Background
Methods
Results
Descriptive results
CKD Stage/Status | Number |
---|---|
1 | 3 |
2 | 4 |
3 | 20 |
4 | 9 |
5 | 1 |
On dialysis | 4 |
After transplantation | 6 |
Stage unknown (Stage cannot be determined from posts) | 47 |
Total | 94 |
Themes
Themes |
---|
1. Dynamics of CKD status |
Current health/ disease status |
Decline in health/progression of CKD |
Kidney transplant |
Dialysis |
Improvement in overall health and CKD |
2. CKD Comorbidities |
Controlling comorbidities |
Uncontrolled comorbidities |
Underlying causes of CKD |
Mistaking CKD and comorbidity symptoms |
3. Managing CKD and symptoms |
CKD symptoms |
Medications and supplements |
Diet |
Exercise |
Other Lifestyle management |
4. Life participation and outlook |
CKD and work or family |
Stress |
Fearful or negative feelings |
Future with CKD |
Optimistic/positive outlook or motivated to change health |
Being unsure or resources not applying (or under support on forum for CKD benefit) |
5. Medical tests and results |
Lab results |
Medical tests/procedures |
Unexpected test results or worrying from doctor visit |
6. Navigating healthcare and clinical needs |
Medical history |
Healthcare differences and resources |
Not aware of early-stage CKD |
Dissatisfied with care or not getting adequate care |
Change in care |
Positive remarks for doctor or healthcare |
Medical specialists |
COVID and CKD |
7. Support on the forum |
Seeking advice or support on forum |
Information Support on forum |
Emotional Support on forum |
Consulting with or knowing what to ask doctors (other users telling others what to ask) |
Slowing or preventing progression of CKD (users sharing their own or telling others on ways to slow the progression – could instead be under strategies) |
Strategies for increasing CKD recommendation adherence |
Caregivers |
Dynamics of CKD status
“My GFR was xx last Feb, xx … My GFR is up to xx and will hopefully continue to improve.” (CKD stage 3)
“It's always sobering when one goes on dialysis but it does save lives. My xx (care recipient), who was very ill … , is now on dialysis and it has improved his quality of life significantly...” (Caregiver of dialysis patient)
“They put my xx (care recipient) on the inactive list at xx (age) so he could claim pediatric points and time accrued since he would most likely be an adult when the kidney was needed. I thought it was a good … for him. Can be upgraded to active at anytime and reviewed at least once xx year.” (Caregiver of CKD stage 4)
CKD comorbidities
“My HBP [high blood pressure] is also controlled by meds and the diabetes is controlled with my diet and exercise.” (CKD stage3)
“I'm a caregiver to my xx (care recipient), a Diabetic Type 2, who is now on dialysis. Unfortunately, diabetes destroys the small blood vessels inside your kidneys. In turn, that erosive force can also create heart disease, … blood pressure, and more.” (Caregiver of dialysis patient)
As these posts were originally posted on the forum during the COVID pandemic, some posts discussed COVID related matters, including but not limited to getting the vaccine while having CKD and comorbidities.“My BP, CKD, diabetes, Osteoporosis, IBS, detached upper arm muscles, high cholesterol and brain fade from xx are all untreated. ...” (CKD stage unknown)
“Ckd and covid vaccine!?? Anybody here got the covid shots … is it safe for xx and ckd patient? what do you feel after the shots? Thnk you !” (CKD stage unknown)
Managing CKD and symptoms
“I'm extremely tired and have no energy, xx cloudy urine, xx pain, xx pain, dizziness, brain fog, weakness, just xx so exhausted.” (CKD stage unknown)
“I am stage 3 B and feel so tired that I have to take xx in the morning to get going. … the fatigue is debilitating. I just sit the rest of the day. Everyday I try to use a xx bike. I rarely can do more that a few minutes at a time. Does this sound like your experiences,” (CKD stage 3)
Management of CKD incorporated a range of challenges, approaches and techniques individuals used or recommended to others such as diet, exercise, medications, supplements, and lifestyle; amongst other strategies. Diet was the most frequently discussed, which also had its own challenges and strategies. Challenges included diet recommendations for CKD and diet recommendations for other comorbid conditions conflicting, while strategies for managing CKD with diet ranged from a vegetarian diet, no added salt diet, to using whole grains over refined carbohydrates, and what the optimal level of protein consumption is.“Sorry to hear your xx is having this problem [skin itchiness interfering with sleep]. The best thing I found was to have a nice warm bath before bedtime. While in the bath I would …. Then I would …. It used to help me sleep better.” (CKD stage unknown)
“Taking certain meds that work at cross purposes is a difficult situation. For me it's xx. NSAIDs are not recommended for xx with CKD.” (CKD stage 2)
“I'm in stage 3 [CKD]... The things that they recommend on the kidney disease diet such as xx and xx are an absolute NO on the diabetic diet. Everything contradicts each other…” (CKD stage 3)
“My meal plan was designed specifically for me based on my diabetes, kidney disease, and xx. Low sodium foods and I use herbs and spices for flavor instead of salt. … No sweets and nothing that turns into bad carbs when digested. … Portion control is critical and by far the largest portion on my plate is the veggies. If you can, obtain a referral to meet with a renal dietitian and bring your …, and design something for you.” (CKD stage 3)
