Can you give blood with APS? - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Can you give blood with APS?

missmolly profile image
38 Replies
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missmolly profile image
missmolly
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38 Replies
dutchess profile image
dutchess

not totally sure , but i know you cant if your on warfarin

Davidj profile image
Davidj in reply to dutchess

Not if your on blood thinner. Ironic how I was blood captain @ work.

David

Www.mengetlupustoo.healthunlocked.com

in reply to Davidj

wow that's a cool HU community! Thanks for bringing it to our attention!

jetjetjet profile image
jetjetjet

Im not sure i would want to be the recipient- of my blood !!!!!!!!!!!!!!!!!!!!!!! ?????????But i'm not sure of the correct answer to that - plus all the meds i'm on.. :-(------------------------------ soon to be flipper again or partially--- jet

I used to be a regular blood donor but following my DVT and subsequent positive tests for APS I was told by the Blood Transfusion Service that I would never be allowed to give blood again. Apparently, even if you are now testing negative (like me), the fact that you have tested positive in the past prohibits them from taking blood in the future. I know this as I did phone them some 8 years after my diagnosis and they were adamant. :(

SueLovett profile image
SueLovett

Jet you made me laugh thanks!

InSpain profile image
InSpain in reply to SueLovett

Me too Sue! Thanks Jet I'm feeling a bit down at the moment, so a good laugh was just what the Doctor ordered!!!! xxx

I contacted the National Blood service back in 2006 and they basically said 'no' to anyone with positive results and 'no' again if you have any thrombotic events including TIAs.

in reply to

Kate I think that was about the last time I tried to ask about it as it was pre the start of my starting my current job. I have also been removed from the Anthony Nolan Trust list for the same reason. Sad really, I always hoped that one day I might be able to give something back but clearly that's not to be!

in reply to

Yes, that sounds about the right time - seven years, doesn't it fly. I too wanted to give blood but it wouldn't be fair on the poor person having my weird antibodies! I think we'd be more of a hindrance than help :)

in reply to

I used to give blood and was worried about that, too! Here in USA they say I am still eligible but I know its just not right.... There are so many unknowns.....

CanaryDiamond10 profile image
CanaryDiamond10 in reply to

I'm in the USA and they told me the exact opposite. No donating anything from me. They don't want this mess anymore than I do!

Canary

That's just tipped me right over the edge now as I'm also registered for Organ donation when I eventually pop my clogs :'(

I know of two people who wanted to leave their body to research - one was fine but the other didn't put the correct wording in his will - I think he said ''medical research" when it has to be "anatomical research". It meant the poor man was buried against his wishes - a real shame, particularly as it was a solicitor who drew up his will. If you leave your body, it saves the hassle and funeral for your family as they will take you straight away. Just make sure the wording is correct - talk about red tape!

in reply to

Did you see on BBC Breakfast this morning the article on organ donation? Pressing again for an assumed pro-donation unless you opt out in your lifetime.

CanaryDiamond10 profile image
CanaryDiamond10 in reply to

Do you know what they do with the body when they are done with research? Is it cremated or buried? What happens when they have studied all they can?

Just curious

Canary

kathyD64 profile image
kathyD64

Interesting topic ;-) i will ask at work because i work in the brain bank but it is for research into dementia / alzheimers... there is a brain bank for brain tumours aswell ... seems Prof Hughes suggest APS will one day probably have a chapter in neurological journals and as so many APS patients present with neurological symptoms we should have a brain bank all to our selves! ;-) all i do know is, if you are registered to donate whole body you cant donate your brain seperately kathy xx not wishing to offend anyone by going from blood donations to brains ;-) but as i see it once you have passed over to the other side our bodies may hold the clues to future findings and i am all for research and finding one day perhaps a cure for future generations !!

