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Mom is pretty sick :( **8/14 UPDATE**

Posted by on Aug. 4, 2012 at 9:28 AM
  • 45 Replies

I haven't been around much because my mom has been really sick. She is 65 years old, last October she had a double mastectomy and about a month ago she was diagnosed with cerriosis(sp) due to diabetes and fatty liver. About 3 weeks ago we had to take her to the hospital because her hemoglobin level was 6. They gave her 5 pints of blood and she started feeling a lot better, so she got sent home...with no explination of why it was so low. Fast forward to Monday...my DD and i went over to visit. When we went in it was shocking...she was like a zombie...very ashen and lithargic(sp) she wouldn't even open her eyes...and she would talk at a whisper. I begged her to let me take her to the doctor and she kept telling me.she would be fine and she didn't want to go. We left there around 9. By 11 my dad called crying saying that she wouldn't respond and she was running a fever. So we headed for the hospital. Her hemoglobin was 6 again! In 3 days they have given her 3 more pints of blood and 6 different kinds of antibiotics IV. On Thursday it was back up to 11...and her temperature was 98...and by Friday she was back down to 9 and her temperature was 99.7...and the doctors want to send her home AGAIN with no explination. We (me along with my brothers) pitched a fit...so they did a bone marrow tap yesterday afternoon, but are still saying she is going home today. We all know if she goes home that she will either die or we will be back at the hospital, or both. We are at a loss for what to do...they wont give us any explination of what is causing this...its like they just don't care what's causing it, just about getting her hemoglobin up and send her home. What can we do? What would you do?

**UPDATE**

They did a bone marrow biopsy on friday. We are waiting for the results of that. As of right now she is still in the hospital, her blood lever has stablized for now at 9. She still has a low grade fever 99.2, but they are talking about sending her home today. We have made a plan, that if they do send her home that we will let her stay home but as soon as her temperature gets 100 (and we know it will, if history is any indication), we are going to take her to the medical center downtown. They still don't know the cause of the low blood levels, we are hoping that the bone marrow biopsy will have the answer. All we can do is sit,m wait and pray for her. Thank you all for you support and prayers

**UPDATE**8/14

We got the results of the bone marrow biopsy. Things are pretty grim :( The results show that she has Myelofibrosis. Which is a 'scarring ' of the bone marrow tissue, her bone marrow can no longer produce red blood cells. She is not a candidate for a bone marrow transplant, and some of the other treatments she can't do. They are going to try some different, experimental type medications on her, and hopefully they will help with the pain and general discomfort. The doctors are not sure how long she will survive, but things do not look good right now. Please continue to pray for her.

by on Aug. 4, 2012 at 9:28 AM
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Replies (1-10):
suzeebloch
by Ronna on Aug. 4, 2012 at 9:55 AM

have you been able to talk to her doctor?  Or are you just relying on the "professionals" in the emergency room?  If you haven't spoken to her doctor, that's the first thing I'd do.

I am so sorry to hear about your mom though.  That is so scary. My parents have been relatively healthy, but now at 79 and 80 are starting to slow down and beginning to have problems.  Dad shuffles when he walks, due to a "bone spur" he says his doc says he has, plus his arms/hands go numb when he drives.  He says his feet are numb too and that's why he shuffles - to avoid tripping.  It seems his doctor isn't too worried about these symptoms and I want to get Dad scheduled with a specialist but he's concerned about the $$ he's gonna spend and says no.   Mom has been losing weight and seems a lot skinnier each time I see her.  She says she just has no appetite.  I told her she should drink a can of Ensure at least twice a day but I don't think she's started doing that.  I'm gonna buy a six-pack and take it to her.  I know it's just a matter of time before my parents start needing ER visits, etc, too.   The whole thought scares me.

