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I'm newly diagnosed and terrified. Feel so alone.

FreshFlowers3 profile image
80 Replies

Not sure what I'm suppose to do.

I've never been so scared in my life.

I googled this disease and read that life expectancy is 5 years.

I'm new to this site. I'd like to meet others with this disease and learn effective ways to take care of myself. My doctor told me to get immunized in the fall and go for walks a few times a week.

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FreshFlowers3
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Swerv profile image
Swerv

Hi, you need to stop thinking about life expectancy as there are things you can do to slow the progress. Your Dr's advice about going for a walk a couple of times a week is not very helpful. You need to think about exercising 30 minutes a day walking, cycling, swimming...all good for you. Blow up balloons, search youtube for videos on pulmonary exercises. Also think about your diet as you need to take care of your body, especially your heart. Fruits, vegetables, no processed food. Search COPD diet to find out what you can and cannot eat.

Do all of these things and you will slow the progression down.

Over a year ago i could not walk 100 yards without being breathless, i now cycle 7-10kms, swim, walk the beach for 30-45 minutes plus i have just started some yoga exercises.

Search my previous posts on here about cannabis oil as i no longer take any medication.

Do you know what your FEV% was?

Merv the Swerv

FreshFlowers3 profile image
FreshFlowers3 in reply toSwerv

My Fev was 76%

I'm on Symbicort and I'm having lots of side effects. Thankyou for your advice. I think I'll join a gym today.

Swerv profile image
Swerv in reply toFreshFlowers3

@freshflowers3, 76% is mild stage 1. Exercise, diet and you will die of old age.

I was 69% stage 2, now 78% stage 1.

FreshFlowers3 profile image
FreshFlowers3 in reply toSwerv

Hello Swerv... I looked at my test results and I'm actually 78%. My doc said not quite stage one??? My spirometry was normal but borderline fev1/fvc ratio. Normal lung volumes and normal diffuffusing capacity.

It's all so shocking for me. Naturopath said that if I take good care there is no reason that this disease will progress??? Could that be true? I'm going off of my Symbicort and I'll just use rescue inhaler for now.

It feels so good to talk about this.

Swerv profile image
Swerv in reply toFreshFlowers3

@freshflowers3, 78% is classed as stage 2, stage 1 where i live. This will help: webmd.com/lung/copd/gold-cr...

The thing about COPD is that it will progress, but if you follow the advice give you will slow the progression down.

I was diagnosed in March last year b FEV had increased from 69% to 80%. Recently it was 78%, i don't worry about the reduction as you can have a different result on different days by a couple of points.

FreshFlowers3 profile image
FreshFlowers3 in reply toSwerv

That is encouraging to hear about your success.

So weird... I did have gold standard pulmonary test. Pulmologist said small airways were borderline and that officially this was with in normal limits. Not quite stage 1.

I think about every breath I take... I'm going to go crazy I think, asked doctor for anxiety drugs and she said no. 😰

Swerv profile image
Swerv in reply toFreshFlowers3

Maybe the criteria is different in Canada? It is here. Whilst 78% is normally classed as stage 2, i am told i am stage 1 now.

FreshFlowers3 profile image
FreshFlowers3 in reply toSwerv

What are your symtoms

Swerv profile image
Swerv in reply toFreshFlowers3

I am a bit short of breath first thing in the morning,

When first dx i could not stop coughing, then found i was out of breath just walking a hundred yards. Now i am fine.

Diet and exercise.

soothsayer profile image
soothsayer in reply toSwerv

In England your not considered to have copd until your Fev1% is under 70%. 4 years ago I was diagnosed with a 67% fev1% , and in that time it has dropped to 34%, I had a bi-lateral pulmonary embolism so that caused more damage than normal.

jjnanna profile image
jjnanna in reply toFreshFlowers3

Don't think about your illness or it will overtake your life ...... take your meds and keep healthy .... from a 1 lung/COPD/heart failure person ..... I look forward to tomorrow cos I know it will come !

tamariki profile image
tamariki in reply toFreshFlowers3

SYMBICORT is taken as both regular maintenance treatment, and as needed in response to

symptoms. It is usually taken twice a day. Your doctor should also have given you a "rescue" inhaler, such as Ventolin in case you suddenly get short of breath.