Paleosooze profile image
Paleosooze

Seriously, we can't donate organs? :( well, I'd be happy for my body to be used for research, they might find it quite interesting!!

swx3 profile image
swx3

Gutted to learn we cannot donate organs!!...my hubby and daughter have been given their instructions!!! That's pi**ed me off!

swx3 profile image
swx3

Gutted to learn we cannot donate organs!!...my hubby and daughter have been given their instructions!!! That's pi**ed me off!

missmolly profile image
missmolly

Thanks for your replies i asked as they have said yes...although im not on any medication i find that response very strange!

in reply to missmolly

Mmm - that is interesting ... If you are not taking any medications, does that mean you have not had a thrombotic event?

missmolly profile image
missmolly in reply to

Hi Kate..no thrombotic event still find it difficult to understand why they want my blood with a positive result?

in reply to missmolly

Yes, it goes against the letter I received in 2006 from the National Blood Service if you are positive for antiphospholipid antibodies. Perhaps you could ask them to give me a ring or email at the charity office to discuss? We really do need to get this cleared up as I don't want to be giving people the wrong information if it's changed recently.

missmolly profile image
missmolly in reply to

Hi Kate can you foward me the details so i can ask them to contact you please

in reply to missmolly

hughes-syndrome.org/about-h... :)

missmolly profile image
missmolly in reply to

Thanks kate im a dumbass.....my dignosis was 2008 due to miscarrige at 22 weeks, my gp knows nothing about it and feel that you are left until something happens like clot or stroke....scarey with no follow ups??

David_Madrid profile image
David_Madrid

Hi there,

I used to be blood donnor in Spain 20 years ago... till I had a positive in Siphilis. Fake positive, of course :-) I did not know anything about APS an I was not officially diagnosticated, but I was told that although I looked like healthy I was not allowed to give my blood. Laws are very strict about that and even a fake positive was enough to discard me blood. Some years later, after a DVT, I found out Siphilis fake postive is one more symptom of APS...

Saludos.

Davidj profile image
Davidj

Bad enough Mosquitos bite this blood then get drunk in hit the floor.

:) the poor little things scrape there tongues and say what the hec was that !

I would say no lol

David Tampa Florida

mengetlupustoo.healthunlock...

GinaD profile image
GinaD

Actually, iused to wonder why I am so popular with mosquitoes. Line of 10 hikers. Nine get no bites; I get 5 bites.

Turns out, the theory goes that if your blood chemistry is significantly different from average, your blood will smell different and the buggers will que on you the way pa lion will cue onto the antelope wearing the prominent ear tag.

overnighthearingloss profile image
overnighthearingloss in reply to GinaD

Hmmmn, maybe something to this. A good few years back on holiday I was in a group that camped out at a desert oasis. Next morning I had 32 bites on one hand. People around me seemed to have none.

For years I never considered organ donation. Now when I have come around to the idea it seems I am too defective :-)

GinaD profile image
GinaD

And I was told years ago that no one with a chronic autoimmune disorder should give blood -in case we give our autoimmune condition as well.

BrazilianBade profile image
BrazilianBade

According to both my haemathologist and my rheum, we cannot donate blood. They told me the risks are way to high to do this. I was sad because before being d-x with hughes syndromme, I used to be a regular donator. If u are on blood thinners, the risks of not stopping the blood flow is too high,

windsorGirl profile image
windsorGirl

WindsorGirl Wow it is great to read all this info about blood donations. I really like the person who said the mosquitos get drunk, mine, stick to walls ,windows and other flat land able places. They should no not to mess with me. I also hope those dang Bedbugs try a little drink....Ha Ham Hope I don't offend anyone. Laughing Keeps me Sane.. Bye to my new friends...

CanaryDiamond10 profile image
CanaryDiamond10 in reply to windsorGirl

Don't know if it works but I understand if you put a few dryer sheets (fabric softener) in the bed as you make it and leave them there - those bed bugs will march the other way! We don't have them in this area. I'd sure like to know if it works. If I had them I'd sure try dryer sheets! (Sorry to digress from the subject.)

Canary

katrinahug03 profile image
katrinahug03

yes you can as long as you are not taking anything but aspirin. im a blood donor. i contacted the blood donor website and they said as long as im not taking heparin or warfarin then you can still donate blood even if on aspirin but you need to contact them and let them know

CanaryDiamond10 profile image
CanaryDiamond10 in reply to katrinahug03

I would double check that information with your local blood bank. I don't believe it is accurate. I'd wait and see what Kate comes in with before I'd donate again. At least you can be sure it will be current, accurate, and specific to APS. You wouldn't want to unknowingly donate blood that may harm rather than help.

Safety First!

Canary

missmolly profile image
missmolly in reply to katrinahug03

This is definately true NBS have confirmed twice i can donate blood.

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