How long will I live

[Devon5363]

Hiya,my first time here,I have 28% of my lung capacity,I find it hard to move around the house,u can't see myself living for much longer,I live alone and have know friends,I worry all the time and I think I'm going to die all alone it upsets me, sometimes I just want all this to be over so it wouldn't be such a struggle,is there any hope or is this the beginning of the end,I just want out its so depressing, thank you for reading this..

[hypercat54]

Hi nice to meet you and welcome to the site. There are quite a few in here with similar lung functions and I don't think they have plans to go anywhere soon. A few of them are still working too.

We recently lost a long term member here who wasn't diagnosed until she had 22% lung function and lived for 11 years after diagnosis, so don't lose hope please. I hope your medical team is doing everything they can for you.

I am sure others will be in soon to reassure you but probably not until tomorrow now. Meanwhile stay with us here as we are a big and very friendly and supportive BLF family who all help each other. x

[Damon1864 Volunteer]

Hi welcome to the site, we are one big happy family here, so please don't feel like you are on your own. You have plenty of life left in you so please don't worry. Have you thought about being referred to Pulmonary Rehab it's a great place to meet people from your area

Don't ever think you are on your own there is always someone here to chat with. Please ask your medical team about rehab or support groups, you never know who you might meet. Take care and please keep posting, we would all like to know how you are and have a chat.

😊 Bernadette xx

[knitter]

Hi Devon, I don't know if you live in the UK, but if you do the BLF have a helpline which is open during office hours. 03000 030 555.

Give them a ring and they will get back to you.

Have you thought of getting an alert device which can be worn as a bracelet or round your neck, which you can press for emergency help if you live alone.

But I would contact your health professionals today and tell them your worries and difficulties. They may offer new medications .

Keep in contact here too, nearly always someone around . Best wishes.

[Sparkywoo]

Hi there, it’s a scary horrible thing isn’t it? Depression and anxiety are understandably a common part of it for a lot of people. As has been suggested speak to your nurse or doctor and ask to attend pulmonary rehab. Not only will it help physically but you’ll meet others with similar health challenges. There are lovely people here too who are always so kind and helpful x

[2greys]

I sympathise with your condition, I have a similar lung function (31%), but I feel that you are giving in to it far to easily. I am 68 years and still working full-time and still living a full, good quality life. In fact I have just hired a sailing cruiser for a holiday next May, I will be doing the sailing, taking my partner, daughter and 14 year old grandson as crew. Do not put limitations on yourself, you can do so much if you put your mind to it, a little slower perhaps but you can still do so much. I might add that I am also currently caring for my partner who has had an operation on her hand, whilst still working.

You are nowhere near your end yet. Please take the advice given above by others.

[Izb1]

Hi Devon and welcome, please do not give in to depression, alot of good advice is given above. The way to fight this lung disease is with knowledge and a positive attitude, we have to become fighters. I know its hard but stay strong and join the rehab and support groups they will help you. When I read how difficult life is for some of the members on here it makes me pull my socks up. Love and hugs. Irene x

[Hacienda]

Welcome Devon to our Great Friendly Forum, Please try and not get that Bad, Depression , Anxiety is always near to us here, I, and Some of us here have suffered also. I have, at present 32%, and waiting for my most recent results from Lung Breathing Tests last week. I have been on the Lung Transplant List for 2 years & 4 months now, I do get despondent also, I tell myself how strong and Positive I am, though I am not on my own. Please keep us all updated, we are not far away from you, just in the next Room. Love n Gentle Hugs Dear Devon. Carolina. XXXX

[gingermusic]

Forget about the 28% lung capacity mine is only 19% and I still enjoy my life. Love spending time playing with my grand children, do some of the housework and still do my own washing and ironing and the shopping. Yes it is hard at times and I get very out of breath but I force myself to keep doing these things as no way am I giving in to this.

