Neph wants to send my mom home to starve to death

[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)

[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)

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.