Saturday, 28 May 2011

Documentary, Feeling good and post transplant recovery

Yesterday me and Stu had a day off together, It was a bit of a rest day, We had the BBC documentary being filmed from 2pm till about 8pm. We took Kia for a walk and filmed us chatting and suggested topics for us to chat about. It was nice in a sense as it allowed me to hear some of Stu's thought and feelings that he perhaps wouldn't have said otherwise. I'm really looking forward to this documentary now, there seems to be alot of focus on my story and I really hope it can get people to sign the organ donor register. Its such a good opportunity for me to raise awareness and I think the guys filming it are really on board with the idea and want to help raise awareness to. :-) Yay

Health wise, well Iv come to the conclusion meropenium is good, I always seem to have a slightly better patch on it. I'm able to potter around the house at the moment and do a few things for my self, with the aid of oxygen obviously, I still feel the need to wear it 24/7 in able to do these things. The bi-pap at night is still a big plus and I feel so much more rested with it, so I think that's also helping the good patch. I also know that as soon as I finish the mero Wednesday I can expect a decline again, but hey ho that's the way it goes.

Chantelle is doing very well, she had to have a bronchoscopy and a clear out yesterday but otherwise doing well and told to move about more. The recovery period for transplant now is so intense, but it has to be, to stop infection and complications kicking in and to get the lungs up to full working capacity as soon as possible so that you  don't loose any function. I know when it comes along to my turn I am going to have to push myself so hard, I want alot out of this transplant and therefore I am going to have to work for it, I can't expect to just have a transplant and be well. I want to run marathons, pole dance, be super fit and me and my doc even said about doing a sponsored cycle ride together post TX, If i want all that I will have to work hard in the first few week the most. It scares me, I have so much anxiety over breathlessness that I don't want that to follow me over with me new lungs and hinder any recovery I do.

At the moment I don't understand the concept of not being breathless, Iv always had some degree of breathlessness, so not being breathless Is something I just don't understand. God It will be good.


  1. 1 year post transplant I still struggle with knowing what out of breath is normal and what's abnormal!! I always forget it's ok to get out of breathe sometimes :)

  2. Just to let you know that I recently found your blog and you made me realise the importance of signing the organ donor register - I signed up tonight.
    With best wishes for your future x

  3. I have CF too and I have registered for my other organs to be donated if acceptable. My husband (WOCF) has just renewed his driving license and I told him to make sure he registered himself that way so he did.
    You are such an inspiration and I hope that call comes so soon for you.

    Take care x