Neph wants to send my mom home to starve to death

[mrtmeo]

My mom's nephrologist wouldn't treat her prednisone induced hypertension with an ARB or ace inhibitor which would have reduced the amount of protein her kidneys are dumping.
After the rtx treatments, he lowered her prednisone from 40mg to 20mg with 100mg Imuran and stopped doing weekly blood tests.

Her hemoglobin was going down and the last weekly test was 9 and he only recommended 40gms protein per day.
For a couple weeks I gave her 60-70 gms of protein per day and her blood work would get much better, but her bun would go high.
I lowered it to 40-50gms per day and she is now in the hospital getting her 3rd round of 2 pints of blood.

He finally, put her on an ARB and bp med after the ER staff pumped the blood in her too fast and had to use lasix to get out the extra water, dehydrating her again.
On top of this, he cut her 20mg of prednisone down to 5mg after being on 20mg for only 15 days.
Instead of offering a feeding tube with a high protein supplement, he wanted to send her home with a hemoglobin below 9 and said she will probably waste away.

She is only 76 years old but is on 2 LPM of oxygen for copd and tapering valium which causes aweful anxiety and panics. I'm sure he doesn't send his diabetic folks home to die when they are dumping too much protein. Everytime I ask him what those other people are doing to compensate for the protein loss, he avoids the question.

Anyone know how this is normally dealt with?

[Pete]

Is finding another doc an option?

[Debbie C]

That's my thought also,it doesn't sound like your nephew knows what he is doing ? Is he a dr.? Familar with wg ? Like Pete said ..find another dr. quickly

[mrtmeo]

Is finding another doc an option?

I am working on getting a recommendation for a new neph from the person who runs the local vasculitis foundation support group.
I just don't understand how so many people with kidney issues of dumping too much protein are able to keep their bone marrow making enuf blood?
Do they get Epogen shots or feeding tubes with high protein or what?
I asked her neph this question many times and they say they don't do anything.

[mrtmeo]

That's my thought also,it doesn't sound like your nephew knows what he is doing ? Is he a dr.? Familar with wg ? Like Pete said ..find another dr. quickly

Hi Deb,
Neph is short for Nephrologist.
Her Nephrologist has been treating vasculitis for 30 years.
I wonder how many make it?

[Debbie C]

Yea ,after reading your next post I realized my dumb mistake. Still definately find someone alse.

[mrtmeo]

Yea ,after reading your next post I realized my dumb mistake. Still definately find someone alse.

It wasn't a dumb mistake.
I should have spelled it out.

[gilders]

I just don't understand how so many people with kidney issues of dumping too much protein are able to keep their bone marrow making enuf blood?
Do they get Epogen shots or feeding tubes with high protein or what?
I asked her neph this question many times and they say they don't do anything.

I have quite severely impaired kidney function and dump lots of protein caused by WG vasculitis. But I'm actually producing too many red blood cells. This means that my blood cells are being forced from my bone marrow too early. They are immature and deformed.
Nephrologist thought it could be a side effect of Azathioprine, but blood specialist didn't. I had a bone and bone marrow biopsy which ruled out leukemia or other cancer, but still no answers to what's causing it.
I also suggest getting treatment and advice from another nephrologist. Hopefully she is already on the right plan, but maybe her current nephrologist isn't good at explaining things.
In hospital my parents were told that I would not leave hospital alive. Then when my kidneys shut down a new Dr took over and 19 years later I'm not exactly fit and healthy, but I'm certainly alive! So don't accept what he said about her probably going to waste away until another Dr backs that up.

It sounds like you've been restricting her protein intake. I was advised to do this 19 years ago. I stuck to it for the first couple of years, but then slowly started eating more meat, etc. Recently my kidneys have been worse than usual. I asked my nephrologist if I should cut back on the protein again. He said latest research suggests eating a regular amount of protein is best.
Therefore check with the new Dr as to the best diet for your mum.

[mrtmeo]

I have quite severely impaired kidney function and dump lots of protein caused by WG vasculitis. But I'm actually producing too many red blood cells. This means that my blood cells are being forced from my bone marrow too early. They are immature and deformed.
Nephrologist thought it could be a side effect of Azathioprine, but blood specialist didn't. I had a bone and bone marrow biopsy which ruled out leukemia or other cancer, but still no answers to what's causing it.
I also suggest getting treatment and advice from another nephrologist. Hopefully she is already on the right plan, but maybe her current nephrologist isn't good at explaining things.
In hospital my parents were told that I would not leave hospital alive. Then when my kidneys shut down a new Dr took over and 19 years later I'm not exactly fit and healthy, but I'm certainly alive! So don't accept what he said about her probably going to waste away until another Dr backs that up.

It sounds like you've been restricting her protein intake. I was advised to do this 19 years ago. I stuck to it for the first couple of years, but then slowly started eating more meat, etc. Recently my kidneys have been worse than usual. I asked my nephrologist if I should cut back on the protein again. He said latest research suggests eating a regular amount of protein is best.
Therefore check with the new Dr as to the best diet for your mum.

Hi Gilders,
I have been really thinking about this and I believe u r right about dr's not explaining correctly.
My mom's issue must be with something keeping the bone from make enuf red blood cells.
Parvovirus B19 can cause this and probably other diseases.
IV Immunoglobins are sometimes used to improve the anemia.
My mom's anemia was bad until I started giving her more protein like 75 grams per day.
Something must be either attacking her blood cells or the bone marrow can't make enuf.
There has to be a way to figure this out.

This is my mom's 3rd blood tranfusion in 4 months.

[mrtmeo]

Ok, update. Finally got an answer from the nephrologist that epogen can keep her hemoglobin and rbc's up, but it takes 3 weeks to start working. It needs to be given every 2 weeks.
He was not giving it to her at all except just before treatments.

I was able to get my mom's hemoglobin and rbc's up using 75grams of protein per day, but she doesn't have the appetite anymore, so we r getting her a feeding tube.

She just got 2 separate epogen shots this week and using the feeding tube and high protein, this will hold her over until the epogen starts to work.
I found a study proving that high protein diets increase erythropoietin from the kidneys
The response of erythropoietin to dietary pro... [J Lab Clin Med. 1989] - PubMed - NCBI


Hopefully, this can help others with bad kidneys while they wait for the cytoxic drugs to work.
Dialysis patients may find help looking into the ketogenic diet which uses 8% protein, 5% carbohydrate and 87% fat according to this study.
Dr. Charles Mobbs: Diabetic Kidney Damage Can Actually Be Reversed With A High-Fat, Low-Carb Ketogenic Diet « Jimmy Moore's Livin' La Vida Low Carb Blog

I sure wish this info could have helped Barbara.....sigh.