Mother just diagnosed with ESRF!

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couchtater
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Date Joined Jul 2009
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   Posted 5/1/2010 12:44 PM (GMT -7)   
My mother just got diagnosed with ESRF (end stage renal failure). My brother has had it for 8 yrs now.
The doctor told her she's at 27% kidney function.

She hadn't been put on dialysis yet.

The kidney doctor sent her to a hemotologist the other day and he wants to start her on a type of chemotherapy, called Procrit. (Her WBC is low.) Also, they want to do a bone marrow test on her.

She's looked at the cost of them after insurance and it will cost her $300 a month. She can't afford them, neither can any of her children help her.



What I want to know is, can she get some extra help to get the shots?



Someone once mentioned getting a social worker through the dialysis clinic to be a liason with the KF, but she's not on dialysis yet.



Can she still get the social worker even if she's not on dialysis?



Joy

aimsgirl16
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   Posted 5/1/2010 6:06 PM (GMT -7)   
Hey couchtater! Sorry to hear about your mother! What type of medication are they going to use to help the renal disease? You mentioned procrit, that is commanly used in patients with ESRD to help boost their red blood cells. It generally is low on side effects and will help you feel better. I wouldnt necessarily call it a chemotherapy drug, it is commonly used in patient who are treated with chemo to help with their blood counts. So it is chemo but not really,(it doesnt treat cancer, it helps the side effects from the heavy chemo that does treat cancer) if that makes any since??? It will most likely help her feel better. I am going to use procrit if we can ever get my RBC over 9. So far no luck


Yes, you can get a social worker without being on dialysis, but I am not sure about through a dialysis clinic. If her kidney function is 27 %, she most likely has awhile before dialysis. The national kidney foundation recommends dialysis being started when kidney funtion drops below 15% but most doctors will judge when to start by how you feel. I know several people that didnt start dialysis until they were down to 10 adn 7% function. I was assigned a social worker when I was in the hospital with renal failure and 2 year later, they still call and check on me. Fortunatly we turned things around with 1000 mg of solu medrol for 3 days and then massive oral doses (still off and on) and heavy doses of immunosuppresants.



Do they know what has caused the kidney failure? Are they going to do a kidney biopsy? What other questions do you have???

couchtater
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Date Joined Jul 2009
Total Posts : 14414
   Posted 5/3/2010 1:49 PM (GMT -7)   
She's diabetic. They said something about a creatine build up in her blood.????
She's still undergoing several blood tests. They haven't given her any medications for it yet. The hemotologist said the shots were a type of chemo. That scared us. That said she had a low WBC and a low RBC, too.

My brother was born with his kidney disease, but it didn't get serious until he got Ecoli eight years ago. It nearly killed him.

I wonder where she needs to go to get a social worker to help her? She's on medicare and private insurance right now.

Joy

aimsgirl16
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Total Posts : 1469
   Posted 5/3/2010 2:10 PM (GMT -7)   
I would call her private insurance, that is where my social worker is from! Trust me, the procrit will help her feel better! With her having low red blood cells, she probably has several symptoms that she hasn't really even thought were symptoms. I am not sure if the doc told your or not but since she has a low white blood count she needs to be extra cautious about avoiding germs ar anything that could make her sick! If her WBC is under 2, I would recommend her wearing a mask when she goes out in public to help avoid getting a cold/infection. Keep us updated on how your mother is doing!!! Hope you can find a social worker soon!!!

couchtater
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Date Joined Jul 2009
Total Posts : 14414
   Posted 5/3/2010 6:08 PM (GMT -7)   
Thank you. I told her your responses and she ran off to check her numbers....
WBC 2.9
RBC 2.66
HGB 9.7
HCT 29.4
MCV 110
MCH 38.8
RDW 16.6
MPV 6.5
PLATLETS 186
LYMPHOCYTES 1.1
LYMPHOCYTE% 34.7

Does any of this make any sense to you?

