Hi all new to this site, been scared silly about my diagnoses for past few months i am a single mum aged 38 and have two beautiful kids both under age of 13.
My question to your all is
I was diagnosed last october with chorin astma and emphacema. My fev1 result is at 41% reading what i have online i have severe emphacema.
I am a healthy weight but have been smoking since i was 16 in process of stoping for kids now.
I know people cant give me exact time frame i have but when i speak to docter they are telling me defo will live a few years. I am in process of writing a will for my kids but scared that i may not be here long enough to see them grow old and what will happen to them when i go.
In short can anyone advise me roughly what my life expectance is as i know i need to sucure kids future and there welfare before i go and want to know what time i have to sort this
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Fuzzybee22
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Sorry I can't give you an exact time, but don't worry you can live a long time. Eat healthy and exercise, and please do give up smoking it will increase your life span or at least help. Try not to worry and live every day as it comes. Please keep posting and take care. Love Bernadette 😳 xxx
I know hun guess its just scary being told definately a few years, quiting smoking is in play and my mind is set for that. I guess i am scared being it has been very progressiveover the past two years. From no astma or breathing problem to severe emphacema and chornic astma just scared its going to progress to quick. Reggarding enjjoying life i am trying my best but hard when worring about where kids will go when they are both refusing to see there dad for welfare reasons
Stop smoking immediately. That is probably the reason the last 2 years you have been getting worse. Second hand smoke is really as bad for your kids as y ou. I was raised on 2nd hand smoke and now have asthma, bronchieactesis and possibly an ILD. You need to immediately stop both for yourself and your children.
Ty hun but not ranting it more just need to know exacts can handle that better then not knowing driving me insane. I think if i knew other that were in same situation as me migt reassure me that i will be here at least till my kids are old enough to look after them selfs. Guess thays whats scaring me more then anything
I’ve had emphysema for eighteen years now,believe you’re doctor,stop smoking and you’re quality of health will improve,I believe you won’t have to worry and that you’ll be around for many years to come x
Hi there are people on here with much lower lung functions and have been for many years. I don't think any of them plan on going anywhere soon!
I won't kid you as 41% isn't good but by leading a healthy lifestyle and most of all stopping smoking there is a very good chance you will not only see your kids grow up but also your grandchildren too. Whilst it is a progressive disease you can hold it steady for many years or it will only deteriorate a bit so take heart. x
Hi Fuzzybee22. Let me tell you a little of my Emphysema. I was first diagnosed 19 months ago as severe, FEV1 @ 37%, not too dissimilar to your own. My CT Scan was slightly worse with just 30% of my lungs left working. I gave up smoking immediately, cold turkey, took up a healthy diet and started real exercising. 9 months later I had boosted that FEV1 to 50%, I had trained my 30% lungs to work much more efficiently. I still work full-time, on my feet in the workshop all day. I am limited to walking 5 miles at a time by peripheral cardio-vascular disease (another gift from smoking) but still not to sniffed at when you consider that on diagnosis all I could manage was just 35 yards without having to stop. I also have an app on my phone that sounds an alarm and tells me which medicine to take, I have never missed taking any of my meds and on time.
You too can do the same. Ask to be referred to Pulmonary Rehabilitation, a course of exercising and education about your disease and how to manage the symptoms.
Not that age matters, but I will be 68 this year and have no set plan to retire any time soon, if I can do it then a youngster like you can as well. You have many years left to enjoy your children growing up if you set your mind to it
Stopping smoking asap and eating healthy with regular exercise will all massively help. With the right treatment (make sure you get referred to a specialist) and living healthily you could improve things a great deal and go on for many years. Very much the balls in your court now, the progression can b slowed down hugely with lifestyle. And in all honesty smoking is going to be the deal breaker. Get all the help you can with it but I do think cold turkey is the best option, my mum stopped at 68 after 50 years and she's managed which has amazed me I'm so proud.
I'm sure being a single mum with younger ones your used to being tough anyway so I think you'll manage and surprise yourself.
If you're an addicted smoker, as I was for 60+ years, then you could put yourself through the "cold turkey" cure and in 1 year or 2 fall off the wagon and back to square one. It will be eight years tomorrow that I switched to an e-cig, no withdrawal pangs, and no smoke or tar going into your lungs. You'll still get your nicotine hit, which is about as harmful as a cup of coffee - it's the tar that kills. Whatever method you choose please stop smoking - I found it was the difference between life and death, seriously.
