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 (http://www.ncbi.nlm.nih.gov/pubmed/2732620)


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 (http://livinlavidalowcarb.com/blog/dr-charles-mobbs-diabetic-kidney-damage-can-actually-be-reversed-with-a-high-fat-low-carb-ketogenic-diet/10660)

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

[mrtmeo]

update 2.
The drs tried to talk her out of a feeding tube and are now, making her wait.
The longer she waits, the more kidney damage happens due to the anemia and protein dumping.
She should have been given the Epogen every 2 weeks and the ARB (Angiostensin Renin Blocker, so that none of this anemia would be happening.

The ARB's and Ace inhibitors will lower the protein dumping by the kidneys and keep the blood pressure down if necessary and takes 2 weeks to start working.
The Epogen is erythropoietin, a hormone sent by the kidneys to the bone marrow to signal blood cell production and takes 3 weeks to start working.

So many simple things which would have spared her kidneys and so much pain and suffering.

[mrtmeo]

update 3
Found out my mom has leukopenia checking her chart but both drs told us her blood work was stable.
I had taken my mom to the hospital gift shop and relatives came to visit.
It sure would have been nice to know that she was extremely immune compromised before hand!

[Debbie C]

mrtmeo, your mom is so lucky she has you looking out for her because it doesn't seem that this drs. know wth they are doing.Is she on a feeding tube now ? I hope all goes well and she will start to see some improvement soon

[mrtmeo]

mrtmeo, your mom is so lucky she has you looking out for her because it doesn't seem that this drs. know wth they are doing.Is she on a feeding tube now ? I hope all goes well and she will start to see some improvement soon

Hi Deb,
No, she can't have a feeding tube as long as her wbc and neutrophils are too low.
However, I believe this is what the body is supposed to do because now, she has almost no immune system attacking her body.
She had so much energy yesterday and an appetite.
she got exercise many times yesterday.
She still feels better today and her wbc's are coming up.
Rituxan lowers the b cells to nothing and then they gradually start coming back, but while they are coming back, both neutrophils and wbc's go way down.
The goal is to get the b cells to come back functioning normally and the hijacked neutrophils gone and regenerating new ones without antibodies attached.
I wonder if this is what happens to all those wg's folks that have rituxan and spontaneously feel better after a few weeks or months?

I have to find out if her hemoglobin stayed, raised or lowered to know if she may still need a feeding tube or not.
Hopefully, the ARB will kick in by the end of the week blocking some of the protein dumping and her own appetite might be enuf.
In 2 weeks, the Epogen should kick in allowing her bone marrow to make more blood.
A high protein diet will do this too.

[mrtmeo]

update 4
The sent her home sept 1 and she consumed 80gms of protein for the day.
The next day 6am, she had sharp jolting pain in her right chest and went to the ER.
The ER found nothing wrong with her and lo, her wbc's came up, her albumin went up to 3 and neutrophils came up.

Date 9/1 9/2
WBC 1.65 3.56
RBC 2.99 3.57
Hmg 8.9 10.5

Date 8/30 9/2
Albumin 2.4 3.0


Urinalysis prior to 9/2 had moderate blood, protein 300, elevated RBC's in urine and everything else within normal range.

UA 9/2, trace blood, protein 200 and everything else normal.

Her hospital dr told me that it would take many weeks to get her albumin up to normal.
I can't believe they are that ignorant.
I figured out that her sharp jolting chest pains are due to the herpes virus and 4gms vitamin C per day should get rid of it.
Her immune suppression must have reactivated it even tho she was on Acyclovir (antiviral for herpes).
I ordered BariatricFusion shakes which are meal replacements to tide her kidneys over until the Epogen and ARB kicks in.
I sure hope this can spare her kidney function.

I know the drs start looking at possible remission once the lymphocytes drop below 2, but my mom's has already done this and she is still anca and mpo positive.
The studies show people do not reach remission until, at least, 3-4 months from the first infusion.
My mom is slightly after the 2nd month from the first infusion.

