Would anyone be willing to tell me how they manage emphysema and how quickly it has deteriorated?
I was diagnosed 7 years ago. I was around 56% Fev1 then. I managed to get up to 65% ish for a few years but am now between 50 & 56%
I have a flare up/ chest infection roughly twice a year. I can walk ok except incline then I struggle. I’m on Spiolto inhaler. I’m 65 so am wondering if I will keep going downhill now. Thank you. Keep well.
My dad was diagnosed with emphysema in his early 70ies and lived for about 10 years after that. On the plus side he was pretty fit; on the minus he never managed to give up smoking. This was back in the 70ies when he received no advice or medication to help him. Pulmonary rehab was never heard of. He was given an oxyygen cylinder and left to get on with it. In this day and age, particularly since you are a younger than my father was, you should avoid significant deterioration for a long time to come. I hope so. Your GP should be your first port of call. Hope someone will be along soon who can tell you how they manage their emphysema.
I have had emphysema for over 25 years, I used to get really bad flair ups - I smoked but stopped and it does improve,.....Left me with scarred lungs but, I manage, I get short of breath these days rather moth than full blown flare ups. I manage though, suppose used to it.
I was diagnosed 8 years ago and my fev1 is now 24%. Were it as high as yours I would be pleased. Stay as healthy as you can, eat well and keep active. Follow those things and you should continue to stay pretty well for years to come yet.
I was diagnosed with moderate COPD (emphysema) in 2018, more or less on my 63rd birthday. By improving my fitness, taking my meds and any vaccinations going, avoiding triggers and other people's infections, and running a weekly singing for lung health group, I have managed to improve to within normal levels. That doesn't mean I don't have it, or that my lung capacity hasn't gone down with age, but it doesn't affect me too much in day to day things.
The best warning I got on this site was: don't commit suicide by sofa.
I am 67. I was diagnosed with moderate copd and emphysema in 2010. I had already stopped smoking. I did quite well until 2018 when my husband became paralysed after a fall at work. I had to give up work and look after him full time. I have deteriorated quite a lot since then. My fev is now 24% and I’m on ambulatory oxygen. I have been told I have very severe emphysema and copd . I know exercise is key but it’s so difficult to fit in with the necessary daily routines. If you you can look after yourself by eating well and exercising regularly and attend pulmonary rehab you may help reduce the progression of the disease.
Hi, don't forget you are welcome to call our Clinical Team for a chat about managing your emphysema, 0300 222 5800, we are here Mon- Fri 9am-5pm
Take care
Debs
I am Severe Emphysema. My consultant saw my shocked look when he said the word Severe.
He said every one who is under 50% are regarded as Severe.
You say you are 50-69% so you are doing not bad keep exercising and eating healthy food.
As my Consultant said to me ... YOU got a long way to go yet!!
Don`t let the diagnosis get you down. Live your life as best you can.
I was diagnosed 8 years ago with mild/moderate emphysema, FEV1 of 63. Started exercising almost everyday using an arm machine, rowing machine and Cubii which I purchased from QVC, kinda like an elliptical machine. I also attend the pulmonary gym every Monday. Staying very active but notice I am getting out of breath on occasion. Had my yearly appointment in June and FEV1 was 66 although a couple of the other measurements had dropped. Stay strong, enjoy each day 🐞🐞🐞🐞
Hi. I have severe copd, minimal emphysema with thickening of bronchial walls, and nodules (or noodles as I call them 😄) You've already had good advice but I want to stress how important excercise is. I do yoga, pilates and seated zumba. I only started them after pulmonary rehab and surprise myself by continuing. I've just had a lung function test and although I've not had the full report yet my consultant says I'm stable. I'm convinced the regular, enjoyable excercise has contributed to this.
Hi UTD - I was diagnosed at moderate in 2000. My fev1 is - or was at the last spirometry in 2018 - 36%. Diet and exercise are key to limiting progression. I lift weights twice a week and this helps prevent muscle deconditioning, meaning I can do regular things which require strength. Im actually finding it hard to do my daily walking in this new cold spell even though I do it indoors. Bit of discipline and motivation needed I guess. Trying to breathe through the nose is important too.
I have no idea how the future will be so just crossing fingers! Good luck 
I don’t have emphysema but I do have very damaged lungs & just wanted to echo what others are saying about exercise, in particular building muscle strength. For walking, like O2Trees I mainly do this indoors, up and down the hallway to music, and definitely don’t go out in this weather as cold air is a massive trigger for me.
But what all the physios and indeed consultants at the Brompton say is, muscle strength is more important than anything and over a fairly short time will improve lung function. Really simple exercises eg sit to stands, wall squats, weights.
I’ve got 0.5kg ankle and wrist weights with Velcro fastening so every movement needs that bit more muscle power. You can get heavier ones but I wear them a lot. If you have easily damaged “steroid skin” make sure you get really soft ones, I’ve got these corebalancefitness.co.uk/an... but even so, my skin is so fragile I wrap them around thin clothing and wear them most of the day.
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