Hi Fuzzybee22, I recently joined this forum and it is great support. Keep your hopes up, but also plan. I think it's wise to have a will and put in place provision for your children in case, but you must keep your hope alive. If not for you for them. Enjoy everyday as Damon1864 said. if you can spend quality time with them where possible and go away do this as much as possible. I have been diagnosed with a chronic lung issue, and I'm a single parent to 3 (2 adults and 1 10 year old) but I'm determined to enjoy my time with them all. Iv got a will for all my children and put things in place. I also take my health seriously now. I exercise 5 times a week and eat healthy to prolong my health state especially for my 10 year old. Please give up smoking it will enhance your life. Keep going NEVER give up.... Bless you 😊
I'm sorry to read about your situation. You are only 38 and with children who depend on you. I'd like to think you have many, many years left.
Everyone's disease is unique to themselves. Progression for each individual is exactly that, individual. So please don't think you won't be around to see your children grow up. I see you are in the process of stopping smoking. Very good for you. Not only will it help you breathe better but also deter your children from possibly taking up the habit in future.
Has your doctor spoken to you about pulmonary rehabilitation? If not please do ask. It helps a lot and you will meet others in a similar situation. Eating healthy and keeping mobile is so important too. Exercise is really key.
Please don't despair. This is not the end. Do come here often for advice and support. So glad you found us.
For the love of god woman quit smoking!!!!!!!!! Don’t think just do it now. I smoked for over 25 years and it was the hardest thing for me to achieve. Look at yourself as a drug addict most people don’t realize this. Also when you’re at the 1 year mark and you still crave one after a stressful day guess what you’re still addicted. You stop getting urges completely after a few years. I wish you luck I really do.
Also exercise exercise exercise exercise and don’t pay attention to the doctors they will take away your hope don’t let them. Make a decision today and run in that direction and keep running and you will be fine
The important things is to keep yourself as fit as possible to fight off chest infections. You need to stop smoking now . The longer you leave it the worse things will become . Get yourself on a fitness programme and try to lose some weight. You may have a pulmonary rehab class in your area. Ask your GP to refer you. They will give you an exercise regime to follow and education to help you understand how to manage your condition . Unfortunately there is no cure but you are still young and can prevent further deterioration . Stay positive .
I can’t sleep cuz I’m thinking of YOU, a total stranger I’ve never met, or I know you all too well.? I’m in no way making light of your situation but check it out girl-NOBODY knows when anybody’s goin whoever you believe your creator is-that’s who knows. When I was 25y/old and had a little boy of 1&1/2 I had a stroke while we were out shopping... ambulance-hospital a few hours later they were in my heart trying to fix it. I awoke to doctors whispering and machines seemed to be attached to me at every angle. Dr said it was likely I wouldn’t make it through weeks end ( I was also totally paralyzed on left side) I thought he was joking! My heart,lungs and a few more vital organs were infected an I was a very sick young lady. I just turned 52 last month. An I’m still here in San Diego,CA. and life is pretty good. I’ve had 3 more open hearts since then and the last one was full of complications an I awoke to docs telling me I had COPD, emphysema, chronic bronchitis and asthma. I laughed and laughed and laughed begging them to stop as the laughing was making me go into coughing attack. I admit the lung problems get in my way more than being hemiplegic but I’ve found some great coping mechanisms and the only thing I use that comes from drug pharmacy is the rescue inhaler. My #1 go to is accupuncture and healthy food, clean air helps A LOT! All of us should have a plan for our kids if something were to happen to us, but truth is most of us don’t. If I were a gambler I’d go ahead and put all my money on you(not a doctor) so figure out how you’re going to find comfort and save your own butt! Be positive. Don’t cry when you look at your children. And be your own advocate and figure out how to heal yourself, our ancestors managed with very little resources and no such thing as technology. I apologize if I didn’t give you the answers you’re looking for and sorry if I sound rough but I don’t want or need anyone’s sympathy and neither do you. I promise. You need love , support and strength. Please find them and I’m sure from my own journey- doctors are NOT gods, heck they’re not even spiritual leaders. Yeah you gotta listen to them and follow direction but they don’t know when or where your demise lyes. I completely understand you and where your head is at. I too asked my Cardiologist once how long was I gonna live and I wanted to know exactly how I was going to die. I thought since all the heart operations I’d have a heart attack and his answer to that was”you’re not that lucky”. Most fatal heart attacks happen while people are asleep and they never feel a thing. I’ve learned to laugh at most things and have a team of doctors that usually ask MEwhat’s wrong with ME. I hope all the best for you and will be thinking of you- kind regards, Mary.
