Help me understand transfusions, please!

[Julie A]

About 3 years ago my mom (now 65 years old) was diagnosed with Myelodysplasia – Refractory Anemia per the pathology report. At the time, she was anemic and her hemoglobin count was primarily in the 9’s, but would fluctuate to higher levels. After the bone marrow biopsy and diagnosis of Myelodysplasia she had been getting periodic injections of Procrit for a while, and then I think they may have switched to something else. As of yesterday, her hemoglobin had dropped to 8.3, and today to 8.1, so earlier this evening they did a transfusion. She said she was getting 1 unit. Is this typical? Is it just a red blood cell transfusion that she gets? Is the hemoglobin # “the” one they watch to determine whether or not a transfusion is needed? How does this all work? Do they take any blood out, or just add new blood? Do they only match blood type – or other things as well? Does the patient normally know the blood donor or not? And, how safe is donated blood? And, is this the only (or best?) way to raise the hemoglobin once it gets to an 8? I do not know if the blood she received was irradiated/filtered, or if that is standard practice these days, or if that even matters for her since she would not be a candidate for a transplant due to her age.

She’s got some other medical issues as well – melanoma, high blood pressure, diabetes, low blood pressure when she stands/walks around, etc. She is being monitored by several specialists.

I’ve been reading lots of posts here and I do have a copy of “Myelodysplastic Syndromes” by Dr. Dunbar (20+ pages), but still seem to have confusion! Any comments or explanations would be welcomed – thanks!

[eve]

hi julie

can only speak from my dad’s experience

he always gets 2 units of blood when he needs a tx – he gets red blood when his hemoglobin is at 9 – my dad always gets irradiated filtered blood – i am not sure if that is standard practice – no blood is taken out except for the blood test needed to do a cross/match for blood type – and i think they also test for antibodies that might cause a reaction (not quite sure about that part)-my dad never knows the donor – as far as i know the blood given these days is very safe

hope this helps

eve

[covergirl]

Hi Eve,
I’m MDS-RARS, get transfusions 4-6wks, 2 units, always get irradiated, filtered, CVS negative as I am future BMtransplant candidate. I transfuse somewhere between 7 and 7.5 depending on how I feel. I do not get platelets, as I’m blessed that those are fine. Don’t know donor(s), US blood supply is probably safer that our drinking water now. Also, other than my MDS, I’m pretty much healthy.

[lindajo]

I recommend that you contact the Aplastic Anemia- Myelodysplastic Foundation and ask for a patient information packet. That is a separate organization from this one. I think their pamplets are the easiest for families and patients to understand. The web address is http://www.aplastic.org Their toll free phone number is 1-800-747-2820. Donations are always welcome but the information is free.

I have found over the 14 1/2 years that the each doctor has his or her own opinion about when a transfusion is necessary. Most that I have dealt with don’t go strictly by the numbers on the blood counts, but take into account the patient’s other conditions and the patients desire. In general I get one when my hemaglobin drops below 9. I also look to see if my hematocrit is stable or falling. If it is winter I get one sooner than if it is summer because I am exposed to more viruses and flus in the winter.

I always get irradiated and filtered blood, that is CVS negative because I am also still a candidate for a transplant.

Although family can donate blood at any time to put more blood units in the system, they don’t let me have blood that is specifically donated by family or friends. The reason that they don’t let family donate is because it increases the likelihood that I will reject a transplant. The reason they don’t take blood from friends directly for me is that they believe people are more likely to lie about their sexual history if they want to help a friend.

Any blood that is donated on your behalf helps to put more blood in the bank so there is unrelated donor blood for you.

All blood is screened for HIV/AIDS and hepatitis. Any Red Cross or blood bank can tell you what else the blood is screened for.

A transfusion is the fastest and possibly only way to raise the blood counts. I have taken numerous vitamin supplements over the years. It has kept me from dropping my counts and needing frequent transfusions, but once they get below nine the supplements haven’t been able to bring the counts back up.

Your mom will probably feel much better after she gets the blood, but I am surprised she is only getting one unit. I would ask the doctor why? Good Luck.

[ww5]

Hi Julie,

My husband (70) was recently diagnosed with RARS int. -1 as well. He has been getting Tx every 3-4 weeks. Low hemoglobin levels dramatically affect his breathing (he has asthma and COPD) which makes his heart overwork. There are not enought red blood cells to carry the oxygen. He gets 2 pints each time. He has also started on procrit and neupogen shots and the frequency between Tx is getting longer.

He gets his blood tested every 2 weeks, although his breathing tells him it’s time. He also wears the plastic wristband so that he doesn’t have to have his blood typed/cross-matched each time.

If you can, go with your Mom on one of her doctor’s visits. Take your questions and find out the answers and what the options are and what the doctor recommends moving forward. Does your Mom have a good doctor that coordinates all the input from the specialists and treats your Mom as a whole person–not each specific condition? When my husband had prostate cancer in 1990, we were able to handle it only after we knew what we were dealing with–that way he made choices, they weren’t made for him. It really makes a difference.

Judy

[Julie A]

Thanks for the responses so far – all of the information is helpful. I will contact the Aplastic Anemia- Myelodysplastic Foundation and ask for a patient information packet.

After my mom’s transfusion last night, her hemoglobin count went up to 10.3 and she felt better before the transfusion was even complete. I found it interesting that it could change how she felt so quickly, but was very happy about that!

I’m also wondering what is the difference between the hemoglobin count and the hematocrit count? If I understand this correctly I think the hemoglobin refers to the red blood cells, but I’m not sure how the hematocrit count fits in. Her doctor seems to focus on the hemoglobin number.

Thanks again for comments! It really helps to understand things better.

[Neil]

Hi Julie,
Hematocrit is the measure of the total volume of Red Blood Cells relative to the total volume of whole blood in a sample. It is a unitless proportion (.43) or with whole volumes (.43L/L). Small and older labs measure it by spinning the sample in a tube and measuring the length of RBCs in the column. Larger labs use computers that measure the volume individually of each of thousands of red cells in a measured volume of whole blood and add them up.
Hemoglobin is the red cell protein/iron in the blood that transports oxygen to from the lungs to cells and carbon dioxide from the cells to the lungs.
Most people get a tx when their HGB reaches 8.0.
But there are many people who need a tx at higher levels. The threshold for tx varies from person to person. Some can tolerate lower levels (6.0 range) while others get wiprd out in the 10s.
Do not let them use the probability of a SCT or BMT as the criteria for irradiated/filtered blood!
I/F blood will prevent several downstream problems matching blood for her. It prevents antibodies from developing and eliminates the difficulty getting the appropriate blood over time. There are patients who have been getting tx for 15 or more years and lead very productive lives. If it becomes an issue demand I/F blood!
Most hematologists would not consider non I/F blood and it is becoming the standard in most hospitals. There are some docs that will attempt to pass off the non I/F on elderly patients and some with very severe conditions for economic reasons.
Procrit can help boost Red cells. It is a synthetic erythropoietin ( a substance produced in the kidneys that triggers the bone marrow to produce red cells). If her EPO count is normal to high it may or may not work. It also requires at least normal iron levels to function. Most hemos will check EPO and iron levels before starting a patient on Procrit. If Procrit does not work or if it works for a period and then seems to become less effective, docs will switch to Aranesp (darbapoietin). Similar to Procrit but lasts longer so the interval between shots is spread out.
Medicare stipulates a patient must have a hematocrit of 37.0 or lower to qualify for Medicare benefits for Procrit.
I have a couple of good articles on MDS. I you would like them I can e-mail them. Just need your address.
Neil

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