I have to put in writing that I am taking responsibility for the risk that my baby might die from not vaccination

[StarlightMcKenzie]

The exact words the nurse spoke!?

I'll put something in writing if that is what they want but not that.

Apparently they have a duty to inform the HV of the risks that I am taking and have I heard the recent news oday of all the babies dying?

I'm bloody cross with this nurse tbh.

Again, marvellous Elaine. I agree with that too.

Perhaps the fact that this discussion is broadly a exchange of ideas for you but one that affects every waking moment of my life causes us to deal with the shit stirrers somewhat differently?

Possibly pagwatch

I remember a thread where leonie started laying into people running vaccination programmes in developing countries, calling them murderers and the like, which I found myself reacting to emotionally and even getting angry as many of these people are friends and colleagues.

So, yes, I do appreciate its an emotive topic for you.

I have absoloutely no problem with your reacting to that type of posting ny wy you want to. You would be responding to the content of the thread.
My problem is with people who see vaccination in a thread and use that to turn up and start goading.

A comparison would be the difference between turning up to voice your pro breast feeding views on a thread titled 'do you think formula feeding should be promoted more' and on a thread titled 'breast feeding is painful and I can't manage'.
IMO the first is valid and reasonable, the second is unpleasant and not in the spirit of the site.

I, perhaps surprisingly, have no problem with people's views. I think pro vaccine is totally valid. I just dislike point scoring on threads which are about support rather than debate.

Well, yeah, I agree with that pagwatch. There's a time and a place.

That said, if someone does post though and starts posting unsubstantiated anti vaccine propaganda, then I see nothing wrong with them being called on that (and vice versa depending on your viewpoint!). If a poster wants everyone to agree with you about how terrible vaccines are, I'm sure there are forums to be found on the various anti vax websites.

@Pagwatch

I just dislike point scoring on threads which are about support rather than debate.

Us too Peace and love, people. Thanks

If a poster wants everyone to agree with you about how terrible vaccines are, I'm sure there are forums to be found on the various anti vax websites.

Once again completely failing to note that the vast majority of people who post on these threads and who get described as 'anti-vaxers' (a term meant in a derogatory fashion I guess) did vaccinate. And are perhaps repenting at leisure.

Why shouldn't they post about their experiences on a parenting website?

Peace and love Olivia

I am not anti- vaccine so I'll stay here I think.
I suspect there are also sites for people who think everyone should vaccinate regardless of experience. Perhaps people who want to barf on about that could seek them out.
Wouldn't life be nice all round

Starlight - do you appreciate that your brother is immuno-suppressed? Your unvaccinated children may pose a risk to his life if he has close contact with them. If he is running in to problems with his health you should make him aware of their situation so he can make an informed choice. I'm a bit puzzled by your history tbh. I don't see why Manchester would start transplant work up on a child when as you say, the operation would not be possible for another 20 years. That is quite confusing. The way I read your account is that your brother had had measles before developing renal failure - as well as having had a vaccination. I don't understand why you ascribe the responsibility to the vaccine and not the disease? In your shoes this history would make me keener to have vaccinations and avoid the dangers of wild illness. I think it might be useful for you to have a consultation with a nephrologust about your family history and risks to you all. If your brother would share any of his medical history with you (his clinic letters for example should summarise his diagnosis) then you could ask your GP to refer you for a discussion. If his transplant is packing up you might also want to consider if you want to be worked up as a donor. You don't really want to wait for him to be on dialysis before you do that.

Leonie - you mentioned the flu vaccine being offered to groups of people. It's offered to those with renal failure because as a body their immune systems are knackered and any illness hits them very hard. Transplant and dialysis patients are hugely vulnerable to infection. Having a flu jab is one way that they can try and protect themselves. As somebody who works with renal patients I believe it is my professional responsibility to have a flu jab too.

Northern They don't tell you if you are a good match at the time of testing, or at least they didn't. In any case, I would not agree to be a live donor.

My DB knows of our decision not to vaccinate. We never see him really as he lives too far to travel to even for a weekend. We're not close and we didn't grow up together. Get on fine though, just not much to do with each other.

As for why I was tested. I haven't got a clue tbh. Not sure my mum remembers correctly either as she was pretty traumatised at the time. DS had been hiding his illness and was pretty bad by the time he was admitted. In fact he probably could have had a transplant much sooner but was too ill and needed dialysis first.

Saintly

Anyone can post wherever they wish.

All I said was that on this kind of forum, if you say something unsubstantiated (whether it's in favor of or against vaccines or whatever), you should expect to be called on it. If you want everyone to agree with you, then this is not the right forum.

If you want support, information, then fine. But not everyone is going to agree.

Thank you zzzzz. Perhaps that's what they were doing. My mum told me it was to see if I was a)a credible match and b)at risk of the same.

They didn't give the results to either of those questions but said we were similar. All of us in fact.

I suppose under the data protection act I have an entitlement to access whatever it was they found. Perhaps I'll do that in the first instance. It really never occured to me before now.

You don't need genetic testing to match for transplant. You need antibody whatsit

ZZZZZ - no you absolutely should not be waiting till on dialysis before getting in a transplant list. Having a pr-emptive transplant would avoid dialysis altogether and that is a good thing. There's no way to bump up the list. Kidneys are given on the basis of compatibility match. If you're the best match on the list then you get the kidney. I have known people be on the list between just a couple of days and several years.

Kidneys are a precious resource. They are also a fairly fussy and vulnerable organ. It's not ethical to put a kidney in to a person if you think it will work better in somebody else. Kidney failure tends to be a bit different from liver, lung or heart failure. If your function drops down to below 10% (ish - varies from person to person) then you can be put on dialysis. Dialysis is a pretty crap experience but it will give you enough function to keep you going for some time. Life expectancy and quality of life are massively improved by transplant but you need to be well enough to receive one. Some patients with renal failure will also have massive problems with their vascular system and the bottom line is that nobody will put a new kidney in to you if your body won't support it. Nobody gets on to the list without having end stage disease. You might have 12% function when transplanted, you might have 5%. Doesn't really make any odds, people with that degree of disfunction need a transplant. Everybody is urgent and everybody can wait iyswim. Some people will die waiting but they'll die because they have renal failure not because they didn't get a transplant at a certain point. Does that make sense?

When you reach Chronic kidney disease stage 5 aka end stage renal failure that means you either need some sort of renal replacement therapy - dialysis or transplant or you will decide not to follow that route and only have supportive care.

In terms of ethics, the match is done on the basis of best possible match because that kidney has the best possible chance with the best matching person - and each person has the best possible chance with the best possible match. There is nothing more miserable than a transplant that doesn't work. You can't predict which will and which won't but by getting the best match you give it the best chance. Somewhere hard choices have to be made unfortunately.

Doesn't that mean that the longer you are on the waiting list getting progressively unwell the less and less chance of being considered as able to give the rare available kidney it's best chance?

No, it shouldn't do, Star. There are two issues to be considered:

1. Best match - ABO blood group match, as many 'minor antigens' as possible match.

1. Recipient health - can they withstand the demands of surgery, do they have any conditions which mean that a transplant isn't viable?

Link here to the allocation criteria

I think you do get some extra points for having waited a long time but it's the match that's the main thing and some people will never match. Some people will be on the list and come off it because of health and some people will start dialysis being unfit for transplant and then ultimately get on the list when their health improves. Patients on the list have regular ecgs etc and if unwell or aware from their base unit they would be suspended from the list.
As with all organ donation, the more people who are willing to, on the worst day of their lives, make an incredibly generous gesture, the more lives will be improved and prolonged.