Transfusion Question .....

[annmonster]

Hi Everyone....

So, my hemoglobin levels usually get down to 6.9 and my old school , 71 year old Dr. gives me ONE unit of blood . He says that it decreases the risks of transfusion ( including iron build-up ), and that red blood cells die off in 2 weeks anyway, so that the effect is the same ........ do you guys agree ? dis-agree ?? After I'm transfused I hover @ 8.0 .......

[donna j.]

Hi Annm,

I am relatively new to all this too, got diagnosed end of July. I am sure there are others on this site who know a lot more, but my experience is when I hit 8, and I usually am between 8.2-9, my dr. sends me for 2 units. I don't know how long the blood stays in your system, good question. But why go through the type and cross process again and expose yourself to the germs of the hospital, or center?

I have had 3 or 4 to date and have asked if I need to be concerned about my iron and ferritan levels, etc. and he scoffs, and says no need to worry at this point. I just read in an alert I got from MDS Beacon, that ferritan levels affect the outcome of BMT, which makes me curious.

donna j.

[Marlene]

I disagree with that logic. First of all, a 6.9 HGB is pretty low but if you function well on that, then that's ok. Most have a HGB threshold of 8 - 8.3. Once you hit that, you get transfused. What is your interval between red cell transfusions. Much depends on how much your bone marrow is producing.

Red cells live for 120 days. So I would venture to say that a portion of those transfused cells live longer than two weeks. It's also good to get the freshest blood product you can versus ones that are getting ready to expire within a few days.

John would get transfused at 8 and would get two units. The only time he got more than two was when his HGB was very low at 5.5.

[bebop]

like others have said 8 or under you should be getting at least 2 units. is your dr an mds expert? if not maybe you need to find one. I think everyone deserves the very best in care.

[donna j.]

Hi Marlene,

I'm not quite sure which logic you disagree with. Please clarify.

thanks,

Donna

[annmonster]

I usually am transfused every 14 days or so ..... have had a total of 5 transfusions. ......

[Birgitta-A]

Hi Annm,
As Marlene wrote normal red blood cells live about 120 days - ours and especially our red blood cells from transfusions don't live that long. Many patients have hemolysis - the red blood cells break much too soon - and their red blood cells live much shorter time than 120 days.

I always look at the bloodbag to see how old it is - blood that is 11 days or less is supposed to be best.

It is not common to give one unit of blood when you have MDS but that can be because it is expensive to test the blood units and to give the blood - you have to pay the nurses. Most clinics prefer to give two units with longer intervals.

Good that you counts the units of blood that you get. You should ask about your ferritin (iron) level too. There are patients who have quite high ferritin level at dx before transfusions due to hemolysis.

Many doctors start giving the patients drugs to prevent iron overload after about 25 units of blood but they look at the liver tests too. The liver don't like too much iron and the liver tests can increase. It take years before a high ferritin level will really damage the liver, heart and other organs so when the patient is very ill they never give drugs for iron overload.

Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006. Transfusion dependent at dx with HGB 70. Have received 142 units of red blood cells. Treated with Desferal in connection with transfusions after 40 units of blood, Ferriprox (gave low white blood cells) and low dose of Exjade. Started with Thalidomide June 2010 with good result. Last transfusion Sept 2010. HGB 134, WBCs 4.3, platelets 84 and ferritin 979.

[Marlene]

Hi Donna,

I feel it's necessary to transfuse to a level where you have a good quality of life. If you feel good below 8, then that level works for you. Most don't though so goal is to transfuse with the intent to get above 8. Low HGB is a strain on the heart. So if someone is below 8, one unit is not going to bump them up high enough. Once you get someone up to 9 or 10, then manage transfusions with a goal to transfuse at 8, you may be able to get away with doing just one unit. When John was getting red cells every two week, he would get two units. When his interval went to 3 weeks, we backed down to one unit. This shortened his transfusion interval but in the long run, limited the number of red cell units until he became completely transfusion independent.

Again, red cells, even transfused ones live longer than two week. Some do die off soon after being transfused.

All blood products should be irradiated and leukocyte reduced especially for those who may get a transplant.

[riccd2001]

I agree with importance of donation/expiry date. But also the variation of actual volume amount in a "unit" which for me has ranged from 238ml to 353ml (a difference of 48 per cent is considerable IMO).

Another consideration is that as the number of transfusions and antigens increase, the cross/match process takes longer to do and becomes more difficult for the lab to find a donor that is compatible. For me fresh blood is preferred but compatible match is essential regardless of expiry date.

[Lbrown]

I'm keeping my level higher these days. I've made it into the 120s. I can't function at work when my HGB is 80. Also, the units have been getting smaller all summer - or so it seems. So now I am lucky if I get 500 ml where it used to be up to 700 ml in 2 units. So every so often I have to ask for a 3rd unit. My HGB drops about 27 - 35 points in 2 weeks.

I was putting up with having HGB in the 70s, but I would be useless for the 2nd week waiting for the next tfx. The nurse finally said if I feel that bad that is no quality of life.

I should add - if I was new to all this, I would probably just go with the recommended transfusion levels. I've been at this a couple years (way too long) and was just tired of dragging myself around. You do get more used to low counts, and if you're not having problems with such a low count, then great. It is common to get 2 units of blood though.

Deb

[Greg H]

Hi All!

Like most everyone else who has commented, I get two units if I dip below 8.0, which reliably happens every other week, at this point. On the rare occasions when I've dipped below 6.5 (usually the result of delaying transfusion because of an overly-optimistic CBC) I wind up getting three units.

There's always an expiration date on my units (along with a lot of other relevant info), but never anything about volume, which seems odd to me.

I have considered suggesting 9.0 as the cost rather than 8.0, just because it would likely improve my energy levels, but will likely wait on that until I see if I'm accepted in NIH's Danazol trial and that helps me reduce my transfusion interval.

I've had 55 units and am not currently doing anything for chelation. After I get a ferritin reading at NIH in a couple of weeks, I plan to try wheatgrass again to see if I can lower my iron without resorting to Exjade. I want to wait for the ferritin reading so I have a benchmark against which to measure progress.

Take care!

Greg