Mum diagnosed with Emphysema and Fibrosis of the Lungs

[JForbes26]

Hi,

My mum has recently been diagnosed with emphysema and fibrosis of the lungs. She has been getting more and more breathless over the last few months and our GP kept giving her water tablets to remove the fluid, however, I wasn't convinced it was the cause. She lives next door to me and would be totally out of breath just walking from her house to mine, so I put my foot down and took her (reluctantly) to the hospital. She was admitted with oxygen levels at 84% and remained in hospital for 8 days where she had x-rays and a CT scan to confirm the diagnosis. She has since been discharged and has a few different medications including inhalers and a 'fizzy' tablet she puts in water to help relieve the mucus on her chest. She is feeling a lot better, however still gets breathless when walking. She can probably walk from her house to mine and back twice which is an improvement on before, however it's still not great. She has been referred for pulmonary rehabilitation and is awaiting further appointments with the respiratory clinic, but I would like any advice on how I can help her, which is my reason for my post.

She was a very active lady until last year and gave up smoking 15 years ago and whilst she still wants to be active, like join me on shopping trips and days out with my children like she used to, she can't. This saddens her (and me) so I would be grateful if anyone else had experienced similar and what treatments you were given.

She is 76, but acts and looks more like she's in her 60's and this has really knocked her for six. Any advice would be greatly appreciated.

I love my mum immensely and will do anything to help her - I just need pointing in the right direction

Thanks x

[diesel12]

Sorry, I'm no expert but I know rehab has helped people a lot. Someone will be along soon who will have answers for you. Oh! and welcome to the site x

[Kathygwanny]

Hi, welcome to the group. You will get lots of help and advice here. I think your Mum will find the pulmonary rehab very helpful. I did, about 9 years ago. I use a mobility scooter to get out and about, myself and with the family. I'm on O2 24/7.

I hope you get lots more replies soon.

Take care,

Kathy x

[Tee1008]

Hello JForbes and welcome to the forum.

Your mum is very lucky to have you fighting her corner...and you have helped to get the best thing for her...a proper diagnosis! It is better to know what you have to deal with, and a lot of GPs don't seem to know very much about respiratory diseases.

She will be greatly helped by going to the pulmonary rehab, and the respiratory clinic will ensure her inhalers, etc, are the right ones for her. A healthy diet and as much exercise as she can manage should also help.

Best wishes to you both, and let us know how she gets on.

Tee x

[Hidden]

Good morning J and a warm welcome to our site. I'm the same age as your Mum, and have moderate copd, diagnosed a couple of years ago. I smoked a lot for 50 years, stopped about ten years ago and am on Fostair and Salamol inhalers. This is an amazing place to be, all your questions can be answered by people with a far greater knowledge than I of what your Mum has and how to help her. Gentle exercise, good food and I bet living next door you two have lots of talking to do - all these are so good for the lungs and general wellbeing. Once she gets on the Rehab course she will feel a great benefit, and your trips out together with her grandchildren can be organised round her new life. Tell her not to despair and you too. I can see how deeply you love her.

xx

[Dedalus]

Hopefully the pulmonary rehab will help - your mum is so lucky to have such a kind and loving daughter - welcome to our lovely group.

[Hidden]

Hi

I'm 77 and was diagnosed March this year. It is a shock at first but as many have told you already this site is your best online help you'll find. I'm half way through my Pulmonary rehab course and its absoulutely necessary. And if you are able to go with her because they do like partnrers or family member attending and watching you'll also understand about all aspects of this condition and can help her with it. Understanding the medications , self help, exercises gives you knowledge and then takes the fear away. She is lucky to have you there for her and ask any questions on this site as they come along and someone here will be able to help.

[kernowdame]

I am 74 and have severe COPD. Am waiting for rehab, but not holding my breath. If I have a series of days when I am too breathless to go walkabout I realise that muscles are going to pot and legs are not what they should be. So I have taken to spending time on a stationary exercise bike. It registers pulse and speed etc and gives me a score at the end. Surprisingly I can do this when I can't walk up the road. And it makes me feel good. Just a thought for a Mum who sounds a bit like me!

[Sooki]

Have they identified the fibrosis cause,if not its Idopathic pulmonary fibrosis,then she needs to be seen at specialist centre,most of us drop our oxygen rates when active and we have oxygen prescribed.There are several specialist centres around the country.The BLF may be able to point you in the right direction.Sooki

[JForbes26 in reply to Sooki]

Hi Sooki,

They did mention 'idiopathic' pulmonary fibrosis which I think they said means they don't know the cause. She gets a tight chest upon short distance walking and has to stop constantly to get her breath back. I'm guessing that means she may possibly need oxygen 24/7. Hopefully the appointment will come through soon, so we can get further help …… thank you

[Hidden]

Hi and welcome,

Your Mum will benefit greatly from the pulmonary rehabilitation programme as many people on this brilliant site will tell you. You will find a lot of useful information on here about various different aspects of living with this horrible condition.

Best wishes to both you and your Mum x

[cogsie26]

Hi sorry to hear about your mum i felt the same couldn't do this or couldn't do that I also suffer with osteoporosis and was finding life very hard I am very limited also but I have bought myself a rotator can fold away easy enough to go in a car and also can be taken on buses so if I go out i use mine I take everything slow and then find that if I feel out of breath or have pain I will have a sit down on it to recover myself it's not the answer but have found this a great help and my friends and family have said they can see a difference in my mobility I also start a pulmonary rehabilitation course on the 1st July so hoping this will help also I hope i have been of some help and you and your mum get to have days out x

[Hidden]

hi I've just joined this site looking for answers and help. I've had asthma all my life im 55 now I have server emphysema it got worse when I turned 50 for some reason. I've been on prednisolone most of my life they have cursed so many problems for me the list is endless so try to keep off them. last I Neely died I was in a coma for two weeks since I've come out of hospital my life is up side down I can only walk about ten feet then I have to have a neb. you are the best treatment she as at the moment just knowing the is some one there for you helps im Shure you will find more answers as time goes by me to I hope all the best Antony x