Quote:
Originally Posted by Neil Cuadra
Matthew,
Is your mother basically OK with these routine transfusions, and is she having little or no trouble from symptoms of low counts?
Or is her quality of life poor at the moment?
I'm asking because I'd imagine that this weighs into your decision about staying in this holding pattern for more months versus giving Campath a try.
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Thank you for responding. This is very kind of you.
She feels fine overall - she just gets pretty tired when she drops under 7.5. She functions very well in the 8's and even high 7's. It's shocking, but her doctor said it's because her body adapted very well to low hemoglobin counts. But, she said that this doesn't happen with every person. If my mother is in the 9's, she says it doesn't feel that different than 8. Only when she was in the 10's a few times did she notice somewhat of a difference. Again, the doctor said that low hemoglobin is felt differently from person to person.
I must say that she is tired of getting platelet transfusion every week because she goes right back to where she was a few days later. We are going to suggest only getting platelets when she goes under 8. This is what Dr. Young proposes. People live with platelets under 10 for years and years with ITP, but there is always a risk of internal bleeding from blows to the body, etc. You just have to learn to live with risk. By the way, she no longer has physical symptoms of low platelets, either, as her body has gotten used to the super low counts.
My mother wants to wait several more months because Dr. Young says that things can still change because my mother has had such volatile counts the past several months, on top of the high 1200 neutrophil count for 4 months (proof of a response to ATG, although the neutrophils are now back at 500-600 ) . He's had people who respond fully or partially after 2 years . But, if her quality of life starts to go down hill, then we will not sit it out another year.
Thanks again for your concern. So very kind of you.
Take good care.