Living with Stage 4 Kidney Disease

I sure wish I could help you with that question, Stuart, but I can't. For the past 20 years I have only had one nephrologist (had another before that), and she is advocating for the meds. She did say that she expected that I would have been on dialysis years ago, so she is doing what she can to keep me off of it. Perhaps you can contact each of the nephrologists on your list and ask if they prescribe meds to hopefully keep you off dialysis. Good luck!

I’m 69, and my gfr is 13. It’s been around 13 for several years and I’m able to keep it stable! I’m not on dialysis. I don’t take any medication. My nephrologist at Mayo is watching my blood tests monthly. I watch what I eat by eating healthy. I don’t have high blood pressure or diabetes. I had cancer 3 times but not currently. There is hope for ckd patients if you eat right and exercise daily and reduce stress. I play pickleball, rollerblade, ballroom dance, and hike daily in MN. I live a normal life and I’m constantly aware of my body. Every day I think about how I can take care of my body. I hope the best for all who read this who have ckd.

Ozempic was approved January 28, 2025 for slowing CKD . But the price won’t go down until 2027.

@stuartbell
Your PCD should be able to give you a recomendation to a nephroloist. Ask about the aforemention meds and why. In addition have your Dr. give you a referral to a nutritionist to teach you a Friendly Kidney diet. I learned 2 years ago that I had stage 4 with a GFR of 28. My diet now consists of the following.
Under 2000 mg of Sodium, Potassium and Phospouers grams per day. Under 135 Carbs per day. 0.6 Grams of Protien based on my wieght in kilos.
and plant protien. Track my food values now on an Excel spread sheet. I hope that this helps.
George

@tapdancer
My nephrologist at Mayo suggested I get on the transplant list since my eGFR reached 20. The social worker called and said I would remain on the inactive list but would not lose my place in line if/when my function reached 10 or whenever I started to feel really sick. This could be 3,5,10 years! Kidney function decline cannot be predicted and they want you to keep your working kidneys as long as possible.

@tapdancer
Also, congratulations on staying healthy and keeping your kidneys for so long!

@georgecjh

I have requested the referrals you suggested for quite some time - years - at each visit.

None have been provided.

@mrainne getting on the transplant list is good. You can stay healthy and live well without a transplant for now. I’m not a candidate for a transplant because I’ve had cancer 3 times. Peritoneal dialysis is what I’ll have some day if my gfr gets worse.

I am new to this discussion today and using only a group of letters to describe something leaves me with not a clue what you are talking about. I have Stage 4 kidney disease and if I under correctly, do I have a death sentence. I am 85 years old and all alone and displaced from 26 years in Southern Florida, in Fort Myers. Hurricane Ian totally wiped me out of everything that I had acquired in my whole life including my auto, and I only had what I had on, a pair of shorts and a t-shirt and completely destroyed and homeless at 82 years old then when it destroyed my retirement life, to a homeless life, because neither FEMA or the VA would help me get an apartment, and I was very angry because the both get billions of tax payers money, and they just left me homeless because they both left me homeless because they said they don't help you to find an apartment, even if you are homeless. So I asked them both what did they do with our tax payers billions of dollars every year, just have parties, and neither would answer me, they just left me homeless and walked quietly away. After a month and a of homelessness a little church up in Ohio rang my cellphone while I was walking hopelessly down the street in Fort Myers Florida, and said their little church in Ohio wanted to help in that hurricane that struck on 28 Sept. 2022, but they were such a tiny church on a country road in Ohio, and they couldn't do much so they voted as a church to help one person, and they got a list of homeless people and my name was at the top, so they were contacting to see if I wanted their help, and if so I would have to come to Ohio so they could help me little by little. She said that I didn't have to come, they would just continue down the homeless list until I got one homeless person to leave Fort Myers and come to Ohio so they could help little by little. So she said would I come, and I thought quickly, where did they get that homeless list and how did my name get at the top. At that point I told her that I came here 26 years ago from Ohio at 56 years old, and I lived a half our from their little country road church. I thought to myself quickly because she wanted an answer, and I thought I didn't like the cold and snow and icy roads anymore, but if FEMA and the VA were not going to help me get an apartment, what was I supposed to do, stay homeless? So I told her that I would come, and they sent 6 people from that little country road church 1,025 miles and got me, and I have been displaced here for 3 and a half years. They had and apartment for me when I got here but the problem was it was completely empty like it should be so you could bring your stuff in, but I didn't have any stuff, no clothes, no dishes, no silverware, no bed, not chairs, no food, no toilet paper, no nothing. But I had an apartment that this little church helped me get, and now finally I had a place to put the things this little church, and senior centers would help me get. It has taken the whole 3 and a half years to finally have everything that you would have in a two bedroom apartment. The problem is they don't have enough doctors here so most of the time it is nurses that write your prescriptions, which I can live with. But with them doing the diagnosing, just doesn't work. They have 2 to 4 years less medical training than the family doctors, let alone the Specialist doctors training. One time I went to the emergency room at the hospital, and it was 10 hours before they even looked at my situation, and 13 hours before I left the hospital, and they never addressed my problem that I came to the hospital for. Those 13 hours were for nothing. In 3 and a half years I have switched family doctors 4 times, because their nurses and most of their doctors are incompetent

@havirovpaul welcome to Mayo Clinic Connect. You are posting in a discussion in the Chronic Kidney Disease Group (CKD). You said that you have Stage 4 Kidney Disease, so you are definitely in the right place. Please know that this is NOT a death sentence! Most of us members here are in a similar health situation. You are not alone. You can live comfortably and reasonably well with this condition.
I’m so sorry about what happened to you from the hurricane, losing everything and homelessness. It is good that you now have shelter and are starting to acquire the things needed for daily living.
Hopefully you can find medical providers who can help you develop an appropriate treatment plan for your situation. In the meantime you can learn a lot here about hydration, renal diet, medications, exercise, mental & emotional health…..etc. Do you have questions that some of the members here may have some information that might be helpful to you?