Newly diagnosed with CKD (Chronic Kidney Disease) and terrified

@ldclark Welcome to Mayo Clinic Connect! Thank you for sharing your story here. You're absolutely right, it can be done, but it can take a lot of effort. It's worth it, even when we feel exhausted and befuddled. As kidney patients, we can hold a lot of the outcome in our hands, by adapting our diets and lifestyles to better ourselves. Each of us a the same, but different. There can be different underlying conditions that led to the kidney issues, and those need to also be handled correctly if possible. And if one has other health concerns, those go hand-in-hand with what we do to better our kidney situation. I always tell myself, and my medical team [of which I am part of!], that it is a balancing act everyday.

May I ask you, do you know the underlying cause of your kidney disease? Mine is a very rare autoimmune condition, for which there is no treatment. I am now on daily peritoneal dialysis, and also am an active blood cancer patient. My chemo has been tailored to minimize the stress on my body, and keep me functioning as much as I can on a daily basis.
Ginger

keep on working at it! Despite all tests biopsy scans and other stuff it has never been determined where mine came from. it appeared suddenly and deeply.

Hi,
I learned I had Polycystic Kidney Disease when I was around 30 years old. I didn't think much of it because I felt fine. I did try to keep a decent kidney diet as best I could. I continued to see my Nephrologist through the years and followed his orders and took the medicine he prescribed. I was doing OK until I was around 60 when I got a Norovirus (food poisoning) while on a business trip. My kidney function started to drop and several months later I was in Stage 5 (ESRD) and had to start Hemodialysis. I immediately signed up for a kidney transplant. I manage to be able to work for another 3 years while I was on Dialysis until I had to take a disability retirement. A couple of years later I was offered a compromised kidney for transplant at age 65. After my transplant I began to feel better and was able to work some part time jobs for another 12 years until the Pandemic came and I was furloughed. I am now 83 and still enjoying life. ( I also had major open-heart surgery last year).
My reason for this long note is to say; don't give up hope. Sure, it was a little tough but I still walk my dog a few miles every day and my wife and I still enjoy the life we have.

Ron

@ron4441 Welcome to Mayo Clinic Connect, and thank you for sharing your story. It is always amazing to me how similar we all are as kidney patients, but also how different we are in our individual journeys! Congratulations on your successful transplant.

Be sure to check out our Transplants Support Group also, and you may be able to offer some insight to others https://connect.mayoclinic.org/group/transplants/. If you put "kidney" without the apostrophe marks in the search there, you can filter to discussions and see what others may be asking or commenting on.
Ginger

I hope you’re getting some peace of mind from the information here. I’m at stage three with a wildly fluctuating GFR. When I asked if I should be on a special diet the nephrologist’s office saiid no. When I looked it up it seemed like diet is very important. That’s also what posters keep saying here. Why would a doctor say just stop taking NSAIDS and supplements, which I did a long time ago, and not care about diet?

@macbarb0503 That's a question we kidney patients often ask! My nephrologists in the past also said that, and almost seemed to mock me when I told them I was following a renal diet as I slipped from Stage 2 to Stage 3. Ignoring them, I continued and feel that is what helped my kidneys preserve their function for as long as they did.

As you read, and we members say here, diet seems to be the number one thing to help us, along with determining and controlling the underlying cause of the kidney disease, if possible. Can you get connected with a renal dietician if you feel you need the guidance, or have you already determined what you need to do for your diet?
Ginger

Thanks. That’s a good idea. I haven’t been able to find a renal dietician in this area, but have been watching my diet. There are some dieticians I found (not renal) online who do video appointments. Any suggestions? I also wonder if there’s even one thing we can eat a lot of to gain weight, without eating too many carbs, or too much saturated fat. Do doctors want us to go on dialysis because of profit? Here the group of kidney doctors works for the same corporation that owns the dialysis center. What other reason could there be for not recommending a renal diet? Do some doctors truly believe diet doesn’t make a difference?

I think diet is very important and my doctor also said to eat what I wanted but watch sodium.

Again I always thought the beginnings of stage 3 were essentially normal over a certain age. I never worried about GFR's in the low 50's but a dip to 36 along with high antibodies for scleroderma sent me to a nephrologist.

I learned that the issue of diet is more complicated than we think. I wrote this before and I will write it again: I was told to have more salt (low blood pressure can affect GFR) and more protein (for muscles, since loss can also affect GFR). Other kidney patients are told the opposite. I also had an echocardiogram to make sure a low ejection fraction was not a factor.

Maybe it is wise to have a full workup like that before embarking on what is considered the standard "renal diet." And if we have GFR's in the 50's or even higher 40's and no protein in urine, maybe we can eat a normal diet and consider changes if things get worse. And the Cystatin C may be much better than the GFR based on creatinine!

I heard same thing from my nephrologist
she said my low bp is bad for kidney
are you taking fludrocortisone?
Dr said that i need to take this, but i dont due to it is steroid
I wonder what supplements are bad for kidny
I take lot of vitamins and supplement