A minor(ish) hitch

Over the past few weeks living with Jack’s kidney transplant has started to feel like normal life for us.

His main immunosuppressant, Tacrolimus (Tac) has to be taken on an empty stomach – so 2 hours after food and then he can’t eat for an hour. Juggling this around school can be a bit of a pain. Our solution is for one of us to get up at 6am to prepare Jack’s favourite breakfast (was cheese on toast, now it’s cheese and ham toastie – spot the theme 🙂 which he has in bed with a cup of tea and his other meds which need to be taken with food!!

Not wishing to be accused of favouritism we feel duty bound to also provide Harry with his drink and breakfast of choice (Hot chocolate and porridge). It’s starting to feel like we’re running a hotel room service every morning. The words ‘rod’ and ‘own back’ are springing to mind.

On the plus side our resident teenager, Karim, is still dead to the world at 6am and it has not occurred to him to put in a breakfast order!

A couple of weeks ago Jack developed a horrible sore throat – the whole thing just looked totally swollen and covered in pus. Yuck. It was a secondary infection – the main problem was the EMV/CMV viruses which were passed to him from me in my blood and tissue. One of them (can’t remember which) causes glandular fever – I must have picked it up as a child when it just makes you feel a bit grotty for a few days as opposed to as a teenager or adult when it can be horrible. Anyway – the virus had gone crazy in Jack which, if left unchecked, can cause serious problems such as lymphomas. If he were to get those they would have to drop his immunosuppression which would then put his kidney at risk.

As usual the team at GOSH were straight on the case and ordered one of us to go into London one Friday afternoon to collect some hugely expensive (and therefore hard to acquire) medicine for him. I gamely volunteered in the sure and certain knowledge that I would be presented with the opportunity to have a spin around the shops at the Brunswisk Shopping Centre while I waited for his presciption to be filled. Tragically, despite trying on a number of items, nothing took my fancy – not even a new nail varnish – and I came home clutching only the medicine much to Mark’s relief.

Thankfully this medicine appears to be doing the trick and they have also scanned and checked his eyes/liver/spleen/abdominal blood vessels and of course the good old kidney so see if the virus has affected them in any way. No on all counts and his new kidney still looks awesome.

Finally, we have met with the BBC film maker who was at GOSH last year and he showed us the footage of us that he has included in his documentary. It is just a couple of minutes spread across the begining, middle and end and Jack provides a useful backdrop for the 3 main stories being followed in the film.

It is to be shown in March.