Harefield day! This is an extra special post just to update you on today’s developments.
I had my usual 6 monthly clinic appointment at Harefield today. We left just before 9am and drove up which took about 45mins. It takes quite a lot of planning with oxygen supplies etc but nothing compared to the last trip I did getting over here!
When I got there I met a couple of the transplant coordinators and nurses I know from before and they all commented how well I was looking and seemed pleasantly surprised that I was doing so well.
I did all my tests and gave my usual ‘gallons’ of blood (ok that is a slight exaggeration but it feels like it!) had xray and lung function tests and also an ECG and that was it for this time, nothing nasty! Then we went off and had some lunch in the cafe and then came back to clinic for 1pm.
We saw Dr Carby, (who is the main man), about 3pm and I really like him. I have met him a couple of times before and he is so nice and honest, very straight-forward. He could see the lung collapse on the xray but he agreed with Dr Lukszas advice and that it wasn’t a problem transplant wise. He also said that unfortunately my lung function is not any better than last visit which is slightly disappointing given I was quite unwell last time, but the good news is that it’s not any worse despite how ill I have been since.
Now comes the good bit: the bottom line is Dr Carby has always wanted to transplant me ASAP given my age and situation but the problem is (as we suspected) is that the surgeons are not picking me when the organs come up. This is because I look a lot worse on paper than in person. My low weight and recent hospital admissions and the late stage of my lung disease would make the surgeons think me unlikely to survive the operation and rehabilitation. However, Dr Carby is strongly of the opinion that this is not the case and feels I would do very well with a transplant. He is willing to recommend this to the surgeons and suggests given my new close location to the hospital that I come back next week to meet one of the surgeons so they can see this for themselves. Which of course we have agreed to. I’m very lucky to be getting this opportunity as I have been told before that the surgeons deliberately don’t meet recipients prior to transplant to make it an unbiased decision.
So we are waiting to hear what day next week I will go back but possibly monday or thursday. So fingers crossed. I’m really very pleased about this, obviously it’s still no guarantees but I really feel its promising progress- something we have been waiting a very long time for!
The drive back took a bit longer as got stuck in traffic and I’m very pleased to be home for an early night now. Will keep you updated as and when things happen xxx