With the novelty of no oxygen constraints still being fresh A and I have been out and about more in the last week than we probably managed in the whole of December. Nothing flashy, just leaving the house, going for a meal, going into town, it’s all so exciting and a privilege to have such freedom to do so without watching the hand of the oxygen dial moving towards empty.
Yesterday we went up to Bristol as there was a concert A really wanted to see and I think of Bristol as a second home since I spent some of the happiest years of my life as a uni student there. We met up with the man who is ultimately responsible for me being here today, that is the head CF consultant at Bristol Royal Infirmary. It was fantastic to see him and to be able to show him this wonderful new transformation. I will never forget the day he wandered into my room on the ward where I had been for a couple of weeks, sat quietly for a bit and then asked me if anyone had ever mentioned transplantation before. Naively I said yes I was aware some people needed it when their CF got really bad, and very little else was said on the subject. It was only once he’d gone it dawned on me it might be in reference to my own health and I was stunned. The problem is I still felt “normal” as you learn to adapt and work with what lung function you have, but early referral is vital as was proved to me as I went on to wait nearly 2 years for my lungs. He was responsible for getting me referred and for keeping me as well as possible whilst I finished uni (which nothing, neither oxygen nor wheelchairs nor indeed collapsed lungs and chest drains was going to prevent me from doing).
We relayed the full story of the huge rollercoaster to him (I will be doing the same on my blog over the coming month) and chatted about all things transplant related. He said to have survived what I did there must be some reason and I think he’s right. I also know full well where my energies will next be invested, I have some serious campaigning to do on the issue of surgeons and how they are “measured”. At present if you try to look up the surgeon who did my transplant, one of the first things that will appear is the death rate.
I feel this is an extremely unfair way of measuring someone’s competency when the cases they are working on are ones like mine; highly complex and very high risk. Consequently I did nearly die, but surely the main focus should be that without a transplant I didn’t even have a chance and would certainly have died, making the operation the only option. The day my mum calls Black Thursday, when they finally said to my parents there was nothing they could do, the surgeon apologised to my mum and she said to him she never wanted to hear an apology again as whatever happened from then on, they had given me a chance and my family would remain indebted to them for that. It is far more long and complex than that but I have a lot of research to do and then I will pursue this matter as far as I can. I could have easily been turned away that night but they took a risk, and it paid off, I want to do everything I can to make sure that for people in the same position as me who want to take that chance they have the opportunity to do so.
Due to no longer being able to cause spectacular commotion health wise, I apparently decided to create a disturbance by dropping my phone on the street in Bristol. Someone has found it and was thoughtful enough to ring the number labelled "home" so we know it's been retrieved, but as yet I have not being reunited with it, which is why I appear to be ignoring you if you've rung/texted.
The C Word
7 hours ago