Well today was supposed to be the end of the world but for me it is the beginning of a new life. Yes almost a year to the day after my initial referal I have finally made it onto the transplant list and it is as though the whole world has been lifted off my family's shoulders.
We got up at the unearthly time of 0630 as we had to be at Papworth by nine to meet Mr Dunning the surgeon in charge of saying 'yea' or 'nay' and we really didn't want to be late. Although it is only a forty minute drive from my house to the hospital the journey was taking place during a dark, wet, rush hour and involved travelling the A6 and the A1, both notorious for rush hour accidents.
The journey was unremarkable though we hardly spoke. I'd had a sleepless night and so with the remnants of my infection still clinging on I wasn't at my best. Try as I might I just couldn't be positive and by the time we arrived I'd convinced myself it was going to be bad news and talked myself into the old 'well I'm no worse off' way of thinking. The hospital was in chaos when we arrived as the diagnostic center had flooded so we had to paddle to the transplant clinic which was packed with patients from the other department. Luckily the transplant clinic was operating normally though the lung functions, x rays and ECG's were being conducted elsewhere in the hospital as the rooms used for them were out of action. I gave my name at the desk, was offered a mince pie and sat down to wait.
I was surprised to find a really pleasant man waiting for me. I always envisaged surgeons as being rather haughty and aloof and, well, self important but this man was anything but, he greeted us like old friends and then got quickly down to business. He'd 'researched' me and his findings had been a 'bit of an eye opener'. This worried me, what had they found and did it mean no transplant. Unbeknown to me he had painstakingly searched for details of my previous surgery and unlike loads of others found them. The operation way back in 1965 was complicated and has left considerable scaring. My heart sank, this must mean that whatever they did would most certainly make transplant impossible so I was astonished when he went on to say that he'd be delighted to perform the transplant for me. I was so surprised I squealed.
Back down to earth and the facts were laid out. Transplanting just lungs is going to be difficult, not impossible but difficult. The previous surgery has caused scaring and lesions in just the wrong places, not much but enough to cause heavy bleeding if not dealt with properly. My aorta and pulmonary artery have also thinned so again this could cause heavy bleeding, etc, etc, to cut a long story short I'm going to be 'challenging'. The final decision is this, I am to be listed for both heart/lung and bilateral lung transplant. He would much prefer the heart/lung option but if a good pair of lungs come my way he isn't going to turn them down. I'm not going to have a 'clam shell' incision, he is going in through the sternum whichever op I have because while he is in there he is going to strengthen my bits and pieces.
My chances are very good. My underlying fitness, all that swimming, weightlifting and pounding the pavements have come into their own, is as good as anyone could hope for so I should recover quickly. That along with my 'very' positive attitude makes me an ideal candidate apparently, and with that I was presented with the consent forms. We were then shuffled out into the waiting room to wait to see the transplant co-ordinator and get the 'do and don't' talk and sign yet more paperwork. In one hour I'd gone from feeling 'what's the point' to wanting to jump up and down screaming.
The rest of the morning was a blur but I got the main points...
Keep yourself as fit as possible.
Keep your weight steady, try and put some on if you can but certainly do not lose more.
Ring once a month to let us know of any changes.
Ring us if you are poorly
Ring us if you are going away
Ring us when you get back
When the call comes DO NOT DRIVE YOURSELF, we will send a car for you.
Keep a small bag of essentials by the front door that you can grab as you leave.
Make sure you can be contacted at all times.
When we finally got out of the hospital I jumped up and down shrieking like a toddler on Christmas morning. I just could not believe my luck. Good things just don't happen to me, certainly they haven't this year so I felt that I deserved to be excited.
We stopped off at a pub on the way home and I tucked into baked Camembert, one of my favourites, steak, chips and parsnip puree, all washed down with fruit juice. I couldn't manage a sweet but as soon as we got home I poured myself a small glass of Baileys as a very special treat. Then it was let everyone know time. I have to say the reaction from my family, friends and colleagues has been awesome. All have been so happy for me, some commenting that they thought I deserved it, which was nice.
And so now the real waiting begins. In one of my early posts this year I stated that I felt that 2012 was going to be my year. Well I was wrong in that statement. It has been, for the most part, absolute hell. I've lost a lot of friends this year, good people who stood by me in the early years and never turned their back on me no matter how hard I tried to push them away. I have gained new friends and have come perilously close to loosing one a couple of weeks ago. Sita is fighting but is still very poorly and my hope is that she is well enough to see her children at Christmas. Emotionally I've been on top of the world and down in the depths of despair and every emotion in between. There have been times when I thought I couldn't do it anymore, when I've been so close to cracking it would have been easier just to step over the line than fight back. Physically I've continued my downward path, admittedly more slowly than in previous years, but still this illness marches on, slowly sucking the life out of me and there is nothing worse than watching yourself deteriorate. Even professionally the path has been full of potholes and I've hit every single one, some more than once and as a result there will be things I can never fully repair.
However despite everything that has been thrown at me, the infections, cancer scares, rejections, false hopes and disappointments I'm still here and so in that respect and that respect alone I suppose it has been my year. Now I have a future to look forward to, something to aim for and although I know it could be a long wait and there will be a few disasters along the way may be, at last and for once, things might just be turning my way.
