Neph wants to send my mom home to starve to death

**mrtmeo** · 08-31-2014, 09:13 AM

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** · 08-31-2014, 01:32 PM

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** · 08-31-2014, 02:26 PM

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** · 09-01-2014, 01:58 AM

Originally Posted by Debra 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

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** · 09-04-2014, 05:06 AM

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** · 09-07-2014, 08:16 AM

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** · 09-07-2014, 11:22 AM

Originally Posted by 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?

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** · 09-09-2014, 07:59 AM

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.