There are good parts and bad parts to my tale.
The good part is that once we'd got the diagnosis of campylobacter and started the appropriate antibiotics I started to feel better pretty quickly and now my gut is restored completely to normal. I also managed effortlessly to put back on the stone of weight I'd lost (about 6 kilos) during the week of eating basically nothing and losing everything very quickly out the back end. The weight gain phenomenon, getting back that whole stone in about a week, was helped along significantly by our old steroid friend, prednisilone. They whacked me up to 20mg a day while I am off the Micophenolate (MMF) to give me protection against rejection, and Vicky wrote in previous posts of the cravings and appetite it causes. It really is extraordinary - I can eat until my stomach physically hurts but I really won't feel full and will still look at food and quite fancy it. Somehow I crave the tastes, especially savoury, even when my body is saying 'no more!'. I am now so heavy I'm going to have to just accept I need to eat sensibly and be a bit hungry until I get the pred dose reduced again.
We had a very pleasant bank holiday weekend, with a lazy Saturday and then on Sunday went to meet my sister and her family, my mum and also some old family friends down in Southwold in Suffolk. It was blustery but basically bright, with the odd soaking rain shower. Fish and chips followed by a walk on the pier and round the town, and then back to Ellie's for vast (and I mean vast in my case) quantities of chilli. Vicky and I took mum home and stayed the night, and on Monday did some odd jobs for mum and took her for lunch by the sea. Mum is getting steadily worse with the Alzheimer's and spending 24 hours with her has the unfortunate effect of sucking any hope out of you and making you feel fairly desperate, not just about her condition and prospects but also about your own life. Misery is the overwhelming emotion for mum - it is intractable and insoluble. She knows it is all going wrong and she hates not being able to understand things and do things - making a cup of tea is a major effort and achievement for her now. I spent over an hour trying to explain to her how to turn on her alarm clock before she goes to sleep. It seems any logical construct, any instruction with more than one step is basically beyond her - so 'when you are in bed, you then press the button on top to turn the alarm on' is too much. On the one hand she realises she needs help, but then she massively resents any help given, especially from the professional carer who is now coming in every morning to check she's alright. Social services recommended twice a day, but we've started with once as we have to introduce these things slowly.
We left mum after lunch, with her in tears - the wrench of leaving, the guilt it engenders, is unbearable, but I have to protect my own life in its own precarious situation too. It has to be a balance of not feeling negligent to poor old mum, but trying to concentrate a bit selfishly on myself in this period of new life I've been given. It's tough, that's for sure.
We popped back to Ellie's on the way home and ended up staying for supper - far too much Chinese takeaway... Poor Ellie has been suffering awfully with the responsibility of mum too, and has been feeling very close to the edge. It really is for both of us to talk a lot and reassure each other we are not negligent and we are doing the right thing.
So to the bad. I awoke on Tuesday morning and felt a little off colour. I'd had a restless night and Vicky was saying my breathing didn't sound as relaxed when I was asleep. I took my temperature, which was raised again at 37.2 and then did my blows. I tried four times but just couldn't get the FEV1 or FVC up where they'd been last time I checked them on Sunday. It was just over a 10% drop, which is the magic number above which you are advised to call in to Papworth. Combined with the temperature I knew I had to call. So call I did, and they arranged to see me at clinic today. I went this morning and my blows weren't as bad as at home, but still about 10% lower than last clinic. I also had a bit of a sore throat. The doc couldn't see any changes to the X-ray, but they want to do a FOB (Fibre-optic bronchoscopy for those of you who haven't been paying attention...). I'm booked in to have the FOB tomorrow afternoon, subject to the availability of a bed. They will take some biopsies and analyse them for rejection, and will also grab some sputum out of the lungs and look for bacterial infection. If there is some acute rejection going on it will mean a course of IV prednisilone at high dose, which will send me fairly loopy (I don't think my appetite could possibly increase more, but maybe we'll see!). If is is a bug, then it'll be IV antibiotics. Obviously the best outcome will be neither, in which case it is probably a little viral infection and we just need to wait, but I need to know and it is best to be sure about the rejection.
One step forward, one step back. I am very much looking forward to getting back to some kind of stability, of the kind we were just starting to experience before I contracted the tummy bug. If nothing else I really need to get well enough to start exercising again or these Transplant Games in August will be a joke!
I'll update with the FOB results in a few days. Love to all.
5 weeks ago