And now back on planet earth I have an oven that needs cleaning and ice cream to make.
We got up at the unearthly time of 0630 as we had to be at Papworth by nine to meet Mr Dunning the surgeon in charge of saying 'yea' or 'nay' and we really didn't want to be late. Although it is only a forty minute drive from my house to the hospital the journey was taking place during a dark, wet, rush hour and involved travelling the A6 and the A1, both notorious for rush hour accidents.
The journey was unremarkable though we hardly spoke. I'd had a sleepless night and so with the remnants of my infection still clinging on I wasn't at my best. Try as I might I just couldn't be positive and by the time we arrived I'd convinced myself it was going to be bad news and talked myself into the old 'well I'm no worse off' way of thinking. The hospital was in chaos when we arrived as the diagnostic center had flooded so we had to paddle to the transplant clinic which was packed with patients from the other department. Luckily the transplant clinic was operating normally though the lung functions, x rays and ECG's were being conducted elsewhere in the hospital as the rooms used for them were out of action. I gave my name at the desk, was offered a mince pie and sat down to wait.
I was surprised to find a really pleasant man waiting for me. I always envisaged surgeons as being rather haughty and aloof and, well, self important but this man was anything but, he greeted us like old friends and then got quickly down to business. He'd 'researched' me and his findings had been a 'bit of an eye opener'. This worried me, what had they found and did it mean no transplant. Unbeknown to me he had painstakingly searched for details of my previous surgery and unlike loads of others found them. The operation way back in 1965 was complicated and has left considerable scaring. My heart sank, this must mean that whatever they did would most certainly make transplant impossible so I was astonished when he went on to say that he'd be delighted to perform the transplant for me. I was so surprised I squealed.
Back down to earth and the facts were laid out. Transplanting just lungs is going to be difficult, not impossible but difficult. The previous surgery has caused scaring and lesions in just the wrong places, not much but enough to cause heavy bleeding if not dealt with properly. My aorta and pulmonary artery have also thinned so again this could cause heavy bleeding, etc, etc, to cut a long story short I'm going to be 'challenging'. The final decision is this, I am to be listed for both heart/lung and bilateral lung transplant. He would much prefer the heart/lung option but if a good pair of lungs come my way he isn't going to turn them down. I'm not going to have a 'clam shell' incision, he is going in through the sternum whichever op I have because while he is in there he is going to strengthen my bits and pieces.
My chances are very good. My underlying fitness, all that swimming, weightlifting and pounding the pavements have come into their own, is as good as anyone could hope for so I should recover quickly. That along with my 'very' positive attitude makes me an ideal candidate apparently, and with that I was presented with the consent forms. We were then shuffled out into the waiting room to wait to see the transplant co-ordinator and get the 'do and don't' talk and sign yet more paperwork. In one hour I'd gone from feeling 'what's the point' to wanting to jump up and down screaming.
The rest of the morning was a blur but I got the main points...
Keep yourself as fit as possible.
Keep your weight steady, try and put some on if you can but certainly do not lose more.
Ring once a month to let us know of any changes.
Ring us if you are poorly
Ring us if you are going away
Ring us when you get back
When the call comes DO NOT DRIVE YOURSELF, we will send a car for you.
Keep a small bag of essentials by the front door that you can grab as you leave.
Make sure you can be contacted at all times.
When we finally got out of the hospital I jumped up and down shrieking like a toddler on Christmas morning. I just could not believe my luck. Good things just don't happen to me, certainly they haven't this year so I felt that I deserved to be excited.
We stopped off at a pub on the way home and I tucked into baked Camembert, one of my favourites, steak, chips and parsnip puree, all washed down with fruit juice. I couldn't manage a sweet but as soon as we got home I poured myself a small glass of Baileys as a very special treat. Then it was let everyone know time. I have to say the reaction from my family, friends and colleagues has been awesome. All have been so happy for me, some commenting that they thought I deserved it, which was nice.
And so now the real waiting begins. In one of my early posts this year I stated that I felt that 2012 was going to be my year. Well I was wrong in that statement. It has been, for the most part, absolute hell. I've lost a lot of friends this year, good people who stood by me in the early years and never turned their back on me no matter how hard I tried to push them away. I have gained new friends and have come perilously close to loosing one a couple of weeks ago. Sita is fighting but is still very poorly and my hope is that she is well enough to see her children at Christmas. Emotionally I've been on top of the world and down in the depths of despair and every emotion in between. There have been times when I thought I couldn't do it anymore, when I've been so close to cracking it would have been easier just to step over the line than fight back. Physically I've continued my downward path, admittedly more slowly than in previous years, but still this illness marches on, slowly sucking the life out of me and there is nothing worse than watching yourself deteriorate. Even professionally the path has been full of potholes and I've hit every single one, some more than once and as a result there will be things I can never fully repair.
However despite everything that has been thrown at me, the infections, cancer scares, rejections, false hopes and disappointments I'm still here and so in that respect and that respect alone I suppose it has been my year. Now I have a future to look forward to, something to aim for and although I know it could be a long wait and there will be a few disasters along the way may be, at last and for once, things might just be turning my way.
And now back on planet earth I have an oven that needs cleaning and ice cream to make.
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