I hope you're all doing okay. My mum is still going strong. She's on her 2nd course of antibiotics after being 'finally' diagnosed with a very severe chest infection - apparently she's had it for months, but it was never picked up!
She is still on 3lpm of oxygen for up to 15 hours a day - her SATS are normally around 98 at rest whilst on the oxygen and around 89 when on the move. Off the oxygen, she's around 92-94 at rest, but drops to about 80 when on the move.
I went to the hospital with her this morning as she had a Thoracic medicine appointment - she had a spirometry test and was told it was far better than when she was in hospital which I guess is a positive. She also asked for the results of her ECG which she had 2 weeks ago and whilst there was some very slight stress on her heart, it was nothing to be concerned about which i guess is good.
To be honest, her diagnosis seems to change all the time - one thing she definately has is emphysema ..... on top of this, she has some scarring of the lungs which they sometimes say is bronchiecstasis or UIP! It's very confusing - the Thoracic medicine Dr she saw today said she would be referring her to the Royal Brompton hospital as there is a new treatment that can help this condition - obviously it won't ever cure it, but it can certainly help ..... would any one you know what this may be? I'm guessing it's a tablet of some form, but if that's the case, why couldn't our hospital prescribe it??
I've read up on UIP and the prognosis is a little scary, so looking at my mum now (aged 76), she still looks great and doesn't feel ill at all - just get's a wee bit breathless when walking, but that's helped by the oxygen, so I'm hoping the prognosis isn't the same for everyone.
The Dr also suggested Pulmonary Rehab - her Respiratory nurse recommended this as well. My mum has lost alot of confidence and is reluctant to go as she doesn't want to look stupid etc - I think i've finally got through to her and persuaded her to go to a group as after reading so much positive reports about them on here, I really think it will give her so much confidence as well as new friendships. I'll keep on at her until she eventually agrees ...... in a nice way of course
Anyway, love to you all ...... keep strong and keep fighting these horrible lung diseases.