Hello all. Finally home, those who warned me about the exhausting day - you were not wrong. I feel I could sleep for a week lol.
I had the best outcome possible, I have been put to the absolute top of the list for my blood group/height etc. so if those perfect matching lungs come up, they are mine :) they offered to keep me in and wait for lungs there, but I explained how I like being at home and a little picture of Milly and Tink showed the Doctor (the legend - Dr Carby) exactly why I want to be here lol. For those of you who know what Ecmo is, I have been given that option if I get any worse I must contact them immediately. In the mean time I have to just wait by my phone, ultimately I'm still waiting for the rarest lungs due to my height and blood group etc but if they come now, they have my name on ;)
Now I intend on sleeping for about a week, so if I don't reply to anyone it's because I'm in the lovely, relaxing land of 'nod.'
Oh and I just wanted to quickly add how amazing it was to see George Compton today, she's on Kalydeco and is doing soooo well!! She's actually improved lung function from about 12% to 24%!! No more oxygen, no wheelchair she looked great, not breathless whilst chatting to me and the difference from when I saw her a year ago is staggering!! :) We had a little catch up, which was lovely and she's been able to come off the transplant list as her quality of life has improved so much, she's happy now and feels a transplant isn't necessary now which men's kalydeco really is doing amazing things for her. :) oh and for those who may be wondering why I can't have kalydeco it's for CF people with a certain gene type and I don't have that gene unfortunately!
Anyway, thanks for all the messages and comments guys, I will read and hopefully reply as soon as I'm not asleep *falls asleep* lol... Love to you all ♥
Facebook post, Thursday:
I will be writing a more detailed blog over the next few days about exactly everything that was said and how it all went yesterday as soon as I feel up to it (still very tired) including all the tests, details and the conversations I had with the various amazing members of staff at Harefield.
One thing I can say is I am so so glad I made the decision to go there for my transplant, it seems they will bend over backwards and take risks on people who are as sick as me, I told them about my high temperatures and high CRP levels (infection markers) etc. But they were still happy to offer me lungs, these also offered me the option to wait out for lungs there were I can be monitored and looked after (as they were slightly concerned regarding Pap's way of doing things, like expecting me to go clinic every single week for simply a blood test and to collect another week of IV's) actually this concerned them because they want me doing as little as possible, yet a full tiring day, 3 hour round trip to see a doctor who says 'yes Kerry you are still unwell, see you next week' they've said they will speak to my team about that, so hopefully sort something out because I can't keep attending clinic every week like that, that alone could kill me down to exhaustion!! But that aside, they respected my decision about wanting to be at home if the worst case scenario happens and they also offered me ECMO to keep me alive should I need it. For those of you who watched Kirstie Tancock's documentary 'Love on the transplant list' (if you didn't watch it, WHY?!) Anyway, she ended up on ECMO after things took a very bad turn for her and she became extremely poorly, thankfully it kept her alive then her lungs came at literally the last minute and for those who don't know her, or her story, shes doing amazingly well and is a great friend of mine :) So if this happens to me and I basically nose-dive downhill I have that option and it's great to know I have hope and it won't necessarily mean goodbye Kerry.
Without the positive backing I felt I received yesterday from the legend that is Dr Carby, I feel safe in their hands and had I not gone to Harefield, I think, well I am pretty confident I'd be off the list now, as they would have deactivated me I would probably be 'being made comfortable' and I would most certainly be facing an early grave at just 21.
Obviously, I'm not stupid, I am positive but also very realistic, just because I am boosted up the list, it doesn't mean there are readily available lungs and there is still a chance I won't make it as I am still very sick. But that 'tiny glimmer of hope' I'd been speaking about in my recent posts, well it now feels slightly larger and I now feel I can grasp it with my hands, not just my fingertips and the light at the end of this horrid tunnel seems more visible now :)
Currently, I'm just resting up as I'm still very, very exhausted from yesterday, it was extremely tiring and I still feel like I could sleep for a week lol! But I'm back on here now and I am ready to start making some bracelets again and enjoy my Christmas Month! Thank you again for the love and Happy Xmas ;) xxx