Hi there! This group has helped me a lot mentally and given me confidence. I've been wondering about if I'm doing enough for my health to manage this condition. My nephrologist says he isn't concerned about progression but I still want to stay on top of things. What else should I do? What tips does everyone have about finding a proactive medical team? So far I have done the following:1. Kept my blood pressure below 120/80
2. Increased my water intake.
3. Limit my sodium to below what I'm allowed (1800 but I do 15-1600 except on a relaxed day 1 time a week.)
4. Before I knew about the kidney issues I lost about 100 pounds.
5. I've managed to keep protein in urine in a normal range so far.
6. I try to eat Mediterranean and mostly eat plant products.
7. I've increased my potassium because supposedly my kidneys are not having issues with that. It's only been recommend I avoid high sodium.
8. I've got a Nutriontinist (she isn't a renal specialist though, she seems to know the basics but I can't seem to find a renal specific Nutriontinist).
9. My PCP and nephrologist are in contact.
10. I got a cardiologist I don't have heart issues but I got a cardiologist just in case because of the CVD risk.
Any advice on what else I should do? Nephrologist didn't recommend a biopsy but doesn't know exactly what caused my change in kidneys.
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Live4Hope
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It sounds like you're doing all you can. Just keep it up and enjoy life. You might want to consult a therapist to help you with acceptance and going forward.
You are being pro-active and good you have a nutritionist to help you. I have been on a prescribed CKD diet for 6 years and my eGFR has stabilized. I was diagnosed at eGFR 3b.
life is all about hope. Make the best today, tomorrow will be better.
great that you are taking all proactive measures. I am not sure about increasing potassium. Eat in moderate. Key is to put less load on kidney. Turn vegetarian, this will take you long way.
sometime back a doc told me and I will never forget. Think of a hill when you have Kidney decease. It takes a lot to go bad, mean uphill progression is very slow. During this period you may become careless. Once it reaches the top of the hill, downhill will not stop. No matter how hard you try. I went through same journey. My peak was 1.75 creatinine. It may differ for everyone. After this I tried everything possible, it failed in 6 years. I had regrets.
At 33, my creatinine was 1.3. At 53 it failed. CKD 2-3, time we all forget, at least I did. I could have done better to prolong it. I have always be vegetarian by diet and never take alcohol. Think always the analogy of uphill and downhill.
You may forget it after sometime and go back living same old habit. Never forget your issues. I made that mistake. I forgot the analogy and thought it is all good.
Yes, you can keep as it is for long time, only if you never forget your issues and manage lifestyle. Food and water is biggest. It is daily management.
all body is different, never compare yourself with any. Never think, other person had that issue so you will have as well. Every body is unique.
All the best my friend, best part is it is not end of life. Among so many problems, this is a better problem to have, coz there is a solution. Some illness does not have any solution. Live like with gratitude.
There is always a light on the other side. I found a donor. 2.3 years and all good. It is a beautiful life. I live life full of gratitude and thankful for each day.
Lot research going on, I hope that in 10 years we have artificial organ.
Thanks so much for sharing your experience. I'm so happy you got a transplant and I pray that it will last for more than the average amount. If this isn't too sensitive of a question, can I ask what habits did you fall back into?
I still haven't figured out how much potassium to eat, Nephrologist told me I should eat more than I do now because my potassium is consistently on the low side even though I feel like I eat a lot of potassium. I try to eat as much or more than I do sodium to keep my blood pressure leveled.
Follow what you doc says, I didn’t know your potassium is low. Keep an eye on potassium for sure coz high potassium coz heart issue. Which is biggest issue with people with CKD and on dialysis.
I always lived an almost healthy life. I have never been overweight. As I mentioned I am vegetarian and no alcoholic. When Biopsy was done , my doc told me that damage is due to hypertension. My A1C has never been above 7 and my kidney showed no diabetic impact. .
