Looking for a Nephrologist to work with me on Meds

I'm still looking for a Nephrologist - but it seems hopelesss.

I had an excellent visit with a Mayo Jacksonville Nephrologist, but she refused me as a patient because I lived to far away, I moved closer to Mayo and sent my new address, no response.

I discussed several drug options with her - and at eGFR of about 25, I am not really a suitable patient. I requested low dosage GLP-1 after reading papers showing a stabilization in the rate of decline in eGFR for non-diabetic CKD patients. We concluded this might be suitable and my "regular" Neprologist might consider them. He refused to even discuss the drug in a professional manner, so I'm looking.

The original Mayo Nephrologist suggested I contact the Stem Cell program administrator at Mayo, Jacksonville. I did and was offered no direct evidence showing the stabilization of eGFR in existing patients (there was only one patient's partial result available). I was told the program was for people who "believe in the effectiveness of stem cells."

I have completed a 40 pound weight loss plan and am stable at my goal of 165 pounds. This may have resulted i a stabilization of my eGFR decline but only repeated tests will help me separate true eDGR stability from random test variation or chance.

With no offered options for fruther improvement, I will follow the suggestings of my NOURISH-provided renal dietitian, continue with my weight and exercise plan, and look for fruther progression.

I have been told I'm to old for a transplant.

Ideas????

Assuming you've been to Kidney and Hypertension Nephrologists in Boynton Beach or Delray Beach. There is also Boynton Beach offices for Florida Kidney Specialists . If your nephrologist hasn't contacted you after you sent them your new address, calling them might be necessary. It sounds like you are doing the right things and want to try the GLP-1 meds. Don't give up - it's hard to find doctors, especially specialists, who are the right fit for you. I tried to post the phone numbers for you, but it isn't allowed for new members like me.

@stuartbell Sorry to hear you are still looking for a nephrologist. I see two nephrologists, including one at Mayo Rochester. I starting driving the 90 minutes from the Twin Cities but winters are tough. He rarely did much physical examination like listening to my heart and lungs, so I asked if we can do video visits. (I see my "ITG team" quarterly.)

The clinic sends a box of tubes, urine collection equipment and instructions to me and orders to my local clinic. When I go to do labs for the local doctors, the lab does the blood draws and packages everything up to send to Mayo, too.

I wonder if you could make a similar arrangement with a Rochester Mayo nephrologist. It's possible that since ITG is such a rare CKD (only 10 people in the world have been found so far by the team led by my Mayo nephrologist) and he has publications on ITG, that I was accepted as a patient. I may also have had a referral from my local doctor, perhaps the nephrologist.

It's possible (likely?) that he'd ask for an in-person visit to get things started.

Good luck.

BTW, I don't take many meds that directly affect my kidneys. But I do take meds for BP lowering, gout, and pseudogout, The exception is a med for lowering proteinuria that was recently approved for kidney patients but was first approved for patients with Type 2 diabetes that lowers blood sugar (I'm not diabetic). It seems to have an effect but my urine protein is still 10 times higher than normal. I'm back being borderline Stage 2 and Stage 3 after an experimental round of a plasma cell destroying med that has been observed to reduce ITG in myeloma patients (I don't have detectable myeloma).

@mnsansei I had two visits via video with Mayo nephrologist. I have no problem going there for an in person visit and I’ve actually moved closer to be within their service area.

They have not accepted me as a patient and are willing to work with my local nephrologist who seems not willing to work with them.

I ask him to recommend nephrologist somewhere in South Florida. They would work with and they declined.

I’m not sure how to proceed.

@veryoldhippy over the past 12 years I’ve been to three nephrologist in the Boynton and Delray Beach area and one nephrologist at the Cleveland clinic.

They’ve all been very nice, but they haven’t offered any medication.

I found a renal dietitian through Nourish that has been very helpful.

@stuartbell I misunderstood. I thought you visited a nephrologist at a Mayo clinic in Florida.

I do video visits with one in the original clinic in Rochester, MN. As I noted, my initial visits (until winter arrived) were in person but I have only done video/phone visits since then. You might have to do one in person, I suppose.

My two nephrologists can read each other's notes (about me) even though my HMO is a separate clinic system. Fortunately, my Medicare Advantage plan has very generous coverage that include at least the three major HMO's in the Twin Cities, one in Duluth and the Rochester Mayo Clinic.

I did visit 2 Nephrologists at Mayo Clinic in Jacksonville. Neither would accept me as a patient and none of the Nephrologists I visited in the past 12 years with CKD want "outside" help or consultation.

@stuartbell although we are grateful to Mayo for hosting this wonderful site, everyone on here is not a Mayo patient. You live close to Cleveland who are up and down the South Florida coast. You should be able to get an appointment with one of their many nephrologist groups. I see you did see one at Cleveland but perhaps try for a referral from your PCP.
Having said that, there are no medications available for CKD, just lifestyle changes, especially with diet. With stage 5 (at the age of 77) I was able to maintain until I received a kidney, after being on the list only 13 months. At Cleveland, age was never a factor. Please don’t give up!

It is difficult to believe, after reading literally dozens of research papers, that none of the available, tested and approved medications will possibly reduce the rate of decline of my CKD.

I work with a renal dietitian, exercise daily, follow a reasonable kidney diet, and maintain a bmi of under 25. That is about all the lifestyle I can do.

I watch and read of clinical trials of various drugs and none of the Nephrologists are even willing, after about 12 years of decline, to discuss their possible use to slow my decline.

All I hear is what seems like excuses - I am to old to benefit, My eGFR is tl low to benefit, we have an excellent dialysis center and the recommended treatement is $40,000 but we won't share the results of 3 years or so of administrating this treatment with you.

This is depressing. I know these physicians have more patients than they can possibly treat - but it is hard to accept I am one of the untreated.

We all have to die - but I am having a hard time grasping why I will die before I have to - or be limited by dialysis to years of decay - when I read research papers showing improvement.

My present plan is to lie about my weight and purchase a low dosage GLP-1 pill from one of the many scam pushers - since papers have shown it to benefit my CKD.

I can understand if a physician, in their best professonal judgement, feels a drug won't benefit me in fighting the decline of my eGFR - but to refuse to read the research publications, and only offer me a prescription with the understanding "it won't help and I won't monitor your health if you take GLP-1."

@veryoldhippy my email is