Up until a month ago I was exercising every day had to use oxygen, put on weight felt fantastic.
Then I started with a pain I've spoken about in other blogs, Pneumonia in the bottom of my right lung, in hospital 4 days now hospital at home week tomorrow, weaned from 2lt for 4 days to half litre this week with 1/2lts on the stairs my blood gas settling about 90/91 at rest.
It looks like they might sign me off tomorrow when the respiratory team will take over, but I've got to keep the half litre for 16 hours a day for 6 weeks then see someone about if I need it long term.
I don't want it all the time, what was the point of PR and getting fit I cant I will just throw myself out a window.
Distraught doesn't cover it.
Kim xxx
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kimmy59
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((((((Kim)))))) Please be patient. I was fit and healthy and only 40 when I took pneumonia and it took me well over 4 months to recover!
Talk it over with one of the respiratory team. They are in a better position to guide you as to your options. Perhaps you will only need this short-term till you get better.
Don't get too distraught. You're turning the corner now, and the home-straight is in sight.
I am sorry to hear that you had pneumonia and that you had to spend time in hospital. I want to reassure you that there is life after being put on Long Term Oxygen Therapy. As I type this I am attached to an oxygen concentrator. When I have finished on the computer I am going to do a little bit of gardening. After that I intend going for a walk with my husband and my oxygen cylinder. Please do not despair as oxygen is our friend as it helps us do the enjoyable things in life. If you are still feeling distraught you may wish to phone the BLF helpline tomorrow morning.
All the best
Mandy
P.S. Your oxygen levels may go up again in a week or two, once all the infection is out of your boday.
I just get my head around it, last year I had double Pneumonia and took 3 months to get better, this time it was a localised bit and they want to stick me on oxygen
Kimmy, you can't throw yourself out of the window. You will probably forget to open it first and there will be glass all over the floor. Then some poor devil has got to come and sweep it all up...and you!
Seriously, though, sweetheart, I know how you feel. It's a pain in the butt pulling oxygen around all the time. I know because I do it. But Sandra is right, before long you will feel better and that will happen sooner if you talk it over with your respiritory team.
Don't despair Kimmy, things change all the time, just because it seems rotten at the moment doesn't mean it's going to stay rotten. Take heart and just concentrate on getting better day by day, the rest will take care of itself. Big hug from me too xx
They've weaned me off it during the day just overnight now on half a litre, I'm just really depressed now. I thought I had got myself in a good place and stable now this. Cant cope I'm afraid.
Hi Kim, I've had many set backs on my rd to get the best out of myself. At this very moment I have a chest infection and on antibiotics. This has put me in hospital on every occasion but this time I'm managing and recovering at home.
I can only put this down to improving my overhaul condition making me stronger and more able to fight it, this shows that the exercise and PR do help to improve your ability to stave off infection.
Don't despair you will make it back to wear you were before if you work at it.
If you do throw yourself out of a window, make sure its on the ground floor eh'
Tony.
Oh Kim it can come hard I know. When oxy was first mentioned to me it was described as ambulatory, so ok on exertion I get sob. At a PR meeting nurse monitored my stats saying if it drops more than 4% you will need O2. At the time I was 94 t rest, she checks it 88!
You need ambulatory oxy she says, oh bo@@@@ks says I. Well sort it out she tells me.
Couple of days later she arrives with guy from airliquide and tells me you do realise this will be 15 hours a day. Then tells me about blood gasses, retention etc.
To say I was deflated, angry, et into put it mildly.
Now, after all that, you recall how you have adjusted as the course of your condition has developed, well you will to this too, honest. I'm not going to say you won't get pee'd off with it sometimes, but you will adjust as you have before.
We do what we need to do and you are strong enough to deal with this with less agro than you currently think. I sympathise cus I've been there, and because I've been there I know you will do better than just cope.
Don't despair. After I had pneumonia 3 years ago there was talk about the possibility of me needing oxygen at home. I was devastated but although my recovery was very slow I did recover.and I did not need it. I was given ambulatory oxygen which I was not keen to have but it has been a great help especially during periods of exacerbation. Keep your chin up and hope for the best. Good luck!
Oxygen is mine and a lot of people's on here lifeline. It is 8am and I have just taken mine off, I am sat with a cup of tea, tablets and inhalers, at about 9am I will shower and dress. Then I do any tidying etc. my husband is a dab hand with the vacuum. As it's a nice day I'll take myself down the garden and do some weeding, then lunch, more inhalers and another tablet. After lunch I'll put my portable cylinder on my mobility scooter and pootle off to town for a couple of hours, then home get dinner and back on the concentrator for my evening and overnight fix. People ask me if it's a problem and I tell them no I'm alive. I just thought I would post this to show you that life goes on just as before. Next week we are off on holiday in our little caravan, the oxygen company supply a portable concentrator and deliver portable oxygen to the site so we have no problems. I wonder if anyone has told you that the oxygen is to protect all your organs which can be damaged if there is not enough oxygen in your blood. Keep smiling
I'm on half a litre. When I was told I may need it I was actually looking forward to using it as I was very aware of the damage that could be done to the organs.I'm supposed to be on it for 15 hours but do it longer if I can.
Yes Carole I am aware it protects your organs, truth be told I'm scared, angry frustrated and feel my life as I know it is over. I'm really happy for the people who have embraced it must be a relief to their families I'm just an selfish idiot.
Thanks again for everyone's feed back
Kim
Hi Kimmy - YOU are not a selfish idiot at all. You need to talk to the respiratory team and what about ringing the helpline and asking their advise. Your life is not over yet - but you have every right to be scared angry and frustrated. You have been very ill and it will take time to recover. Be kind to yourself and take care. With much love and kind thoughts TAD xx
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