National Transplant Week 2015

So Monday marked the start of national transplant week. During this week I see so many social media posts and articles in local and national papers from people all telling their stories to try to raise awareness and get more people signed up. It really brings about a sense of community and seeing everyone rallying together with 1 goal - to educate. I do wonder though for those people who haven't needed to witness the transplant world first hand do they see these inspiring stories and posts? Or do I see so much because I follow people involved in this journey so it is constantly in my newsfeed? That's why we need to get people re tweeting and sharing and trying to reach the people out there who haven't needed to think about it yet. This year saw a fall in the overall numbers of donors for the first time. This shocked me to say the least as this is going backward not forward and there are more people on the waiting list waiting for that call.

I say it to everyone I see and have the conversation with. Talking about it with your family is the most important thing you can do. Telling your family your wishes because if the worst was to happen the decision falls on them to agree and they can override your wishes. They are grieving, in shock and suddenly they are asked to donate your organs and if they didn't know what you wanted they may say no. 

This year feels strange to me than any other before. I spend a lot of time talking about organ donation and writing about it etc. but this year is different. I'm looking at it all from a kind of different perspective. This time my sister is now on the other side of transplant. So that's such a relief and to witness first hand the greatness of the gift of life. But I'm also looking at it as now it's nearing my turn. I'm closer than ever before during the process so I see things differently to previous years.

So last week I had my follow up with Papworth about transplant. Things haven't been going to plan recently. It's amazing how no matter how stable you feel things can just go bam with CF and suddenly you feel worse than ever. I bought a bike a month ago and baring in mind I haven't riden a bike in 15 years and my state of health I managed 5.5 miles of Pitsford Resivoir so I was super happy about that! I had also been going to our local athletics track with Nicki and managing to jog the 100 metres slowly but managing! Nicki is in training now she's got her new lungs and if all goes to plan is hoping to join the team and compete in the transplant games in Liverpool next summer. How amazing is that! So doing all this exercise feeling pretty good then suddenly just feeling breathless. Oxygen sats lower even at rest and plummeting during exercise. So have been using my oxygen more and more rather than just overnight. Just finished a 2 week course of ivs was hoping that would sort me out but hasn't. So think I'll be having a 3rd week when see the team next week.

So anyway Papworth wernt sure what to make of me as things had been great up until the week before my appointment. So they want to see whether I bounce back like I have done this last year or so from whatever is going on now, before they rush and get me in for the transplant assessment. So I've got another appointment in 2 months so we will know then whether I recover or not. If I stay as I am needing oxygen more and being breathless I will more than likely be booked in for the 3 day assessment. Doesn't help with the weather getting colder because as October/November come about I won't be biking or walking to much outside as to cold. Plus I'm so extremely terrified of catching anything now since having the flu in the new year almost finished me off. I may stay indoors for the whole of winter.

Even though ive felt pretty rough this last few weeks I managed to get to the Foo Fighter concert finally and had an amazing time. They were incredible live. Even though come the evening it was bloody freezing and I had like 6 layers on. Nothing was going to spoil it. Another thing to tick of my bucket list in my head. I call it a bucket list as its a list of things I want to do in my life. Not because im planning to die anytime soon and want to get it all in quickly. Many of the things on my list I cant do with these lungs anyway. Many involve travel and super lung power so I will get them ticked off once I get a new pair of lungs (as im being positive and will definitly get my chance when my time comes :)) I also had a lovely day out at legoland with my sisters and brother and neices and nephews. That was a fun day think I enjoyed it more than they did!

Also we booked our wedding for summer 2017! Lets just say its difficult trying to plan so far ahead when you have no idea what your state of health will be. But you only live once I wont let CF take this away from me too. Ill blog about this next post.

Pro bikers on our new bikes!