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Neuroblastoma survivor who is real confused...

thenamescorinne
Posts: 2
Joined: Mar 2010

Okay so i had Neuroblastoma when i was a toddler. And i am a 15 year cancer survivor. I have two questions so here it goes...

OKay so in January I became old enough to give blood for the American Cross and since i recieved numerous blood transfusions when i was a toddler i felt it was absolutely neccesary to give blood. Plus, i'm B neg so... yeah rarities! lol I told them about the cancer and I was still able to donate blood and besides feeling woosy for a couple of hours i was fine. The way i see it is: a few hours of not feeling good...or 3 kids just like me dying. I'll choose the woosyness thanks.

Anyway so today I went to go give blood again because it's been 8 weeks and this time i did it with UNYTS which is Upstate New York Transplant Services and when i told them about the Neuroblastoma and that i had been in remission for 15 years, i am not taking any medications for it and i am completely healthy they still marked me as a "permanent defferal" That's right i can't give blood to UNYTS for life. I was extremely upset. I'm only human so yeah...i cried. And took a pop and t-shirt...(oops :))

So my question is why am i turned away by one service and not by another? It seems ridiculous to not take my blood. There is absolutely nothing wrong with it. Doctors have told me it is okay and I am so frustrated because I feel helpless not being able to give back.

Any help from other survivors/donors?

Thanks
xoxo Corinne

feather80
Posts: 11
Joined: Apr 2009

Hi Corinne,

I understand you ever so well (I had blood transfusions for leukemia when I was 6). I saw your message and thought: I absolutely have to reply, I felt exactly like you a few years ago.

I live in France and in France, people who have had blood transfusions (even if it's only one), can never give their blood again. Because there could be infectious deseases that they don't know about yet and that they can't detect yet and that would be passed on if they allow us to give our blood. If a donor has an undetectable infectious disease and he gives blood, his blood goes to 2 receivors. If these 2 receivors are then allowed to give their blood, they will each transmit the infectious disease to 2 other receivors each, so 4 people all together. So in the end, 1 person will have transmitted the infection to at least 4 people and even more if they each continue to give blood.
That's why they don't allow people who have been transfused to give their blood. Or at least, that is the explanation I was given.

I am 29, I had leukemia when I was 6. I remember having lots of blood and platelet transfusions. And in my family everybody used to give blood. So for me it was more than obvious that I would give my blood when I was 18. At 18, I was in class, and a guy came to tell us about giving blood, I was ready to give my blood and when he told us that people who had been transfused couldn't give their blood, like you, I became very upset, because it was something I really had wanted to do and for many years. I had never imagined, not even one second, that I wouldn't be able to. For me it seemed like giving without loosing anything, and so it seemed like the easiest gift in the world, and I wasn't even allowed to give it (easier than giving money to someone in the street, because if you give money, you have less money, whereas if you give blood, you produce more, so you haven't lost anything).

So to answer your questions. I think that if you were turned away by one service and not the other, maybe it's because the first persone you talked to and let you give your blood, maybe he didn't know that he wasn't supposed to let you give your blood.

And then yes, it is ridiculous not to let you give your blood, because you are in perfect health, you are cured from your neuroblastoma, you have no long term side effects, if you had had an infectious disease from the blood transfusions, you would know about it by now. I agree and it's the exact same story for me (me it's even longer: the transfusions were 24 years ago!!!)
So for you and me, we know that it's completely ridiculous and that our blood is very healthy, but if you consider a large population (not just you and me), but all the people who have had blood transfusions for all the different illnesses that exist, then we can say to ourselves: OK, if they think there might be a risk to take blood from people who have been transfused, then let it be that way. After all, we are happy that we are well and don't have any illnesses from the transfusions and we would like the people who receive blood to not get any illnesses from the blood transfusions either. So OK, if they think it's better like that, then we will just have to forget the idea of giving blood.

But I do agree with you, when we have dreamed of giving our blood so much, it is really difficult to stay calm and accept that they don't want our perfectly healthy blood.
And nobody wants to give their blood more than people who have received blood.
People who have had blood transfusions are the ones who most want to give blood, and they can't! It's so unfair!

I hope you get this message. And I hope it helps to know you are not alone feeling like that. Do let me know what you think.
Feather

jenbar
Posts: 2
Joined: Jul 2010

Hi Corinne! I'm also a survivor of Neuroblastoma (of 8 years) and I have also wanted to give my blood. I was told (kinda through the grapevine) that cancer survivors can't donate, so I never tried. I think it is mostly because cancer survivors are more likely to get cancer again (especially neuroblastoma patients) Even though WE know we are perfectly healthy. But I wouldn't want to try to help a person and actually make their situation worse by something in me unknown. Maybe you could try giving back in another way.

I remember when visiting the doctor, I looked forward to the special candy, stickers and toys, it was the highlight of my visit! So now, I sometimes bring in a bag full of goodies. It wont cure their cancer, but it will definately lift their spirits!

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