Friday 29 June 2012

The moment a million chances may all collide

On Wednesday I went down to the Freeman hospital again to be re-assessed by the Cardiothoracic team with the aim being that they could then put me forward for a double lung transplant.

If you remember my last visit they had given me the all clear regarding my kidneys but wanted to check my heart out for any problem that might prevent me from being able to endure the operation should I be lucky enough to be put forward for transplant and a match was found. That wasn't all plain sailing due to a temporary anomaly but eventually the Cardiac docs ruled that my heart was in perfectly good shape for whatever they could throw at me.

So, with that final hoop having been jumped through I went down to Newcastle on Wednesday morning fairly sure that I would be put on the active list, but as I got closer to the hospital I remembered that I had felt the same way the previous times I had gone down too so was a little more guarded when I got there.

When I did arrive my room wasn't ready yet so we took the opportunity to get all the tests that they do when down for assessment out of the way while we were waiting for the room to be cleared. The breathing tests were as much fun as they usually are with some poor technician screaming at you to just push that last little bit out of your lungs while you're feeling like you're about to flake out. In that time I also did the endurance test where I walk up and down a corridor for as far as I can in the 6 allotted minutes. I got further than I ever have before on that test which came as much as a surprise to me as it did the physio's and doctors.

A plentiful supply of blood was taken, firstly from my veins to be sent away for all sorts of screening regarding tissue typing and for antibodies present so that should it come to pass they can get the best match possible for me, and secondly from my arteries to check the make up of blood gases present. That hurts a bit but I'm getting used to it now that it's been done so many times. I can now even point the doctor doing it to the right spot where my artery is on my wrist which saves them rooting about, which is where most of the pain stems from.

Having been down a few times before I knew that I would hear from the team the following afternoon so I spent the evening with friends that live in Newcastle coming to visit and then getting a decent sleep. I was more relaxed than I have ever been in a hospital as I was so sure by that point that my fears were unfounded and that the next day would provide the good news I had waited all this time for.

By the time the team actually came round I was actually having a peaceful nap and they had to wake me. I didn't mind in the slightest as I could quickly do the maths and see that there were far more staff in the room than in the two previous trips when they told me they had to do more investigations. This instantly said to me that it was positive news as you can spot surgeons a mile off and they would only be there if there was stuff for them to explain so I was buzzing instantly. My consultant told me he wasn't letting them leave the meeting they had just had without universal agreement that I would be put forward as a candidate for transplant. I'd waited just over 3 years to hear that news and it didn't disappoint. After his blurb about the protocol, which I will endeavour to go over with you some other time, I had a bit of time with the surgeon who went over the practicalities of the surgery and then the anaesthetist who went over her role in proceedings both during and post transplant regarding pain relief. She wasn't shy at telling me how much pain I'll be in but reassured me with the options available and which are best when looking at how the surgery has gone.

After that it was a matter of some paperwork regarding who I would find it acceptable to receive donor lungs from. After deciding that while it seems beggars can in fact be choosers I wouldn't be passing up any set of viable lungs because no matter what they would still be a massive improvement on the current set. This paperwork also included the choice to opt in to a clinical study into what they call ex-vivo lung profusion where they take harvested lungs and place them in a modified heart-lung bypass machine and oxygenate then as well as giving them a solution that can help them identify much more clearly which lungs are indeed viable and in doing so making more lungs available for transplant. I've asked a few friends to do a bit of reading on that as it's entirely optional and while my instinct is to go for it as it will increase my chances of getting new lungs I want some less biased eyes to look for reasons not to do it and if nobody finds any or if I don't agree that what they say is a flaw then I'll be happy to accept lungs from that study.

The next few weeks is going to be filled with bureaucracy and I'll be glad when it's all out the way and I can  enjoy officially taking my place on the active list. The hard work has been done on my part getting this far, now I just need to keep myself well enough to actually stay on the list long enough to get fixed and get my life back.

Wednesday 6 June 2012

Just when you're thinking things over.

I got out the house the other day to go to the cinema. It makes a massive difference to get out and do something that has nothing to do with hospitals. I went with my brother and my friend Stephen to see the film Prometheus. The three of us are big Alien fanboys so we were genuinely excited to see it and it didn't disappoint. It turns out the persistent chest infection I had last month was a full blown pneumonia so it's a good thing the antibiotics we picked to treat it was the correct one. Taking a tablet every day is infinitely preferable to having to stay in hospital and get IV antibiotics. These particular tablets don't make me feel as sick as some can either so I was very lucky all things considered. Not long ago a friends sister died from pneumonia and it serves as a reminder of how lucky I've been on that front. So I have a couple of weeks till my next monthly trip to the Beatson Oncology Centre and then it's only ten days till I go to see the transplant team in Newcastle again. They need a repeat bone density scan done but that shouldn't hold me back from going on the active transplant list.