1. < Chronic Kidney Disease (CKD)
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Moderator

Chronic kidney disease (CKD) support: Introduce yourself and connect

Posted by Kelly, Moderator @klp, Sep 26 4:18pm

Welcome to the chronic kidney disease (CKD) support group on Mayo Clinic Connect.

This is a welcoming, safe space for anyone living with chronic kidney disease, at any stage of the journey. You’re invited to share your experiences, ask questions big or small, and offer encouragement to others walking a similar path.

Please take these steps to participate in the group:
- Follow the group.
- Browse the topics.
- Use the group search to find answers to your questions.
- Introduce yourself.

Whether you’re adjusting to a new diagnosis, managing CKD long-term, or caring for a loved one, you’ll find support, shared experiences, and practical advice here.

Let’s chat. Why not start by introducing yourself? What is your experience, or your loved one’s experience, living with CKD? (i.e., stage, how long since diagnosis, how it’s managed)?

Do you have a question to ask or a story to share?

Interested in more discussions like this? Go to the Chronic Kidney Disease (CKD) Support Group.

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kayabbott | @kayabbott | 6 days ago
In reply to @fdixon63 "@klp Hi Kelly and all. This new support group came just at the right time for..." + (show)
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@klp Hi Kelly and all. This new support group came just at the right time for me. In mid-August I had an emergency heart cath because of chest pain and a "wonky" EKG. It was determined that I did not need further treatment and went home. On day three following the cath I was having problems with my breathing. I have Mycobacterium Avium, colonized Pseudomonas, and bronchiectasis so I felt it had something to do with my lungs. We went to the ER and a CT showed Congestive Heart Failure, blood clots on both sides of the lungs. These conditions put me in ICU for six days and a telememtry room for one day. I was told I should make follow up appts with my primary, cardiologist and Nephrologist. I saw the discharge diagnoses #7. CKD, stage 2. What??? I had to look CKD up--didn't know that one. In the hospital discharge notes it said I am "chronically hyponatremic." Didn't know what that was either. OK, back to earth. They have me on UREA 15g twice a day. Does anyone understand about hyponatremic and this UREA product. The powder is awful. I've tried it in numerous liquids and it is still hard to take. I understand they have tablets and wonder if they are hard to swallow (too large). I see you have to take 8 tabs to equal one pouch of the powder. Any help or advice is appreciated. Thanks much. Faye

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@fdixon63 I hope you can find answers; as we age and our health becomes more complicated it can take time to sleuth what works best for us. Below is a link to hyponatremia and UREA. It is also good to check on whether you are on any drugs that might interact with UREA (https://www.drugs.com/drug-interactions/urea.html ). UREA also comes in Lemon-Lime and Orange flavors, in case that helps. Stage 2 CKD is more common with aging, and diseases; I suspect regulating your water intake is critical. With my Stage 3b I drink a lot of water, but in small volumes throughout the day. Did you doctor(s) or nutritionist mention electrolyte solutions (I used to be an athlete and these were important for quick calories and replacing salts lost with sweat). https://www.aafp.org/pubs/afp/issues/2004/0515/p2387.html https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2811070

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Mentor
Ginger, Volunteer Mentor | @gingerw | 6 days ago

I first was told about my Stage 2 kidney condition in 2005. Immediately I went to a strict renal diet plan, even though my doctors told me there was no need to. In my mind, yes, there indeed was a need! It is my firm belief that doing that, advocating for myself and my situation, kept me off dialysis until 2022. The underlying cause for my CKD is Type III Collagenofibrotic Glomerulopathy, where the filtering components of my kidney are being blocked off by fibrin. It is an autoimmune disease, less than 50 people in the world have been diagnosed with it.

In Aug 2022 I started Peritoneal Dialysis with an eGFR of 14. Each month there are labs taken to ascertain how my system is doing. I am also a blood cancer patient [multiple myeloma], so all this has to play well together. I am very blessed to have a great hematologist-oncologist and nephrologist, who speak together and share information, creating the best healthcare plan for me. Unfortunately, I am not a good candidate for a stem cell transplant for the myeloma. This would have been a precursor to trying to qualify for a kidney transplant. So, I am on dialysis for the rest of my life.
Ginger

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