Emphysema

[stanns]

I have emphysema and am worried that I dont have long to live. I am told that the winter will probably end my days as I am rapidly losing weight and I cannot fight it. Does anyone else have this problem.

[peege]

Hi, just wanted to say hello. There are hundreds if not thousands of members with copd, hopefully they'll be along soon to reassure that your days wont be ending this winter - who on earth told you that? They need shooting.

There are many many members who've lived with copd for many many years here stanns. Wishing you all the best, P

[Oshgosh]

Have you got phone access to a respiratory team?

[stanns in reply to Oshgosh]

Why do you ask.

[Phil40 in reply to stanns]

The respiratory teams and specialist nurses know more about this than most doctors and probably will be a lot more pleasant and tactful.

I try to stay away from the doctors they often seem to complicate matters and make things actually harder.

Just my subjective experience of course.

I am honestly shocked by what you were told.

Disgraceful.

[Corin1950]

Just read your profile and you are the lady that lives on Dartmoor.

You wanted to give up smoking and You were finding it hard. Wondered if you succeeded.

Being seriously underweight can be a feature of emphysema and I know this only too well as this has happened to my husband. The doctors describe it as seriously deconditioned

I have researched it extensively and found that you have a better prognosis if you maintain your weight. It's obvious really as you tend to lack nutrients and eating well gives you strength and energy and builds up your immune system which will prevent you from picking up infections which threaten your health. Vitamin supplements can help too. I give my husband Omega 3 fish oil, Vitamin D, Vitamin C and a multivitamin each day.

I don't see how anyone can predict when a person with emphysema can die as it depends on many factors but I believe eating well makes a difference alongside good medical care, as does being positive and optimistic and enjoying your interests and what you have.

Take care and keep posting

Love

Corin

[Hacienda in reply to Corin1950]

Well Said Corin. XXXXX

[Whitechinchilla in reply to Corin1950]

Well said Corin.

[stanns in reply to Whitechinchilla]

Thank you, I cannot retain my weight even-though I eat well, I have some sort of problem as I also have a ileostomy.

[powderpuff in reply to stanns]

What’s the reason for the ileostomy Stanns? You’ll more than likely have access to a specialist stoma / gastro nurse & I think you should contact them if you’re failing to maintain weight or if it’s disease related - something could be active & flaring. There’s also specialist dieticians totally familiar with the eating/food challenges of ostomists.

[Ergendl]

Ask your doctor to refer you to Pulmonary Rehab. That will help you counter deconditioning and teach you about your COPD. It transformed my life, so it can do the same for you. All the best.

[stanns in reply to Ergendl]

Been there done that. No tee shirt.

[Ergendl in reply to stanns]

Have you continued to do the exercises since the course, or found other ways of exercising to improve your fitness?

[stanns in reply to Ergendl]

I have been told by the respiratory teem that I would be to exhausted to do rehab.

[Ergendl in reply to stanns]

Take a look at some of the BLF videos about gentle exercise. You can start just gently bopping to your favourite music to get the blood circulating better. All the best.

[gingermusic]

I have lived with Emphysema for 30 years now and not about to die as far as I am aware so stop worrying and enjoy life as best you can.

[Whitechinchilla in reply to gingermusic]

Great encouragement, for us all. Thank you.

[tracyball1]

That's not true you could and should have many years left,but first you must stop smoking if you still do, and you need to try and exercise regularly it's not easy when your breathless but it does help, and get on the right medication for you. Good luck xx

[stanns]

Thank you the pulmonologist has said he will see me in September & if I have not had an infection by then he can give me some tablets to hold off infection. So fingers crossed.

[Phil40 in reply to stanns]

Well that’s good of him. So if you make it to September you can have some pills.

What a wan

[Nicholatracy]

Stay off Dr. Google, eat what you can, exercise as best you are able, stay on this site. Whoever told you about not making it thru winter is so ignorant. Stay positive 🐞

[stanns in reply to Nicholatracy]

Easier said than done, I am going to hospital to be tube fed for 10 days..

[Nicholatracy in reply to stanns]

Whatever it takes to get you on a better road 🐞

[megshafer]

If you can have milk products...big thick milkshakes with added condensed caned milk....as many a day as you can, and still enjoy them. They help with weight.

If Willie Nelson can be touring with emphysema after 44 years....so can you!!

Meg

[tracyglenn]

i am prescribed Remeron 30mg everynight it is a antidepressant but it causes weight gain i went from 78lbs to 127 lbs now and i drink ensure also. I just had the EBV valves put in two days ago it will take a good 12 months for final result. hoping to get off oxygen soon..

[Phil40]

I am sorry to read that and I really hope that whoever imparted that information was somewhat more tactful than ‘winter will probably end my days.’

I have thought that about my Mum for the last 3 years and she’s still going strong. Probably outlive me. I truly hope I have her constitution.

She is also prescribed those Fortisip protein drinks etc which help with her weight.

Winters are not as cold now either, good old global warming.

As the song goes :

Accentuate the positive,

Eliminate the negative,

Hold on to the affirmative

Don’t mess with Mr. In between.

Or something like that.

Hope you have a better day my friend

[tavymaid]

Hi i now live in Torquay but my home town is Tavistock so Dartmoor holds a special place in my heart. I,m a 50 years old with Emphysema and Asthma and hate it but take my meds and try and keep as busy and active as possible. Love to sunny Dartmoor XX

[stanns]

Yes tavymaid, I love Dartmoor too.I am near Hound Torr.

[NicolaM1]

Hi. I just saw your post and wanted to tell you that my Mum managed to live with this disease for over 30 years. Which was many a winter, she read a kindle because of germs in books, got the flu jab every year. If you can stay away from people with coughs and colds and any chemicals such as aerosols, bleach etc, that will irritate your lungs. So using natural cleaning products like organic vinegar. There are lots of sites that do recipes for this type of cleaning products which are all good for environment too which will maybe slow down the disease and wrap up warm. I do hope this helps ❤️

[Perrythomas]

healthline.com/health/emphy... Try this American site and read the last bit! You can improve your health - I have Emphysema and it’s not pretty but I will fight it to my last breath! 😉. Make sure you are getting the support from health professionals and research- many people with E live a very long time! 👍