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taffylinden

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 #1 
 I want to be an organ donor when I die, and it's on my license. Several years ago, I went to donate blood and was told SLE is a pre-emptive condition, so no go. Today I checked to see if it'd keep me from donating my organs, and it won't, unless my organs are damaged. But in checking, I saw some blood donor sites are saying SLE patients CAN donate blood, and some sites say we can't.

I'd like to donate blood if it wouldn't harm the recipient. Anybody?


Baker1

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 #2 
I think part of the reason we can't donate blood is due to the meds we take. I would assume that it would be the same for the organs also but I don't know. You may have to check with a surgeon's office. I would hate to hurt someone because of all of the meds that I take. I am going to have it taken off my drivers license when I need to renew it.
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Raglet

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 #3 
I've been through the whole organ donation as my sister's organs were donated. They go into the donors health very thoroughly before accepting them for donation. So I have organ donor on my license and I totally know that my organs will only be used if they can be of use, because they don't just use any old organs. Whether I know now whether they can use my organs is not really the issue for me anyway. There are just so many variables that I only see having organ donor on my license as an offer, that may or may not be accepted. Even though my sister had listed herself as an organ donor, they still needed family permission so we could have vetoed it, but of course we didn't as it was her wish. They go through a very long list asking which bits they can use - it's quite bizarre really. But very thorough. And there are all sorts of bits that they use like the lens in the eye, and bones etc some of which may be fine in a person with lupus if there has not been excessive use of steroids. So it's a really complex process to go through.
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Tigger1219

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 #4 
I have been allowed to donate blood. I go over all my meds over the past year and they let me know.
taffylinden

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 #5 
It does seem like there are no issue with organ donation, so I haven't been worried about that since I checked. Unfortunately, my eyes won't be of use, as I already have donor corneas, and the lenses in my eyes are artificial ones due to heavy steroid use, but knock on wood, hopefully they can use everything else. They must power-wash them* or something, because none of the sites were concerned about blood.

It must vary from blood bank to blood bank? I know the Red Cross will take blood from lupus patients IF we're not on certain meds AND have had no flares in (I think) a year (Don't I wish!), but some sites say blood donation still isn't a good idea because it's not good for the lupus donor. (?!) Other sites say most blood banks won't take blood from SLE patients because they simply don't know how it might affect the recipient. And I couldn't find anything at all on the LFA site. 

And here's the funny part: a lot of them say to ask your doctor. Well, I originally asked my PCP, and he said he didn't know, to ask the blood bank! I did, and they said no. Like Baker said, I'd never want to endanger anyone else, but I would like to help others if I can.




Baker1

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 #6 
Donation of blood seems to vary from state to state. Here in Wisconsin, I was told no because they didn't know how my lupus may affect the person receiving the blood. But I'm on so many meds it's probably better that I can't.
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Diane M
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Robinj

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 #7 
" And though the Red Cross does accept donations from lupus patients, the disease must be inactive or in remission and the person must feel healthy at the time."


I think Diane is correct. Depends on the state and the patients situation.

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taffylinden

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 #8 
I'm sure you're right. I can see why it would depend on the patient's situation, but it does seem like it should be consistent. It's not like if I traveled from Washington to, say, California, I'd be any less dangerous.
Cakelady

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 #9 
When I was pregnant and had to have blood transfusions they had trouble finding blood for me because for some reason I did not have a vaccine that is given when you are a child. They had to find blood for my transfusion that also was not given that vaccine.
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Baker1

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 #10 
Wow, I wonder what would happen if I needed a transfusion now. I had all of my childhood shots, but needed a booster for the measles and couldn't get it because I'm allergic to neomycin which is an ingredient in that shot and many others, including shingles and flu vaccines.
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Diane M
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taffylinden

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 #11 
Wow, that's interesting! I wonder why you couldn't get a transfusion from someone who's had the illness or the vaccine even if you haven't. They'd have antibodies to the illness, but except for chicken pox or others where the virus stays in the body forever, they wouldn't be able to give you the virus itself. Yet another time when I miss Anthony and his superb research skills! There's GOT to be a reason. Wish I understood.

Neomycin has a half-life of 2-3 hours, and most vaccines require a wait time of days to weeks before donating blood; the flu and meningitis vaccines are exceptions, though, so I'd think it's theoretically possible that if someone got the flu vaccine and immediately donated blood, you could get trace amounts of neomycin. Might be worth asking your doc about ahead of time, Baker. Let's hope no transfusions are in your future!
Robinj

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 #12 
"I wonder why you couldn't get a transfusion from someone who's had the illness or the vaccine even if you haven't."

Maybe because our immune system will attack since the person never had the antibody to begin with and increase disease activity.

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Baker1

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 #13 
I have never needed one, but that would be something that I should talk to my doctor about. Especially since I'm on Warfarin.
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Diane M
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