[tigerleah23]

I get Epogen shots at every dialysis treatment through my lines and I haven't had anemia in many years because of this. When they were struggling to get my blood count up, they were making me drink protein shakes daily also. It took many trips to the hospital and almost two years to get it under control. It sounds like your Dr's are doing a lot of test-and-see-if-it-works. Are there any Dr's close that have more specialty with WG?

[mrtmeo]

I get Epogen shots at every dialysis treatment through my lines and I haven't had anemia in many years because of this. When they were struggling to get my blood count up, they were making me drink protein shakes daily also. It took many trips to the hospital and almost two years to get it under control. It sounds like your Dr's are doing a lot of test-and-see-if-it-works. Are there any Dr's close that have more specialty with WG?

Hi Tiger,
Yes, I get the same thought as they are treating her like a test case.
One dr said she is a complicated case in a demeaning way.
This nephrologist claims to have 30 years experience with vasculitis patients.
She should have never been kept below 11 for the hemoglobin and this should have indicated to him that she needed Epogen shot.
I am working on getting in touch with another nephrologist that comes recommended, but I have to get her next epogen shot in a couple days.
I am giving her protein shakes, but her BUN shot up to 125.
Her kidneys must really be struggling.

[mrtmeo]

update 5
Went to see the nephrologist and he didn't not have her Epogen injections for outpatient setup, yet and she is due tomorrow.
He thinks she has an internal bleed and/or a low level GI bleed, but doesn't care to do anything about it.
He thinks this is causing her severe anemia.
She already had a colonoscopy and EGD showing a non bleeding ulcer and they cautorized some blood vessel and removed 2 polyps in the lower colon.
The only thing I could do now is have her get a thermogram because she had one a couple of years ago which spotted the colon issue.
At least, we would have an idea of where it is coming from.
This crap just doesn't stop and my mom is weak and fatigued she can't do anything.
This is no way to live.

Found out that if they scope you and your hemoglobin is below 10, they won't find a bleed.
My mom's hemoglobin was 7.5 and 8 for the scopes.

[Dirty Don]

Your mom needs a new doc...one who gets it. Best to you both.

[mrtmeo]

Your mom needs a new doc...one who gets it. Best to you both.

Absolutely, Don and am working on it.

[tigerleah23]

This is horrible. I wish I could yell at her Dr.'s for you. Sounds like she needs treatment NOW, not later. Get a new Dr. ASAP! I wish you so much luck, and am praying for you and her to have strength!

[mrtmeo]

This is horrible. I wish I could yell at her Dr.'s for you. Sounds like she needs treatment NOW, not later. Get a new Dr. ASAP! I wish you so much luck, and am praying for you and her to have strength!

Thank you tiger.
She has already had the rituximab and am waiting for the antibodies to go down, but the internal bleed makes her days miserable.
I am working on finding a way to get them to find the bleeder and stop it.
If the vasculitis is causing it, I would think it would be like a flare and only bleed on and off.

[drz]

Finding a bleeding source in lungs or kidneys can be very difficult. They never did find any hot spot for me but kept me on blood transfusions. After a high number of those they said they would go to Epogen shots if I went below 10 again. After awhile they started giving me transfusions before getting the lab results if i told them I was getting too low cause i knew and recognized the signs and symptoms of when my HG was down in single digits. Then they used the lab results to tell if needed another unit too. I have no idea of how many i actually had but remember I had two units just for a three hour ride to a bigger hospital where they had some experience treating Wegs. I guess too many transfusions can result in an iron overload or something bad for one's health.

I don't know why but the threat of those shots seemed to scare me enough to stop my bleeding and the need for any more blood transfusions. It took a long time but after a couple years my HG got back into normal range and has remained there.

initially I had RTX, CTX IV and numerous plasma exchanges plus oral CTX before the bleeding seemed to slow down enough after a few weeks to where i could get by with weekly blood transfusions. But it took several months before it stopped altogether and my lungs sounded clear again.

Recovery can be slow process but generally with proper treatment most people do improve substantially over time. I think the waiting is harder on the caring family than the patient too. Best wishes for improved health.

