I am sat in the kitchen preparing the vegetables and lamb for the dish I'm cooking and all feels quite content and normal, except for the fact that it isn't any ordinary day in some ways for our family, we have just reached another big landmark in my transplant journey this morning. It is exactly two years since I was listed for my transplant and put on the active transplant list. I say 'active', but for us this doesn't really seem to ring very true.
As I am sitting here going about my mundane business of chopping up the vegetables, my mind drifts from ordinary thoughts like Christmas to what I imagine to be the busy world of 'transplants'.
Doctors, nurses and whole teams busying about their patients, saving lives; someone picking up the phone to hear the both exciting and frightening news that a match has been found; ambulances blue lighting in the dead of night; beeping, busy intensive care units; visiting and waiting relatives; and most of all I can't leave out the thought that somewhere, amidst all this activity, is a devastated family somewhere, making the biggest decision they have probably ever had to face and granting permission to give the gift of life; everyday people's lives being changed forever one way or another. This is going on up and down the country.
I stop still and pause for a moment: 'Will this ever be me?' 'Will a call come to say a match has been found ever happen?' 'When might it happen?' 'Will I feel ready?' Will my family cope?' 'Will it ever happen?' 'What if it doesn't?'
I laugh to myself and think - same old stupid and silly questions that are never answered yet keep popping in my mind, time and time again and have done for two years now - I should really be used to it by now. Somehow though the longer it goes on, the harder it is and you can never get used to it. There is no control over the illness and what it decides it will do and when and there is no control over the events it will take to change things and added to that, there is no control over whether things will be better or worse afterwards. Yet I know for me I would rather continue this wait than just let this illness take its course, as it is only going to go in one direction and accepting the offer of a transplant is the only way I can see to give me some control back and take the only chance there is on offer to get a better quality of life.
I check the tagine and begin to stir in some spices and then I check myself as my thoughts are lost as my mind flashes back to some of those very frank conversations I had with the transplant team two years ago. They are still fresh in my mind as though it happened only yesterday. They were so life changing. They spoke gently of my poor prognosis and offered me a heart and double lung transplant as a way forward to better my prognosis and improve my quality of life. They did tell me that an average wait for a heart and double lung transplant is two years; they did lay it on the line that it may be a long wait; however, the transplant surgeon then told me that given my height, weight, antibodies and blood group, he would confidently say that it would probably only take up to six to nine months to get a match.
I recall Rob literally nearly falling off his chair at this information; we were trying to absorb all they had been telling us and we weren't quite ready for the thought of this happening so soon. We much preferred the thought of it being a long way away, somewhere on a hazy horizon, hovering itself further away from us as long as I could remain stable, but still floating somewhere out there, offering some comfort and peace of mind.
I am glad we were prepared like this, once you are on the active list, you need to be ready mentally for that call to come out of the blue at every minute of every day, at any time and at any place. We have always been so well prepared from day one, but this in turn has taken its toll and made the wait feel long, there has got to be some limit as to how far you can endure what is this sheer mental anguish of being in a state of constant alert. Still, we have to be prepared.
During all this time I know I have beaten the odds that were against me for now, somehow amongst all those prognosis statistics that are thrown at you during transplant assessment, I've been one of those lucky few who manage to quietly slip through that net of numbers and continue softly chancing my good fortune; however, there is no taking away the fact that Pulmonary Hypertension is a life threatening disease, my own disease is still unchanged and severe and the medication options left are minimal.
My dish is now simmering and cooking on the stove, wafts of cinnamon, paprika, ginger and tumeric mingle with aromas of apricots, lamb and honey and as I soothingly stir the ingredients, my mind meanders to where we are now and just how far we have come.
So two years have passed now and we have reached the place that felt a long time coming when I first went on the active transplant list. Two years, the bench mark. So it is no ordinary September morning, it is a watershed, a pivotal moment amongst what is a routine family day. After all the bumps and bruises; ups and downs; sadness and loss; enjoyment and fun and challenges of illness and waiting on the transplant list, we have reached the destination we have been travelling towards for the last few years. At the same time we know somehow that we haven't managed to get there yet. The boundaries have shifted like sand, to where I don't know yet: another hour; another day; another week; another month; another year... No one knows do they? No- one can tell us, can they? Every time we have moved a few months further on, the future we so desperately need seems to move in parallel with us, staying tantalisingly the same distance away.
I had no idea where I might be and what I might be doing on this day two years ago when I was handed a future of uncertainty, laid out bare as though on a plate, stark and clear. Here I am though, making plans and cooking for my friends. In fact it's probably one of the finest destinations in life that I could have arrived at after all, following what I was told and the poor prognosis I was given. When I stop and really think, it was what I wished for more than anything, just to still be able to be with my family, making plans, meeting up with friends and just doing so many of those ordinary things I once took for granted. Things that I value now more than anything else. I realise that all those ups, downs; bumps and bruises; sadness and loss; enjoyment and fun and daily challenges is called living life and I am blessed I am still able to do so.
So we will carry on doing what we have learned to do best, mixing the very ordinary with the exceptionally extraordinary. Trying hard to live in the moment; making most of every minute; trying hard not to think too much about the future. Transplant is all about prolonging prognosis and improving quality of life: so far I've already achieved the best outcome for now, I've managed to remain stable against all the odds, the longer I stay stable, the longer I may wait, but the longer I am continuing to enjoy life before the next stage arrives. The transplant still hovers on the horizon, just as we wanted it to in those earlier days quietly offering some comfort and another path. One day I hope it may move nearer towards me while I remain stable and not me towards it should my condition deteriorate.
Somehow I know the wind of change will blow when it is good and ready and not a moment before.
