On Wednesday we headed up to Papworth. Jas felt the mycophenolate was probably the root cause of Will's problems. So, he told Will to stop taking it for 10 days, and to increase his prednisolone dose to 20mg per day (he is normally on 5mg) to give him more protection against rejection. He also stopped a couple of other things that are known to cause nausea or diarrhoea. He let Will come home, ostensibly because he'd be more comfortable at home, but really because there weren't any beds.
At 7 that evening the GP rang to say that he'd got another stool sample result back - it had cultured campylobacter. Campylobacter + compromised immune function = antibiotics. GP prescribed azithromycin, which Will happened to have a store of from pre-tx days, so he could start immediately. Being the anxious folk we are, we rang Papworth and spoke to the transplant doc on call (it was lovely Irish David, who was v nice to Will after his op when his heart was doing weird things) to confirm that they'd be happy with that.
And 36 hours later, Will seems to have turned a corner. He woke me up at 4 this morning to tell me he was desperate for a McBreakfast. I'm still laughing because Will is now showing all the signs that he's surfing a massive prednisolone wave. For those of you less familiar with the power (for good and evil) of these tiny white pills, they are renouned for causing insomina, ravenous apetite, euphoria and impulsive behaviour. The full story of Will's night made me laugh even more - apparently when he got up at 4am he joined the Cambridge Table Tennis Club... Yep really. He's also suddenly got a list of things he 'needs' to buy, top of the list being ... you guessed it ... a table tennis bat. He left the house at 7.30 this morning to get his much desired McBreakfast, and texted me shortly after to say it was delicious. He's on his way to Papworth now for more bloods to check electrolytes and kidney function.
So please all keep everything crossed that the antibiotics are doing their thing and the mean little campylobacter squiggles are wriggling in their death throes. Am feeling a bit vindicated by the stool sample result because I felt from the start that this bug was presenting in a completely different way to previous viral bouts he's had. But bacterial causes are very rare in this country, so I get why everyone assumed it was viral.
In other news, the table tennis elements of the last few hours aren't entirely random, they are on Will's mind because he's signing up to take part in the UK Transplant Games in August! We are off to Bath for a long weekend to live it up with sporty transplantees! Think I'm more excited than Will, but then I don't have to do anything, I just get to wear a t-shirt and cheer/cry a bit.
5 weeks ago