Trekked up to harefield again yesterday, they start you off with clinic appointments twice a week (keeping a close eye on everything which is highly reassuring) and then reduce it slowly as time goes on. I received another glowing report, and this time as opposed to being described as resembling a dogs dinner (yes that is the medical term they used) which was a consequence of the massive pneumonia I picked up after transplant, yesterday the CT scan was described as “bloody fantastic” (a medical term I am keen to hear more of). I took the opportunity to go back to intensive care and visit the wonderful staff who cared for me for 7 long weeks. It is so therapeutic to be able to walk in and stand and chat when you spent so long flat on your back, attached to a ventilator and unable to move – that makes ICU seem a much more frightening and sinister place whereas revisiting helps me modify my memories and put it all into context. I also met and was thanked by one of the top bods at Harefield for the Comedy benefit – we raised a fantastic £20 000 and I have watched the show as it was recorded for me and it was just brilliant, I am so proud and so grateful to everyone who continued to work on it whilst I was off wreaking havoc in a semi conscious state.
On the way home from harefield, I was going over memories of the last few months in my head. You don’t realise how ill you are or how hard things are until you experience a difference, and thinking back to my puffy days, where I could literally neither move nor talk and only just had the energy to breathe, I cant believe how lucky I now am. My lung function is currently just under 50% (expected to rise over time) so with it being at 19% previously, the difference is indescribable. On Christmas day, I was so out of puff I didn’t feel well enough to open my presents, little did I know just 2 weeks later a whole new chapter of my life would be beginning. It just goes to show no matter how hard things get, whilst you are alive you are still living and there is always hope.
For those who have been getting in touch and not hearing much back, big apologies for being lax on the email/text front; I am still readjusting to being home and to this strange but brilliant new world so am being a tad uncommunicative at the moment, rest assured I will be chattering your ears off sometime in the very near future!
4 weeks ago