Something I always wanted to do when on the transplant list I got the chance to do last week. The day after I was listed Sarah Milne from the charity LLTGL wrote a press release and my story went down pretty well. Being able to raise the profile of organ donation via the media for me gives me a focus, it gives me a voice when there's nothing to say or do but wait. For me it keeps my mind busy and if I'm honest it takes my mind of what's really happening to me and what I'm facing.
On Thursday at day hospice when the media hype had died down a little I was left to my thoughts and feelings I'd blocked out both physically and emotionally. The fact is over the last week or so I've been more unwell, I've tried to ignore it but by that point the fact that I was knocking back 20mls of morphine in one go so I wasn't in tears with carbon dioxide headaches was being questioned. I talked to a hospice nurse and we both agreed it couldn't be anything other than carbon dioxide. An appointment with an NIV nurse today confirmed this. This meaning either A) my VPAP was broken or B) my lungs had deteriorated and were less able than before to do their job. We figured seen as there was nothing to point to the VPAP not working it was the latter. I have occasionally used NIV in the day but it wasn't a complusory thing and I would just use it in the day if I felt a bit under the weather.
Since the day I went on NIV I always said it would never restrict me, I would not be stuck on an NIV in the house for the majority of the day watching life pass me by, over my dead body. Now I've arrived at that point, I'm dependent on NIV more than I ever have been before, to at least keep pain free and feel 'normal' I need to be on it 15-20hrs a day. Carbon dioxide headaches are not something you can ignore as much as you think you'd be able to in a 'oh its only a headache!' style, they bring you crashing down to earth, at times I have fallen to my knees had in my hands screaming and crying. High carbon dioxide affects everything, concentration, energy, memory even down to physical appearance.
So what am I supposed to do now? I need to stay alive and wait for these lungs and that, now, involves alot of time on a ventilator but how can I sit back and watch the world outside my window carry on without me? leaving me behind.
I always wondered, would I get on the transplant list and just think 'ah at last, the battle is over' and as soon as I think that would I physically give up before I got to where I wanted to be? Which as gruesome as it sounds, is an operating table.
The fact is this latest blow has hit me hard, of course I saw it coming, anyone with a progressive disease on NIV sees it coming but how do you prepare for the fact that for the majority of the day, for the majority of your life here and now you can't even breathe for yourself?
Sending some smiles!
4 weeks ago