Looking for a decent nephrologist

[Gibrail]

Subject: Seeking Recommendations for a Nephrologist and Dietary Advice

Hello my dear friends,

I was diagnosed with CKD in 2003, and my kidney function has been steadily declining. Over the past two to three years, I’ve lost about 10% of my kidney function each year, and my current GFR is at 25. I’m 56 years old.

About a year ago, my nephrologist prescribed Farxiga, but it left me feeling extremely dizzy and weak in the mornings. I don’t have diabetes, so I was then switched to Jardiance, which caused similar side effects. I’ve been a teacher for 30 years, currently teaching at a middle school in Boston, and these medications make it very difficult to function in the classroom. I’m also experiencing extreme fatigue, making it challenging to even finish the workday.

I’m not fully satisfied with my current nephrologist and would like to find someone who truly has my best interests at heart. If anyone knows of a compassionate and knowledgeable nephrologist in the Boston area—or anywhere in Massachusetts—please consider sharing their name. Your recommendation would mean a great deal to me.

Additionally, I’ve been focusing on plant-based protein sources, but I still include a serving of Greek yogurt each day. Is this a safe approach for someone in my condition?

Lastly, considering the difficulties I’m facing at work, can someone in my situation apply for disability benefits?

Thank you so much for any advice or recommendations you may have.

Warm regards,

[LittleDutch]

So sorry things are so challenging for you. I take Jardiance but have diabetes so have really experienced no side effects. I don't hae a nephrologist, but I go to an endocrinologist. Just a thought that having someone like that evaluate your meds and situation and see if there is any different advice they might give.

[Gibrail in reply to LittleDutch]

Thank you a LittleDutch

[WildIris]

Maybe you should give up the yogurt. Also, if you are a Democrat and follow politics, you may be experiencing fear and depression, which can affect the kidneys. Focus on every way you can get anti-inflammatory substances into your body. If you happen to love blueberries, like me, or don't mind other dark berries and dark greens, eat plenty of them. Do you do any kind of breathing exercises when you are tired? If your potassium and phosphorous are high, avoid the relevant foods. Sounds like a renal dietician might be helpful. Best to you.

[Ballspinner]

Unfortunately, I'm in the other end of the state, in the Berkshires. The best nephrologists I've had are my dialysis nephrologists who work for a hospital system here and my current transplant nephrologists in West Springfield. I would suggest nephrologists who are affiliated with hospitals rather than ones who serve private companies. At egfr of 25, you are nearing the point of under 20, when you can become eligible for a preemptive kidney transplant. I wonder if you could connect with a renal dietitian ? I know a very good one who is available on the Renal Support Network (rsnhope.org). She is a transplant recipient herself and eats a plant based diet. She does a Zoom meeting once a month for CKD patients. I never applied for SSI because I was already on Social Security when I started dialysis, but I would think a dialysis social worker would be helpful in terms of applying for it. Out here we have ECU Healthcare in North Adams for assistance in applying for health insurance. Maybe if you contact them they could connect you with an agency like theirs in the Boston area. Local Council on Aging or Elder Services Agencies may also be helpful since you're over 55. Good luck to you!

[Gibrail in reply to Ballspinner]

Ballspinner, thank you so much for your reply and your very helpful input. Happy Holliday

[Darlenia]

Hi Gibrail. You can apply for Medicare once you're on dialysis or if you receive a transplant. But, right now, at this moment, you probably have insurance offered through your school system. If I were you, I'd simply look up my insurance plan online and check out the nephrologists on their approved list. The doctors are often listed with their locations (distance from your home), reviews, and availability. And best of all, you have the knowledge that your insurance supports these individuals so you're not wasting time checking that out. As for going on disability, all I know that requires documentation of your state of health status and there's generally a big lag between applying for it and actually receiving it. Some use a lawyer to push it along. One individual I know (a former teacher's aid) has been completely unemployed and she's been waiting several months now to see whether she's given that benefit. I hope someone in this community who managed to get disability benefits can address this better. Hang in there! You're asking good questions - the more you know, the better you can evaluate the path forward.

[Gibrail in reply to Darlenia]

Thank you so much Darlenia. It is overwealming to figure out what to do next but I feel being part of this community is very reassuring and helping. Thanks again.

[Blackknight1989]

No clue. My eGFR is 17 and I still eat a freaking rib-eye for Christmas and July 4th…I was told tofu and parsley flakes too, but life is short whether you live to 90 or 65…I had an AKI in 1996 with complete organ failure and death at age 29 with 13 pages of ekg flatline, total kidney failure and 7 months in hospital ICU, 5 more at home to completely recover…eGFR was 5 but stabilized at 20…. Last eGFR at age 57 was 17/18. From age 29 to today eGFR has been 20 or below, 20 in my 30s now at 17 at 57…BUT KY EGFR was compromised after AKI and then I developed CKD… my eGFR has been 15-21 since 1998 but without a steady decline…If yours declines steadily what is the underlying cause of the nephron killing. Many of us suffer the AKI (which can be life-ending as I came within a hairs-breath of finding out) but eventually regain some or some regain all kidney function back, as I said sub 20 for almost 30 years but not decreasing. What’s the underlying disease?

I’d say no to ANYTHING that lowered or even has a chance to lower your function…with ever-decreasing numbers, why hasten replacement, dialysis or death? If stable I would, heck I still eat a freaking 24 oz Ribeye 4 times a year! But while my eGFR is lower it’s stable…I’d not add shorten the time to the ugly end of ERSD…nope, but that me. My best to you!

[Gibrail]

Blackknight1989, Thank you so much for you reply.