Support Groups

[MooseMom]

I just received in the post the quarterly edition of a magazine put out by our local hospital for which I used to volunteer.  On the last page, it lists contact information for a plethora of support groups...Alzheimers, cancer, stillbirth/miscarriage, Huntington's, breastfeeding, postpartum depression, Parkinson's, teen angst, diabetes, ostomy, and fibromyalgia, but nothing for CKD/dialysis patients despite the fact that there is a dialysis clinic right there on campus.  I tried calling the hospital to see if such a group exists, but the Outreach department was closed for the weekend.  It got me to wondering...if there was a local support group for dialysis patients that met, say, one evening a month or on some other schedule, would you be interested in attending?

[okarol]

When Jenna was diagnosed in 2001 I searched everywhere for a support group. There was one in Los Angeles, but it's a 40 minute drive and just not practical. Then I heard from other patients (dialysis) that they weren't willing  to go back into their clinic on off days, even if there was a meeting. That's when I started looking online and found IHD. It's been really helpful, and reaches people who are home bound or have limited transportation, so that's a good thing.

Last year the Renal Support network started a local kidney support group near here (Glendale.) It's on Sunday afternoons and I am planning to attend this month to see what it's like. Here's more info for anyone in the Los Angeles area who might be interested:

Looking for Support from People Who Can Relate?

Come to our Support Group Meetings every 4th Sunday of the Month!

Our next Support Group meeting will be on Sunday, April 25th, 2010. The meeting is open to people who have kidney disease and their family members.

Sunday, April 25th, 2010
2pm - 4pm
Shakers Family Restaurant
801 N. Central Ave.
Glendale, California 91203

(north of the 134 Freeway)

Snacks and refreshments will be served

Parking is free

If you have any questions or need more
information, please call our toll free number
Monday - Friday, 9 - 6 pm
(866) 903-1728
Upcoming Dates:
May 23rd, 2010
--------------------------------

[MooseMom]

IHD is a godsend, but I just found it odd that there were all of these local support groups available but nothing for kidney patients.  There is a special cancer center affiliated with the hospital for cancer patients that offers all sorts of classes and activities, so why can't there be something for kidney patients in the same vein?  I can understand not wanting to return to the clinic on off days, but the main hospital is within walking distance...we're talking a fairly small town, here.  I just wondered if such a group was available and it meetings were NOT held in the dialysis clinic, would any of you attend?  If there are support groups for all of these other things, why not for us?  While IHD is superb, real human contact is valuable, too, and it would be nice to have that choice.

Maybe we just don't have the same needs as other chronically ill people?

[monrein]

I used to run a support group for dialysis patients when I was a student social worker at a large downtown hospital.  It was well attended, had a fixed number of sessions and the feedback was very positive.  What we discovered however was that people were mostly interested fairly early on in the process and then they wanted NOT to be talking about it so much since so much of their lives were already consumed with treatment.  I had several who would see me individually but didn't want to raise especially sensitive issues in group.  I take responsibility for that and attribute it to my lack of experience in group work at the time.  I ran many other groups after that experience (nothing to do with D...parents groups and adolescent groups)  and I feel that I learnt a lot and did a much better job around the issue of confidentiality and group safety, the most essential aspects of any group that hopes to ever really get down to the deeper issues. 
I also volunteered with my local kidney foundation for several years on the Patient Services Committee and one of the most successful programs we implemented was the peer support program, through which we matched new patients (or family members) with someone in a similar situation and demographic as themselves...so mother with young kids with similar person, teens with teens and so on.  My husband and I were ad hoc peer support to a young couple who were training for home hemo (as we had done) and we became quite good friends.  She was a teacher with two youngish kids but unfortunately I was devastated when she had a transplant (I was 26 at the time and she was about 35) and through a weird surgical complication, died on the table.  Our renal social worker was useless but one of my dialysis nurses gave me some time and helped me through that tough period. 
I personally found that once I had my own transplant I just wanted to be more "normal" so I moved into the more macro area of advocacy and public speaking to high schools about CKD and organ donation. 

[MooseMom]

I attended several support groups for parents of autistic children, and while I got something out of it at first, as time went on, I didn't want my life to be so consumed by the spectre of autism.  Furthermore, most of the people there were very depressed and still in shock, and frankly that served to further traumatize me.  I'm not sure I would attend a renal support group, but maybe I would in an effort to be less isolated.  I've never met any local kidney patients, and it may be nice to meet someone geographically close. I like the idea of being "matched" with someone.

[Jean]

 I would most definitely attend a renal support group if it was local. Thru an ad in our park newsletter, it turns out that a couple of my friends are in the same stage I am. Maybe we will form our own support group.. Altho, I do like IHD the best.

[Chris]

There is nothing at my local or transplant hospital for CKD or transplant, like you, they list everything else.
 
The only support group for dialysis was an occassional meet at my dialysis clinic. However there are more suport groups for kidney and other organ transplants than dialysis patient oriented. 

[kitkatz]

Kaiser has a support group for ostomy patients, but I do not see one for renal patients.

[Sunny]

There are no support groups where I am located either.
Plenty of cancer suppert groups, HIV support groups, even a fibromeyalgia support group, but no renal support group whatsoever.
I did join a support group for chronic illness for a short period of time. Until I realized everyone there had  "chronic illnesses" such as back pain, depression, alcoholism, arthritis, Attention Deficit Disorder,etc., things I don't really perceive as chronic disease so I stopped going.

[MooseMom]

Yeah, Sunny...I just find it so odd that there is this dearth of support groups for renal patients.  I can't figure out why that should be.

[estonb]

I know how it feels to need a support group, but there are none to be found.

So, .... I have recently started a support group in Houston for dialysis patients. If anyone reading this lives in Houston, and is looking for dialysis patient support group then I'm talking to you - there is a support group in Houston now!

We meet every 3rd Sunday of the month at 3:00.

This group is open to all dialysis patients. If you are interested in attending the group and would like more information, please email me:
                           estonb@gmail.com

Eston Burciaga

[cdwbrooklyn]

That's great.  I was thinking about starting one in Brooklyn, New York but people are more private here. 

[noahvale]

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[noahvale]

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[jeannea]

My church is starting a support group for people with chronic diseases. I'm thinking of trying it out.

[Sugarlump]

I'd like a support group specifically for exercise (to encourage us wobbly dialysis patients to do a little exercise) tailored to our needs ... maybe a little swimming for those with fistulas and a little step class to music ... things that are tailored to our needs, but switch our minds of from the limitations of dialysis. And maybe the occasional fish and chip supper!!!! 

[kristina]

Anyone travelling through London...? ... How about it...?
...I would very much like to meet other IHD members.... without too much ado... without too much of planning...
... how about... anyone travelling through London... South Ken Area...?
...I would very much like to meet other IHD members... without too much ado... and without much planning...
....perhaps in one of the little cafes in the South Ken area... one afternoon...?
... How about it...?

Best wishes from Kristina...

[kristina]

P.S. I go for regular little walks practically every day....
very important for me to keep as fit as possible...
.....so I go for regular little walks every day...
...around the South Ken area...
...it does not need much planning...
I just put on my shoes and go... every day...

[estonb]

According to the American Association of Kidney Patients website, the following groups meet in the Houston/Galveston area.  Is the info outdated?

https://www.aakp.org/community/support-groups/category/galvestonhouston.html

My listing for the group "Houston Dialysis Patient Peer Support Group" is current. I just recently got it posted up on aakp.org.

[noahvale]

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