I return back to my cooking, casually adding a few more herbs and spices to the lamb tagine, it is nearly cooked and I'm back to the present, where I should be and belong. Rob is back and unpacking all that last minute shopping. It's nearly time for our friends to arrive. Life feels content and good and normal and ordinary. This weekend is going to be another good one...
As I am sitting here going about my mundane business of chopping up the vegetables, my mind drifts from ordinary thoughts like Christmas to what I imagine to be the busy world of 'transplants'.
Doctors, nurses and whole teams busying about their patients, saving lives; someone picking up the phone to hear the both exciting and frightening news that a match has been found; ambulances blue lighting in the dead of night; beeping, busy intensive care units; visiting and waiting relatives; and most of all I can't leave out the thought that somewhere, amidst all this activity, is a devastated family somewhere, making the biggest decision they have probably ever had to face and granting permission to give the gift of life; everyday people's lives being changed forever one way or another. This is going on up and down the country.
I stop still and pause for a moment: 'Will this ever be me?' 'Will a call come to say a match has been found ever happen?' 'When might it happen?' 'Will I feel ready?' Will my family cope?' 'Will it ever happen?' 'What if it doesn't?'
I laugh to myself and think - same old stupid and silly questions that are never answered yet keep popping in my mind, time and time again and have done for two years now - I should really be used to it by now. Somehow though the longer it goes on, the harder it is and you can never get used to it. There is no control over the illness and what it decides it will do and when and there is no control over the events it will take to change things and added to that, there is no control over whether things will be better or worse afterwards. Yet I know for me I would rather continue this wait than just let this illness take its course, as it is only going to go in one direction and accepting the offer of a transplant is the only way I can see to give me some control back and take the only chance there is on offer to get a better quality of life.
I check the tagine and begin to stir in some spices and then I check myself as my thoughts are lost as my mind flashes back to some of those very frank conversations I had with the transplant team two years ago. They are still fresh in my mind as though it happened only yesterday. They were so life changing. They spoke gently of my poor prognosis and offered me a heart and double lung transplant as a way forward to better my prognosis and improve my quality of life. They did tell me that an average wait for a heart and double lung transplant is two years; they did lay it on the line that it may be a long wait; however, the transplant surgeon then told me that given my height, weight, antibodies and blood group, he would confidently say that it would probably only take up to six to nine months to get a match.
I recall Rob literally nearly falling off his chair at this information; we were trying to absorb all they had been telling us and we weren't quite ready for the thought of this happening so soon. We much preferred the thought of it being a long way away, somewhere on a hazy horizon, hovering itself further away from us as long as I could remain stable, but still floating somewhere out there, offering some comfort and peace of mind.
During all this time I know I have beaten the odds that were against me for now, somehow amongst all those prognosis statistics that are thrown at you during transplant assessment, I've been one of those lucky few who manage to quietly slip through that net of numbers and continue softly chancing my good fortune; however, there is no taking away the fact that Pulmonary Hypertension is a life threatening disease, my own disease is still unchanged and severe and the medication options left are minimal.
My dish is now simmering and cooking on the stove, wafts of cinnamon, paprika, ginger and tumeric mingle with aromas of apricots, lamb and honey and as I soothingly stir the ingredients, my mind meanders to where we are now and just how far we have come.
So two years have passed now and we have reached the place that felt a long time coming when I first went on the active transplant list. Two years, the bench mark. So it is no ordinary September morning, it is a watershed, a pivotal moment amongst what is a routine family day. After all the bumps and bruises; ups and downs; sadness and loss; enjoyment and fun and challenges of illness and waiting on the transplant list, we have reached the destination we have been travelling towards for the last few years. At the same time we know somehow that we haven't managed to get there yet. The boundaries have shifted like sand, to where I don't know yet: another hour; another day; another week; another month; another year... No one knows do they? No- one can tell us, can they? Every time we have moved a few months further on, the future we so desperately need seems to move in parallel with us, staying tantalisingly the same distance away.
So we will carry on doing what we have learned to do best, mixing the very ordinary with the exceptionally extraordinary. Trying hard to live in the moment; making most of every minute; trying hard not to think too much about the future. Transplant is all about prolonging prognosis and improving quality of life: so far I've already achieved the best outcome for now, I've managed to remain stable against all the odds, the longer I stay stable, the longer I may wait, but the longer I am continuing to enjoy life before the next stage arrives. The transplant still hovers on the horizon, just as we wanted it to in those earlier days quietly offering some comfort and another path. One day I hope it may move nearer towards me while I remain stable and not me towards it should my condition deteriorate.
Somehow I know the wind of change will blow when it is good and ready and not a moment before.
I return back to my cooking, casually adding a few more herbs and spices to the lamb tagine, it is nearly cooked and I'm back to the present, where I should be and belong. Rob is back and unpacking all that last minute shopping. It's nearly time for our friends to arrive. Life feels content and good and normal and ordinary. This weekend is going to be another good one...
There is an absolute chronic shortage of organ donors. Over 96% of people say they would accept a lifesaving transplant if they needed one; only 31% of these are prepared to be organ donors. There are over 7000 people waiting for transplants; for many of these patients it is a long game of waiting while time runs out; roughly 3 people a day die while waiting. Family refusal to go ahead with an organ donation is still high; it is important to have the discussion about organ donation with your family.
Patients waiting for more than one organ face the near impossible and it feels like a lottery; more lives can be saved if organs are split up and shared out than if they are given to just one person; the shortage of organ donors impacts greatly on those needing several organs; there are just not enough organ donors.
Two whole years of waiting; 730 days; 2190 people have sadly lost their lives while I wait
If you want to do something extraordinary today sign up to the organ donor register click on:
