much- in fact I am absolutely amazed- and such great attitudes from yoursleves. I really do feel more able to cope with everything. Thank you Julie x
norma67
norma67
Whow Julie, what a testimoney for support groups. The best thing that I can see/feel is that people stay here throughout kidney removal, dialysis, transplant and give back to all of us. How much better does it get huh? Where else could you ge such support and knowledge? Keep up the good work.

Love,
Norma...
deleted_user
deleted_user
I hope you all don't mind, My husband just found out he is at a 19% fuction,its been like you know it would come but I don't think you can prepare yourself,Chris is become pretty down. I hope he knows I will be there for him through out the whole ordeal. I love him for who he is,I know the battle has just begun.He does not do good with talking to other people about his problems so I will do it for him. I tell him I will be there and be his voice all I can and try to help other people that have the same problem and I will be here to help any one I can. Bless you all and keep in good health as much as you can.thanks.
norma67
norma67
I will be the first to reply Jean, You know that PKD is not a death sentence, dialysis isn't either and then there is always the transplant. We have Heather, who just recently had one and she lives in Alaska, probably will have lots of good information for you. She has been through the drill, so knows all the in's and outs. Lots more like her that will give you good advise. Talk to us honey, we know what you are saying and we hear you. Let us know what Chris is thinking and feeling, there will be someone that can relate. Good luck sweetie, we are all here for you and for your husband..

Lots of love,
Norma...