"figure out how to heal yourself, our ancestors managed with very little resources and no such thing as technology. " And they died younger and from diseases that are now curable.
I cant give you a time but im 70 years old now and have had my condition for 14 years and if i didnt give up smoking i wouldnt be here today .Please give up smoking for your kids and you .We are all here for you . Take care xxxx
Hi, I am sorry to read of your worries and see that many of the very knowledgeable and caring folk here have offered some great words of support.
My experience is slightly different in some ways: it is my Mum who has COPD and I care for her and come on this forum to moan about her behind her back.
Seriously I come here for support and answers to any questions etc.
However, in 1997 I was diagnosed with Hepatitis C, just after my 2 youngest children aged 10 and 11 had moved in with me as their mum and I were divorced.
So you can imagine my despair at the news that I may be contracting liver cancer or something similar at some point and also that because I had the type of Hep C that is pretty damn hard to shift: a real survivor; and there was little chance of being cured using a years treatment of injections in my stomach every week and tablets like chemotherapy every day!
So for a long time I would lie in bed making deals with God about if I could live another 8 years then the kids would be ok no maybe 10 years would be better etc etc.
Eventually it went to the back of my mind and wasn’t there all the time. I did what the Specialist Nurse team told me like no alcohol: drink water; I kept fit and ate well and did what I could.
Well, my kids got to 28 and 30 years old and I was still Hep C positive but also still alive and kicking.
I have an incredibly happy ending too for which I was blessed. Since my diagnosis and a couple of years ago a new treatment was developed called Harvoni which a very kind nurse I knew put me on the 3 month trial.
And it cleared the Hep C!!! Which I still don’t believe but it is true.
I guess the point is; look after yourself, do all you can to keep well and as others have said you can go on for years and years.
‘What a piece of work is a man...’ someone wrote and when I think about what amazing bits of kit our bodies are I know what he meant.
Take care, I worried myself to sleep for years and didn’t have to and it made no difference anyway.
And I also didn’t have friends like there are here to encourage and support me and put up with my insane rants sometimes and tactfully point out my inappropriate posts (which I don’t make any more honest Mrs Mummy sorry again).
All the advice here is so precious from our Forum as Everyone knows what they are talking about. Pease take heed, Your Young with small children, You will live to a Good age if you Stop Smoking....I am not Young anymore, But OMG I feel a lot younger since I stopped smoking with the aid of an E Cig, I will never say anything against them. I also go to Rehab, Breathe Easy Exercise classes and The Gym, someone gave me an Exercise Bike, which I watch TV on as I Peddle and I also wear a Pedometer Watch every day. It's a great thing to be Positive and make yourself Better. I have just had my 3 monthly Tracking Appointment at Birmingham Transplant Hospital ( on the List), they said I have improved on all aspects of my Body Functions, all due to not smoking, exercise, and generally having the will to live and Plan for my Future. I have now registered with " Steps to the Moon" which is a BLF promotion, so you see sweetie we all need "Goals" in our Lives to keep us going......I will be thinking of you and your little ones and I send Love and Hugs to you all....XXXXX Carolina XXXX
Thank you every one for your feedback had a good cry while readding all your post but i need it. Reggarding quiting smoking i have tried ecig but my body has had elergic reaction to it so extreme measure i start tablets on monday to quit smoking i know that is a defo must.
Regarding eating health and exercise up tp two years ago i could walk for miles and enjoyed being out in coutry. past two year my health has deterioted very rapidly and i now strugle doing a ten minute walk even with inhaler and preventer but i still keep pushing my self i now the momment i stop i will go down fast so pushing it every day.
Regarding any help i am seeing a respirotory nurse and docter at hospital. Apart from that just my normal docters just dont seem to be getting much help from them regarding information and i am so glad i have found all of u to talk to over due need some direct answer.
Guess just so scared as gone from a healthy, active bubbly person who eats healthy, came of drug and been cclean for 16 years annd a fighter to what i am now is scary never had any breathing issues they have come on to fast and now i am not as active as i used to be still eatting healthy my down fall is my cigrette habit and that is being addressed. I have recently gained abit of weight as i was underweight last year so feeling good reggarding that just scared i guess.
But yes trying to stay positive and i know i have to keep figting for my kids sake and that is my motivation and cant love my kids more, specially now more then ever they are my rock.
So yes thank yyou for advise and i will ask for pulmonory rehabilitation as not been offered that as still got one blood test to do regarding aatd then all test that need to be done are done.
