I am a 76 yr old, live alone woman who has long prided myself on my independence. The CKD stage 3 diagnosis in 2019 left me feeling very alone and frightened. Both pcp and nephrologist seemed unconcerned about my CKD and I knew no one else with renal problems.
After many hours and weeks spent searching and learning more about CKD, I was fortunate to find this forum. That discovery was the hope and help producer that made all the difference for me this past year. I've become very proactive and give this group all of the credit for their many referral sites, personal success stories and for learning better ways of managing with this chronic malady.
My pcp knew of no local kidney support groups and I hadn't asked nephrologist in 2 brief visits with her. By accident, I discovered a local support group not funded by either the Nat'l or Am. Kidney associations. I attended my first qtrly meeting last week and it was incredibly worthwhile.
Two members were long survivors of a kidney transplant. News to me that they can now "eat almost anything", they are highly functioning and feeling better than in decades. They continue with regular labs but are both working full time.
Another patient, with no idea or symptoms of renal problems became violently ill at work and when rushed to emergency, was started next day on dialysis. She continued at dialysis center for 3 yrs before just recently beginning home dialysis. This past week she was able to return to work 4 hrs/day and will begin full time next week.
She and her partner laughed about the number of boxes of stored supplies required and the absolute need for utter cleanliness and hygiene but their story was incredibly uplifting.
They are waiting results to see if her guy qualifies as a match for her transplant. If not, he is signed up for a "share" program in which he can donate to another match which I think will move her up on the transplant list.
The facilitator was wonderful. She is employed by our teaching hospital as a nephrology social worker. With 20 + yrs of experience, she was not only a wealth of information but very personable and engaging to boot.
Another young woman attended not as a kidney patient but because this is the Only support group in our city of 300,000. She is a heart transplant survivor with a small 5 yr old. She attends because she just needs to be with others dealing with serious chronic conditions.
The facilitator reported that currently there are 1,090 patients on dialysis here. We no longer do heart transplants and kidney transplants are performed 275 miles away. And yet, in a city of 300,000+, this is the only local support group for heart and kidney patients. The hospital provides some financial and location support but most is raised through twice annual fund raisers.
I share this because just meeting others and hearing their stories helped me so much. I learned new information which will help on my journey. I encourage all to keep spreading the word that there is help and hope available and that all, regardless of where on the CKD spectrum, can benefit from support whether online or through local support groups.
ckd, young need other people’s experiences and perspectives 
Advice From Long Term CKD Patients
CKD stage 3A
multivitamins and ckd
Preparing for transplant
