Where do people go???

[Pete]

I don't think anyone should feel guilty because they haven't been posting/helping on this site. Our dumb disease is a big enough burden to bear. If you're feeling good enough to lead a nearly normal life, well, good for you. We'll celebrate with you...

[gilders]

I don't think anyone should feel guilty because they haven't been posting/helping on this site. Our dumb disease is a big enough burden to bear. If you're feeling good enough to lead a nearly normal life, well, good for you. We'll celebrate with you...

Thanks for that Pete.

One of the reasons I feel guilty when I'm not active on the site is connected to Barbara. She was one of the few people who I sent a personal message to.
During her last month or so she wasn't happy about starting dialysis and at one point looked like she was going to refuse it. Having been on dialysis myself, I tried to persuade her to start dialysis. She eventually did (not that I'm saying her decision was due to my advice). I can't remember what was going on in my life at that time, but I "disappeared" from the forum for quite a while.
One day I decided to try and catch up with how everyone was getting on, especially Barbara and her dialysis. I was very shocked and upset to find out the dialysis didn't save her and, as we know, she passed away. I do know that without dialysis the end result would have been the same, but hate to think my advice led her to starting dialysis and, perhaps, took away her dying on her own terms.

[mrtmeo]

Thanks for that Pete.

One of the reasons I feel guilty when I'm not active on the site is connected to Barbara. She was one of the few people who I sent a personal message to.
During her last month or so she wasn't happy about starting dialysis and at one point looked like she was going to refuse it. Having been on dialysis myself, I tried to persuade her to start dialysis. She eventually did (not that I'm saying her decision was due to my advice). I can't remember what was going on in my life at that time, but I "disappeared" from the forum for quite a while.
One day I decided to try and catch up with how everyone was getting on, especially Barbara and her dialysis. I was very shocked and upset to find out the dialysis didn't save her and, as we know, she passed away. I do know that without dialysis the end result would have been the same, but hate to think my advice led her to starting dialysis and, perhaps, took away her dying on her own terms.

Gilders,
dialysis kept her alive, but apparently, her drs didn't customize her dialsate to accomodate her nutrition.
It really broke my heart when I saw that she had passed on because she probably would have felt much better on at home nocturnal dialysis.
However, she is no longer suffering and in peace and she made her own choice to stop the dialysis.

This disease is so devastating and it is a comfort to see so many like you on this site doing well.
Hopefully, they will get that 3D printing of kidneys going so those who need one, can get one without immune suppressives.

[drz]

My recollection from her messages and posts is that she was very resistant to even start dialysis and postponed it for a long time too. That might have also decreased her prognosis for surviving it.

The most frustrating cases I read about are the ones where people die from being diagnosed too late or being unfortunately in a situation where they are not able to get the appropriate treatment in a timely manner. And there are the unfortunate rare cases where the Wegs attack a vital organ that usually results in a quick death since treatment is of little use or unable to help in time.

Gilders,
dialysis kept her alive, but apparently, her drs didn't customize her dialsate to accomodate her nutrition.
It really broke my heart when I saw that she had passed on because she probably would have felt much better on at home nocturnal dialysis.
However, she is no longer suffering and in peace and she made her own choice to stop the dialysis.

This disease is so devastating and it is a comfort to see so many like you on this site doing well.
Hopefully, they will get that 3D printing of kidneys going so those who need one, can get one without immune suppressives.

[lag713]

I was active for the first few months after diagnosis and whenever I felt like I was having an issue with my treatment. I tend to just lurk by reading the posts and keeping an eye on things. I feel like I shouldn't post unless I have something to contribute to the conversation. I know there are plenty of us here even if we don't post - just check the number of views a post gets!

[drz]

I was active for the first few months after diagnosis and whenever I felt like I was having an issue with my treatment. I tend to just lurk by reading the posts and keeping an eye on things. I feel like I shouldn't post unless I have something to contribute to the conversation. I know there are plenty of us here even if we don't post - just check the number of views a post gets!

Only members can post too and usually there are ten times more readers than members on the site at any given time. Right now there are 15 members on and 117 guests so only a small portion of readers will actually post some thing here.

[Mas78]

I'm also one of those that usually check in every so often since I found this site and read the posts. sometimes I have some input, but I usually don't have much past what has already been said as there are several very helpful members that post quickly.
I had another blood clot in my leg back in early December, that and then traveling around the state for the holidays really ate up a lot of my time the past couple months. So I would guess a good portion of users check in even if they don't log in and post.