December 11, 2014

Tissue typing: a dark art

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last Christmas, having just returned home from GOSH

last Christmas, having just returned home from GOSH

Another private blog post about the search for Margot’s matching donor. I’m sharing this “news” and information at much the same pace with which we received it, albeit a year ago:

I made an appointment to meet the lady from the tissue typing team at 16:30 today.  Yesterday, I sent her the results from BeTheMatch and another search from an alternative source which respectively indicate that there are potentially 11 and 64 potential matches for Margot.

My big question is: Why is there such a big difference in the number of potential donors you tell us there are for Margot and what these organisations report ?

17:28 We eventually meet. 

The short answer is: “it’s complicated” but she is good enough to explain it to us clearly. Sadly, there are no quick wins here. And as she says, it really is complicated. However, the lady gives me the firm impression that she is ‘all over it’.

In essence, she explains that the searches I provided her with only look at the first 2 digits of the antigens. By way of example, Antigen A could be 13:02 – but the search engine only looks at the 13 (and not the 02 as well)  i.e. the searches I have provided have not considered Margot’s tissue typing in sufficient depth.

She explains : when they test further and drill down, the potential matches of 11 and 64 will be whittled back down to a few only – which is where the actual situation remains.

She goes on: A B & DR tissue types are considered a ‘broad match’ and that’s all that was provided in the search results I forwarded on to her.  For example, Broads consist of: AA, BB, DR DR – a match on these three pairs is considered a 6 on 6 match, much as we had with ‘the Brazilian three’.

The news is, on further investigation, two of the Brazilians were ‘multiple mismatches’ (no good) and one was deleted from the register.

oh.

But she saved the best for last and quickly explained, here’s where we are: “We may have a match.”

Apparently, a German person has been identified and she says that they know from ‘local typing’ that this person is a 9 on 10 match for Margot … BUT “this needs to be confirmed in our lab following arrival of the blood sample”.

She says that there is also another potential German match, but again not yet confirmed.  She says it is sounding promising but either way, confirmation is unlikely to come through until around Christmas time.

Summary: as things stand, we appear to have a 9 on 10 match which is “in process”. And if this is actually confirmed to be the case, Margot would be able to use this donor. Inshallah.

===

Having heard all that has been said today regarding the donor situation, the net net is that today, there is only one potential donor for Margot on the register in the world (not yet confirmed). Plus possibly one other also to be verified.

It’s all still rather tenuous.

Accordingly, our feeling is that we should continue to press ahead with our donor efforts regardless, if nothing else as a possible back up option for Margot and otherwise for the greater good.

Husband to Vicki and father to Oscar (2007), Rufus (2008), Digby (2015) & Margot (2012-2014)

Posted in: Journal