Thoughts and prayers for you and your family!!  

hugss
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by on Aug. 4, 2012 at 10:02 AM

Hugs to you hon,
so sorry to hear this,
I agree that you need to speak with the doctor & find out what is casuing this .. it's not normal.
Something has to be causing this.   If I were in your shoes I would suggest to the doctor to run tests *until* they find what's causing this.
PLease keep us updated!
Tons of loving thoughts & prayers :)

nana9106
by Darlene on Aug. 4, 2012 at 10:10 AM
When we took her Monday they admitted her. We have asked every doctor... her primary, the gastrointestinal, the oncologist and the pathologist...nobody has any clue...and they don't seem interested in finding out. We have had some guesses...maybe its her spleen, Maybe its her bone marrow or maybe she is loosing blood internally. The doctors say OK so lets send her home...we got her levels up. But not treatment for the cause

Quoting suzeebloch:

have you been able to talk to her doctor?  Or are you just relying on the "professionals" in the emergency room?  If you haven't spoken to her doctor, that's the first thing I'd do.

I am so sorry to hear about your mom though.  That is so scary. My parents have been relatively healthy, but now at 79 and 80 are starting to slow down and beginning to have problems.  Dad shuffles when he walks, due to a "bone spur" he says his doc says he has, plus his arms/hands go numb when he drives.  He says his feet are numb too and that's why he shuffles - to avoid tripping.  It seems his doctor isn't too worried about these symptoms and I want to get Dad scheduled with a specialist but he's concerned about the $$ he's gonna spend and says no.   Mom has been losing weight and seems a lot skinnier each time I see her.  She says she just has no appetite.  I told her she should drink a can of Ensure at least twice a day but I don't think she's started doing that.  I'm gonna buy a six-pack and take it to her.  I know it's just a matter of time before my parents start needing ER visits, etc, too.   The whole thought scares me.

Thoughts and prayers for you and your family!!  

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nana9106
by Darlene on Aug. 4, 2012 at 10:12 AM
The problem is, now that they have her levels up (not stable) they don't want to keep her. It is heartbreaking to see her like this.

Quoting hugss:

Hugs to you hon,
so sorry to hear this,
I agree that you need to speak with the doctor & find out what is casuing this .. it's not normal.
Something has to be causing this.   If I were in your shoes I would suggest to the doctor to run tests *until* they find what's causing this.
PLease keep us updated!
Tons of loving thoughts & prayers :)

Posted on CafeMom Mobile
hugss
Report
Take some *Time Out* for You, Join our Friendly/Supportive group :)
Yesterday at 11:19 PM
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Need some Time for You? Feeling stressed? Kick back, relax & take a break. If you're a woman who just wants to have fun, here's the place :)

by on Aug. 4, 2012 at 10:14 AM

Can't you insist they find out *why* her levels keep going up & down like that?
I can only imagine how tough this is for you ..
Hugs hon :)

Quoting nana9106:

The problem is, now that they have her levels up (not stable) they don't want to keep her. It is heartbreaking to see her like this.

Quoting hugss:

Hugs to you hon,
so sorry to hear this,
I agree that you need to speak with the doctor & find out what is casuing this .. it's not normal.
Something has to be causing this.   If I were in your shoes I would suggest to the doctor to run tests *until* they find what's causing this.
PLease keep us updated!
Tons of loving thoughts & prayers :)


PinkButterfly66
by on Aug. 4, 2012 at 10:15 AM

You need to take her to a hematologist.   I'm not a medical professionial but, it could be aplastic anemia.  It's possible that her kidneys' aren't producing enough erythropoietin.  Erythopoietin is a hormone produced by the kidneys and it is responsible for producing hemaglobin for the body.  This can be a side effect of chemotherapy.  She can get injections of synthetic erythopoietin to help her body produce hemoglobin.  

http://en.wikipedia.org/wiki/Erythropoietin

Why123
by Nancy on Aug. 4, 2012 at 10:16 AM

I am so sorry.

gmadiane
by on Aug. 4, 2012 at 11:18 AM

I am so sorry to hear it

mac1940
by Mary Ann on Aug. 4, 2012 at 7:47 PM

I agree that she needs to be seen by a hematologist.  That kind of anemia needs to be treated, there is a medication, Epogen, that is given by injection that helps with rebuilding red blood cells.  I would think they would be looking hard for the sources of her blood loss - doing a colonoscopy, checking for renal failure, etc.

Shellness
by on Aug. 4, 2012 at 9:44 PM

Saying prayers for your mom. Bless her heart. Even at a hemo of 9 I can hardly function!

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