transfusions

[celebrations]

Hi everybody,
I am practically a newcomer in transfusion experiences. Yesterday I got my first one, my HGB went from 8,4 to 10,8 from morning til afternoon and TODAY I AM FEELING GREAT, compared to the weeks before….
How long will this well-feeling last? Can you help with experience reports…I mean, is there any frequency prognosis of tx ? Median efficiency or sth.? I cannot find any solid info in the net about that. Intervals between tx normally become shorter in the long run? Right ?
But there are many cases who do have a stable interval for some years ?
Is this different with every individual mds-case?

Actually I want to take a transplant into consideration, how many tx can I have “before” a SCT would become too dangerous for my organism?

What do your docs tell you about that in America?
Can you help me with information ?

Bergit

[Neil]

Hi Bergit,
Most MDS patients that are TX dependent find they will be on a 14 day routine. There are all types of exceptions but 14 days seems to be the norm.
It is very difficult to predict if the interval will become shorter in the future. there are too many variables involved between patients.
most patients get a tx when HGB is about 8.0. There are others who have to get them at higher HGB levels and there are others who can go lower.
Be absolutely certain you are getting irradiated/filtered packed red cells. This is imperative! It will prevent future problems and certainly allow a patient to have more tx over an extended period of time. It will also insure you will not have compatibility problems in the future.
Another practice most follow is to take tylenol and benedryl about an hour before the tx. They help prevent reactions to the donated blood.

[choijk]

Bergit,
My dad receives rbc’s every 2 weeks. The amount he needs depends between 1-2 units. His hgb is usually maintained somewhere in the realm of 8.0 hgb. There have been times it has dropped to a 6.0. After 35 transfusions to date, my dad’s ferritin level is approxiately 2365. Its quite scary how fast it creeps up. He is due for his 36th or 37th unit of rbc’s this Friday, depending on where his hgb stands.

In regard to the time period, the first time my dad ever received rbc’s, it was last year in 1/13/2007. At that time, his hgb was a 5.7 and he received 3 units, which probably brought him up to 8.7 hgb or so. This lasted until sometime around 03/13/07 (approx 2 months), at which point, his hgb dropped to a 6.7. SInce then he has been receiving bi-weekly blood transfusions.

Overall, my dad feels great whenever he receives transfusions. But as the daugther, I can tell when he is due for the next one because he is more easily fatigued and appear more pale.

One more thing, this is something i’ve personally noticed. I noticed that whenever my dad engages in strenuous activities, his hgb is lower than usual. I don’t know, thats just my observations, or perhaps a concidence. Just wanted to share that with you.

[hopenprayers4mom]

My mom is getting a transplant. At foxchase in philadelphia they told her that they want a patient who had fewer then 14 transfusion. so if you get 2 bags of blood that is 2 tranfusions. I think… hope that helps. god bless

[1Chris]

I receive 2 units of PRBC every four weeks since October 2005.

Christine

76 yo, Dx 11/96 MDS/RARS – Trisomy 8, Transfusion dependent since 2001.

[Kiwi Ken]

Hi Berget
I have two units every two weeks. However my energy level is never the same after a TX, always different each time. Am trying at present to try and understand why.
Ken

[Lasko745]

Bergit,

My mom is pretty much the same way Ken feels after TX…it changes every time. After the first one she went home and put up Christmas lights! The last time she was ready to go take a nap. Maybe it depends on the bag you get? Maybe your mental state play a part?

I wish you well. 🙂

[Laleigh]

My husband was dx 12/05. He had 1 trans. 12/05 and went until 11/06 before he needed another one. They are getting more frequent now. He just rec’d 2 units yesterday. Total trans to date:32. In Dec. 07 we were in Penn. visiting our dtr. ( The doc we saw in Penn was GREAT!! Wish he practiced in Texas. We just love that man. If you are ever out and about and find yourself in Monogohela Penn and are in need of an oncologist his name is DAWSON LIM. We just love him.) His hgb dropped to 9.9 without any chest pains etc. He rec’d 2 units. Then 1/28/08 his hgb dropped to 8.4 with a lot of chest pain (he is a heart pt and cardiologist said MUST have blood trans when hgb reaches 10.5) He rec’d 3 units. ON 2/18/08 his hgb was 10.2 without chest pain. Again rec’d 2 units. Yesterday hgb 9.7 no chest pain. Usually when he rec’s trans he feels better. Sometimes he is still sluggish. Doesn’t make sense to me. You would think that he would feel pepped up getting blood. I have notice when he feels like getting up and puttering around the house, he seems to “use” up the red cells and requires more freq. trans. His oncologist stated that being active has nothing to do with the red cells, but…..I see what I see and he feels what he feels, so I am not sure the oncologist is right???!!!???

[Zoe]

Laleigh,

For what it is worth, I have also noticed that my hgb is higher when I rest more, and drops when I do a lot. Maybe the hemos say that because they don’t understand the medical reason. However, I have heard others say the same thing.

Zoe

[Jimbob]

I had over 80 transfusions in less than 3 months just before my SCT mostly due to accidentally cut ateries in my upper sinus area. It did not seem to make any difference on the decision to go with the transplant. It did, of course affect the amount of iron overload, though.
Jim

[Author]

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