Blood transfusion

[vikasgoyal]

For how long can one live if 2 units of blood is required every 2 months? My father's concern has been low hgb, rest all counts have remained stable. His overall health condition is good and is able to do his day to day job in addition to going out everyday for 2hrs walk. He does not feel exhausted at levels of 8 at all although his skin appears pale.



Father 71, diagnosed MDS RCMD June 2011. Cytopenia RBC , HGB 8, Cytogenetics Normal. Blast cell count 2%. Currently on EPO & Danazol

[Neil Cuadra]

Vikas,

I'm glad your father is doing as well as he is, working and exercising at age 71 despite his RCMD! He can probably continue to have transfusions as needed for years, as long as his doctor keeps an eye on his iron level. If his iron stores increase over time then he may eventually need treatment for iron overload, which is the case for many transfusion-dependent patients.

There are plenty of MDS patients who have had many dozens of transfusions and some who have had hundreds of transfusions.

[ssdavi71416]

I met a man recently who just had his 250 th transfusion. He was doing very well. He had his transfusions every two weeks.

Scott

[bebop]

it seems he is doing very well with only 2 units every couple of months! My dad had them much more frequently like every week or 10 days then he became platelet dependent as well. Dad had alot of other health issues too.
If your dad is still working and feeling so well I would imagine he has quiet a while left in him! Great!

[vikasgoyal]

Thanks everyone for your quick response. He had his first transfusion of 2units on 28th June when his hgb was at 7.5. Last month's report showed the hgb to be at 8.2 and we got his CBC done today which shows a big decline from 8.2 to 7 which is really concerning. His WBC is 5600 & platelet 320,000. His overall health condition is good and he feels absolutely normal hence the doctor has suggested us to delay transfusion for some more time. Is this kind of fluctuation normal with MDS? Any suggestions of what should be the best step we should take now?

[ssdavi71416]

Just have him really listen to his body with the Hgb level around 7. My Hgb dropped fairly quick from 7 to 5.4 and I felt terrible. He sounds like he is doing really well.

Scott

[vikasgoyal]

If the hgb has reached 7 does it mean that bone marrow is not working at all?

[yaka]

My mom has been getting 2 units every two weeks for the past six months. So if you dad is doing every 2 months he sounds like can go like that for some time.

Yaka

[cathybee1]

When my husband started his transfusions a year and a half ago, he was getting them every 2 months, now he is getting them once a month. You can expect some fluctuations in how long each transfusion "lasts". I don't know how long your father has been taking Danazol, but hopefully he will respond to that, and need fewer transfusions in the long run.

[milliken2]

WOW - every 2 months - that's great. Earl is transfused at least once a week with 2 units of PRBC's and generally platelets as well. If I could get him to a 2 month level - I would be thrilled! Consider him lucky that he is able to walk and maintain a normal way of life. Earl is not able to do much of anything because he is so weak. In fact - most mornings, I have to help him out of bed. And he is only 66 years old.
Good luck to you and your Dad.
Beth

[vikasgoyal]

I am so sorry to hear that milliken2. This is such a dreadful disease. I wish your husband lot of strength and a speedy recovery