Using Symbicort can give you candida in your throat, so you should rinse your mouth every time you use it.

I am not a doctor but going on what you have said about your FEV1, you are a long way off needing cannabis to help. There are many drugs and inhalers being made available. Exercise is the best way to keep COPD at bay.

This Canadian site has a lot of advice about living with COPD, including videos.

on.lung.ca/breathworks

Whatever you do, don't get downhearted. If you stay on this site, you will meet people who have had COPD for over 20 years, who are prepared to share their experiences.

gallmoe profile image
gallmoe in reply toFreshFlowers3

I feel the Gym might be too advanced for you why don't you look up resporitory rehab they are wonderful and are trained to teach you the RIGHT types of exercise for you. They can be contacted through your local hospital, and doing small amounts of walking a dat does help you .

Gallmoe.

FreshFlowers3 profile image
FreshFlowers3 in reply togallmoe

I did actually join a gym and I've been walking about 30 mins on days that I don't go to gym. I've been taking vitamins and supplements, improved my diet 150%. I feel amazing and shortness of breath is so much better. I'm off Symbicort and only use rescue inhaler. My doc never mentioned respiratory rehab. Medical in Victoria bc Canada is really bad. It took months for me to get the gold standard pulmonary function test. My doc called me in for results but couldn't even explain results.

tracyball1 profile image
tracyball1 in reply toFreshFlowers3

I was terrified when I was diagnosed I was only 38 and thought the same I only had five years to live, I started walking 3 or 4 times a day, keep as active as possible, don't smoke and avoid people with colds easy said than done, but definitely keep exercising xx

jjnanna profile image
jjnanna in reply toFreshFlowers3

Go and see your doctor who deals with your breathing and ask about other inhalers a lot of us are off Symbicort and on Fostair and Ventolin and feeling very much better .... worth an ask x AND keep positive xx

soothsayer profile image
soothsayer in reply toSwerv

I don't get it , I must take this into my doctors cos I'm in the severe stage and next stage is palliative care they say, I can't do anything physical at all really, I smoke but I'm on a ton of inhalers and blood thinners plus I ave hiatus hernia so I have a bunch of medications, water tablets, synthetic saliva as I don't produce any anymore, they have now told I have emphasema and hyper inflated lungs and the co2 rich air can't get out?.........I would give my left arm to get my breathing back, I'm 54 and I had just finished restoring an old wooden boat and as I got her in the water that's when this all started so that's gone now, just don't know what to do anymore and living on your own is tough too sometimes, sorry I'm rambling...

Caspiana profile image
Caspiana

Hello FreshFlowers3 . Welcome. 😊I thorougly understand your fear. What disease have you been told you have? I have Bronchiolitis Obliterans. I too have read that life expectancy for BO is five years. One of the best things people have told me on here is to stay away from Dr. Google. That advice that has helped me no end.

My friend said to me lately, only God decides how long we live. I'm not particularly religious but I think he makes a good point. Doctors can't really tell us either. All we can do is our best to stay as well as we can. I make it a point to laugh and love as much as I can everyday.

Sending you a big hug. I hope we will hear more from you. ❤

Cas xx☀🌸🌷🍀🌺🌻

FreshFlowers3 profile image
FreshFlowers3 in reply toCaspiana

I have COPD... Not quite stage one. I quit smoking 12 years ago and only smoked 3 or 4 cigarettes a day for 27 years. I guess that was enough to get this horrible desease.

Thank you for the hug❤️

Feels good to chat... My family doesn't no about this yet.

