Last time I wrote I was hoping (and also hoping not) that I would get a transplant. Well it is now almost 6 weeks since I had the operation. I remember very little about the period leading up to it; I can’t really recall the Transplant Coordinator 'phoning saying they had some lungs. I do remember being blue-lighted to Papworth then it’s all a blur apart from two distinct moments. The first when the transplant coordinator said ‘we’re going ahead’ and the second and last memory of being in theatre and the anaesthetist taking my glasses off.
Next thing I know I’m coming round not knowing what was going on: I thought I was dreaming that I ‘d had a transplant. I was trying to remember whether I’d got a call or not. Surfacing from a hefty whack of anaesthetic takes a while; coming up then going out again until gradually consciousness comes and then the pain started.
All I could do was groan in agony. (My sister Lucy was there and said she nearly fainted so the nurse had to put her feet up). At some point they gave me an epidural with a pain block and some Fentanyl which did the job.
Being in Critical Care is a surreal experience of being in a sort of twilight world where time goes so slowly. Because of the epidural I was subjected to the ‘ice test’ which involves a nurse rubbing ice down your body every two hours day and night to check the block is both working and not numbing too much of your body. It is a very stressful environment as apart from the ice test there are 2 hourly obs. as well as frequent administration of a raft of medication. I was started on immunosuppressants before the surgery (no memory but I checked my texts and had sent one to that effect).
Apart from the pain killers I was (and still am) on immunosuppressants, antivirals, antibiotics and antifungals, all in the plural as they came in intravenous infusions, tablets and a nebulizer. Oh and I’m forgetting the massive dose of steroids.
There is a 24 hour dedicated nurse who stays with you constantly. Apart from having 4 drains (pipes going through the rib cage and draining into your own personal horror show of large containers of bubbling yellow and red stuff coming out of the lungs. So I was awake most of the time. All the drugs swilling around gave me a dreadful stomach (great when you’re confined to bed and having to use a shallow cardboard bed pan; I won’t go into graphic detail, needless to say the nurses were just fantastic at making it all routine) so I was horribly nauseous and unable to eat a thing for 10 days. Eventually with new anti-sickness meds I started with a piece of toast and a banana. The dietician who was threatening me with a feeding tube told me to forget about healthy food and to eat cake, chocolate and crisps. Just what I needed to be able to start eating more.
The after effects of the anaesthetic gave me a heightened sense of smell and I thought everything stank of cheap air freshener. Even the smell of the cardboard sick bowls make me want to retch. Vivid disturbing nightmares are also par for the course as are headaches and hallucinations. Strangely I saw smoke drifting round me and things flying across the room.
At times it all felt too difficult. I felt so awful dying didn’t seem so bad. But the transplant team and nursing staff are not about to let you do that! At my lowest ebb there was some sympathy then I was told I had to get up to get my new lungs working. If I stayed in bed they would just collapse.
The physiotherapists came along and helped me up and got me sitting in a chair and then walking around the ward, although my legs felt like very heavy jelly. Given I was so unfit before the transplant , 2 weeks in bed and I was so weak it felt impossible. It seemed a superhuman effort to get through it. I thought though that I owed it to the donor and the surgeons and rest of the transplant team to take care of my lungs, which is a good motivator.
So I somehow survived the worst 2 weeks and I’m now home and painting again:
It is a very strange feeling to be able to breathe although in one sense I don’t think about it as it’s my default position. I also feel slightly set apart from everybody by that experience as no one can understand unless they’ve been through it.
I am looking forward to being able to do normal things as soon as I get my strength back. Next week I’ll write about being on immunosuppressants and what that means.