Well, all we really got from that clinic appointment was information we basically already knew and a big dose of reassurance, although that reassurance did have to be squeezed out of the doctor and nursing team with a series of questions and slight rants about our experience of the primary care NHS.
The thing is that in the past the most likely common illness I'd get would be a cold, and if I got a cold I'd be sure to get a nasty chest infection, and if I got a nasty chest infection I'd ring up Angie on the CF team at Papworth and she'd say 'come in and have IVs'. Simple. One person to call, immediate action; in hospital where you need to be, being pumped full of noxious antibiotics. Back then if I'd got a tummy bug I would have just waited for it to go away like everyone else. In the new post-tx situation if I get a cold I will more than likely be fine and won't get a chest infection, much like most people. It might take longer to fight off the cold, but I should be ok. If I get any other illness not directly connected with lungs the Papworth team really aren't interested - it's a job for the GP or local hospital, and that means the route we took this time - the out of hours GP service or A&E.
This is all in principle fine, but when you turn up and tell them you've had a bilateral lung transplant they, being intelligent doctors, get all interested and then, when they take a chest x-ray which makes it look like you have pneumonia, get worried and it is up to me and Vicky to feed them all the information. Of course they can phone a doctor at Papworth, but initially it is frustrating. They talk of administering antibiotics, but shouldn't we be checking with the Papworth team in case of allergies, or interfering somehow with the lungs?? I really wish they would hurry up with computerisation and networking of all your notes so docs have this info to hand. We got, as I expect a lot of you did, a thing through the post recently about the process of the NHS starting this with the summary record, but it would also be great if, for example, past X-rays were easily accessible by any doctor from any hospital.
Anyway, I'm getting off track. The upshot of clinic was that they did another ECG, it showed the same slight strangeness and even the cardiology consultant at Papworth couldn't work out what was going on. They don't seem too worried as the Echo was ok, so they will just monitor it. My lungs sounded ok and the X-ray from Saturday was ok (they got that sent over from Addies - so there is a system but you have to ring the radiology team and ask them to send it over, not possible at 3am on Saturday morning...) When I asked when they'd like to see me next they initially said 2-3 months and Vicky and I both exclaimed 'what??!' in unison, in comically high voices, since up to now we'd been on 3 weeks and I'd just been ill. It seems someone had written in last time's notes 3-4 months when they meant 3-4 weeks. So they then said 4-6 weeks. We went for a month to be safe.
So to the title of the post ' learning to be normal'. The general impression we got of the clinic was that their attitude was remarkably relaxed. "It doesn't matter if you miss the odd dose of immunosuppression (although we don't tell people that) - you aren't going to immediately start rejecting." "The first 3 months are the risky period, if the 3-month biopsy is clear of rejection it is much less likely things will start suddenly rejecting". Essentially they want you to start living your life and get on with things, and not have to be coming to Papworth all the time. If you get a common illness, you'll probably get better, and you can always call them, but go to the GP first as standard antibiotics will be fine. This is all terribly new, and a bit difficult to adjust to!
Part of the reason there was so much anxiety flowing around this time was that it was the first time I'd been ill post-tx. Next time we will know what to expect, what I can handle and how to work the GP/Addenbrookes system. Eventually we will learn to trust it will all be ok and learn to live life a bit more normally.
5 weeks ago