It’s strange that now BP is normal and I have no blood pressure issue. It is clear that it was not due to hypertension. So cause of damage is not known in my case.
As I said earlier and remember, Every body is unique and it behaves differently. Never get depressed listening to other story because you are unique but learn for sure.
Awareness is the key, If you keep yourself well, you can be there for long.
Thanks for the input. I really appreciate it. Honestly, everyone's story has given me hope for me. My goal is to keep living until I'm old and leathery, aged like a fine wine. 😂
I had an AKI at 29 after CKD 4 diagnosis…I spent 6 plus months in the ICU and another 6 months recovering at home. EGFR was 11 when I left the hospital…rose to as high as 22/23 in my late 30’s early 40’s has now dropped back to the 19 level at 58. Had nearly a 30 year career in my dream job as an independent financial advisor and sold my business last year. Got married, raised two great kids, a son 27 who is now a financial advisor like pop was and a daughter (my little girl…) in nursing school…my wife and I plan a move to the gulf coast before the end of the year, where I plan to volunteer helping other veterans like me. Had both hips replaced, both knees replaced and both ankles fused in addition to almost 20 other surgeries to prolong keeping my natural joints..my las eGFR was 19. I’m 58 as mentioned…I may not live the normal lifespan of a healthy man, but I have been blessed with an nearly an extra 30 years (so far) as the first thing my doctor said was I’ll do everything I can for you but you’ll never leave the hospital you are gong to die…he was wrong the human body is amazing with the type of damage it can sustain and adapt to…Also if you are a believer like I am God has a plan and I’m not finished with it yet, if that’s not what you believe that’s okay too….I have lived my life as normally as I’ve wanted barring only minor adjustments to diet, as well as verifying ANYTHING that goes in my mouth, food, drink, medicine etc, is not renal toxic. Hope that helps!
Youre doing a lot right, well done!. If you ever want a more specific , qualified nutritionist eg that reports renal successes in testimonials etc, let me know and I'll send links privately.
I have to say I’m truly impressed by how much work you have put into staying healthy. I didn’t work that hard at it. However my kidneys were destroyed by lithium toxicity and I really don’t think those measures would have helped me personally.
The risk of kidney biopsy of course is bleeding.
That happened to me. I had a bad doctor who messed up the biopsy, (CT guided) nicked my kidney, and I had bleeding. There was blood in my urine and I had some difficulty passing urine. Doctor told me, Oh, drink a lot of water you’ll be fine. Clots blocked my ureter, could not urinate, I was in horrible pain and had to go to Emergency. They put in a Foley catheter. The Foley shifted the next day, again could not urinate, had to go back to Emergency. Had to live with a bag of urine taped to my leg for four days until the Foley was removed.
Not only that but it was a bad biopsy. They didn’t get enough of the tissue they needed to adequately see my glomeruli. My doctor lied to me and didn’t tell me this but another doctor saw the copy of the biopsy and told me.
Needless to say, I will never go back to that hospital and changed doctors.
I had to have a second biopsy, this one ultrasound guided.
I truly hope you have had or can get an abdominal ultrasound to look for cysts or other abnormalities since that is not at all risky like a biopsy.
Hydration is critical for healthy kidneys. You do not necessarily have to drink 8 glasses, 2 L, 64 oz for kidney health which you may hear a lot. In fact that is too much for me, it makes my sodium low. I have found 58 ounces is best for me.
Stay on top of your labs, as you are already.
You are rather young for stage 2. You could try to get a second opinion but as I said, biopsies are risky and I don’t know if you will find a nephrologist who will recommend it at this stage.
You are not wrong to be in search of a cause for this.
I wish you the best of luck. I hope you do not end up like me with kidney failure, having to do dialysis, and getting a transplant. You are very very far from that! Very far!
Never take any nephrotoxic medications such as alleve, nuprin, toredol, all NSAIDs. Avoid iodine contrast dye! Gadolinium is OK.
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