After considering age and other medical problems, my husband has decided on conservative management instead of dialysis.
Is it possible to hold at 10 or even rebound a little for a while?
Also, the nephrologist suggested Renadyl. Anyone have experience with that?
Thanks for any response.
Every situation is so different, it's hard to know about any improvement for your husband nor how long he may live with an eGFR of 10. However, my eGFR was 9 for a little more than a year. It then elevated to 13. It stayed at 13 for about 6 months before improving to 15-16 where it is today.
In my case, although there has been some disagreement across the nephrologists who have reviewed my data, the majority believe this improvement results from an increase in my blood pressure. (My blood pressure has been quite low with sudden drops occurring 4 to 5 times a day. This low BP problem has improved over the past 15 months. I no longer experience the sudden drops in my BP. Plus, my BP has elevated to 116/58. I have orthostatic hypotension so this is by far the best my BP has been for many years.)
So, at least in my case, there can be some modest improvement. I've told myself to do what my doctors tell me and then hope for the best while preparing for any inevitability.
I'm keeping both your husband and you in my thoughts and prayers. This certainly isn't easy.
Marj
Thanks for the detailed response. Repeating labs the end of the week...not expecting a miracle, but maybe a glimmer of hope for a little more time.
Continued success with your improved numbers!
I've been through so many labs over the past eight years; lots of worry and frustration. Stay strong; the mental battle that goes with CKD is certainly challenging!
Marj
Wow Marj. I went on dialysis in January this year when my Dr told me it was time. I had a GFR of 13 and only symptom was being tired all the time, and taking lots of naps. I cried when she told me. And I wondered why she felt I needed to start dialysis at that time. I have a friend online, why was on dialysis, and was very sick before he started on it. He now has a transplant, thank God. And I feel worse since starting dialysis. My BP went down several times while on treatment, and I got sick. That was scary to me as I had never had low BP before. They finally told me not to take my BP pill the mornings I have dialysis. I am wondering now if I still need meds for high BP, will check with my other Dr.
Before going on dialysis I was taking Chinese herbs to help raise my GFR. I think that it did help for a short time. Of course my medical Dr said to stop taking the herbs when I started dialysis . (most Western doctors do not believe in alternative healing methods, sadly) I wish your story was mine.
Thank you
It’s risky but nothing is impossible. You and your husband need to stay on a severe renal diet. What you eat and drink impact your kidneys. I would get professional advice on diet but also do your own research. I am at 16 and am watching my GFR drop very gradually for the past 5 years. It’s scary but so long as he’s urinating well then you have a chance. Best wishes. Stay strong.
Thanks for responding. We are definitely sticking with the renal diet. Other than some anemia issues, he is doing OK. Just hoping for a little more time before symptoms interfere with quality of life.
Risk is a personal choice, but besides kidney disease one could be hit without warning by any number of crises. I can only tell you what I do. My wife and I decided last year to spend a month in Israel. With the lowering GFR I was concerned that should “something” happen what would we do!! After many months of needless anxiety, sleepless nights, we chose life. We leave on Monday and I am trying to focus on this trip. You can’t let kidney disease control your life. Enjoy your lives. Stick to a healthy diet (no meat!!) and do the things that make you feel good about living.
Love your positive attitude...have a great trip and make wonderful memories!
I just did a quick search, and find it interesting that none of my usual go-to spots (Mayo clinic, kidney clinic, fresenius, renal.org, etc.) popped up.
Two months ago, Bassetmommer
did post the following: "Interesting information out there on this product. Seems there was research done on this and this is what they found: "The results indicate that the administration of the formulation in ESRD patients is safe and might even have a slight protective effect, as indicated by a trend toward reducing inflammation markers." ncbi.nlm.nih.gov/pmc/articl...
Another study also concluded that there Administration of Renadyl™ for 4 months in CKD Stage 3 and 4 patients, reaching the highest dose of 270 CFUs per day, appears safe and well-tolerated. Statistically significant improvements were noted in creatinine, C-reactive protein, hemoglobin, and physical functioning. Trends toward reduction were noted in BUN and pain. Other markers of inflammation and oxidative stress exhibited a lot of variation. The study did not have sufficient statistical power to ascertain changes in other molecular toxins. There were only 28 people who concluded this study......
omicsonline.org/dose-escala...
I caution you again about taking unregulated products. Talk to your doctor about taking any supplement. Your health professional has your big picture and can tell you if something is safe for YOU.
Hope this helps!
Thanks for the information. I had to dig for references, too. The nephrologist suggested it, so we decided to try it. Just started last week...
My nephrologist has never suggested anything! I don't know if it is just where I live in the UK but my experience with nephrologists has been poor. Never had any medication or even suggestions to slow down the progression. I was at 21% at one stage so you would have thought they might have tried to preserve that. All my lot seem to do is want to get me on dialysis as soon as possible.
I can tell you I started all this at GFR 11. I have taken supplements, watched diet, exercise and that was 4 years ago. I’m now at GFR 8 which is 1 higher than last time. I managed to drop my creatinine and put phosphorus and potassium in range. Don’t lose hope, be proactive. Prayers for you. God can do anything😀
I appreciate your response. Thanks for the details and encouragement! Keep up the good work on your holding pattern...
My husband is down to. 5 now... having chosen no dialysis. Biggest issue currently is anemia and high phosphorus..hoping for just a little more time...
Addressing the phosphorus with binders,, and the anemia issue with Epogen.
Has anyone rebounded from there?
I was wondering how those of you who GFR is under 12 are feeling? I went on dialysis because I felt so bad--tired and weak, flu like symptoms, no energy. My GFR was going down from 12 to 7. I felt I had to do dialysis because my quality of life was so poor. I am still urinating quite a bit and have for the 3.5 years I've been on dialysis. I feel really awful after dialysis and until mid-day the next day. My GFR has actually gone up to 12 while on dialysis. But it is such a bummer that I feel so poorly afterwards. Then I feel fine until I go again.
At 16% I felt so bad that I was tired all the time but still worked full time. My company were very good at let me work from home four days a week and I did this for a couple of years until I hit 12% in June last year and then it was just impossible to keep working as I was barely functioning. So I went sick. My eGFR has now fallen to 10% but because I don't have the stress of work and am able to rest much more I actually feel better than I did at 12%.
Have you started dialysis yet? I'm glad you are less tired.
No they want me to have the PD pipework done as soon as possible and actually start dialysis at 8%.
I see. Yes, if you can do peritoneal dialysis that would be great! I wish I could do it, but I have too much scar tissue in my belly from a previous surgery. Going to a clinic 3X a week for hemodialysis is quite difficult.
