Definition of transfusion dependent

[lindajo]

What is the definition of transfusion dependent. When I was labeled that it was because I had had 12 units transfusions. They expected that I would continue needing transfused but the need continued to decrease. I haven’t had a transfusion since 1999 but I also let my counts get below 8 now before I get one. It use to be 9hmg.

Has the definition changed since 1991. It seems everything else has. What were you told the definition was? Does anyone know where to find the doctor code for it?

[John in GR]

To my understanding, a person is transfusion dependent if he needs and receives transfusions on a regular basis to maintain a level of functioning that is acceptable to him.

John

[Suzanne]

If you haven’t had a tranfusion since 1999 you sure are not “dependent” on them! If you had 12 units they must have replaced just about all of your blood-maybe we should all try that! I am really glad that that whatever unusual thing has gone on in your body has kept you stable for so long. Again it is really hard for them to pin down teatment because we are all so different. I think I have mentioned that one presentation I went to said that they think eventually they will narrow out many more individual diseases.

[lindajo]

I had six units of blood my first two days. I didn’t get to 12 units until the end of the first year. I was as close to dead as I want to every get until it is time to go. Making a comeback from where I was is not something I want to try to do again.

[Jimbob]

During my second week in the hospital in Jan 2004, I waas getting 2-3 units of paked red blood, 1-2 units of platlettes, along with almost continious IV of plaasma and other liquids EVERY DAY. I was bleeding out 5-6 pints each day because of 3 cut arteries in my upper sinuses. It did not get rid of the CMML but I do believe that it was instrumental in reducing my WBC from 385k to about 20. I do not recommend it as a normal procedure.

[Kathryn]

Wow, what a journey you have had. Thank you so much for sharing it.

My father was definitely dependent. He rec’d. platelet transfusions weekly because his counts countinued to dip below 10,000. They would go up for a couple of days after the tx. and then would come right back down.

with best wishes,

Kathryn

[lindajo]

I was looking at some criteria for clinical studies and one of them defined transfusion dependent as not being able to maintain a hematocrit of >25 without being transfused. I think the definition changes from time to time and what we think of as being dependent isn’t the same as how doctors and researchers define it.

[uno grasshopper]

Hi Lindajo:

Thanks for giving us more detail about your condition. Does make it more clear that your condition is “not” what we would consider the typical transfusion dependent scenario. It’s common for some transfusion dependent people to need 2 units of reds every 3 to 4 weeks. (I used 86 units of reds in 1 1/2 years). I like to look out for success stories, but have to be sure to stay clear-eyed about it. If you don’t mind my asking, were any of your other counts affected, too? I.e. whites or platelets? And if so, have they gotten better or worse through time?

Thanks, and take care!

[uno grasshopper]

Hi Lindajo:

Thanks for giving us more detail about your condition. Does make it more clear that your condition is “not” what we would consider the typical transfusion dependent scenario. It’s common for some transfusion dependent people to need 2 units of reds every 3 to 4 weeks. (I used 86 units of reds in 1 1/2 years). I like to look out for success stories (which yours certainly is since your hgb has improved and you haven’t needed any further transfusions!), but I have to be sure to stay clear-eyed about it and keep in mind that we all improve at different rates and degrees. If you don’t mind my asking, were any of your other counts affected, too? I.e. whites or platelets? And if so, have they gotten better or worse through time?

Thanks, and take care!

Marla

[uno grasshopper]

Oop, very strange double posting. My appologies, heh. Don’t know how to remove the first! Ha! First time trying post refused with message that disk was full, so re-did it. . .

Marla

[lindajo]

I tried to respond to this topic and it went somewhere else. I’ll try again.

My red cells, whitecells, hemoglobin,hematocrit, Mean Cell Volume(MCV), MCH and Mean Platelet Volume(MPV) are all always outside the normal limits. My platelets are the only thing that stays in the normal range. Rght now my ferritin level is also high in the 400-600 range. We don’t know why and are still trying to figure that one out. My last transfusion was in 1999 and I don’t eat anything with a significant source of iron.

It is confusing to me to read others counts because men and women have slightly different normal values. I have also noticed that different labs have different ranges of what they consider normal.

[Author]

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