Home Dialysis Patient Interaction?

[KT0930]

I wonder, is my clinic the only one that seems to make it impossible to meet other home dialysis patients? In-center hemo patients on the same shift seem to know each other and develop at least close acquaintances from being in the same room for 12 hours a week. However, whenever I go for my labs, etc, I never get to meet or interact with any other PD patients. Does anyone else have this problem? Am I the only one who would like to meet others in my local area for a little bit of support/interaction? (Don't get me wrong, IHD is fabulous, but sometimes face-to-face is better).

Thanks for input!

[KICKSTART]

Yes its the same for me , every time i go for a hospital appointment its different faces , sometimes including the staff! Dont really think hospitals have the time to get involved in any social side of things though. Maybe a poster inviting people to get together might help ?

[Chicken Little]

There is a group at my clinic for Kidney/Pancreas transplant candidates and recipients, but that's the only group there is. 

I don't think they want us comparing notes. 

[KT0930]

Chicken, that's exactly how I feel! You know, I've searched the internet (even used kidneyoogle.com) and can't find any kind of transplant/dialysis support group in metro Atlanta (one of the biggest cities in the country!)? It's frustrating!

[goofynina]

My PD clinic holds a support group once a month and i have to admit, it is kinda nice going there and listening to other peoples problems and their solutions of course   But i can totally understand what you mean about a face to face meeting, maybe you should ask your nurse if she can start a support group, or perhaps you can start one?  I hope you get to meet some more patients soon, let us know how it goes ok 

[Slywalker]

No groups that I'm aware of in my neck of the woods.  At my appointments I do have the same nurse that sees me monthly, but the doctor changes from month to month.  Would be nice if these docs could at least read some of the clinical notes before visiting with me.  I have rehash everything every single month.  Ugh.

Sandyb

[KT0930]

No groups that I'm aware of in my neck of the woods. At my appointments I do have the same nurse that sees me monthly, but the doctor changes from month to month. Would be nice if these docs could at least read some of the clinical notes before visiting with me. I have rehash everything every single month. Ugh.

Sandyb

What a pain the rear, Sandy! We only have four home dialysis nurses, and we make our own appts with the doc of our choice...at least I have some support there! I think my doc was ready to cry with me when none of my donors were compatable...certainly wouldn't get that having to see a different one each month!

[MyssAnne]

I have always wondered about that. Heck, when we do our monthly clinic visits, we are separated into different rooms, and doors are closed. For some topics, I can understand that. But I've always wondered why there is no attempt at bringing us together, heck, even for a short seminar on information.  At least I have the same nurse and same doctor. But when you sit in a room with the door closed, it gets awfully lonesome!

[Ken Shelmerdine]

Just before I went onto dialysis I went to a kind of informal coffee evening where I met some patients who were already on APD but since then there's been nothing. My clinic appointments are 4 monthly and the home nurse visits me about every six weeks. I must mention it to her when she calls again. I'd like to meet a few other fellow patients to discuss this and that...yeah that would be good

[okarol]

There is a Kidney Patient Directory handed out at our local dialysis center, created by Lori Hartwell's Renal Support Network. This directory is for kidney patients (dialysis, transplant and caretakers) in Southern California, but it would be great if there were more developed for other cities. http://www.rsnhope.org/connect/patient_directory.php Here's the link so you get an idea what they've got now.

[brenda]

Personally I have always liked to stay away from the people and going on's in our unit. It's too sad there. Dialysis in one way is really such a small part of my life, it's just this inconvenience that I have to deal with 3 night's a week. I have my own little system and it works for me. I certainly would not attend a group deal at the unit and have declined talking to other potential home patients when I have been asked.

[MiSSis]

Brenda,

I'm a little like you in that I haven't found support groups to be all that helpful in the past.  It always seemed that one or two individuals would "take the floor" and then monopolize the discussion on how bad things were for them.  I was looking more for tips or tricks to make things easier or encouragement on what we COULD do and not what we couldn't.  I certainly wasn't looking for a "poor-me" dissertation.  We all could give one of those if we so chose!!!  The best help I've ever been given (and I've been around kidney problem, dialysis and transplantation for a very long time) has been right here at IHD.  The PD population at my kidney center is very small (only 6 patients) and we never meet since our monthly appointment are scheduled apart, of course.  Our center does sponsor a yearly patient/staff picnic but I've never gone.  With the exception of my PD nurse and the docs, I don't know anyone else who would be there.  I always think about going but when the time arrives, I find I just don't want to go.  Guess maybe I'm a little antisocial but I'd rather picnic with my friends and family.

[Ohio Buckeye]

My clinic has 2 days of summer picnic (grilling hamburgers, etc.) but I have no
desire to spend time at the cllinic when I don't need to be there.