Life participation and outlook
“In the last xx months in my opinion my health has decreased considerably such as not having any energy and not appetite which has caused me to take xx time off work.” (CKD stage 4)
Life outlook included past, present or imagined future feelings, such as negative or fearful emotions around diagnosis or living with CKD, outlook on the future with CKD, and being unsure of what one should do for their own CKD care. Other topics included having an optimistic outlook on life with CKD, being motivated to change one’s own health or feeling as though health is within one’s own control.“…I'm often too tired to do anything more and my xx hr/wk job. I argue with xx about my lethargy and lack of motivation for activity. I doubt I'm alone in this. Thank you for being here.” (CKD stage 3)
“It's just that I'm worried everytime I see xx in my urine, I get all these negative thoughts about my kidney not lasting long.” (CKD stage unknown)
“We can each maximize our own situations. Regardless of treatment approach, doing this will improve our quality of life.” (CKD stage unknown)
“I learned that GFR decreases at a rate of xx every year after the age of xx even for normal healthy people. I’m xx years old now and my GFR is xx, although everything is stable. Do I get to live to xx? Do I get to see my grandchild? My daughter is only xx....Will I be on dialysis in my xxs?... All these questions just keep lingering in my minds...” (CKD stage 3)
Navigating healthcare and clinical needs
“I'm in the xx (country) so things are a bit different over here - the xx (country) seem much more proactive about CVD, CKD etc. I wish I could get more answers - I emailed the cardio but he has just ignored it… I've never been so frightened in my life - I've tried reading everything ... Thanks for your help - even just hearing from someone helps to be honest!” (CKD stage 3)
“Nephrologist’s in many states in the xx (country) refuse to see you until stage 4. I got in because I played the hey i only have one kidney xx, and I earned it. She was xx, rude, and seemed to think I was overreacting to a gfr gone from xx to xx, repeatedly, ...” (CKD stage 4)
Another frequently discussed topic was individuals not being aware of early-stage CKD, in which users described not having been told about being in early-stage CKD until it had progressed farther, reducing the early ability for progression prevention. They also discussed that some health specialists may not adopt a proactive approach for“With COVID I’ve had several telemedicine (phone) appointments too. I am able to show my physicians not only my face but also my hands, xx, lower legs, etc, during these appointments. It’s not as good as a physical exam where my doctors can actually feel for edema, but it has worked. They also have me send them a table with my xx readings.” (CKD stage unknown)
“Found out i had CKD stage 3b from my labs and office visit report. I believe this has happened to many people on this forum. Not sure why primary doctors don’t address this condition earlier so we can start trying to delay the progression.” (CKD stage 3)
“I'm somewhat angry because I've been diagnosed as CKD Stage 3a and my primary care doctor very nonchalantly said "oh you're Stage 3 kidney disease. You've been having some high creatinine and low GFR a couple times in the past couple years." For goodness xx! I went from not knowing anything about CKD to Stage 3a. Cripes. What happened to Stage I and 2?” (CKD stage 3)
“… I'm a mess. I was diagnosed 2 years ago with diabetes xx and that and the fact that I have high blood pressure (although now very controlled) lead me to kidney disease. I'm in stage 3. The thing is, I didn't even know that I was in stage 1 or 2. A million specialists and nobody said a word. I'm terrified and confused” (CKD stage 3)
Medical tests and results
“Has anyone else had this? When I was diagnosed with CKD I had a kidney biopsy and they advised they would take 2-3 samples. Unfortunately the samples were all fragmented and they ended up taking xx samples… I am concerned my kidneys are totally destroyed as they couldn’t get one clear sample.” (CKD stage 3)
“I have received a lab work but I do have question on the range. So my albumin was xx. So even though it is in normal range but it went up from xx (previous lab) to xx (current lab). Is that a sign of concern that it went up and hovering around closer to 5 and eventually be out of range?” (CKD stage unknown)
Support on the forum
“I need help with finding a cookbook or website with recipes for unimaginative cooks. Also, any ideas on what are good replacements: say, recipe calls for beans, what would be a good substitution.” (CKD stage 4)
“When you meet with a nephrologist ask for a referral to meet with a Renal Dietitian and bring as many hard copies of your labs … and together you and the RD can develop a kidney-friendly meal plan based on your …. Once you know where you stand, come back as often as you need for advice and support...” (CKD stage unknown)
“No thanks ever needed; my pleasure. You have come to a community of wonderful, compassionate and knowledgeable people who are happy to share and support.” (CKD stage unknown)