I am officially on the transplant list!

Well the title says it all really. As of 2 weeks ago I am now on the list for a double lung transplant. I know deep down its the right decision but it didn't make it any easier to make. I didn't know what I was going to say until I got to my appointment. But whilst I was sitting in the waiting room I looked around at some of the other pre transplant patients in clinic and saw how unwell they looked. They were hooked up to and on large amounts of oxygen. They were completely wheelchair bound and I don't ever want to get that sick. Recovery is so much harder the poorlier you are and the odds are better stacked towards you if you still have some strength and muscle when the call comes.

No one can tell you how you will feel embarking on this journey. My sister and many other people I have met online have been here but their experiences and feelings are their own. I feel like an outsider. A few other people I know have been desperate for the call to come and excited when it has. I'm terrified. Every time the phone rings I pause in my spot unable to move towards it for a second. A couple of times now I have got to the phone eventually and a withheld number is on the screen. I freeze again not wanting to answer it and when I do hoping it isn't the transplant coordinator on the other end! I actually considered not going on the list. I wondered whether I could truly live with the waiting and the anxiety it would cause. Then actually under go such a massive procedure. I'm not good with hospitals and pain. Just because I've had to deal with them my whole life doesn't mean I am not as scared of them as the next person. Which ironically certain people actually assume believe it or not. Because CF has always been my life they think its normal and perfectly ok for me. So they don't ask how you are or visit you when in hospital. Just because something is a normal part of your life doesn't make it 'normal'! But in the end I thought about my family and friends and the people I would be leaving behind. I realised I am not ready to die and am not going down without a fight. I am in the middle of making a 'bucket list'. And actually its not things to do before I die its things that I want to do to ensure I'm living life to the full. What do we call that?

So what else has been happening? Not much actually have a few things coming up though which are exciting. Starting with going to see Rhianna and then Beyonce in concert. Then we have tickets to the athletics anniversary games at Victoria park in July. I'm so excited I love athletics and have never seen anything like it by actually being there. Just watch it on the TV. Something new and fun to tick of my not bucket list! I used to struggle doing big days out like these as its to much for me. But as of this week I have a trusty friend to help me get out and about more. I now have a wheelchair. When my physio first mentioned the idea I was horrified! A young lady like me in a wheelchair no thanks. But actually its going to help me no end. Yes I can get out and about when I'm not majorly unwell but I cant walk far or it just takes forever. So this way I can go out spontaneously and not worry about whether my lungs can manage it. The amount of stuff I have found myself not doing because it will be to much means I'm sitting at home alone and not living! Life is for living even if it means your trusty friends have to push you around! Now if someone says lets go shopping for the day. I can say yes because I don't have to worry about walking and struggling. I will walk when I can and only use the chair when I hit my limit because I cant risk de-conditioning or I will go downhill quicker. But I'm excited for long dog walks with Neil in the summer again rather than sitting at home whilst he goes. So if you see me please don't stare like im a leper as it makes me feel more uncomfortable!

We are also in the process of re doing our whole living room. Something which I am excited about. It's a little project and gives me something to focus on for now. I've been trying to de manify it since I moved in 9 years ago and its finally being done wohoo! Just got the new sofa, doors going on this weekend, furniture delivered next week and then decorator is coming in 2 weeks time. Cant wait to go shopping for all the finishing touches!

So thats all from me for now I am just going to leave this link here so you can take a look and hopefully sign up to be an organ donor!
https://www.organdonation.nhs.uk/