Royal Brompton

Hi all,

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.

Julie x

5 Replies

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  • Your Mum will be going to one of the very best hospitals in the UK for respiratory diseases . I am sure she will get the very best of treatments there. They may be talking about having 'valves' put in her lungs, or it may be an inhaler or drug, but reat assured they are at the forefront of treatments for Lung conditions.

    Yes do persuade you Mum to go to PR , she will learn a lot, and everyone I know of who goes really enjoys it. She will definitely not be made to feel foolish or self conscientious , and it will do her health a great deal of good. There can be long waiting lists for the courses hopefully she will not have to wait too long

    Good luck at The Brompton

    Love Sohara

  • What a lovely daughter your mum has. PR is an excellent course. There are people on it who are all sorts of conditions and stages. It is designed specifically for each individual according to their need.

    All the best

    Kate xxx

  • It's great news they are sorting out the chest infection.

    That's fantastic being referred to the Royal Brompton. Go for I

    Pulmonary Rehab it really good nobody will put your Mum down, she vet lots of support &encouragement. Best wishes Nan xxx

  • Hello Julie,

    Your Mum has a wonderful Daughter. She could not be going to a better place for treatment.

    Tell her PR is absolutely one of the best things for us - not only for teaching diet and exercise, understanding the disease, but joining in with others just like your Mum, some better, some worse. I wish I could go again.

    Best to you both.

  • Hi. I am a Brompton patient for heart and lungs, and as it is a specialist hospital their knowledge and care is 2nd to none. My lung function, due to scoliosis has deteriorated considerably recently, so they have changed my inhalers, and going back in a few weeks for a follow up. I am also going for an assessment for Pul rehab. I have had them before, and they really do help. Courses last, at Bromtpon anyway for 8 weeks, twice a week. They have an hour's exercise and an hour discussing various aspects of lung problems. Really helped to kick start exercise and get my energy levels improved, and you learn a lot about how to live with breathlessness, so do go for it. The Brompton is a great hospital. It's a pity that NHS England seem to have got it into their head that all heart surgery should be removed from this amazing hospital. The fight is on!

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