I want to live and will for as long as I can. Try and be more positive as you do have a future. As somebody else has replied try for a Pulmonary class as they are a great help and you get to meet others as well. I wish you all the best.

[katieoxo60]

Thank you for joining us and a very big welcome to you. I live alone too it is daunting and if you don't get out, every day becomes much the same. It is people like yourself the government are trying to help at present to stop isolation. I think somethink like computor video links would help as would visitors to those who can't get out or maybe car buddies to take people around. What do you think would help you? a car buddy would help me. But this site helps if you can't get out or are stuck at home. Talk away , ask questions you'll soon feel we are all your freinds. Take care

[Comino2 in reply to katieoxo60]

Love the idea of car buddies,I cannot even get transport to pulmonary rehab so have never been unable to attend due to high taxi cost !!.To us who live alone to have face to face contact with other 'puffed out' pals even just for a coffee would be a great mood booster.wish local breatheasy groups could offer lifts too.There are many friendly people on here I have found who always offer support.I found the hardest thing was asking for the support,you can get stupidly independant and battle on.Share your fears,lighten your burden.You are not alone here xxx

[katieoxo60 in reply to Comino2]

Thank you for your thoughts, in some areas things are different. In my city we have a service called ring & ride which will take you to rehab at £1.30 a journey which is £2.60 return it will also take you to breatheasy groups or other groups in the city it is a special needs service run by the local bus company & social services for disabled & elderly. It even does days out & shopping days. Please remember COPD is a disability as are many other illnesses. I appreciate what you are saying about meeting for a coffee most rehab gyms do that. I attend three different groups, widows, arthritis Action , and Coventry Older Voices. I used to attend breatheasy but find my other groups more sociable & informative about whats available in my area. I find many who live on their own including myself often do not ask for help but stoically soldier on. My advice contact social services and ask what is available in your area, a needs assessment might help you, some taxi companies offer special rates for disabled and elderly. Take care enjoy your Sunday.

[Comino2 in reply to katieoxo60]

I have made some enquiries but no joy so far,only age concern who provide transport to a local out of town supermarket but sadly the trip costs more than a taxi would.Your area seems to be more user friendly for the disabled.Don't move to sussex as its not so easy.I will keep checking and asking thank you xx

[katieoxo60 in reply to Comino2]

Good morning, sorry I did not welcome you to the site. At least you did make a start well done. Taxis are quite dear in my city dearer than London I beleive, hence the special service to prevent social isolation. Just a thought what about a get together in your own home a bit like U3A and other groups do, another place to find out whats in your area is in Adult Social Care Directory on your local councils website worth a look. There are other sites like this too if you can't get out and about. Theres also Independent Age which is on line and may have details of things in your area. Churches are a good place for community groups these days as part of neighbourhood involvement don't have to be a religious person or attend church services. Even the police run community services in many areas for all age groups any status. Hope I am not boring you with all this info at one time. Have a good day and I will speak to you another time Bye for now.

[kiracleo]

I'm having a spirometry test on Friday, so I don't know what it is at the moment, because I have just changed surgeries. The last one wasn't even recording my tests. Don't feel despondent I can't get around much because of weakness in my limbs, but I'm not ready yet. I set myself goals from year to year. Like next year I become an octogenarian. The following year are the Olympics. So there is always something to look forward to. Respiratory rehabilitation is a good start. I'm hoping to be able to go back. Look forward with positivity. Sending you hugs and comfort.

