The most bee-yoooooo-tee-ful selfie I ever did take.
This is a ventilator to help me breathe as the 'Blip' occurred on a Thursday night and they weren't able to put the trachy back in until Monday so I spent all of that time awake with a tube down my throat unable to speak, eat or drink again. Needless to say I was not happy. I had a laminated sheet of paper with letters on and I kept spelling out 'T-O-R-T-U-R-E' pahaha. Usually people are sedated on this thing so it wasn't the best weekend I'd ever had but Monday soon rolled around and the trachy was back.
It wasn't long until the speaking valve was back so I could talk and eat again and I progressed so well they removed all of my lines apart from the trachy and I was sent to Rowan Ward, which is the transplant ward. I was still having one to one nurses, people had to still gown up when they came in the room because of this bug and infection control and I had daily blood tests but things were a lot more relaxed here. There was an outdoor area just outside my room so I was able to do my physio outside which meant I was able to move around more and also sit outside as long as my medication wasn't due. I even got to eat my dinner out there. I had really lovely times outside with my family and friends too, including baby Florrie! I have lots of photos of them but I don't know if they'd want to be on here haha but as you can see I had a very VIP visitor too!
I was much happier when I was outside!
My Freddydog!
He completely ignored me but still, it was nice to see him! I was making progress in that I was able to move about more and the doctors were super happy with my new lungs so I should have been happy too but I wasn't. For the first couple of weeks on Rowan I'd had the worst anxiety and I couldn't even say what was causing it, I just felt so frightened. I kept crying so much, not just a little bit either - I'm talking proper ugly Kim Kardashian styley crying. I've never suffered from anxiety and panic attacks like that before, it was so scary and I feel so much for people who have it on a regular basis. I think it was a mix of the medication playing havoc with my brain still and everything just catching up with me. I'd began having a bit of anxiety back in ICU but this was something else and it was like I couldn't control myself - so not me. But I think it was not surprising looking back considering everything that happened!
It did ease off during the last week, I'm sure if I'd not been able to go outside as much as I did (I literally spent hours out there!) my anxiety would have been far worse and recovery would have been longer. I managed to walk and do basic tasks on my own without help or any kind of aids which felt amazing! Just the little things like getting off the bed or dressing by myself was such a relief. I'd also moved on from the zimmer frame and was using a walking stick when I walked outside. Then one of my favourite doctors came and got rid of the trachy for me, he took my photo to send to the Brompton to show them my progress as they'd only seen me on ECMO. Of course I'd be wearing the worst outfit in the world when he took it...I'm so ashamed!!
My family absolutely will never let me live this down!
I met the transplant clinic nurse, the pharmacist went through all my drugs with me and I began self-medicating - all things to help me get ready for home! A bit scary but I definitely felt ready, plus they were only a phonecall away if I had any questions or worries. So on the 8th September, just under two months after my transplant I was home! I had to come back the following Monday for clinic and I'll be going back there tomorrow for clinic again but being back in my own bed is amazing. Since I've been back I seem to have gotten stronger and every day am finding it a bit easier to do things. I'm still not back to my normal strength and have been having bad pain in my feet and legs but yesterday I walked down the road to the shop with Freddy, stick and oxygen free which just didn't feel real. There are so many 'pinch me' moments now and this is just the beginning of my recovery. Who knows what I'll be able to do this time next year?
I loved life before but now I appreciate it more than ever and I really do understand just how precious it is. I was so, so lucky to get my new lungs as so many don't get their second chance - it truly is the gift of life. I find it hard to put into words how thankful I am because nothing sounds good enough. Thanks to them and their brave family for agreeing to organ donation I now have a chance of a future and get to spend some more time with my loved ones. It's just an incredible thing and I'll always be so grateful to my hero donor.
I've done three mega posts on this but I still feel like I've missed loads out! It's been kinda draining to go through it all again but I'm still happy to answer any questions as best I can if you have any. But I'm sure I'll be talking about this in future posts too!
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