This blog has followed my life with cystic fibrosis, having had two double lung transplants, being placed on ecmo a form of life support, learning to walk and talk and facing chronic rejection twice. Along side this I'm a fitness pole dancing instructor, aerial hoop and silks instructor and personal trainer.
Thursday was a tiring day, I did filming with ITV for westcountry new, updating everyone that I'm on the list and what that means. This will possibly be aired on Wednesday night, although that's not a defant yet.
Me all done up for ITV with my lush hairband Elly sent me in.
Friday I got to see my beautiful girl Kia, my nan and grandad brought her up to me and I went out to the car park and had hugs with her, she'd had a hair cut so looked gorgeous. Hers a piccy of my gorgeous girl.
Escaping the hospital yesterday, me and Stu drove round delivering wedding invites, just the ceremony invites at the moment (left), we have plans to deliver the evening invites (right) at a later date.
The invites are beautiful, the colors are in our wedding colour scheme and I think they make a gorgeous contrast. Stu will be wearing pink cravat and handkerchief and the groom party with be wearing aqua tie and handkerchiefs. My bridesmaid, my big Sister Kerrie is wearing a gorgeous aqua, Grecian style dress and my other bridesmaid Kia will be wearing pink and aqua bows. Theres going to be lots of pink and aqua accessories.
Anyway after the invites We Picked Kia up and went home to have some dinner, but by the time we got home I started to feel really unwell, I ended up with a huge temp, cuddled up in bed with kia and Stu, had dinner and came back to the hospital early. I crawled into the hospital bed, but kept on being interrupted all night with docs checking on me obs being done, x-ray and bloods. I felt so poorly, I hadn't had a temp in a couple of days so was upset to have one again even though I'm on 3 sets of IVs. I think I'm a bit better, but I think this is about as good as its going to really get. My Flem is still very thick and my chest is still full and my breathing feels not much better, I have days where I find it hard to walk a couple of meters and other days where I can manage it. I suppose the only thing that has really improved is the frequency of my temperatures. I'm still on 02 24/7 at the moment and feel uncomfortable off of it. I saw one of my docs this morning and he basicly said that I can expect to get regular temps with my lungs as bad as they are, it made me feel like I should shut up and get on with it, but then I suggested to my nurse that maybe next time I have paracetamol drip as its far more affective then oral paracetamol and quicker. I know these are thinks that I have to get on with but some simple things set in place would make it much easier to cope with, such as the IV paracetamol.
Tuesday, me and Stu are being picked up to go to and watch Russell Howard being filmed and have dinner with the team :-) how cool is that? His producer got in touch after the show and asked us if we wanted to go and watch a show. So I'm really looking forward to that.
Plans for later in the week are to head home on Friday! I hope the temp doesn't stop this, so fingers crossed.