Thank you all for advice and info on your experience has given me hope to keep fighting as long as my body will possible hold out
Hey fuzzy, please accept these suggestions as a token of love from someone in similar situations as you and many here on this site. Quit smoking for yourself first, then you will be able to enjoy the company of the kids for yourself. It is not being selfish and it helps if you think of it that way. I quit after 40 years of heavy smoking. Think of ways to enjoy whatever time you have left rather than stressing about how long that will be. I was diagnosed with emphysema in my 20s, have had 23 surgeries and fought off 2 cancers( still fighting one of them). I am almost 74 years old and went ice fishing with some very good friends yesterday. Today feeling the arthritic pains from it, but loving that I did it. I don't write here often but do read it daily. There are some wonderful people on this site who have first hand advise and suggestions. Read, choose which to follow and keep a good attitude. Wishing you a great enjoyable life, however long it is,
I didn’ know you were having a hard time w/the doing away of smokes, oh my I’d be honest in saying it was the hardest thing I ever did willingly! I was pretty much on constant sugar for a good month. Did a lot of gumchewing and water drinking, I quit drinking alcohol many years prior. I remember I took a bath and put a cup of olive oil in water, soaked and layedback and got my hair wet then stood up to shower and wash off all the oil and there was no oil on my skin! My poor body was so dehydrated from smoking it drank up the oil on my skin! I was amazed then as I still am today, weird how we would even think of doing something so bad for ourselves when we would never intentionally do that harm to anyone else
Your FEV 1 at 41% can be improved if you stop smoking. (Living) proof is I am still here 19 years after I stopped smoking. My latest FEV1 is now 51 I think.
Eat healthy and go for walks if you can, but most of all try and stop smoking. This is just my opinion but I would not turn to E Cigarettes as a substitute as you are breathing in steam. Last thing and COPD sufferer needs, is fluid of any kind on the lung.
BTW I have -Emphysema, a scar on lung, and Angina and CKD at Stage 3 - I am still here though and put that mainly down to stopping smoking..
People can live a long while with Emphysema as Bernadette said in her post, try and stop worrying - All of us on this thread have lung problems..
Post anytime you will always get help kind replies from this community.. good luck and do try and kick the ciggie's
You will probably live to 80 or 90. I've got a 31% Score and am 56 years old - have smoked almost everything under the sun for the last 30 or so years - I feel fine - am not ill - lead a normal life.
I don't think emphysema as such affects your life expectancy, but of course, smoking or poor diet might do. The emphysema is the condition you have as a result - not why caused it.
Well Fuzzybee22. What can I say, 10, 20, 30, 40 years, who knows, but I will say you are not going to die anytime soon if you take your meds, keep moving as much as possible by walking, swimming, exercising whatever you can, and STOP SMOKING that is the one most important thing to do for you and your children.
I am 76, I was diagnosed 15 years ago, but I know I had it several years before that and I have absolutely no intention of going anywhere.
This is not a death sentence, yes it is still progressive complaint, but if you are sensible and eat an healthy diet, keep moving and STOP SMOKING, have a word with your doctor about Pulmonary Rehab where you will learn all you need to know about this disease of ours, have a positive attitude, try to stop worrying, keep working as long as you can and you should have many, many, many years ahead of you. Take care and breath easy xx
No one can give you an answer to your question as we are all different in how our condition effects each and every one of us. First you need to stop smoking for yourself and your kids, no ifs or but. Healthy eating and regular exercise will also help you in the long run. When you see your health care professional ask questions about your condition, what if any medication can slow things down, Pulmonary Rehabilitation classes are great. Stay strong and don't give in.
We have people in their ‘80’s and ‘90’s here with emphysema and asthma. I am early ‘70’s with emphysema, so it is not a death sentence. Regular exercise is. I have found the best way to improve your stats. I was first tested and was 70% now I am 80%. It’s not all about giving up smoking. Champix works well, I am told.
Hi I was diagnosed about 10 years ago I only have 30% lung capacity but I'm ok I still work full time don't get me wrong I struggle doing normal duties I cannot do them without struggling sometimes more that others just give up the smoking and exercise eat healthy it all helps if never been admited to hospital
And I have had days and good days hope this helps take care
Dear friend, do NOT go to the negative. There is so much hope. DO NOT NOT NOT google for info. It is inaccurate and eye-catchingly false. Lots of scare stories. Stick with us kid and we'll give you the real experiences, and you'll get some laughs too. Be positive!!!
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