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I'll be 55 this August... I've had bronchiectasis for ten years plus this year... End stage lung disease for the past year...been on oxygen for three years... and have I got used to it yet?... nah! I am now waiting for the biggie; a double lung and maybe a heart transplant. I love my life weirdly enough, because I have some wonderful family and friends who are with me every step of the way on my adventures, even though I embarrass them on a daily basis with my unorthodox way of looking at life. Not for the faint hearted!

Tuesday, 28 June 2011

I am sorry

The promised thunderstorms didn't arrive last night, but I did actually sleep better than I thought I would. Might have been down to the evening shopping trip around a large supermarket where they had their air con on full blast.
I thought the security guard was getting a bit twitchy as I walked up and down each aisle with just a pint of milk in my trolley, so I ended up buying lots of lovely bits, but reading every label very slowly indeed especially around the freezer section!

Today I helped Reni at our local church in selling books again for the 'Stepping Stones' charity and it was quite pleasant sitting outside under a tree and it was lovely to chat to people while getting involved more in the village community. I used to drive my ex mad with all my WI, school PTA and community association meetings, always dashing here, there and everywhere.
I think Reni has the same values of community life as I had and that's lovely to see in a young woman.
When we arrived at the church, we walked in on two of the church wardens saying their prayers out loud. I felt a bit uncomfortable sitting there at first as I it was almost like we were eavesdropping on their private conversations to God, but after a while it felt quite comforting listening to them as they were praying for guidance in everyday things.
I realised then that although I talk to my guardian angels everyday, I needed to apologise to the big man himself for my flippant remarks on my situation. I often say to people when they ask how long will I have to wait for an organ transplant, 'well if it's too long, then I'll start laying traps in the roads ha ha'. But that's not funny is it? I'm talking about someones life and death. I know it is the ultimate recycling, but from now on, no more jokes about how the greatest gift that I can imagine comes to me.

I had my physio today at St Mikes's and thankfully the thunderstorms had at last come and the air was a lot cooler. There is no way that I could have handled postural drainage by pummelling in yesterdays heat, just sitting in it felt like someone was holding a wet flannel over my face and expecting me to breathe through it.
Tracy the head nurse popped in to see me while I was having it done and to ask if she could take another sample. She wanted to check that all the information is the same as on my last sample. I wasn't dreaming it, they are thinking of changing my drugs as the pseudomonas is now showing resistance to my colomycin. But unfortunately this time it could involve another ten day stay in hospital for this new treatment.
I have been taking this particular drug for five years so I guess that it's understandable that it has built up a resistance, but they have changed the make only about three months ago, so it is as good as the original? Is the government's bid to save money in the NHS meaning that they are swapping better makes with cheaper, less effective drugs?

I looked up the name of the new drug that Tracy mentioned on the Internet when I got home and if I have got the correct spelling... Amikican... then it is administered by injection or IV which would involved the hospital stay that Tracy mentioned. The word bugger springs to mind.
Is this karma for my flippant remarks I wonder?
Wait and see.
I do think that those words will be engraved on my tombstone!

Lots of love Debbie x

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