18 month Update on MrLISAD123

[lisad123isgoingcrazy]

Well 18 month has gone by and thought I should update again. Sorry to say we had a call today to say DH drugs arent working We were so hopeful, but seems its slowed to a stop in battling the cancer in the blood
We are due to go and see specialist on 4th Aug, but could mean next step is Bone marrow transplant, so anyone not joined please do. DH will have no family matches.

Sorry to hear this Lisad

I'll see if I can join up. I know I can't give blood as I have had a transfusion, so am guessing maybe not. Also have had chemo which may also count against. But I'll ask.

Hugs to you all.
xx

thanks

Oh no; I saw the thread title and hoped this was going to be a happy "everything still going well" thread.

I will look into joining the register (have only just realised that all you need to do these days is give them a saliva sample which is far easier than it used to be (I kept planning to join before but putting it off over hassle factor)) but can't donate at the moment (suspect that may mean I can't even join the register right now, but will find out). I'll publicise the link among other friends, though.

Oooh, I can join the register, apparently. And I should probably do it now as I'm rapidly closing in on 40 and won't be able to join it after that...

I so wish it was a "everything going well jobie"

So sorry Lisad - I can't join the register as wrong country but I hope you find a match for him.

((hugs)) for you all.

I've applied to join and scored at least one other recruit on FB so far...

thanks loads. Its a scarcy thought, being in the hands of strangers willingness to give their body parts

So sorry I'm already on the register so I'll just have to bully other people into joining.

Bumping this...

So sorry things are so difficult.

I would like to join the register but not sure how to go about it and DH not keen.

Lisa, I am so sorry to hear about your DH. Just heartbreaking.

I will look into the register - I understand now just how important these things are.

Take care of yourself x

I'm so sorry that your family is going through this. I really hope things turn around, for the better, for your DH.

Unfortunately I am unable to donate either.

There's a link to the application process in my post above (the one about saliva).

bump for late comers

I can't believe it's been 18 monts Lisa I registered for MB donation years ago, let's hope you help lots more sign up and get a perfect match for your dh.

I know, DDs have grown so much in that time too. It seems like we have been fighting this evil thing forever

I just looked into it and i don't think, at the moment, i can do it because i am a single Mum and couldn't leave DC to go to London for 2 days.

Hope all goes well for your DH.

I also clicked hoping it was going to be good news.

I'm not sure if I can join or not.

On the NHS blood/bone marrow pages it says you have to be a blood donor as well - now I know I can't give blood. But according to the link above I can go on the AN one

If you fill in the AN application there's a box for any other medical information at the end, so you could fill it in and then outline whatever it is that makes you unable to donate blood there and ask if it's a problem. Then the people assessing your application can take it into account if it is an issue.

well I've slept with (more than one) man from a "high risk" (high prevalence of HIV/AIDS) country.

I know when I looked into gving blood a few years back I couldn't give it because I'd had sex with someone in the previous 12 months who had been sexually active in a country with a high prevalence of HIV/AIDS (my then DH of 6yrs who I had already had 2 children with).

Then they realised that I had been sexually active in a country where it was very common.

They were absolutely firm that I couldn't give blood

I think the difference is that if you are donating bone marrow it's to one specific individual on one specific occasion and they spend days on screening and prodding and checking you; they can give you an HIV test (presumably would give everyone an HIV test) and be sensible about your personal level of risk of having HIV that didn't show up in a test given what you did and when and how long has elapsed (i.e. in your case pretty minimal risk). Whereas blood donation is a repeated thing and the blood goes into general circulation and they need to qualify donors by a simple and easily-repeatable formula. So they over-restrict (IMO, although I suppose they have dealt with the fallout from under-restricting in the past so may see it differently).

The AN form does ask whether you've given blood -- I have so don't know whether there would be follow-up questions if you answer "No" to that question. I think part of the reason they ideally want people to be blood donors is that they know an existing blood donor isn't going to come over all queasy about needles when actually called in for a match (I think I read that somewhere once long ago, although I may just be imagining it).

Professor - I'd had (2) previous HIV tests (they were offered to me when I was pg due to my "sexual history") for both pg's and they were both clear.

They (blood donor) still said no

Exactly -- the blood donation people need (or think they need) a snap easy "yes" or "no", with no time for a "so when were you sexually active in this country?... Mmm-hmm... and you've had subsequent HIV tests when?... Mmm-hmm..." chat every time and someone being allowed to make individual decisions. Whereas the bone marrow donation process is all about individual decisions.

I think everyone gets offered (in a "this is what we will do unless you opt out" sort of way) HIV tests in pregnancy; I certainly have been and I've lived an extremely boring and uneventful life . So logically any woman who's had two or more children post any "high risk" event will have had sequential HIV screens a year or more apart and is no more of a risk than anyone else, but that doesn't get factored in.