[Lyd12]

Hello Devon, lots of lovely replies for you, now please tell us about yourself, we want to help. Its surprising what a comfort a chat with a fellow sufferer can be. Love Iris x

[Sandranna1959]

Hello Devon, I have similar circumstances as yourself and I have no one near me. I have severe emphysema and I've no idea what the lung capacity is. I was also badly burned in a house fire almost 3 years ago. I can't get about much because I was burned from feet to chest front and halfway up the buttocks at the back. I have came through it because I'm not ready to go anywhere yet. I am 59 next week. What I want to say to you as well is my mother is 77 and on oxygen 16 hours a day. She has been this way for more than 20 years now, she has heart problems as well as many other ailments she also lives alone. My attitude is if she can live to this age I can make it to 97. That's something I joke about, I too get frightened when I have bad days so you really are not alone. I rarely leave the house because I can't walk very far due to my conditions so chin up x

[Nona1956]

Hi, Devon, I've never posted here before, but your predicament struck chord. My father had asbestosis, and by the time he died had about 30% lung capacity left. He cared for my mother until she died, before passing away himself the following year at the ripe old age of eighty-nine. Mum had carers coming in in the morning and at night, but otherwise they managed themselves. He had a portable oxygen concentrator to help him get out and about, which he did until the end. You've too much life to live to give up yet! Good luck, and keep smiling! It worked for Dad!

[monju]

Hi Devon5363 Welcome.. Please belive me when I say I was once in that same place as you, just had a major operation and my ex after 25years walked out on me... It was so hard and cruel, here I was fighting a disease that may will win.. On my own with no one... It wad up to me to make a difference, so started with little exercises, I kept pushing and over time progress was being made , it's a lonely planet out there and we have to fight to protect ourselves. I made a choice it do it for myself... I found a lovely group of friends at the hospital and we keep in touch by phone..

Talking is a great healer, evening where worse so I would do movie nights, get the popcorn and watch a film... I could only blame myself if the film was rubbish. Slowly learning to go out and then meeting people... It took a while and building up my strength... Now I live for me and love everyday I wake up... I do belive we all die alone and you will not be on your own... It's a struggle.... Speak to your GP, take all the support group and go... Be you and don't let this take control of your life...

I really wish you well and please keep us informed on who you have met on your journey... Stay safe and keep in touch please.

[davecarol2]

Hi Devon I can relate to this also . I live on my own as many others do . My lung function is 25 % very severe ! but I still get out not every day but I do go out ! also I try and keep posative by doing hobbies ie painting wood carving . I always try and think there are others a lot worse of than me . we have a roof over our heads food in cubbards and tv ect ! I often think of the homeless especially this time of year !! chin up sweetie xxx

[Corin1950]

Hi Devon

You have come to the right place and been given some really good advice. My husband has severe Emphysema ( FEV below 20%) and I have received some good support and learned a lot from this site.

From living alongside someone with this illness I've realised that the psychological aspects can exacerbate the physical. With good support from medics and the community rehab team nurse my husband feels he's got his life back. A very restricted life but something he can enjoy. He wasn't fit enough for pulmonary rehab 6 weeks ago but he went for his assessment again yesterday and he's going to start on 11th November.

Do try to get on a course of this through your doctor or community rehab team. Also find out about Breatheasy groups in your area. In the meantime take good care of yourself by eating well and keeping moving.

Best wishes and take care

Corin

[Superzob]

Probably the best way to look at this is how to cope best with your circumstances, but don't feel you have to do this on your own. Don't be afraid to seek the help suggested by others on this forum - after all, you've taken the first step already by joining us.

One thing you might want to consider is moving somewhere where you have company. This is a big step but, in my limited experience, people often leave it too late to do this. Have a word with BLF and social services, and see what they can do to help - it's what they're there for, so never be afraid to ask.

Good luck and hope things improve for you.

[JoM49]

I agree with all of the above and would add that antidepressants may help and nothing to be ashamed of taking. I find them a great help and we need all the help available. Take care. X

[Dragonmum]

Nice to meet you Devon; it seems that most of us with lung conditions experience a bit of anxiety/depression froom time to time and I think you may be "on one" at the moment. I too live alone, except for my lovely dog who is the best friend in the world - one of the main reasons for getting up in the morning. I ignore all the figures and statistics and just get on with things - in our family we have a saying "Live until you die, and die when you can't help it!" It's the living that's important. You have had great advice from members who have survived the worst that can be thrown at them, so please take time to absorb it - then act on it. I'm sure you will be posting here for a very long time and I wish you all the luck in the world.

