I'm never one to tempt fate but I thought it was probably safe for me to blog now. Those of you who don't know, I had the flu, this flu then turned into pneumonia. I had a lung function of 12%. This started around the beginning of November and after a very frank, honest clinic appointment I was told this could be the end of the road for me, pneumonia and flu (particularly in Winter) are extremely dangerous for people with CF, but even more so for those waiting for transplants or who have low lung function, I check all those boxes and I knew once I had these it was the worst possible news. The only thing I had to cling onto was the fact I was still on the transplant list, however, due to said evil bugs I had very high temperatures, around 40 degrees, high infection levels and low oxygen levels, I was warned by my CF consultant if I was called for a transplant I could be deemed unsuitable for transplant as high temps and high infection levels (CRP) are big contributing factors when they are deciding if the transplant will go ahead or not. So that glimmer of hope I had about getting my new lungs had vanished, I was down in the dumps and petrified however my hope was restored at my 6 month transplant appointment. The transplant Dr told me as I was so poorly, I am on deaths doorstep basically, so unless my temp and CRP were completely unbelievably bad, I would definitely be transplanted because I'm going to die anyway, so why not take the risk, it was very reassuring to hear that I'm still eligible for transplant and not too sick, they asked if I wanted to be admitted into Harefield and wait for my transplant, as I'd been placed on the urgent list (yes, it could happen any minute now!!) anyway, I was also offered ECMO which is a machine that would keep me alive and is used as a bridge to transplant for those as sick as I am, however, Christmas is a very special time of year where I want to be with my loved ones, eating copious amounts of food and enjoying Xmas at home, I've never been in hospital over Christmas and unless it was for transplant I didn't plan on starting this year! Stubborn, old, determined me :) of course once all the fun and festivities are over I may consider going in if my call hasn't come by then of course! Christmas can wait if it means I'm getting new lungs!
Of course I'm extremely sick, my lung function has come down to just 8% which is about 0.25 L considering there is 0.33L in a can of coke, I'm barely functioning on anything at all, but and this was the main reason for blogging. I'm still alive! I was told in clinic that day almost 2 months ago by my expert CF consultant there was a chance I wouldn't make it to Christmas, also Josh and I were advised it was time to have our quick, plan B wedding - but this made me all the more motivated to get to Xmas. We did make arrangements though and decided to have a Christmas month, Josh and I have basically given each other our gifts throughout the month just in case I didn't make it to Christmas day, but I think it's now finally safe to say, I've made it :) its the 22nd December now, so just 3 days to go, this is why I started the blog about not wanting to tempt fate but 3 days, I've survived 2 months I can last another 3 days.
During this time I have had a few respiratory arrests which are extremely scary, I've stared death in the face each time I have one of these arrests, like a heart attack but of the lungs, I basically stop breathing, go blue, oxygen levels drop and it's just generally very scary and a traumatic thing to go through. The last 3 have been extremely serious though and even more difficult because my body is weak from the evil bugs, my failing lungs are exhausted and I'm totally incapable of bringing myself out of these arrests now, I had about 5 but I would make it through, scary but I got through them, now with such a low lung capacity and very little strength left in my body, fighting my way out is very hard. Without the help of breathing machines, very high flow rates of oxygen and a sheet battle of will and determination I have got through them, the last one I had was about 5 days ago and I honestly thought that was the end for me, I thought yes the doctors were right I won't make it to Christmas, my time has come, but somehow, I got through it and I'm obviously relieved however I'm now extremely scared, I mean petrified, if it happens again because this time, I might not be so lucky. Just keeping everything crossed my call and my perfect set of shiny, brand-new lungs come before another attack.
So I just want to say, I made it to Xmas despite medical professional opinions, as I said they just make me more determined to outlive whatever expected date they give me, I've baffled them many times (particularly with my weight) why not baffle them again, 12% lung function and a weight of 54kgs + pneumonia and flu = 8% lung function and 53kgs, I have managed to stay stable weight wise, yes my lung function has dropped but as long as there is still 1% in my lungs, I will use it to fight my not-so-little butt off and continue fighting CF, awaiting my call and living in hope not fear !
Thank you to everyone for the overwhelming support, the lovely messages, comments, emails, status dedications etc. if you in anyway have thought about me lately - thank you. It could've been thanks to all your thoughts and positivity that pulled me through my last respiratory arrest. Thank you Thank you Thank you! Every single message however long or short, means so much to me and puts a huge smile on my face and keeps that little sparkle in my eyes sparkling, the beat in my heart beating and the breath in my lungs breathing.
I love you all, have a fantastic Christmas everyone and I hope you get everything you dream of and more :) I really hope my next blog will be saying I have received my transplant. If not it will probably be me blabbing on about Christmas :) I am still very poorly and I'm still living on a knife edge, but I'm going to try my best to enjoy Christmas, as morbid as it sounds, it could very easily be my last, but I'm hoping it's my last with these dying lungs and not my last living. Next year I hope I can look back at this post and use it as future comparison, to see how great transplant is and what a miracle it can be.
I've said it so many times but seriously, please if you haven't already, please consider being an organ donor by signing up to the donor register. I need a miracle right now, I need a hero - One day, you could be that miracle, you could be somebodies hero, what better legacy to leave behind than that.
Sign The Donor Register
Thank you for reading and have a very Merry Christmas.