Clear deterioration of health, no communication with health care professionals who in any case will never give an opinion, (you may have noticed that I occasionally bitch about it on here folks!), I had got myself into the frame of mind that I was going to fall off the perch very soon so nothing was worth bothering about. Very depressed under the disguise of acceptance.
Anyway, late last week I decided to fight back a bit if only to make someone take notice, so I texted the community respiratory nurse who had got me on to the rehab course half a year ago, and who had been supposed to refer me to a day centre at a beautiful hospice up on the edge of the Cotswolds about 9 miles away. Nothing had seemed to happen.
She called me Friday to say she had found the referral letter, typed sometime in November, but no date on it and no indication how it might have been sent, if it had. Strong suspicion that it had simply been filed in my folder in their office. She offered to come and see me yesterday (very quick response).
When I last saw her at rehab I am convinced that she told me to stop exercising because it took my oxy level down to about 64%. Yesterday she said I should start exercising again but gently to start with, and I wasn't interested - after all I was dying quickly wasn't I, and I hate exercise?
She gave me the first opinion about that from anyone in any medical position - she said I ought to see next Christmas at least! Next Christmas! That gives me a whole summer in the warm (you know, if that alien yellow thing in the sky comes visiting) to get out of the house, visit places with my wife, and go on holiday somewhere. I'm over the moon (my wife really deserves that holiday) - I'll start the damned exercises after nebulising this evening!
Now I wish I'd chased it up months ago - still now I feel optimistic. This will sound selfish, but now my mother in law died a few weeks ago we are much free-er to go out and about a bit. The nurse even offered to write to the consultant and Air Liquide to see if we can find an 0xy solution to stay out a bit longer.
And 15 minutes ago the hospice called and made an appointment in April to see if we get on with one another.
What a result!
Frank
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serenityfrank
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21 Replies
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Good for you frank,,,,,keep kicking ass,and enjoy life mate,,,,wishing you good things......
Your post really made me smile. I can empathise with lots of it. Take the exercise slow and steady at first. It is okay to drop your sats down low as long as it is not for too long. Good luck. x
I agree Bolilly, but I also believe in doing everything I can to live tomorrow, next month and next year. Exercise is so good for us under controlled conditions.
I am so pleased you have got some proper attention at last Frank. Let us know what happens.
Well done Frank, its the only way it seems, or you just get fobbed off and overlooked. I started day care last week ,at the local hospice and am looking forward to going back tomorrow. Its a day out, and different people to talk to.
Almost had my disco diva karaoke in action then the real world and a puff out of the blue inhaler stopped me for a moment look out x-factor I am up to walk out the door ha ha
That's great news! So glad you did something constructive,and look where it got you!!
You previously sounded so down.New days ahead!
You have more time for your own needs now,so make the best of it.
Will be interested to hear how you go in the rehab.Keep in touch,
Good for you Frank, I think we all run the gamut of emotions each day with this horrible disease so to have something good to look forward to is always a big lifter of spirits. Never mind this summer, maybe next summer too! Libby
Do the exercise Frank, my husband got me a jogging machine and bullies me into using it I hate exercise but I am breathing better every day. I can only do 1 minute at a time but it seems to be working.
One night, after 5 weeks in hospital with cellulitis,my head went down for the first time in 70 years. The medics had thrown everything at the infection and nothing had worked. I was on my way out wasn't I?.That night one of the nurses sat with me for nearly an hour, telling me that I was going to be ok. I believed her and the very next day the bug doctors came up with a triple whammy antibiotic. Inside a week I was out of hospital. Moral: never ever give up.
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