Wednesday, 7 November 2012

Birthday Surprises

I don't know where to start. Maybe by saving what I'm writing every other sentence as the Internet connection in Papworth is a little temperamental to say the least and I don't want to keep having to write it all out again.

Little did I know that by the time I wrote this not only would I be older and America would be getting used to another four years with Obama but I would be within a inch of being listed for transplant. My head is still in a whirl and I keep having to ask the nurses if I heard correctly.

So what happened?

Well I set off to work Monday morning bag of cakes at the ready, as it was my birthday and taking cakes in is what you do, and looked forward to another stress filled four days before the bliss of my next day off and a good chill out. I'd just returned from a break when my mobile started vibrating in my pocket. I looked at the screen and it said withheld number so I very nearly turned it off but something made me answer it. To my surprise it was Ann, one of the transplant nurses, asking if I could come in for assessment there and then and if so could I get there by half past one. After a moments hesitation, well it was my birthday, I decided to go for it and agreed.

A quick chat with my supervisor and I was on my way, while Peter rushed around at home packing my bag. I grabbed a sandwich while I unpacked and repacked my bag and then we were off. We made it with ten minutes to spare and then it was a complete whirl. ECHO, ECG, lung function tests and the dreaded bike test. By the time I hit the ward I was shattered but I was welcomed by a chorus of 'Happy Birthday' from the nurses and made to feel extremely welcome. I was told that they were due to do blood tests, another armful, but as it was my birthday they would leave it until the morning. I was them presented with a large mug, a proper mug that is, of sweet tea and some chocolate biscuits and left to settle in. Peter went home and I set about letting my sons, family and friends what had happened.

The next day I was woken early and by eight was on my way down for an x-ray, a walk test and a repeat of one of my lung function tests as they wanted to check a result. Back on the ward and the dreaded bloods and then a visit from various people who wanted to check out my mental state, I'm not mad despite all evidence to the contrary, my diet, and what help I'd have post transplant. They were most impressed that I have a trainee paramedic in the family, that 'would be useful' apparently.

The afternoon was taken up with the 'transplant talk' where it was made very clear that transplant means a life long commitment and lots of pills. I pointed out that I already have a lifelong commitment to my IV pump and would gladly swap that for a lifetime of pill taking, tests and monitoring as at least in between I could do things. I was told I had a good attitude and passed on to the consultant.

I was slightly disheartened when she shook her head and said 'I don't know what's going on here'. My thought were instantly that at the very least I would need more tests, possibly horrible one but I need not have worried.

'I have been through all the test results that we have done, and the ones Harefield and the Brompton have done, and I can't find a single reason why Harefield turned you down.'

My jaw nearly hit the floor as she went on to say that I do not need a new heart as mine is in remarkably good shape for someone in my condition. In her opinion I am as good a candidate as any one else and she would happily list me for a bi-lateral lung transplant. She has phone and rung Harefield several times asking as to why they rejected me and read out a letter she'd received saying 'after due consideration we are refusing transplant because we consider Hazel to be of too great risk and chances of a good outcome as very poor.' However they have consistently refused to give an exact reason, how strange!

Papworth see it entirely differently and although I do carry a higher risk because of my previous surgery, it is not insurmountable and they've successfully transplanted worse. The surgeons will still have to review all my scans and might order a different scan so they can see where all the old scaring is and try to determine whether they will need to alter a few things to work round it but that is something they would have to do with anyone with previous surgery.

The other fly in the ointment is my weight. My BMI is just under 18 and ideally they want me up to a 19 or 20 to be comfortable as it would drastically improve my recovery. She said that if I couldn't put the weight on naturally then they would have to put a tube into my stomach and feed me through that as I slept each night. I need no other motivation and one of my future appointments will be with the dietitian to come up with a plan. The trick is going to be to put on the weight without clogging up my arteries. My diet is extremely healthy but there just isn't enough of it. I joked about McDonalds and got a stern look along with the comment, 'let's not undo all the good work shall we'. Point taken.

So after I've seen the surgeons, hopefully next week, and had the few remaining tests they are hoping to have me listed by Christmas. The consultant's parting shot was 'with you we can't afford to hang around, I want you on the list as soon as possible.' Fine by me.

So I'm sitting here waiting for discharge with my head reeling, still trying to grasp what exactly happened. All I can say is this years birthday is going to be a hard one to forget.