Caspiana profile image
Caspiana in reply toFreshFlowers3

FreshFlowers3 . You know you can come here anytime to talk. In fact it is very therapeutic to be amongst people who understand and actually live the life. Doctors for all their good intentions do not feel what we feel. Not their fault but they just want to medicate. People here help to soothe the fears and anxieties. Your fev1 is not bad actually. Keep fit and you have good chance at leading a long and productive life. My fev 1 is in the 40s. But I tell myself that's not a good enough excuse to give up.

Sending you another big hug!!

Cas xx 🌻🌹🎶🌸🌼🌷

P.S. Tell your family when you are ready. 😊😁

luckydon profile image
luckydon in reply toCaspiana

Hi I see your in stage 1 ive not been given that ive just been put on pumps and had 2 chest xrays which were clear ive had the lung test which doctor said was ok

soothsayer profile image
soothsayer in reply toCaspiana

I just had to say what a lovely reply you made, it's helped me already, I'm in stage 3 and live on my own so to hear something positive is cool! I feel like I'm just a burden on everyone. I'm sorry you have BO, that's the thing with copd it seems like any breathing problem ends up under that umbrella. Thanks again Simon xx

Caspiana profile image
Caspiana in reply tosoothsayer

Hello Simon. You're not alone. You have us. All of us all over the world. 🌍💜You just need to reach out , anytime. You're not a burden either. You're doing your best and no one can expect anymore from you. Don't be hard on yourself. Remember that climbing the mountain is good enough, we don't have to carry it too.

Take good care and hoping to hear more from you soon.

Cas xx 🌹

soothsayer profile image
soothsayer in reply toCaspiana

I used to do a lot of climbing and hill walking and fishing off the coast etc, I live in social housing in a village surrounded by beautiful countryside and it breaks my heart that I can't do any of these things anymore and as for any kind of relationship that ain't gonna ever happen no-ones looking for a 54 yr old who needs looking after. We live in such a meme society, we don't have the same sort of relationships with neighbours etc like we did 30 years ago. It was Thatcher who said there was no such thing as society and it now appears it's true. I did have one good next door neighbour but sadly she died of cancer at 49. So sad! I hope your feeling well today. Simon xx

Caspiana profile image
Caspiana in reply tosoothsayer

Hello Simon. I know what you mean when you talk about how you used to be able to do things. I used to swim quite bit. I could swim three kilometres without too much bother. I try not to think too much about it. Yesterday I went for a walk and thought to myself, at least I can still do this. I hope you are keeping well.

Cas xx 🌺

Hello and a warm welcome from me. You do not say what disease you have but if it is copd which I have, do not listen to doom mongers. I've no intention of going anywhere. Take good advice from the wonderful members on here. What swerv says is right - keep yourself fit as possible, diet, exercise etc. Can you tell us more? Please do not be afraid - it is just that you do not know what to expect. Do not google. Ask us. We will put you right. I don't know what your doctor is thinking of - most cruel and unhelpful. Love your photograph:-)

FreshFlowers3 profile image
FreshFlowers3 in reply to

I have COPD... Feel out of breath and wheeze. it's been worst since I've been diagnosed... Probably stress. I haven't been able to sleep or even eat very much. My doctor is useless so I'm going to see a natupath doctor today.

Swerv profile image
Swerv in reply toFreshFlowers3

You will find that being out of breath and wheezing is down to anxiety. I know as i went through the same thing when first diagnosed. I read about it and decided to experiment and every time i started to get SOB i would panic but would take a valium and within an hour my breathing was back to normal.

So i knew it was all in my mind. Now if i get SOB i blow up a ballon a few times...it works. Also try this:

buyalex.com/2015/wp-content...

lynnekay profile image
lynnekay in reply toFreshFlowers3

One of the big problems of getting SOB is the panic that goes with it. If you can get a referral for Pulmonary Rehab, there you'll learn how to control that through a specific way of breathing.

