Renal Failure Best Nephrologists? Additional patients forum?

[HopeKidney]

1. Are there any additional very active kidney failure patients forum?

2. Does anyone know who are considered the best nephrologists in the US?

Renal Failure. Egfr about 10. Creatinine 5.5.

8 years ago had nephrectomy for Renal Cell Carcinoma. But the quick deterioration in the past few weeks is unexplained by the nephrologist, or by ultrasound scan. Now being considered for dialysis at home.

I was looking to read about similar stories and find an idea for additional testing that can detect the reason.

[Philipjm]

Hi, often no explanation, when I was diagnosed with renal failure(eGFR) of 40, took 10 years before I had to dialyse. Over two year period went from eGFR of 22 to 8ish. Had so many scans, biopsy’s etc but cause unknown, I just got the short straw.

I am in the UK and am on nocturnal home heamo dialysis using the NxStage machine, do it every other night, get a great clearance, bloods good each month, still work I am 72, travel, have an active life, give talks to renal patients in hospital to encourage and show that this awful disease can be managed and to be almost “normal” whatever that is.

Hope yiy get sorted soon, best wishes.

Philip

[Bassetmommer NKF Ambassador]

HI Hope,

You might want to see about the Peer mentor program sponsored by National Kidney Foundation. they match you up with someone who has simialr issues and you can talk to them directly. Here is the information kidney.org/patients/peers 855-653-7337

[Gotthecall_123 in reply to Bassetmommer]

Hi i would be interested in becoming a mentor ?.

[Bassetmommer NKF Ambassador in reply to Gotthecall_123]

Hi gotthecall,

Give the number or use the link to find out about becoming a mentor.

[Gotthecall_123 in reply to Bassetmommer]

Thank you very much for the info 💪🙏😝

[Jayhawker]

I found my current VERY GOOD nephrologist by Doing the following:

1. Talked with nurses running several dialysis clinics in my area.

2. Checked healthgrade reviews.

3. Checked reviews from other nephrologists in the region (the region I live in lists the top nephrologists as voted on by other nephrologists in the area)

4. My impression of the initial appointment with the top three “candidates”

I was looking for a nephrologist who is current, supports patient involvement in renal care plan, and provides patient education in each appointment.

My first nephrologist was excellent! He provided lots of excellent patient education. And his treatment plan is still the core of my treatment plan today, nine years after my initial diagnosis. I moved though so had to find a new nephrologist. My second nephrologist was not good; he was just going through the motions, so to speak. This past May I shifted to my current nephrologist. He is even better than the first.

My renal function has not improved; however, I am definitely both feeling and functioning better on a daily basis. I’m still headed to dialysis (or possibly a transplant) but I will play a major role in deciding the renal failure treatment I pursue. And, my current nephrologist is in 100% agreement with the treatment plan I had (under the guidance of my first nephrologist) selected for myself when it is necessary for me to move to dialysis.

There are definitely good nephrologists out there. But there are also plenty who are not worth your time or money.

Jayhawker

[ryanosu in reply to Jayhawker]

Hi there. Read your response about your current nephrologist. Taking a chance that you live in Kansas, as I do, and could give me the name of your nephrologist. I’m in stage 4 and not satisfied with the treatment from my current doctor. I understand if you don’t want to put his/her name on the forum, but maybe give me their initials? I liked the way you describe your doctor as being concerned with your education and treatment plan. I have had kidney disease for over 11 years and feel lucky to not have dialysis yet, but it is inevitable. A good doctor would be a great asset. Thanks for your time.

[KidneyCoach NKF Ambassador]

Sorry to hear you'll soon be needing dialysis. Remember though this is merely a lifestyle change not the end of life.

Here is a great social media group you may find helpful.

facebook.com/groups/HomeDia...

I am a member of 25 groups or so on FB which are all fairly active. If you'd like more recommendations let me know.

Best nephrologists in the country will be as different as asking what are your favorite sports teams or best rock n roll songs. I was recommended several different doctors over the years from surgeons to neurologists to endocrinologist. Some were the worst for my needs and personality some were awesome. For instance I'm very proactive and self manage my health well. When I find a Doctor that prefers taking full control its not a good match. Ask around for the best or most recommended in your area and go from there.

The recent quick deterioration of kidney function is often unexplained. It sounds like your nephrologist has done the standard tests to diagnose why. Have they talked about a biopsy? You don't give us results from before to see the drop.

As I said there are many other groups on social media you may find interesting or helpful

Kidney BEANS Count

Dialysis Discussion Uncensored

I Hate Dialysis

Kidney Disease, Dialysis and Transplant

These are all starting points for you.

Many Blessings

[HopeKidney]

Thanks for your responses. Creatinine rose in one week from 4.5 to 5.5. After reading a lot I suspect that iron infusions that I were given in addition to Recormon to raise hemoglobin to 10.5 may have put too much stress on the kidney.

I live overseas and as in previous health issues (cancers that I had) - I was looking for a nephrologist that might surprise me with innovative treatment or tracing of the source of deterioration to prevent further deterioration.