Further Questions - I hope you don't mind

Hi all,

Firstly, I want to say 'thank you' very much for all your messages of support and reassurances in relation to my last post.

As some of you may remember, my mum has recently been diagnosed with Emphysema and Fibrosis and although she is now home from hospital having spent 8 days there and being provided with some medication, she is still quite breathless even after walking a short distance.

I am trying my best to reassure her that once she starts her pulmonary rehab course and has her appointment with the respiratory clinic to maybe adjust her medication as well as possibly put her on home oxygen things will improve, however, she remains petrified. She was an extremely active lady, so to see her not really wanting to go out because of her breathlessness is heartbreaking and whilst we know it will never be cured, I'd like to be able to properly reassure her that she will become more active once she has had her appointments.

Can anyone reassure me (which I can pass on to her) that the medications and exercises will help as well as those that have oxygen at home, that it does indeed give you the ability to be more active.

She is currently using a 'Fostair' inhaler, 'Salamol' inhaler, Tiotropium and Acetylcysteine capsules - I've seen other posts where people are on different medications so am hoping my mums may get changed which will make an improvement.

Any advice, reassurance or help would be greatly appreciated.

Thanks all :)

11 Replies

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  • I don't have the same condition but I'm sure someone will be along soon who can help. Much love to your mum, the whole thing can be scary but things can improve for her xx

  • Evening.

    I have severe Emphysema and have completed two PR's and I can assure your mum it really does help, even though asking someone to exercise when they can't breathe very well sounds stupid.

    The PR isn't just about the exercise, they teach you how to do it safely and explain why it helps, you have talks on diet, medication, oxygen and depression to name a few things. And in my area once you've been on one your condition is managed by the Community Respiratory nurses and their team and they come to me, it's the nurses who prescribe oxygen not the doctors, I see my consultant twice a year.

    It is really scary at first but she's not alone we all understand how she feels and there is usually someone on here to talk to, worse thing you can do is Google. She will get used to it you just tend to do things slower than you did. And take any help offered, I fought having oxygen, then a wheelchair and a mobility scooter and stair lift and its stupid it just makes your life easier, like someone said to me if I needed a plaster cast or heart operation I wouldn't say no. Sorry bit of a waffle there.

    Good luck

    Kim xx

  • Good morning. I have copd and use Fostair and Salamol. Anything in the way of good diet and exercise is going to help your Mum. Please reassure her. It can be very scary - the unknown - especially if she has been so active all her life. Wonderful letter to you from kimmy59 and am sure there will be many more today. Try not to worry - everything will be done for your Mum to make life better for her.

    x

  • Try to get your Mum singing to some of her favourite songs from the past. Singing releases natural endorphins that will make her feel better, and gently exercises the lungs and makes them a little stronger. Don't make a big thing of it, just sing one of the songs you remember her singing in the past, and encourage her to sing along; then open up a conversation about different songs and sing snatches, to start.

  • One of the most important things your mum will learn from rehab is ways of coping with breathlessness and the panicky feelings that she has. High rates of anxiety are very common with breathlessness.

    Medications and exercise will definitely help. However, don't rely too much on home oxygen as it's prescribed when the oxygen in the body isn't getting through to the major organs and not just for " breathlessness"

    I have COPD, live alone and get very breathless, but using a mobility scooter and coping mechanisms I still lead a very active life and go to 2 book groups, art group, exercise group, singing for people with lung conditions, Breathe Easy meetings, out with friends to lunch and theatre, horticulture club, and look after my grandson twice a week. I spent Wednesday at the Suffolk county show and nearly froze, but had a good time

    Hope all goes well for her and this is reassuring

  • Thanks so much everyone. You're right …. Google is dangerous! Life expectancy 2 years blah blah blah …. that's really scary and not something I wanted to read as she certainly doesn't look that bad yet! My mum doesn't have the internet, which I guess is a good thing, as she would Google everything!

    She used to be a good eater, however, not anymore. By living next door to her, I do make her soups and hearty meals and encourage her to eat more, but if you're not hungry, you're not hungry as she keeps telling me!

    I'm sure once she gets placed on a PR course, she will be a lot calmer in herself as she will be able to speak to others going through the same and believe that what she experiencing is typical of the condition and that there will be things she can do to help it.

    It's just really horrible and sad to see a loved one who this time last year was very active and now they want to be but can't.

    I really appreciate all of your kind, encouraging comments and I will show make sure my mum sees them. I wish you all well on your journeys too.

    Julie :)

  • Hi Julie

    I have a similar situation with my mum she has been offered oxygen at home and being stubborn has refused it! She hardly eats and they have now found a nodule in her lung that has doubled in size so now have to see if she is strong enough to survive an operation.

    Support your mum and have fun. I have found if I keep going on at Mum about the smoking and not eating etc then we spend too much time arguing and not enough time enjoying each other's company.

    This group is great for support xxx

  • If you mum goes to pulmonary rehab, then apart from any benefit she gains from the exercises and dietary info', she will be meeting others there with a variety of lung related illnesses. She'll probably find her confidence getting a huge boost from just being with people who are coping very well, in spite of the limitations their conditions place on them. It's a scary thing to get your mind round, but you'll find all the support you need for your mum, right here - from a really great bunch of people.

  • It's a very worrying time for you and your poor mum sounds really frightened by the changes her breathlessness has brought about. She's feeling out of control because of all this but she will be helped to manage it. I absolutely agree with what others have said. It's well documented that these things do help us, and we can back that up from our experience. If you think about it, they wouldn't fund Rehab, prescribe inhalers and oxygen if they didn't help to treat our symptoms. It doesn't happen overnight but it does work!!

    Good luck to you and your mum, and keep in touch. Sue x

  • You have had some sound advice which I can't really add to, your Mum will adjust, somehow we do! I wouldn't worry trying to get Mum to eat, as long as she's getting plenty to drink, and there are some great build up shakes around. Wishing you both well Xx

  • it will take a good few weeks for her to get over her hospital stay. Her life has turned upside down and she may go through a sort of grieving process as many of us have but its true that once her meds are right and her oxygen is right and she's emotionally getting a grip of things she will be ok and she will laugh and have good days. 2 years after diagnosis ive just got back on the roads and driving again. I'm about to start my second pr group and ive spent the afternoon painting and planting flowers. There are people on here who play the flute, who sing in a choir, who work, who cycle etc. ...You will both be fine just be kind to yourselves over the next few weeks while things get put in place. The BLF members are capable of getting people through most things :) x

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