Severe emphasema

My husband aged 74 was diagnosed with severe emphysema. He has been on oxygen 24/7 for 3 years now. He stays active and most days feels good. But he is so concerned about his future. We don't any of us know how this life will end but he can't really find anything that tells when that will be .Or how. He feels like there are things he needs to take care of before he isn't able to. He recently had a lung capacity test and will get the results of that this next week. Can the Doctor tell him anything as far as how bad he is? I read on here about people who have had this disease for a long time. But not necessarily severe.

17 Replies

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  • i dont think we or any doctor can say can answer your questions jan.

    we all have things to do so why not do them now and put your mind at rest.

    some people do live for many years even with severe stage. others are still around for a good few years when there in the end stage of there illness.

    what ever the the outcome of test is, the most important thing is how you are able to coupe with your illness.

    and if your really lucky you could have someone near you that cares for you.

  • Dear Jan,There are many people on this site who are living with severe diagnosis of Emphysema,COPD.Ideopathic lung Fibrosis and many more lung related diseases and like your dear husband are both active and feel reasonably well for most of the time.

    Everybodys conditions and diagnosis are specifically individual so nobody can give us a crystal ball prediction of our outcomes,However your GP,Consultant and respiratory team should be giving you honest evaluations and advice and ways to manage quality of life.

    There are many practical things that you can do to prepare for the future such as implementing an L.P.A,liaising with social services so that if you have to take over responsibility's of a financial nature or apply for appropriate benefits as an appointee for your husband etc etc.

    For support and love we can give you an endless feed of both.

    Best wishes skiscool mike

  • I was diagnosed over twenty years ago and am now severe stage 4 and on oxygen 14/24. I have an appointment for a lung function test on the 24th of this month but to me these are just figures. If I feel well and can move about as much as usual then I don't worry. Stress is one of the worse things to affect the breathing. Time for my shower, out to lunch at a local eatery with my daughter and family today then off on holiday tomorrow. Keep smiling

    Carole x

  • Have fun! A shower is one of the hardest things on him. The extra energy it requires plus the humidity really take their toll. If he takes a shower that is it for the day. I do understand about how important a good attitude is and his is remarkably good.

    Thanks for answering.

  • Jan,

    I'm 74 also and have severe emphysema with a FEV 1 reading of 24 and that's where it's been since my diagnosis nearly 5 years ago. My doc tells me to stay on oxygen 24/7 at 3 setting but..., I've had several problems with that, not the least of which is whether I use the oxygen or not doesn't seem to make a lot of difference 'outwardly' except for the weight of lugging the thing around in a case with a shoulder strap which makes me breathe harder still.

    Internally, I realize it's so that my organs have more of a chance of getting the oxygen they need and to that end, I do use the tank for several hours each night while watching television or some other sedentary effort.

    The question of "taking care of things" remains for all of us and so is something we all need to attend to when it seems proper and timely to do so. I would think at our age, your husband should realize it's not as "long a road" that is before him as it has been, so he better start cracking !!

    As far as how long your husband may have, if that's your central question, I think we're each different and the "final moment" can come at any time regardless of health concerns generally. I think all one can do is "Keep On Truckin' " to the best of one's ability, enjoy the scenery and "take a bit of what is all around you".

    Regards,

    Duncan

  • My husband has a condenser at home and only has the tanks when we go out or he needs more than 10 liters of oxygen at home. His condenser has a 50 foot tube which allows him to go anywhere in our house. He can sit with no oxygen on for a short period of time other wise it is on 2. But if he is moving around it is on 6 and if he is on the treadmill it is on 10. We have family 9 hours from here. I think that is really on his mind as far as going more often. We have family here who have offered to take us to see them. And that is what we have done the last two years. and will again. Your right enjoy life! Thank you for answering me.

  • I liked the words lugging the thing around I feel like that it's an 'it' and 'thing' at the same time grateful NHS supplied it. 😊 Sam

  • Jan he mite live for years and go out with something else so enjoy your lifes to gether and i hope the two of you have years together as life is to short to worry

  • Your right. It will be 56 years in July. It will never be enough. Thank you.

  • I been with the wife for to long we grown up to gether got marrid on my 18 birthday and stuk like glue like i say enjoy life and take each day as it comes and do not look back but i wish i will be a round for a very long time yet but one can wish :) :) good night sleep tiet

  • So hard to know the answer...even if there is an answer.I have 27% Fev and am not on oxygen and yet quite mobile.Try to exercise on treadmill at least 3 times a week.The more exercise you try and do the better I think.Stay positive and motivate yourself...cheers.

  • He lives weights every other day and walks some on treadmill every other day. He turns the oxygen up and does it. The weights are the easiest. I think because he is sitting. The treadmill is hard even very slowly. We know how important it is to stay active. Most of the time he sits at the computer. He can't exercise all the time. And walking very far wears him out.

    Thank you for answering me.

  • I understand you fully. I wrestle with the same question, and wish I had an answer for you. My husband is 67 and is stage 4 emphysema. He's had it for about 17 years. He's been on oxygen 24/7 for 2 years. Until recently we didn't worry too much about it. Lately he hasn't been doing so well...and I worry. But I'm trying to just take one day at a time and enjoy having him by my side in the right now. What will come will come whether I stress about it or not. And this is a work in progress for me. I struggle with it daily. I'm the type of person that can handle anything if I know what to expect and when to expect it. This disease is teaching me that I don't and can't have all the answers that I want/need. My husband and I are just trying to live our lives to the fullest each day for now.

  • Yes to everything you said. He was in hospital 2 times this past winter. Once because he had a flare for over 3 months and once for pneumonia for 10 days. that time he went by ambulance. He is seeing his specialist this week . In April he was put on all kind of new medications and hasn't had a flare since. We're hopeful.

    Thank you for answering me.

  • Any time! I find it so helpful to have folks to talk to that understands where I'm coming from!! You can private message me any time. Hugs to you!

  • Thank you! I don't know how to private message.

  • To use the message facility just click on the name of the person you wish to message. This will take you to their 'home' or profile page and there is a 'Message' button at the top right. Click on that and you have a text box to write in and a 'send' button for when you have finished the message. When you get a message there will be a little number appear where your name is on the bar at the top of the page. Click that and there is a drop-down menu from which you can select 'Messages'. :)

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