I read recently a blog from my transplant buddy and fellow PH sufferer Stacie.
Stacy and I, apart from the obvious age difference, are very similar in many ways. We both still work, we both have damned Hickman lines and we are both normally cheerful 'get on with it' positive people. We've both also been waiting for a very long time for our transplants. The third person in our transplant triangle, Kath, got her much longed for miracle last year after a two and a half year wait. We were both joyous but very much aware that heart/lung transplants do not happen often. Last year only six were carried out and Stacie and I are very much aware that our chances are not great. After all, and lets be brutally honest here, the NHS operates on numbers, especially financial ones. It is more cost efficient and boosts their ratings if two people can be saved instead of one. I'm not saying there is anything sinister or underhand but those needing more than one organ tend to get the last dibs. And so we wait in limbo, neither living to our full potential and always fearful of what is around the corner.
In her blog Stacie admits to her fears of dying and describes how she bottles everything up until the safety valve breaks and it all comes flooding out.
We are all afraid of something be it spiders, heights or snakes but we all share one big fear, the fear of dying. We may not fear death itself but I'm will to bet most fear the cause. I am sure that I speak for most of us when I say we want a quick, painless death, preferably one that we know nothing about. Unfortunately few will get such a death. Thanks to medical science we live longer these days but it also takes us longer to die because the Hippocratic oath makes doctors do everything in their power to save life. Even if that life is one of pain. Both Stacie and I know that our deaths from PH are going to be long, drawn out and painful. I'm sure I speak for both of us when I say I do not want to end my life propped up in a hospital bed painfully gasping for air. I don't want it for me and I don't want it for my friends and family who will have to stand around helpless and watch.
I do not fear death itself. I am not particularly religious but I believe there is something better waiting for me. Hopefully a life without pain and stress. I do however fear the manner of my passing. My biggest fear is to die during transplant, surrounded by strangers and denied the chance to say goodbye. To be denied a good result from all the pain and fear would be too cruel to bear for my family also.
Having said all that I admit there have been times when I've lain in bed and wished for death to end it all. These times have been when I've been so desperately ill that I've been unable to do anything for myself. While waiting for my Hickman line to be put in was one such occasion. I was so ill I couldn't dress or feed myself. I was so breathless I couldn't eat. I was also in agonising pain as my muscles tried to cope with the forced breathing. There have been times since but that occasion was the one when I was so desperate I even wondered how I could end it myself.
Let me say here and now I am not suicidal and would never, ever put my family through that pain by being so selfish, but fear can do terrible things to the mind. Eventually I got my new medication, began to recover and forced the fear into the back of my mind once more. However the fear still lingers. If I'm having a really bad day I will sometimes go to bed and wonder whether I will wake up. Sometimes the fear is so great I won't sleep, stupid isn't it as peacefully in my sleep in my own bed would be my method of choice.
If you let it fear can pervade everything you do. It can alter your outlook on life and eventually it can virtually paralyse you. I know, I've been there but thankfully have always managed to fight back from the depths. One day, and maybe soon, I will lose my fight against this horrible illness and will have to face my greatest fear. How will I react, I don't know, who does? However my hope is that when it does come I will be able to suppress fear one last time and face my next great adventure with a great big smile on my face. PH might destroy my body but I'll be damned it it destroys my spirit.
I hope Stacie will bounce back and continue to be her wonderful, positive self and put her fears behind her. Always right beside you Stacie.
If you wish to read Stacie's inspirational blogs the link is on the right hand side bar.
In her blog Stacie admits to her fears of dying and describes how she bottles everything up until the safety valve breaks and it all comes flooding out.
We are all afraid of something be it spiders, heights or snakes but we all share one big fear, the fear of dying. We may not fear death itself but I'm will to bet most fear the cause. I am sure that I speak for most of us when I say we want a quick, painless death, preferably one that we know nothing about. Unfortunately few will get such a death. Thanks to medical science we live longer these days but it also takes us longer to die because the Hippocratic oath makes doctors do everything in their power to save life. Even if that life is one of pain. Both Stacie and I know that our deaths from PH are going to be long, drawn out and painful. I'm sure I speak for both of us when I say I do not want to end my life propped up in a hospital bed painfully gasping for air. I don't want it for me and I don't want it for my friends and family who will have to stand around helpless and watch.
Having said all that I admit there have been times when I've lain in bed and wished for death to end it all. These times have been when I've been so desperately ill that I've been unable to do anything for myself. While waiting for my Hickman line to be put in was one such occasion. I was so ill I couldn't dress or feed myself. I was so breathless I couldn't eat. I was also in agonising pain as my muscles tried to cope with the forced breathing. There have been times since but that occasion was the one when I was so desperate I even wondered how I could end it myself.
Let me say here and now I am not suicidal and would never, ever put my family through that pain by being so selfish, but fear can do terrible things to the mind. Eventually I got my new medication, began to recover and forced the fear into the back of my mind once more. However the fear still lingers. If I'm having a really bad day I will sometimes go to bed and wonder whether I will wake up. Sometimes the fear is so great I won't sleep, stupid isn't it as peacefully in my sleep in my own bed would be my method of choice.
I hope Stacie will bounce back and continue to be her wonderful, positive self and put her fears behind her. Always right beside you Stacie.
If you wish to read Stacie's inspirational blogs the link is on the right hand side bar.
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