Looking for someone knowledgeable about Chronic Kidney Disease to talk with over email or text or something. I’ve suffered from kidney stones since I was in Infantry School in 1985 at Ft Benning. I lost count of the kidney stone related surgeries I’ve had but have to be around 50, my first being during Airborne School.

Many years later in 2001, a urologist performed a PNL through my back to clean out the stone burden and in the process knicked the renal artery. During the following week I was bleeding internally and emptying waste became impossible due to blood congealing in the bladder. They had to catheterize me and that also kept stopping up along with the tube from inside my kidney going into another bag (beside the cath bag). It finally built so much pressure blood began to spray from around the catheter and both bags filled in an instant. I barely made it to the ER conscious. Then, 3 weeks of lots of surgeries to clear my bladder, attempts to stop the bleeding, surgeries to keep clearing the bladder until the bleeding was finally stopped. Had to get 12 units of blood from that. When I left the hospital alive, I had 25% of the left kidney remaining. Over the following years I kept getting kidney stones, some would pass, some wouldn’t and required surgeries. Eventually in 2009, the left kidney started going downhill and once it went below 20% I had a nephrectomy via DiVinci robotic surgery at Vanderbilt. I was shocked I’d be walking out of the hospital the next day.

Years passed and potassium citrate has helped keep the stones more under control. The VA referred me to a Nephrologist due to GFR jumping around in the 80’s, 60’s, and as far as 54. I’m now at stage 2 Chronic Kidney Disease with the one kidney I have remaining. I had no idea my GFR was jumping around over the past year so my VA Dr didn’t tell me. That Dr is now gone and the new person treating is a Nurse Practitioner (she’s the one that sent me to the Nephrologist). Glad she noticed, referred me, and told me. Just wondering what to expect, how long a decline takes, etc. Not knowing what I don’t know nags me a bit.

Anyway, thanks for listening and if anyone has been through similar or is a kidney specialist I’d love to hear what your thoughts are on what to expect.

25 years living with a half a kidney that functions a between 38% and 45% .

I do what I am told , when I am told to do it.

I lost 100 lbs.
I am 66 y.o.
I drink a liter of distilled water every six hours.

Low sodium diet ,1800 calories per day.

The program works if you work the program.

If you ever want a pep talk ,wander into the dialysis center and talk to the 40 poor bastards all hooked up ,
Two or three times a week.

That'll get you mind right , toot sweet.

.

Thanks much bendable. Already on that path/program. The no nsaids is the hardest part having a bad case of rheumatoid arthritis. 25 years, that’s a case for the tenacity of life.

With a GFR in the 60-80 range, don’t write off your other kidney just yet. Some are born with one kidney, others donate a kidney and live fine on one. In your case with kidney stones, you can’t wait in seeking care with future stones as you don’t need anymore damage to the remaining kidney. Stay on a program with a nephrologist. Dialysis starts around a GfR of +/- 15. I’ve had peritoneal and hemo dialysis and renal transplant 11 years ago. If you’d like to talk, my email is in my profile. Your blood pressure must be kept in a normal range if that’s an issue.

I have nothing to add 10x, my brother got RA when he was a 7yo. so I can empathize with you in that regard. I pray you get it worked out

OP, you already know about avoiding all NSAIDs. Additionally, just make sure, for any doc who prescribes you meds, that if there are no absolute contraindications and if the meds are metabolized via the kidney, dosing must be reduced according to your reduced kidney function.

I know there is at least one urologist on board. Hopefully he will pop in...

I have CKD, and my urologist told me that it was my excessive intake of ibuprofen. I have frequent headaches and back pain, and I used to pop ibuprofen like candy.

My urologist said I was close to having to go on dialysis if I hadn't found out soon of my condition. He also said I'd get just a little of my function back after going completely cold turkey with ibuprofen. I did go from stage 3 to stage 2, but since I haven't had a checkup in a while, I can't say where I'm at currently.

I would like to offer something of value, but my condition was self induced. Good luck with your condition, and due what you can to stay away from that awful machine!

My Blood pressure was great for over a year so they took me off the b.p. meds

Unfortunately, I qualify as a layperson expert. It’s is a complete dietary change. You’ve mentioned low sodium but that is just the tip of the iceberg.

You need to cut out foods high in potassium and phosphorus as well. That includes by way of example, tomatoes, potatoes, oranges/orange juice, etc.

Food coloring/dye in certain foods is also very bad. For example, cola drinks (Pepsi, Dr. Pepper, Coke) root beer, etc. use a dark colored dye that is killer on your kidneys.

You also need to limit your sugar intake. With poor kidney function, you are struggling to not develop diabetes too.

Fast food, pizza, Italian, Korean, Chineses, BBQ, etc., are a thing of the past.

You also need to watch your protein intake as well. The days of buffets and large juice steaks are now gone. Moderation is key. Smaller more frequent meals is important.

Steroids not just NSAIDS are also bad. Certain antibiotics also shouldn’t be used. Rx dosages may be adjusted as well. The first thing we do whenever we see a medical practitioner is update them on the latest GFR and Creatinine levels so they understand the complexities of treatment.

Mrs. Dash will become your new favorite seasoning.

Good luck. Send me an email if you have any questions. It will be hit and miss for the next few days but if you put SIGforum and your user name, I’ll get back to you.

Edited to add: No bacon (yea I know) or processed meats like at your favorite sandwich shop either. They have so many additives it’s amazing we all haven’t died of kidney failure from them alone.

Exactly what BB61 said.
I'm a CDK3. I have been here for about 6 years and have not gone up in levels because of changing Diet.
For me soda was the hardest. Just lemonade when I go out to eat.

My main strategy is that I DO NOT buy foods that have over 10% Potassium on label.
I am no longer on Potassium Citrate.

Thanks for all the replies. Great advice, some of it I was already doing. Looks like it’s clobbering time. Bacon……man. Bacon and salt. I have been taking potassium citrate for the stones and they’ve done a great job for the most part. They haven’t figured out what’s making my numbers jump around but the tests begin again. Same tests I’ve had a bunch of times. I am glad to not have needed stone surgery since I started the Pot Citrate. I don’t miss stints. Forgot to mention, they said I’d dropped over 20 lbs in three weeks. I wasn’t trying. I’m guessing water weight but I didn’t notice swelling. I appreciate the shared wisdom here.