She does complain of muscle spasms in her legs, dizzy spells, and blood pressure dropping.
Are these common complains?

Joy

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1469
   Posted 5/5/2010 1:43 PM (GMT -7)   
OH wow, deffinatly with her WBC being that low, please use extra caution! Is the dizzy spells different feeling from when her sugar drops to low? Does she check the blood sugar when she has these spells? When I was in kidney failure, I had the opposite effect with my Blood Pressure, it was always redicoulsly high! I do have a lot of muscle spasms, I never really put that with anything related to Kidneys, I just figured it was something Lupus related. I will have to ask my nephrologist about that when I see him next week.

When does she go back to see the doc?

couchtater
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Date Joined Jul 2009
Total Posts : 14414
   Posted 5/5/2010 5:38 PM (GMT -7)   
She checks her blood pressure and sugar everytime it happens to her. Most of the time it's normal.

She see her in two weeks. I think they want to see if the B-12 shots and the iron pills help her any. The next step is a bone marrow test for her. :(

Her skin is so thin and bruises easy. She can walk by something sticking out, bump it, and wind up with a large spot bleeding under her skin. Her doctor jokenly said to her if he looked wrong at her she'd bruise.

Joy

couchtater
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Date Joined Jul 2009
Total Posts : 14414
   Posted 5/14/2010 2:04 PM (GMT -7)   
Mom's back from a second trip to the hemotologist.

WBC 3.9
RBC 2.54
HGB 9.6
HCT 28.9
MCV 113.4
MCH 37.6
MCHC 33.1
RDW 17.5
PLATELETS 185
MPV 6.5

He said she had lukocytopenia. Her first shot of Procrit is on Monday. $75 a shot! Her insurance is sending her $90 a month to help, but that's it. :(

She can't get on medicaid for two more years or she will lose the house. The house is life estated to me, but it has to be five years in that state before they won't touch it. We set it up only three years ago.

We're going to get in contact with a local group related with our faith (which my father happens to be on the board). They help retired ministers and their spouses with getting medication. My father hates to ask because he feels there are others worse off than them who need the money. It hurts his pride some. I told him to swallow it and go ask the others for the help.

Joy

aimsgirl16
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Date Joined Jun 2008
Total Posts : 1469
   Posted 5/14/2010 4:13 PM (GMT -7)   
Hey Joy! Have they said what is causing the leukocytopenia? Sorry to hear about the diagnosis but I am sure her doctor went over that she needed to avoid sick people, germs, and places where a ton of people are...like the subway, etc, if possible. If she does have to travel in those spots, deffinatly be prepared with masks and hand sanitizer, etc.

I would deffinatly continue to urge your mom to ask for assistance! She doesnt need to add stress about how she is going to aford her medications, that will just make her feel worse! How is she doing emotionally? How are you doing?

Oh yeah, i asked about the muscle spasms and my response was potassium being out of whack (don't remember if it was high or low) and my Vitamin D levels are incrediably low. Maybe your mom can ask to have the 25-hydroxy-vitamin D blood test ran! This will check her blood level.

couchtater
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Date Joined Jul 2009
Total Posts : 14414
   Posted 5/14/2010 5:24 PM (GMT -7)   
She's basically a homebody. She goes to church 3 times a week and grocery shopping (takes the car) once a week. Otherwise, beside doctor visits, she's home.
When I told her about your suggestion about using a mask, she said they smother her and she'd rather stay home.
She's a little depressed. When we were discussing the expenses today, she hollered out, "just let me die!" (She was smiling slightly) My father scolded her and told her he'd get the money somehow. He loves her alot. They've been married for almost 52 years.
She threw her back out yesterday and is on a strong pain killer right now.

I'm frustrated. I helped my brother out several times when his money was tight from all his health troubles. Now he's on fairly stable ground and my mom needs help. Unfortunately, I can't help because my money's tight now because of my health troubles.

I just need to vent! ;)

Joy
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