The hardest decisions

So I wrote this a month ago and never got around to finishing it as ended up in hospital...

Well what can I say it's been a weird crazy emotional few months.  My head is all over the place and I'm facing some rough decisions. I know I need to make a plan but I just don't feel like I can right now. So it all started with my 3 day transplant assessment. I'd really got my head around everything as was feeling positive going into it. The 3 days were physically and emotionally draining but I expected that. I had so many tests done and lots of scary but important talks with the transplant nurses, coordinators, surgeon,  anethatist and the consultant. During  these talks they have to give you the bad as well as the good aspects to transplant. It's hard to hear all the risks and things that can go wrong but you have to know so you can make an informed choice.

Me doing one of the many lung function tests at my assessment

So apparently I did really well on my walk test and my lung function showed a little higher on their machines. Basically I am borderline for being considered. I am not considered in urgent need this instant and am running out of time as such. So good news I am a candidate there is nothing stopping me being listed which is great news as some people are not able to have one due to other medical issues or bugs they grow, on top of other reasons. Not so good news my anti bodies are higher than they told me last time which means I am most likely in for a longer wait as I am less likely to find a match. So basically if I had 0% or low anti bodies they wouldn't list me yet as benefit has to out weigh the risk and for example there is a 10% chance I'll die in the first 3 weeks. So because I could potentially wait a long time they will add me to the list. Now if it were straight forward and the doctor told me you will die soon without one I don't think I'd hesitate but that isn't the case here. It's a big life changing event not just for me but for my family and friends too.  So I went away to have a think and booked an appointment for a few weeks later. In those I went from saying yes let's do to no many times. Went to my listing talk and asked a load of questions I had thought of since the assessment. And was basically told that although I am not in desperate need right now I may also take priority over someone who has waited longer. Because if they have low antibodies they are much more likely to get another offer where I won't. So I could potentially be called in days or weeks after listing. I was fretting and they could tell I wasn't ready to make that decision right now. After talking it through with Neil and my dad I've decided to wait for now. I need longer to get my head around it all. I'm so scared I'll get called quickly. If I happen to be the 10% who don't make it I can't cope with the risk of dying now when I could of had a couple more years with these lungs. OK not good years but more time with my loved ones. It isn't fair that we have to make these decisions at 29 years of age. What is the right one? I'm so scared and frightened of dying but also the procedure to hopefully save me,  my heads a mess!

Now...
Well it's scary how things can change in 1 month. As I was writing this post I started to struggle more. Long story short ended up in hospital for 2 weeks on oxygen constantly and with high Temps and high Crp that was taking a while to come down.  Finally started to make progress and made it home but was struggling more than usual. Needing more oxygen and feeling unable to do much.

I wanted to feel better for my birthday as it was my 30th this year. This is a big deal for me. I see it as a milestone rather than another year towards old! Most people hate turning 30 I loved it. I MADE 30! When I was born survival age was about 12. I plan on being around for many more big birthdays too. I had a lovely day seeing friends and family and went out for a meal in the evening with some friends. I knew there was something planned on the Saturday but no idea what. So we get to my favourite cocktail bar and friends start arriving. Saying were having a meal and table booked for 8 etc. Then at 8 as head outside there's a stretch limo waiting for me! Was amazing went for a 40 minute drive. Was drinking bubbly and having shots. Then it pulls into a car park I know and all my family and friends are waiting for me outside the venue for my suprise party! Was an amazing suprise. Felt like a movie star stepping out of the limo to flashes and cameras haha. The night was amazing everyone had fun which is the main thing. I realised then how much I struggled. I managed to get around to thank everyone for coming and managed to dance for 4 minutes slowly then rest for 20! I can't wait to be able to dance all night with everyone else.

Me and Neil at my suprise 30th party!

Then on the Monday we went off on holiday for 4 nights with both side of our family to a mansion with hot tub, swimming pool and games room etc I relaxed whole time as wasnt well but was lovely anyway.

So this last month has sealed it for me. I am ready to be listed! As terrified as I am I'm sick of feeling like crap everyday. So I've got dentist in monday and as long as get clear I can be listed after my next appointment in a couple of weeks time!

Thanks for reading!