Something that may help you in the meantime is when you get SOB, sit down and breathe out through pursed lips for as long as you can and concentrate on getting air out of your lungs. (sounds wrong because you feel you need to get air in, but you need to get rid of stale air that collects in the bottom of the lungs). Then breathe in for 3 seconds through your nose and out for 5 seconds through the pursed lips. Repeat until you feel in control

If you feel you need more help try and get appointment with respiratory nurse at your GP surgery. They have more time and often more knowledge that GP

Hope this helps and believe me we've all been there!

sassy59 profile image
sassy59

Welcome FreshFlowers3 and please don't google. There are done great people on here who will gladly offer helpful advice but what disease do you have?

Stay strong and take good care of yourself. Nice photo. Xx

fcag2001 profile image
fcag2001

Welcome on board . We all have some combination of lung problems I have ABPA which is serious but I work st walking every day climbing stairs daily and trying to eat lots and lots of veggies . Lots of very helpful info on this site. As you mention the fall are u in USA ? Hang in there. Life expectancy can often improve as you gain confidence in how to manage your condition be good if you could share it then folks can offer support as they see fit keep smiling and a laugh a day is essential make sure you find one daily!👍🏼

LadyoRockee profile image
LadyoRockee in reply tofcag2001

It is summer in the US, fall begins in September. Her Dr told her to get immunizied in the fall...

RibvanRey profile image
RibvanRey in reply toLadyoRockee

Hi LoRockee. I think the that Fcag realises that North America is in the northern hemisphere and therefore is in summer. Asking FF3 location was simply that no English person would mention fall unless they had had one. 😊

katieoxo60 profile image
katieoxo60

Hi Freshflowers3 welcome to the site, your picture is lovely the flowers too. No matter what lung condition you have quality of life is what counts. the expectancy data on Google is a bit of a myth, it frightened me when first diagnosed in 2009. Listen to the voices of experience on here. Try to avoid infections or nip them in the bud, keep as fit as you can, eat sensibly and a laugh a day keeps the doctor at bay. Hope you come on site again and tell us how you are getting on, exercises do help too but daily in small amounts. Take care x

PastMeBest profile image
PastMeBest

Hi FreshFlowers3 and a very warm welcome to our friendly and informative community.

Swerv and the others have given you some really good advice. You don't say exactly what you have but there are loads of people on here that have a variety of lung diseases. They will give you good advice based on their own first hand knowledge usually gained from many years experience.

Lung diseases are usually progressive but a lot can be done to manage them and slow progression down. My wifey has had COPD for over 12 years and still leads a great life. I have IPF and I also do as much as I can, be it a bit slower.

There are lot of things you can do to help yourself. If you smoke then stopping is on of the best things you can do to help yourself. One of the worst things to do is to use Dr Google. There is a load of duff information on it as you have already found out.

You are in the right place now though, so ask any questions and someone is sure to be able to help you. The more known about your illness, the more someone is able to help.

Keep Calm and Carry On.

Regards. John

G'day from "Down Under" Fresh Flowers.

I am a carer for my wife (Susan) who has IPF (Lung fibrosis) Diagnosed May 2014.

I am assuming you have fibrosis by the term "5 years" There are numerous "family"members here who have gone well past "That" use by date, which in itself, is a fur-fie. Only the good LORD knows when it is time to move our furniture upstairs.

If you have COPD or another airways obstruction there are many members who can best advise you.

You have already received the correct information

Forget Dr Google. Most of the info out there is outdated and medical science is improving each year.

If you have not already commenced, I suggest you start on a healthy diet, most nutritionists will have all the info you need.

Exercise, is the most important factor in keeping your muscle tone and bloodstream as well as possible. I strongly suggest that you talk to your Dr for medical advice. Most here can tell you about their journey and what has helped them, but lung disease affects each person differently. Ask your Dr about a rehab nurse or clinic in your area and talk to them before undertaking any exercise. They understand the disease and what exercise is suitable.