[Dmactds]

For what it's worth: At 76, I've been living with this emphysema diagnosis for a bit over six years with a lower 20s for an FEV1 reading. I, too, live alone and most of my friends have long since died or moved in with family out of town or are in rest homes. My elderly cat and I are as happy as is possible at our advanced ages and we persevere.

You can do what you want to do.

[guytane]

think positive go and get a course of acupunchre if you can afford it 6 sessions done the trick for me you will breathe easy never gv up mate

[lKeith]

Devon5363

Hi & welcome. Many on this site have problems but they don't give up as they can see or hear of others in the same boat. Try your GP for a refferal to a rehab course, there you meet people who are the same, others that are worse but you can join in the fun & exercises. Do what you can do & leave the rest. It will be a good experience for you.

You should not be so hard on yourself, go on as as far as you can and remember there are people here that have gone way past expectations because they think positively, you must do the same. There are plenty of people here who will share experiences with you so you are not alone. The nurses at BLF can give you information and point you in the right direction, Try your local palliative care team they will work for you and help with equipment & services you don't even know exist. they are very positive people and if you let them, they can really help.

I found out about them and they have been great, their advantage is they also know institutions & organisations that can help.

So get out of the negative thinking you have and go & do something positive, you will notice how much better you feel.

IKeith

[nansyl]

Hi there, I know exactly how you feel, but hang on in there. I was diagnosed with Pulmonary Fibrosis 14 years ago and when I asked the Lung Specialist I was under at the time "how long", he hesitated and then said 3 to 5 years is the normal for your type of illness. Well, needless to say, I am still here!!! OK my life has changed dramatically, as I used to be a professional dancer, and as I also have Rheumatoid Arthritis, I am now pretty immobile, also having Osteoporosis doesn't help!! (Two hip operations in the last three years). I want to say to you, listen to your body, if you feel like doing a little job, ok, but if you feel like sitting and watching the world go by - do it ! Please don't push yourself. I have a Macmillan nurse visit every month, and she always offers help and guidance, ie physiotherapy etc. I do have a session of physio sometimes, also a massage, which helps a lot. Unlike you I do have a hubby, but he is 77 years old, and naturally, finds it tiring looking after me and running the house, i.e. washing, ironing, vacuuming, dusting, cooking etc. We have just employed a gardener to help him, and four years ago we moved from a 3 bed house to a bungalow, which has made life a lot easier for us both.

Devon, please take not of everything people have said on this site, honestly it is all true, and try and feel positive. It will help I am sure.

Keep in touch with us all, lots of love to you. I pray you will soon feel stronger.

xxxxxx

[Shazrab in reply to nansyl]

Hi nansyl , I just wanted to say you’re post has made me feel like there’s others like me !! regarding your hubby doing everything. !! You honestly touched my heart with you having PF I’m amazed as I’ve not heard of anyone bearing the 5-6 years . I am at the moment feeling very similar to Devon ..it’s so hard to feel positive sometimes as I’m just learning. This myself I have copd and I’m also rock bottom thanks so for sharing, I also wonder how much longer can I live with this illness ? This is a great site that’s helped me so many times. I wish you the very best and keep doing whatever you are that’s keeping you alive best wishes 🌹

[Rebecca6]

Hello Devon

You have come to the right place. There are so many people here who know about living with lung conditions and are more than willing to share their experiences . I find some give better advice than the doctors because they take the time to explain it.

I can understand you are feeling depressed by it all because I've felt the same myself. You have got to make the effort to get out because no one can do it for you. Ask the doctor about any groups that can help - for your lung condition or any sort of help for your mood. Try to be positive. Don't give in to it. I will add you to my prayers so I want to read of any progress you are making. God bless xxx

[Zenga]

Hi there Devon5363, just joined myself...

I am COPD sufferer too, with growths in my lungs (approx 3+ years now).

