Support Group

[okarol]

Today I went with Jenna to the Renal Support Network monthly support group meeting. It was great to hear other patients talk about what they are experiencing. It's too bad there aren't more meeting where patients could share with each other and get more info too. The in-person contact is very special.
I am so grateful for IHD because it provides a connection for patients, family, etc. and even the "cyber hugs" feel great when you need them. Everyone has different experiences and issues but the connection is based in the shared feelings and support we give each other.
Our meet-ups where we have gotten together as a group of IHDers have been so amazing and we hope to plan another soon. I would love to meet every single one of you in person!
I got to meet one of our forum members at the RSN group - great to see you st789!
 

[KICKSTART]

Oh we have support groups over here , my area has one but its on my dialysis day so i never get to go .

[Bajanne]

I have had the idea to start a support group at our hospital, but it has not gotten off the ground as yet.  It is a great help to many.  When I went through breast cancer, we had a tremendous support group back in my home country Barbados.
IHD is a support group plus!!The one reunion that I went to was awesome!!!
I too would love to meet more of you.

[Poppylicious]

Oh we have support groups over here , my area has one but its on my dialysis day so i never get to go .

Do we?  I've never heard of one in my neck of the woods; I suspect that they're during the day though, which would be a good reason as to why Blokey's never mentioned it.  He gets so annoyed with everybody assuming that nobody on dialysis works! 

IHD is my support group ...

 

(So kickitykickstart, when are we going to arrange a UKians IHD Meet Up?! asks the very shy person who probably wouldn't go anyway!)

[peleroja]

Is that Lori Hart's group:  I think you and I met at one of her luncheons. 

For folks a little farther south of Los Angeles, The Kidney Beings Renal Support Group meets the third Saturday of the month, from 2 to 4 pm, at Kaiser Bellflower.  We had 22 people this past month!  If you want more information feel free to email me.  Love to meet more IHD folks!

[Zach]

The American Association of Kidney Patients (AAKP) has a very good listing of support groups for people with kidney disease:
http://www.aakp.org/outreach/List/

[okarol]

  Lori Hartwell planned the meetings for Sunday afternoons to be sure it doesn't conflict with anyone's dialysis schedule.

The American Association of Kidney Patients (AAKP) has a very good listing of support groups for people with kidney disease:
http://www.aakp.org/outreach/List/

Hey peleroja, you should contact the AAKP and see if they will add your meeting to their list.

Thanks for the link Zach. The Renal Support Network's support group is shown on that link. However, it's frustrating because Los Angeles is a city of nearly 10 million people, but the next closest meeting AAKP shows is 2 hours drive away, down by San Diego. So it's either not a comprehensive list or support groups just don't exist. And in all of California we have over 36 million people but only 16 support groups for the whole state.

[peleroja]

Hey peleroja, you should contact the AAKP and see if they will add your meeting to their list.

ROFLMAO We used to be an AAKP chapter, and 2-3 years ago AAKP dissolved all their chapters without so much as a by-your-leave.  My friend Debbie and I wanted to keep the support group going, so we formed a partnership, legally published the name, and the rest is history.  AAKP left a very bad taste in all of our mouths.

[Riki]

We have a peer support group here. I think it meets every 3rd sunday of the month.  I've never gone, because I figure that most of the "peers" would be my grandparent's age, because most of the other patients in the unit are.  There are very few under 60, and I'd say that most are between 60 and 80.  I think it would seem weird.

[okarol]

Riki, I was worried about the same thing and I know Jenna cannot relate to 60 year old dialysis patients. But luckily there was 1 guy in his 20's and another early thirties. There were also 2 other patients started dialysis in their 20's, and went through transplants too. Then there was Lori who had ESRD at 2 years old - so it was a good group!

[Riki]

The thing is, I know that there are only about 150 dialysis patients in my province, both HD nad PD, and I know that of the ones on HD, I'm one of the 3 youngest.  There are 2 younger than me.  There's one older than me in his 30s, and after that, they're 50+.  I went to a picnic through the summer that the peer support group held.  I was the only young one there.  If they're not going to come out for the picnic, they're not going to ocme out for the support group

[okarol]

Yeah, you are pretty isolated so an in-person support group might not be possible. But as I mentioned below, we are in a city of 10 million people and there are also very few support groups, none focusing on young people.
I guess it's time to start your own group.
"Kidney Patients 30 years and under - Let's meet!"
You can create a facebook group.
 

[Sluff]

Well I have a little secret that even Karol doesn't know about yet.  he he  I am checking into ..........I will tell ya later.

[Sluff]

It's better than facebook.

[Sluff]

Cheaper than live meetings.

[okarol]

  Is it a good secret?

[okarol]

  Sluff, not you on the webcam live??

[Sluff]

How'd you guess. Well I suppose thats the only thing better than facebook...   No,,,,thats not it.

[Riki]

ok.. you've piqued my interest.. *L*

I wish someone would overhaul the kidney.ca website.  They have sections for the different provincial chapters, but our local (which isn't really local cuz it's in New Brunswick) doesn't use it.  If the Kidney Foundation of Canada is so big on peer support, I don't understand why there isn't a message board on their site, similar to this one.

ok.. shutting up now...