Support Groups

[Tom]

(Topic from archives: Originally posted 18:47:58 01/21/2003)

Does anyone know of a support group for ESRD in or around the Atlanta area? I contacted the National Kidney fund and attempted to attend a meeting. However, when I got there it was cancelled. I left my name and number but noone has bothered contacting me. I'm really looking for a group where I can talk about concerns and get some personal advice. Also, is it possible to get PD if you have a ostomy? My Nephrologist is looking into this but from what I've read I believe Hemo may be my only dialysis option. I was born with kidney disease and Hemo has always been a nightmare to me. Now that it is getting near the only thing that substains me from day to day is my faith in God. Thank you for your help.

[Beth Witten]

You might try to contact the NKF of GA by email. You could contact the executive director, Chris Starr at cstarr@kidneyga.org. You might also ask your nephrologist if there is a support group through the dialysis facility he/she refers patients to.

If you can't locate an in-person support group, one of the most active online support listservs is Dialysis_support. You can read about this group and join at http://groups.yahoo.com/group/dialysis_support/.

For information about kidney disease, coping, etc. check out http://www.kidneyschool.org.

There are classes for people with kidney damage who are approaching kidney failure. The NKF affiliate offers classes called People Like Us, Live.

If your physician uses Baxter PD supplies, you might want to check out http://www.kidneydirections.com. You can sign up for the Stay in Touch program at http://www.kidneydirections.com/us/intouch/index.htm.

If your physician uses Fresenius PD supplies, you might want to check out http://www.kidneyoptions.com. FMC offers Kidney Options classes at several FMC clinics in GA.

If your doctor is affiliated with Gambro Healthcare, Gambro has a patient educator in Atlanta.

[Michele]

I am a 27 year old who was diagnosed with end stage renal disease 7 months ago and have been on dialysis for 6.5 months. I need to find a site where I can release my frustrations and get some reassurance that it will get easier to deal with because I have had a rough start with treatment already.

[Beth Witten]

The first year of dialysis can be very stressful as your body is getting used to treatment for kidney failure. Most people grieve the loss of their kidneys, the need to do a treatment that can interfere with life activities, the need for surgeries and procedures, the need to change diet and fluid habits, take medications, and do other things they never expected to have to do. Some times people feel more limited than they actually are. It doesn't help that staff often tell patients everything they can't do and forget to tell them all the things they can do.

If you haven't talked with your clinic's social worker, I'd suggest that you do this. He/she may be able to introduce you to another patient or patients that are about your age and have gone through similar things. When you're depressed, it can be very draining and many times people shut themselves off from those that can help the most -- family, friends, and the healthcare team. Keeping physically and mentally active and setting and working toward goals can help overcome depression. Sometimes anti-depressant medication is needed to take the edge off so you can see you can do more.

Your clinic or the National Kidney Foundation may have a local support group that you can join. You can find out how to contact your NKF affiliate at http://www.kidney.org/general/affiliates/nkf_affiliates.cfm. Perhaps there is a support group in your community for people who another chronic illness. Even if the treatments are not the same, the emotions usually are.

One of the best sources of online support that I've heard of is Dialysis_Support. It's free to join and is available 24/7 at: http://groups.yahoo.com/group/dialysis_support/.

You might want to subscribe to the National Kidney Foundation's newsletter called "Family Focus." This is also free. You can find the current and back issues online at: http://www.kidney.org/patients/backissues.cfm

You can join the NKF's Patient & Family Council http://www.kidney.org/patients/aboutpfc.cfm.

You can join the American Association of Kidney Patients http://www.aakp.org

Another resource that can help is Kidney School. By going through the modules -- there is one on coping -- you can get ideas of things to ask and steps you can take to make your life better. http://www.kidneyschool.org

It's great that you are reaching out. I hope by using the resources that are available that you find the support you would like.