After a welcome home-cooked dinner and a night in my own bed Vicky and I returned to Papworth for the third and final day of the assessment. On the programme for the day was an appointment with one of the transplant surgeons. The team would then have a meeting to discuss me and any other cases they were assessing and finally report back their recommendation to me.
We arrived and were met by one of the transplant coordinators, Ann. The coordinators are an amazingly bright and breezy bunch of people - I guess it is part of the job description - and they sort out all the arrangements before transplant: getting patients to the hospital, coordinating the delivery of organs from the donor and so on.
Ann took us in to meet the surgeon, Mr Tsui. Mr Tsui is the head of the transplant service at Papworth, so we were in the privileged position of meeting the boss! He was an impressive individual with a very measured manner and he slowly took us through the procedure for selection of donor lungs and the operation itself. What surprised me is how picky they are; how many people who on paper look to be reasonable candidates for donation are rejected. The donor is likely to be in another hospital and so either a team from Papworth or a team on site at the donor hospital will assess the organs. Of course there will be teams all taking their turns for the lungs, heart, liver, kidneys and anything else that might be required. The lung team will measure the gas exchange capability of the lungs, the size of the organs and will do a bronchoscopy where a camera is put inside the lungs to have a good look around and see if there are any tumours or other problems.
Matching of the lungs to the receipient (me!) will be through blood group and lung size. Mr Tsui said that lung size can be +/- 15% of my ideal size and still work ok.
Mr Tsui then moved on to the procedure itself. There are three possible operation types they can do. A vertical cut through the sternum, right down the middle of the chest; a cut “under the breasts”, the so-called clamshell procedure; and a cut round the back around the shoulder blade, which is more unusual I believe. Apparently the vertical cut is less painful post operation as there is less flesh down the middle and the sternum iteself can be immobilsed with wires and will heal quickly and well. However, there are a couple of issues. One is that access is restricted for releasing the existing lungs from the chest wall, which is often a problem with CF lungs where there is a lot of scarring from infection ‘welding’ the lungs in place. The second is that visually is it more difficult to get a good angle on aligning the two ends of various vessels that have to be joined that run horizontally across the chest. Because of this it is more likely that I would have the clamshell incision, which involves sawing through all the ribs (!!) and opening me up like a rack of lamb.
The old lungs are taken out one by one. I might ask them to keep them for me - I quite fancy them pickled in an old-style bell jar on a shelf in some future office…(am I being weird??). The new lungs only arrive at Papworth 10 to 15 minutes before they are put in. Sounds crazy (what if the ambulance bringing them crashes?) but that way they only have to keep them on ice for the shortest possible period. The new lungs are put in one by one, the windpipes joined and the vessels sewn up and then they close me up. Total time around 9 hours.
I go into intensive care and am kept sedated for 24 hours. I imagine this period of the operation and post-sedation will be totally hellish for Vicky.
Mr Tsui ended by talking again about survival and telling me everything that can go wrong, but pointed out I am a good candidate and some people can survive 20 years. I just need extreme quantities of luck to try and be one of those people.
Vicky and I went for lunch (lamb madras in the hospital canteen…mmm..) and then returned for a final chat with Ann, the coordinator, about what happens next. She reported that everyone thought I was a good candidate and it was the right time to go on the list. So we have agreed that I will be listed on 3rd August after I’ve had a couple of holidays in July and organised a few things, like signing my Will and so on.
Ann then told me about what needs to happen while I’m on the list, that I can be called at any time and must always be contactable. We left her with a slew of phone numbers for me, Vicky, my parents, her parents, our siblings - all the likely places we might be. I have to inform the transplant team every time I go more than 1 hour drive from Cambridge. I must stay in the UK, preferably England. I need to ring them monthly to give a basic update - what’s my weight, do I have any infections that might preclude transplant (such as random ear infections), am I well?
And that was about it. If you’ve managed to read this far, congratulations. I am feeling positive and in a way relieved that I’ve been offered the place on the list. It is terrifying and exciting. I’m looking forward to riding a bike, walking into town without feeling awful and without oxygen, climing a hill, going skiing, windsurfing again… I’ll update this blog with any significant developments as well as dropping in the odd post about what we’re up to. Finally, please do keep your fingers crossed for me!
5 weeks ago