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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Looking for Ruth (Ihavepkd)

Hey everyone,


I joined this group several years ago when I was first diagnosed. Life went on, I got married, had kids, etc. Over time, I became less active on here as other life circumstances took precendent. Anyway, I can see the forum is vastly different than it was back then. I'm looking for someone who used to be on here, I can tell she's still a member, but don't see any recent activity. So, if anyone knows any way I could maybe reach Ruth (Ihavepkd), please let me know.



Thanks <3 

Replies

Chewitt
Chewitt

Hi MsFur08,
Good to hear from you - hope things are going well. I remember that you were studying and had a little girl when we last heard from you.

With regards to Ruth, she has never posted since the group took on this new format. I've wondered about her for a long time now. Last I heard she was unable to use the computer because she was in a great deal of pain and was awaiting a dual kidney/liver transplant. I'm facing the same thing myself, with my enormous polycystic liver and diminishing kidney function so appreciated that she shared her wealth of knowledge and experience. She always tried to help if she could.
How are you these days?
MsFur08
MsFur08

Thanks for the update.

I actually have three daughters now, haha. 6y, 3.5y, and 2y next month.

I got divorced last year; he turned out to have abused our kids and my half sister who is also 6y. He confessed to the charges regarding my oldest, but for some reason chose a jury trial over a plea, so that will take place in the fall. We have a protection order and he doesn't bother us, so we're safe.

In happier news, I'm involved in a developing relationship with someone who really treats us well and loves us. We're taking things slow for everyone's sake. The kids adore him. I actually wouldn't have even had him meet them yet except that we became friends at church and the rest just gradually evolved, so the kids had met him as, literally, my friend. It works out well though because we all get to know each other simultaneously.

Nothing new with my kidneys. They're still doing kidney stuff. So, no symptoms of anything so far.
lenin751
lenin751

I hope the family things are still going good. I remember Ruth from the old chatroomand wondered
what happen. Take care, lenin751
lovemyfive
lovemyfive

I still feel frustrated that this new format cost us most of our members...or so it seems in my mind…so many people who were regulars on here that we never see anymore.
Chewitt
Chewitt

It has been disappointing to lose members. I wonder whether they might have drifted away anyway, or just hate this format so much that they don't want to engage with it. I'm still missing things like personal messages because they're not very prominent and it's far more difficult to navigate than the old site.
Chewitt
Chewitt

MsFur08,
You've been through a lot but it sounds likes things are better for you now. Life can certainly throw some stuff at us. Long may your good kidney health continue.
lenin751
lenin751

Chewitt yes I guess the aimoo.com chat did not work out ? I miss
the live chat with the rooms and hearing how everyone is dong.
of course it have been years. maybe people are on facebook now ?
take care.
MsFur08
MsFur08

Thanks everyone. I emailed her as well, but haven't gotten a reply. I hope she's okay.

Also not a fan of the new format. I thought I had the wrong website at first, but thankfully it had saved my log in info from last time I logged in a long time ago (I don't even know how it did that).

I haven't found her on Facebook either. :/
LHanley
LHanley

I joined years ago but haven't been active for quite awhile, for all the usual reasons. But now my neph wants me to consider transplant work up, so I'm back, seeking info and support. I am trying to learn the new website. Ruth was awesome and I hope she still is.
Chewitt
Chewitt

Hi LHanley,
Good to hear from you. I'm moving towards the transplant discussions, too, so we'll see how it goes. What are your thoughts? I'm finding the prospect of a dual transplant very daunting.
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