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Old Sun Aug 10, 2014, 12:38 AM
JayJay JayJay is offline
Join Date: Aug 2014
Location: nokomis fl
Posts: 1
Need info

I am trying to get information about my dad, and the doctors are of no help. He was diagnoised about a year ago. He is 81 yrs old. His red blood count is 10.3. The doctor does.his blood work every 2 months. The doctor saw him in May and told him he would see him again in Feb. He has NO energy, gets dizzy alot, doesnt go out the house very seldom, and is completely drained.
How low does his red blood cells.have to be, in ordered for them to give him a blood transfusion? Also how long is he able to go like this? He feels so bad that he always talks about dying and doesnt think it can get worse, but what I have read, it can
Please help
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Old Sun Aug 10, 2014, 01:33 AM
Heather8773 Heather8773 is offline
Join Date: Jan 2013
Location: Houston, TX
Posts: 239
Hi Janet
If his hgb is around 10 they may not be concerned about transfusing. Everyone has a number that is specific to them but I dont know manny that transfuse at 10. Ex my husband normally would transfuse at 6 but that was actually lower then his drs were happy w. I think i see a lot of 7-8 hgb transfusion.
BUT that is a long time between blood test for your dad. Possibly his counts change or he is having a hard time w his new diagnoses and maybe both together is making him feel worse? What was his diagnoses he received if you don't mind.
If you can talk him into it it's never a bad idea to seek a second opionion listing all the symptoms you mentioned by a very experienced hematologist
Heather, wife of Ronald age 31; dx PNH 2012; Dx VSAA 2013; previously on eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets.
Now -pentam,vorconizole,valtrex, valcyte, actigall, multivitamin, Pepcid , prograf, magnesium.
10/10 MUD 10/10/13
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Old Thu Aug 14, 2014, 12:21 AM
Caregive Caregive is offline
Join Date: Nov 2013
Location: USA
Posts: 61
Jay, I have had the feeling my husband's doctor dismisses him as being old so it doesn't matter. Not that bad but we feel it sort of when we ask too many questions. Anyway, let your husband know that there are many other people with his illness and each of us has it differently. When my husband's red blood cells are around 8, he feels lower and they do a transfusion of 2 units. I let him decide when it's time to do it.

And we asked for a second opinion and we were refered to Seattle Cancer Care Alliance. We were there in December and slight changes in his regimen. We will be sent there again in coming months in case there is something new for him.

We also attended the AAMDS meeting there a couple of months ago where the great minds researching MDS spoke and we had opportunities to meet others with MDS. A very worthwhile day. These all day meetings are held around the country so check that for more info. Marrowforums is part of AAMDS. At some point I will also call and ask to talk to a volunteer for more info.

Keep reading. It helps. And speak up here. People are very helpful.
Caregiver for husband
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