2 years ago was in hospital with a collapsed lung following a biopsy - my consultants were also trying me on TB meds which sent me downhill rapidly (could not walk even a few yards, and had really deteriorated to point of death) I was pretty worn out and hopeless to say the least.

I stopped the TB meds myself - began to inhale boiled salt water nightly then gargle to stop my airways from blocking overnight - I also began to take a SERRAPEPTASE tablet daily - I am a different person today thank God!

I am on just inhalers now - I still get out of breath after any exertion, but I recover quickly, my growths have reduced and I can walk and even cycle regularly too.

TRY SERRAPEPTASE!!! It is available from health food suppliers or online, it is natural and will not affect your prescribed meds - (about £17 for 3 months). Try salt water too or ask doc for saline capsules for your nebuliser.

Mostly try not to lose hope, it's an awful debilitating and depressing disease, but I hope the info may help you with your condition.

Take care. Zen

[Kittykat2]

Some amazing replies you have got Devon from people with similar fev rate to you.

I am same too......... and find these people so inspiring .

[Nanato10]

Hi Devon5363,. I was diagnosed with COPD 20 years ago, after living my entire life suffering with undiagnosed asthma. I have been using an inhaler, now have been graduated to using oxygen at night. My doctor wants me to use it 24/7 but I am fighting that one. I really think that would make me unable to function without it ever. I don't want that...maybe the day will come but hopefully not. So far I am holding my own most of the time but do realize when I need it to just make it through the day. I went through a pulmonary rehab but it didn't make much difference in the day to day living. I had to stop due to a hospitalization because of an exacerbation....never was able to find a reason why but still here and hanging on. Please keep the faith and and try to find a support group where you could at least make a few friends. God Bless and keep thinking positive.

[CornishBrian]

Hi Devon...I will talk to you even though you lot do put cream on first. First thoughts on reading your posts....you do have a roof over your head.....you have been diagnosed and so help is being offered....Praise the Lord...you live by yourself...fantastic, you've only got to get food for one, don't have to clean up others mess and you are in control of TV remote ....what a life you have.....your body is showing you the way forward....how? When you run short of breath, your body automatically takes control and exercises your lungs, hard, to correct the situation...great, all you've got to do is help your body by exercising the other parts...nothing strenuous...chair based exercise first if you wish, no, eating chocolate is not exercise...there are plenty of exercise programmes on YouTube...and they are free..,it's just getting better .want to swap places? Actually, we are in similar positions ....I live alone now, since my wife of 47 years told me she no longer loved me and wanted me out, that day. On our wedding anniversary too....so I'm alone in a bungalow but have now got a pendant alarm coming. I have a lung function of 21% but one thing I don't do, is take it to heart. These measurements are ok but only for comparison. The measurements are taken in one particular time and date, in in familiar as situations with no consideration given for how your day is. The number of times they have taken my blood pressure at a surgery to see them tut tutting and shaking their heads....a couple of minutes later, it's all smiles. I bet they never asked you if you had a chest infection or cold within eight weeks. You shouldn't do any breathing tests in that time period...sorry now, you are beginning to wish I was dead, just to shut me up....I'll have you know that now I have repetitive syndrome in my typing thumb. Well there's another challenge for you, out live the Cornish man.

Seriously, if you need to, please personal message me and I will help you find a way forward .....even if your lot did try to claim our pasties.

[wheezyof]

Hello Devon,

Depression, anger, why me? All quite normal when lung disease comes along and knocks you for six.

However, as you can see from all the replies, it's not the end of the line. We all have a life, just a bit different to the life we had before.

Contact the British Lung Foundation. Look at the web site. Read the stories on there of how other people have built new lives.

Find a support group near you and go along to a meeting. I go to a Breathe Easy group near me, it's the best thing I can do. I've made new friends, learned a lot and had fun.

Meanwhile carry on posting here, we'ed love to know how you are getting on.