Mayo Clinic remote appointment?

[Bananas2007]

Hi All,

My husband is dealing with a currently undiagnosed kidney issue. His gfr is down to 67 and his creatine is going up. He also has proteinuria. This all started during our 2 month quarantine back in March of 2020. Weird since it's the exact same time my husband lost his grandmother and went through a traumatic stressful time.he also developed high frequency hearing loss. All at the same time.

Anyway, he's at the point now that only a kidney biopsy will determine the cause. I was thinking of getting a second opinion from the Mayo Clinic or some other top Nephrologist in the country, if they offer online appointments where we won't have to travel. Anyone ever try this?

Many thanks,

[RhenDutchess123]

it depends on his age...but 67 GFR is not considered that low...most Nephologist won't do a Biopsy at that stage...They would most likely monitor with Labs a few months and recommend a Kidney Friendly Diet

[Bananas2007 in reply to RhenDutchess123]

Really? His urine creatitine is high as well as his urine protein. We looked back at his old labs and his gfr was in the high 90's back in 2018. In 4 years, it's dropped a substantial amount.

His 24 hour urine creatitine is 1.57 gm/24 hr and his 24 hour urine protein is 1,377 mg/24 hr.

[RhenDutchess123 in reply to Bananas2007]

They usually want to see at least 3 different Lab Results ..and stress and being dehydrated can alter results....So can exercizing, working out and eating too much protien.. .but never hurts to ask another Doctor

[Bananas2007 in reply to RhenDutchess123]

Hi Rhen. He's had labs done for 2 years. His GFR was 81 seven months ago (in the low 70's a few months prior). Now it was 61 four weeks ago and 67 from his labs yesterday. But he's had a renal function panel done at least every 6 months for the past 2 years.

He also has labs from his yearly physical before all of this and his gfr was always on the 90's until the persistent proteinuria turned up back in 2020 and has never went away.

[Bananas2007 in reply to RhenDutchess123]

oh and yesterday, before his labs, he woke up and drank an entire bottle of water then drank a huge fruit and spinach Smoothie and drank an additional bottle of water. Also he had eggs with black olives and jalapeños before testing. His Nephrologist told him to not fast as that can be hard on the kidneys. This most recent test was a re-test because his Nephrologist didn't like his gfr being so much lower than 7 months back.

[RhenDutchess123 in reply to Bananas2007]

So you are not happy with his present Nephologist ?...Does he recommend a Biopsy at this time?

[Bananas2007 in reply to RhenDutchess123]

I like him but he doesn't seem to really dig down and figure out what's going on and start a treatment. Obviously, my husband's kidneys have something going on and rather than just waiting and watch everything go down hill before our eyes, we'd like to be as proactive as possible. What exactly is he cause is since everything has a cause. We were saying, the other day, if it was something aggressive, he'd be dead by now.

[RhenDutchess123 in reply to Bananas2007]

ito just that a Kidney Biopsy has risks and he may want to try preventive measures first and see how he responds..I had one done and I lost 10 GFR and he really didn't get alot of info from it...at the time my GFR was 32 and my creatine was 3...my urine protien was 430

[Bananas2007 in reply to RhenDutchess123]

Well that sucks. Not to sound too negative but we've even tried various diets and we are at a loss. How many years will this take away from his lifespan? Is there a treatment that we could be doing now? I feel as if Nephrologist doesn't know anything at this point...

[RhenDutchess123 in reply to Bananas2007]

the truth is ..there really isn't much they will do except watch his labs and recommend diet changes if phosphorus, calcium and potassium increase...and to be careful with salt and cola drinks...keep blood pressure under control and watch f diabetes

Most Nephologists just monitor and treat symptoms...at 20 GFR you can get on list for transplant or start looking for Dialysis Options...

[Bananas2007 in reply to RhenDutchess123]

Isn't that crazy? I mean, what do Nephrologist actually do other than send you for labs? Again,not trying to sound negative, just really don't know what to do...

[RhenDutchess123 in reply to Bananas2007]

Thats about all they do is monitor you and treat symptoms and wait for a transplant or Dialysis....There is no cure for Kidney Disease

[jodaer]

Is your husband diabetic? I had a biopsy about a year ago. It went OK but ever since I've been retaining fluids bigly. You also didn't say how old your husband was.

[Bananas2007 in reply to jodaer]

No diabetes or high blood pressure. No drinking or and eats all organic.

[RhenDutchess123 in reply to jodaer]

i had a biopsy about 8 years ago and he dx me with GlomerulNephritis...the filters in my kidneys were scarred and that makes the filters die...there really isn't alot that they could do but monitor it...there is not a cure for kidney disease....I started Peritoneal Dislysis about 2 years ago and am doing great on that...I feel much better

[Bananas2007 in reply to RhenDutchess123]

I am glad that you are feeling better. Do they know the cause of the glomerular nephritis?

[RhenDutchess123 in reply to Bananas2007]

They don't know...I had slightly elevated blood pressure...no diabetes..all I could do was try to slow the progression...it took 23 years to go from the low 50 GFR to 12 GFR....then I started Home Peritoneal

[Bananas2007 in reply to jodaer]

Sorry, I didn't see your question until now. He just turned 40. Noticed symptoms when he was 38, still no diagnosis. Not even CKD.

[drmind]

Not all nephrologists fo nothing. Mine tries to clear up problems that crop up that effects your CKD. Mine stabilized my erratic blood pressure, titrated meds to lower hyperparathyroidism, advises about any new meds that may be necessary, monitors all the elements on my labs and makes adjustments. After working with mine for a year, my GFR sent from 24 to 33 and seemed stabilized now for awhile.

[Bananas2007 in reply to drmind]

That is great. The issue is, no doctor can find any cause for his proteinuria or his micro hemituria. Now his gfr is going down and his creatine is going up. His newer results just came in over the weekend so we will see what the Nephrologist says.

[S_dillow]

i agree.mine saw i was potassium low and needed to be on other bp meds so i can thank him for that.im stable for now but he is expecting my numbers to tank by our next visit in 2023.im not worried either way,it is what it is.

[PecanSandie]

Did your husbands parathyroid get checked?

[Bananas2007 in reply to PecanSandie]

yes, it came back normal. He has had dozens and dozens of tests. I think that is why his Nephrologist is thinking it could be minimal change disease or thin basement membrane disease. But his gfr is being affected.

I may ask the Nephrologist to try steroids before a biopsy just to see 8f he responds to those.

[PecanSandie]

I have read that steroids can be hard on the kidneys but I don't know under what circumstances. Is your husband a weight lifter by any chance?

[RoxanneKidney]

you will have to travel. I deal with mayo and only so much can be done over

[Bananas2007 in reply to RoxanneKidney]

We found a doctor ( it with Mayo Clinic) 2 hours away that we are going to try. He specializes in genetic conditions and they have a lab on campus to run all sorts of tests.

[mickeyba]

On line kidney assessment got to be difficult to do. Hopefully there is a metropolitan city one hour drive from you. Explore your options.