[mrtmeo]

Hi Drz,
That is all really good info and helps me see how this disease maybe the culprit, but she does have an ulcer and barrett's esophagus.
The nodules in my mom's lungs could be causing some bleeding too, but no real way to find out.
I'm sure glad your anemia resolved because the quality of life below a hemoglobin of 10 is horrible.
I always have to wait until her hemoglobin is <8 before they would give her transfusions.
Fortuneatly, the dr put her on weekly Epogen shots where they test your hemoglobin levels weekly and if you are <11, they give you a shot.
I think this should help my mom get better instead of worse.

Her creatinine had gone down to 1.8 before she had to have another blood transfusion which caused her creatinine to back to 2.2.
If only drs could get a handle on the processes for proper protocol for this disease so that the patient can get the best results.
With my mom, it is has been 1 step forward and 2 steps back.

[drz]

I found i couldn't really function with my HG levels under 9. I was cognitively fuzzy and physically exhausted. The limit they decided for starting epogen shots would be anything under 10 which was the same guide for more transfusions. I usually felt much better whenever my HG was in double digits. One thing i found ironic back then was all the blood draws they did to check my anemia was also contributing to it. My creatnine levels never really got back to normal range due to my kidney damage but have remained stable in the 1.3-1.8 range so doctors say not to be concerned over it.

[mrtmeo]

I found i couldn't really function with my HG levels under 9. I was cognitively fuzzy and physically exhausted. The limit they decided for starting epogen shots would be anything under 10 which was the same guide for more transfusions. I usually felt much better whenever my HG was in double digits. One thing i found ironic back then was all the blood draws they did to check my anemia was also contributing to it. My creatnine levels never really got back to normal range due to my kidney damage but have remained stable in the 1.3-1.8 range so doctors say not to be concerned over it.

Hi Drz,
Yes, my mom is cognitively out of it below 11 hemoglobin too.
When she would get 2 pints of blood, they would keep her at the hospital for a week and do blood tests daily, so they would take back half the blood they gave her.
The only thing I found to send erythropoeitin to the bone marrow was high protein diet.
This has been proven in mice.
However, the high protein stresses the kidneys.
There is another study with mice that a ketogenic diet reverses kidney damage due to type 1 and 2 diabetes.
They used 5% carbs, 8% protein and 87% fat.
I am working on doing this diet with my mom, but she needs a little more protein than 24gms per day.

[JeanMarie]

Gee, I thought epogen wasn't to be used unless the hgb fell blow 10? Its not the safest drug (but then none of them are) Have you read EPOGEN® treatment for patients with anemia due to chronic kidney disease (CKD) | EPOGEN® (epoetin alfa) (http://www.epogen.com/)

[mrtmeo]

Gee, I thought epogen wasn't to be used unless the hgb fell blow 10? Its not the safest drug (but then none of them are) Have you read EPOGEN® treatment for patients with anemia due to chronic kidney disease (CKD) | EPOGEN® (epoetin alfa) (http://www.epogen.com/)

Hi JM,
If you are not in end stage renal failure, they will only give u epogen if your hmg goes below 10.
My mom's hmg went below 10 when her epogen wore off the nephrologist didn't give her anymore.
My mom's hmg went to 7.3 and she needed blood again and then, the nephrologist decided to give her the epogen on a regular basis.
They test you weekly and if your hmg is <11, they will give u epogen.

My mom has some kind of internal bleed and perhaps, an upper GI bleed that is causing her the blood loss.
She is also, waiting to reach remission from her induction therapy of Rituxan and is not on an immunosuppressant for maintenance.
She is almost 3 months from her first infusion, so hopefully, her anca antibody's will start lowering and the bleeding stops.

[mrtmeo]

Update:
I couldn't believe it but my mom's creatinine went from 2.2 last week to 1.8 this week and she is still on the ARB for blocking protein.
When they first gave her the ARB, her creatinine went from 1.9 to 2.2 at its worst, so if she stopped the ARB, her creatinine should improve further.
Unfortunately, she is still dumping too much protein and will need to stay on it until that improves.

The epogen finally has her hemoglobin up to 11.1 and they check her for an epogen shot every week.
If her hemoglobin is below 11, they give her a shot.
Anemia really seems to effect the kidneys in a bad way.

I have her on a low carb, minimum protein ketogenic type diet and this has improved her bun, blood sugar and all the swelling in the feet is gone since this diet.