We have been keeping busy campaign wise. Organ donation has cropped up in the news twice this week, once re the rather scary sounding “Big Donor Show" and then on Wednesday when it was revealed the EU are thinking of launching their own donor card to try and combat the huge donor shortage. I became rather narked with the BBC at this point because not only had the previous days article not mentioned anything about how to register as a donor, but then the latter article, which actually talked about the dire shortage of donors, also had no sign up details whatsoever! After a phone call to complain and the magic charms of a journalist friend of mine, a UK Transplant link was added. A small victory perhaps, but it just seems such a logical place to put one!
Yesterday was my regular trip to Harefield. It was strange for several reasons, firstly my mother insisted I drive (and then took me a ridiculous “scenic” route which means I didn’t actually learn where I was going at all) and secondly because I hadn’t been for 5 weeks, so it felt rather strange. We arrived in good time and set about the routine tests, bloods, X-ray and lung function. We had a lovely lunch together in the pub down the road (which I walked to, yay!) at my mother’s request, as she and my family had spent many a time down there either toasting to a bit of good news, or drowning their sorrows at potential devastation.
Whilst there we phoned Lisa on the internal phone, who is still doing very well but is struggling. It sounded so similar to the feelings of confusion doubt and sadness that I had so I told her I have every faith and confidence that she is going to do this, it brought back not very pleasant memories but at least I was able to say I have been where she was so hopefully I know where she is headed.
My appointment itself went fine, I mentioned my wheeze, which has been growing more and more audible, so much so that other people have started commenting on it and Abby has dubbed me “the wheezy penguin” out of Toy Story. After some examination, the doctor decided it is probably (here is where my vast lack of scientific knowledge and understanding lets me down) some…thing where the scar tissue from the join (where they connected the new lungs to the windpipe) gets a bit over zealous and over tissues, creating a narrowing of the airway. There are 2 ways to solve this, depending on the type of narrowing it has caused, and both require bronchoscopies (camera down into the lungs) therefore will require admission. Apparently he is going to confirm the diagnosis with a rather clever thingamajig (didn’t know this was actually a word until spell check corrected my attempt) which creates a sort of 3D picture of the lungs using cross sections of my CT scan. I may be making this up a bit, don’t quote me on it. Still he didn’t seemed to worried about it and if the only problem is over enthusiastic scarring rather than rejection that is fine with me!
Today was a wonderful day (to be honest what day isn’t at the moment). In the morning I had a photo shoot which is predominantly to be used for my mum’s school, who are fundraising for Harefield and the CF Trust all this year. Being the shy and retiring wallflower I am I thoroughly enjoyed the experience, especially as I got to wear my gorgeous long floaty skirt that only comes out on special occasions, and run through a field barefoot (in fact I enjoyed that bit so much I requested to do it again. And again.) After lunch, my mother and I headed up to the Brompton. I had been dying to go and visit the staff who looked after me for so many years and seeing as my mother is on half term we thought we would take the opportunity. As the lifts opened on the 2nd floor I caught sight of one of the physios who had helped me train for last years hydro active. She shrieked and I ran and threw myself at her, hugging her and laughing (it was either that or cry). My CF nurse was there too, someone who has helped me through the years and who last Summer had to give me my end of life talk, and was now gobsmacked standing their chatting to me, well listening to me as I hardly let them get a word in edgeways.
As we moved through the hospital we found my other favourite physio, who again has endured countless hours of listening to me, comforting me, and most importantly, helping me breathe. We went up to the wards where there was more cries of “oh my god!!” more shocked faces, more smiles and more tears. We then headed over to the High Dependency Unit, where I was for so long 2 years ago, and were reunited with the staff there. The head sister took me downstairs, through some long winding corridors, to see the surgeon who had saved my life twice over doing complex bullectomies and adhesion my lungs to the chest wall to try and stop them collapsing. It was so wonderful to get to see these people when I am not a)terrified b)struggling for breath and c)desperately ill.
I did my calculations this evening when I got home. I estimate that I owe at least 17 people from that hospital my life. Now bearing in mind, those 17 are people I can think of who I am pretty sure I would have died without their direct intervention. As for the number of people that got me through psychologically and physically to keep me fit enough for transplant, it is a huge number, far greater than I dare estimate. It is funny to sit and contemplate just how many people have got me here, if I tried to calculate the total medical care and intervention at pivotal times of desperate need, I suspect I would be nearing 100. There is an advert I have seen for the NHS in which a patient talks about the number of people it took to put them back together again. These people are amazing. I know it is a job, they are paid (generally not enough) and that that is their responsibility but I have found that 9 times out of 10 they go beyond the call of duty, which is why I considered today’s visit to be to see old friends rather than just a courtesy call. Ending with something I say an awful lot; I am a very lucky girl.
2 days ago