Connect
← Return to Chronic kidney disease (CKD) support: Introduce yourself and connect
Discussion
Chronic kidney disease (CKD) support: Introduce yourself and connect
Chronic Kidney Disease (CKD) | Last Active: 6 days ago | Replies (12)Comment receiving replies
Welcome to the new support group dedicated to CKD.
I’d love to hear from some of you who have shared your experiences before: @sharlea1313, @katherine65, @abritabroad, @rene123, @maggieinfp, @njwrstlr, @gwladj76, @sallylynn, @ellerbracke, @lbrockme, @kidneyq13, @ggr, @swbwnwsictis1, @lightgoddess, @shotta609, @annc999, @mrainne, @lovely83, @gingerw, @loriel, @cehunt57, @ldrlaw, @popcorn369, @margarethill, @thenazareneshul, @drcoco, @kndaustin71, @susangail53
Check it out. There's new group on Mayo Clinic Connect dedicated to CKD (https://connect.mayoclinic.org/group/chronic-kidney-disease/). Your discussions have been moved to this new group. Be sure to follow the group to get notified of new posts.
So let’s get connected. Take a moment and introduce yourself. If you’ve been managing CKD for a while, what’s one tip or coping strategy that has helped you? And if you’re newer to this journey, what’s a question you’d like to ask the group?
Replies to "Welcome to the new support group dedicated to CKD. I’d love to hear from some of..."
I am an 85-year-old male diagnosed with Stage 3 kidney disease, thought to be "age-related," although I have a long history of being "alcohol dependent." The alcohol use wasn't the typical alcoholic symptom (years of drunkedness, large quantities of hard liquor from hidden bottles), but a couple of beers daily, maybe 3-4 at an occasional festive occasion. It resulted in alcohol being in my system pretty much daily for 60 years! Now, I may have one beer every 3-4 weeks as a treat. Because of the change in alcohol use and efforts to avoid becoming dehydrated, there has been no change in my kidney function, and my primary physician monitors it via annual blood tests.
@klp I was diagnosed with membranous glomerulopathy in 2017. It is autoimmune and I'm stuck with it forever. It nearly killed me in 2017 due many pulmonary embolism, renal vein embolism, and vena cava emboli. The good news is that if I do not take any NSAIDS, it shouldn't rear its ugly head again. The bad news is I cannot take NSAIDS for pain management. I am now dealing with spinal stenosis, and opiods are the only thing I can take that helps at all.
Connect
@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