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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!

Monday, 20 June 2011

Dr Burden explains

What a difference a full night's sleep makes to the world, I feel almost human again!
If I hadn't slept again last night, I think I would have probably of murdered someone. But luckily for mankind when I got into bed, sleep came quite quickly this time and when I did wake up for the inevitable trips to the loo, it wasn't long before I dropped off to sleep again... bliss.

I did feel up to getting mother's food shopping as her fridge and freezer were near enough empty, but I did have to ask Reni to carry the shopping for me.
It's one thing to sit and drive the car... which is my life line... to the supermarket or to lean on a shopping trolley when walking around a supermarket, but it's totally another thing to carry the heavy bags of shopping to mine and my mother's bungalows.
Perhaps I should get back into the habit of Internet shopping, but it is nice to get out and see what is on offer too.

I haven't heard anything from the team today, so I don't know whether they have changed their minds about changing my drugs or if they are still in confabulation about what's best for me? I dare say I will get a call tomorrow as my readings on the 'docobo' were all over the place tonight and my heart rate was especially high. All I had done was got my washing in!

I know I talk about my levels a lot and my 'docobo' readings and maybe I should explain what they mean.
A 'docobo' is an amazing little machine that is plugged into your phone line and can take your oxygen levels, measure your heart rate and you can key in your blood pressure... for which I take using another bit of equipment...for the team to read and keep an eye on you. It also can be used as a defibrillator if needed and you can send messages to the team on it if you are concerned about anything. It also asks you questions about your general well being each time you use it, which is twice a day i.e. what colour phlegm are you producing today today or are your ankles swollen? Or you can do extra readings if you are worried or have pains.
Anything over 100 on your heart rate will usually trigger a phone call of how are you feeling or what were you doing at that time.
Tonight's were 115, so not good.
My oxygen levels readings give me an indication of whether I should take it easy that day, even if I am feeling alright in myself.
If you have ever watched ER with the delectable George Clooney, they would use their little stats machine on the patients finger and if the stats read 90%, all hell would break loose and they would yell 'bag them' to the nurse, which was when the nurse would dutifully attach the face mask of pure oxygen on the patient.
I'm normally 88% while wearing oxygen and I have to walk about and carry on living on those levels, which is why I am very breathless and tired all the time. Sometimes I reach the dizzy heights of 92% and once in a blue moon after being on strong medication, I have reached 94%, but as my team know all to well, that ain't often!
Hope that explains a bit of what I prattle on about most days?!

Anyway today oxygen levels are 87% this morning dropping to 86% tonight and heart rate 115 which means REST.

Lots of love Debbie x

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