Health is like money, we never have a true idea of its value until we lose it

Tuesday, 27 December 2011

Transplant thoughts and signing up

It's been a while since i wrote, for one reason or another I've been delaying this post but also been kicking myself thinking if i do get the call and the op does go ahead it will get pushed further and further away to a time it seems somewhat pointless ...

Well the day that was inevitable to come.... tried so hard to keep pushing it further and further away, yet still keeping in in arms reach just in case... 22nd June 2011 actively accepted on the Transplant list at the Freeman hospital in Newcastle

After numerous reviews back and forth every 3-6 months hoping i was too well to go on the list each appointment, my results seemed to slowly decline, i was referred at 16 so now being 22 at this point i hadn't done too bad keeping it at arms reach, i was told at the first referral i was expected to have maybe 2years without a transplant and about 5years with transplant as i stood at that time, so me being me determined to proove them wrong still feeling healthy compared to now, knew i wouldn't let this become true, so in my head i thought if i can last 2years on my old lungs, then I'd have an extra 5years with new lungs therefore extending life rather than diving in and regretting my choice (i suppose it was an enormous decision i just needed time myself to accept it and feel it was the right for me)... I felt well and was thinking if i got the operation tomorrow I'd only have 5years, i wouldn't even be 21 it didn't seem right.

 As some of you may know each transplant hospital has a certain criteria you have to meet, Freeman being one of the most strict, they give you as they describe a 'little window' where you are well enough to get through transplantation, but also ill enough to need a set of new lungs, sadly there are times people just miss this 'window' for one reason or another whether it be their weight or different bugs they grow making the operation too risky 

So basically knowing this information i didn't want to leave it too long and become an unsuitable candidate for transplant, but i didn't want it too soon either, after spending new year in hospital with swine flu and about 4 months in hospital i realised i aren't getting any better and if i wasn't careful i was going to miss the 'window' so prepared myself for my next appointment at Freeman (which didn't seem long after the extensive admission.) I was going to say yes to transplant, yes to being put on the active list, and how i hoped so much i hadn't slipped past the criteria, i had to go for 3days/nights to do all the original tests as it had been a while since they'd been done, on the 3rd day i got the results, I was well enough they wanted to make another appointment just to sign the consent forms for the operation and go over a few last things .. I was told that because of my height, blood group tissue typing i would possibly have a good chance of getting lungs within 6months.

At the moment i have only signed a consent form for a pair of lungs that are healthy as they are, there is also another consent form for reconditioned lungs where lungs that would not normally be used have been 'put on the rig' ie. cleaned up (given antibiotics if they had infections so they work as efficiently as a healthy pair) At the moment I'm in 2 minds whether to sign the extra consent form knowing there can be complications with these lungs, but also with close and careful monitoring they probably know more about a pair of lung that have been reconditioned than a pair that haven't... Also signing this consent form means i have more chance of receiving a pair of lungs, but with a bit of reserve time i feel i will wait until i feel necessary to sign that form, maybe then they'll have more information and results, as it's a fairly new thing at the moment

After signing up there was the 2hour drive home, time to put aside what had been said, relax hmm ... no chance of that, as soon as the forms had been signed i could get that call, which meant my mobile is my lifeline, one call could seriously change my life.. this meant going home to unpack my things from hospital trip number 1 and packing a bag for transplant, consisting of toiletries pj's comfy clothes/shoes if i get a call i need to grab this bag knowing everything is in it a set of up to date tablets fully explained so the doctors know what they're doing if I'm not able to tell them....Also the fact this big thing hanging over you almost the next time the phone rings it could be a new pair of lungs you could be in the bath in the middle of cooking or eating dinner and you have to grab your bag and go 

After getting home it didn't really seem to sink in properly, i suppose at this time they were only words only a piece of paper saying active etc it wasn't until i got a withheld call the enormity actually kicked in this could be my lungs, i almost made a sigh of relief when it was just prank callers but also the stress that split few seconds were, do i answer shall i leave it to ring  am i ready if this is my call....??

continued in next post...

Keep Smiling :D
Jess xx