Transfusion time?

[josey]

My hgb is 8.2. I have been putting off having a tx. I was hoping to be able to wait until it got down into the 7’s. Yesterday I was so exhausted all I could do was lay down all day. I hear this whooshing in my ears. I don’t want to rush into a tx if I don’t really need it, how do the rest of you know when you really need it. I think I am still in some type of denial about this, I just don’t want to be an alarmist, but I don’t want to be stupid either. Joanne

[Alice S]

Hi Joanne
The whoosing in your ears and the exhaustion is an indication that you need a tx the higher your hgb the less blood you may need i.e. 1 unit instead of two.
My mother is tx dependant from the day she was diagnosed 27 months ago, but judging by how long most people take to get to that point she probably had it for up to two years prior to diagnosis. Since she has been anemic all most all her life her Hgb was at 4 when she was hospitalized! Her body can handle the lower counts but not everyone can.
You will learn in time what your body tells you, but sometimes other factors can cause exhaustion and it may be shortlived, hot weather stops my mom in her tracks! Irrespective what her blood count is.
It helped mom to think of MDS as another adventure in her life, she visits the hospital every month, meets new people, fights with hospital staff, enjoys her chats with her hematologist and boy do we enjoy every day whether it is bad or good! I live in Sweden at the moment and she in South Africa, we are very close so it’s hard for both of us. She takes every day as it comes.
Read posts by Patti, they contain a wealth of information.
Take care.
Alice

[josey]

Alice, thank you for your advice and encouragement. I know I need to just accept that this has happened and do what needs to be done, its just hard some times. Sorry you are so far away from your mother, that must be very hard on both of you. She is very lucky to have such a loving daughter. I think once I get the first tx I will accept it as just something I have to do. I wish sometimes I had a daughter, but I was given two great sons. Its not the same as the mother/daughter bond however. I will check into that tx today. Joanne

[Karen 2112]

Hi,

When my Dad was getting transfusions, the Dr. ordered that if he was in the 70’s he would get 3 pints, 80’s 2 pints and 90’s one pint. If over 100 none required.

Kind Regards,
Karen

[jga_socal]

If you’ve had Pancytopenia and not needed a rbc tx since you were 12 you must have a mild version of whatever is causing the pancytopenia. Sorry you find yourself in a position to now get benefit from this group.
Listen to your doctors. Hopefully you have an ‘engaged’ doctor that communicates options even outside of his traditional training. Since this is not likely, be advised that there is a wealth of anecdotal evidence provided by posters here. The best of the best indicates that your diet has a direct relationship to your marrow’s ability to make the various blood cells. I’ve had some success since I started trying ‘stuff’ starting last September. In a 5 month period I attribute my experimentation with food supplements to reducing my tx needs by 30%. I’ve read other people have had success too. You can search the posts here for info on that subject.
Iron Overload is a big issue for many tx-dependent peeps. Make sure you get a ferritin serum test early on to see what your iron levels are now. Then make sure you know how much your levels are increasing as you get txs. The blood itself is very safe except for the .5gram of iron you get with every pint. At some point you may need to look into doing something to treat the IO.
I posted an article I wrote on transfusions HERE . I think this article will clear up all your doubts.

[patti]

Jim, et al,

Hate to burst bubbles here, but it’s very precarious to say, “the blood itself is safe except….” They are unable to screen for multitudes of diseases and another person on this forum died from an infection he got from a blood transfusion. So, be wise.

Josey, it sounds like you need blood. I would recommend you do not force yourself to wait until you are too low to ask for a tx. This just causes more damage to the organs and brain by getting them that much less oxygen. After 2 1/2 yrs of this my MIL has zero short term memory from repeated lack of oxygen. It’s best to transfuse as soon as you start to have symptoms of feeling low. That would be the heart beating sound in your ears, fatigue, etc. Also, ALWAYS get irradiated blood. I believe this is one of the best pieces of advice given to us in the beginning. And we also believe it is why mom was able to go so long on transfusions without becoming resistant to them. This goes for blood AND platelets. Especially platelets since one can become refractory to them. Mom has had 30+ platelet transfusions and so far, is still able to hold them. Her doctor and I both believe this is because of the irradiation.

Patti

[josey]

Thanks all of you for some great information and advice. My doctor has said we would only use irradiated blood. I went ahead and set up a transfusion of 2 units on Thursday. I was tired of being tired, and need to get past this deniel about having MDS. I went through all of this when I had Aplastic Anemia and just didn’t want to start it again. You all gave me the wake up call, slap in the face that I needed. I will be sure my doctor keeps an eye on my iron. Joanne

[jga_socal]

Patti,
“Hate to burst bubbles here, but it’s very precarious to say, “the blood itself is safe except….” They are unable to screen for multitudes of diseases and another person on this forum died from an infection he got from a blood transfusion. So, be wise.”

Is it wise to not get rbc transfusions because you fear the 1 in 200,000 chance you could get hep-c from a donor? I think the much greater danger, as you wrote later, lies with the long term damage of living with inadequate hemoglobin. The chance of dying in a car accident is far, far greater than picking up a disease from todays blood supply. Each bag of blood (check this out) has written on it ‘May contain infectious agents’. My tx nurse usually scratches out the word ‘May’ and writes ‘Does’. She is such a joker.
Jim

[patti]

Jim,

I wasn’t implying one shouldn’t get transfusions. It’s just that you stated they are “very safe” and I think it’s prudent that people understand there are risks involved – however small they might be. We were never told there was a risk of infection from the blood itself. I learned it only from this forum. Just passing on info I think people should have in the event they should need it. It’s just always good to have all the info one can have. I least I prefer that.

Patti

[Karen 2112]

Have any of you guys just internalized this? It is so awful, it is crazy we as a forum need to do something more! What can we do to make this an agenda item with top politicians? I sent out approx. 50 letters to US and Canadian officials and recieved 3 letters back. That is not acceptable. We need to do something!! Soon and fast, this is just crazy to me. We are on this forum to try to find answers, the governmnet should put in a little effort!!!!!!!

[josey]

Hey guys, nothing in this world is a 100% safe, with our low blood counts its not safe to drive a car, my platelet count is 9, or visit your snoot nosed grandchildren, my wbc is 2.3, or try to take a walk on the beach or climb stairs, my hgb is 8.2. When you have counts like ours nothing is safe, transfusions make the world a little safer for us, but there is even risk there. I for one am willing to take the risk with a tx if it will cut down all those other risks. Just my opinion. Joanne

[cthomas555]

Josey, I couldn’t agree more. The risk would be greater to not take tx when you need them, such as a heart attack. They have kept me living and breathing for quite a few years with a pretty good quality of life. I do receive irradiated and leukocyte reduced blood and I think that’s as safe as it gets.

Chris

[mogs T]

i would be interested in hearing about your nutrition suggestions to help keep the hemo up…..thanks

[mogs T]

now i wld like to understand what MDS potentially MPS means……any clarification appreciated. many thanks. i have searched and searched but am confused with so much information at once….

[celebrations]

Hi

Nutrition suggestions are not so very important, nor efficient, unfortunately. Eat healthy and well-balanced, that’s all you can do. There is no special diet or so to keep or even push up the hemoglobin level. In case you are transfusion dependant avoid food with too much iron. But also this actually does not make a real difference.

To get educated in disease implications, go to http://www.mdsbeacon.com There are a lot articles and informations in lay language.

[Author]

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