If you have any concerns about the care/advice given by your GP Get another opinion after all it is your life, there are many here who have had difficulties and changed doctors, myself included. We wasted 3 months before the lung Dr sent us to another specialist.

Sorry to see that you needed to find this site but glad that you did.

Welcome to the "Family"

The wild colonial boy

Will

Titchy52 profile image
Titchy52

FreshFlowers3 welcome to the site please don't be afraid there's so much u can do to help yourself all the above advice is fantastic the people on here will help u with your fears ,and shame on your doctor for that un caring advice iiyour pic is beautiful best wishes Kathy x

SecondLife profile image
SecondLife

My husband was told that he probably would only survive 4 years, here we are 10 years later. With the help of a fabulous consultant, sorting out a suitable diet, making him do the exercise and finding hobbies that he can do. We all go through the stage of reading things we shouldn't, it is ok if you are using them to discuss with your doctor but not if you are going to worry yourself with the information. Good luck

Symes profile image
Symes

Welcome, freshflowers. You don't say whether you're in the UK or not? If you are, it might help looking up on the BLF website to see if there are any Breathe Easy groups local to you. They are always useful and supportive, and generally have weekly Active exercise classes attached to them, that deal specifically with Pulmonary exercises that will help.

As Merv said, don't think about online information regarding life expectancy, but think more about what you can do to help yourself and prolong your life. There are different stages, different severity's of COPD and I know plenty of folk with the disease (and IPF, Bronchiectasis etc) who have far exceeded that 5 years that Google told you.

Best of luck, and remember, we are all here for you.

Katinka46 profile image
Katinka46

All excellent advice from the others. Nothing to add, but you have come to the right place for help, information, and support. Welcome to the group.

All the best

K xxx

Dedalus profile image
Dedalus

Nothing to add to great advice above but would like to say welcome xx

guytane profile image
guytane

I got diagnosed 5 yers ago am a tree surgeon still climin tree internet full crap

Scud profile image
Scud

Hi fresh flowers welcome, this is a better place than google we are very real. You don't say what you have been diagnosed with. I can see you have already had loads of good advice. I have copd and was diagnosed 20 yrs ago it does get progressively worse but you do adjust on the way, I am on oxygen 24/7 now but still enjoying life. If you have copd the first thing I think you should do is join a rehab course this helped me a lot.

Always here to help. Take care and don't be scared

Love Sue x

Jaynair profile image
Jaynair

Welcome to the site Freshflowers :), best advice - don't google, ask real people who know :), you'll find a lot of those on here xx

Mandy6513 profile image
Mandy6513

Dont take any notice of what you read on google there are members on here who have had lung disease most of their lives and are still enjoying life

Toci profile image
Toci

You have been given some great advice already. I was given 3 years maximum to live by a sour nurse 9 years ago and I am still here (though I am not sure that she is!). Try some reading authored by our wonderful members to see what is possible:

healthunlocked.com/blf/post......

healthunlocked.com/blf/post.....

rubyred777 profile image
rubyred777

Welcome to the site, Freshflowers. The family has come out to give you an excellent welcome! They're a great bunch on here.😊 I can't really add much. It would help, if we knew what lung disease you have, and what stage. I agree with all the other advice given to you. Keeping active is really important. The less you do, the less you'll be able to do.😊 Hope to see more of you! 😊 Rubyxx 😊

scorpiolass profile image
scorpiolass

Hi Fresh Flowers, Welcome to the site. I see you have been given lots of good advice so I won't add to it. I will just say that when we are first diagnosed most people feel overwhelmed & afraid. I have had a 'frail chest' (a pigeon chested asthmatic) since childhood. I made sports captain. 12 years ago I was diagnosed with Copd & like you I was scared. Following lung cancer 3 years ago I could barely walk. I am 72, last year I travelled alone to Brussels & Amsterdam. There is a lot of variability with chest disease & fitness ability. If you follow the advice given, you may as my mum who had severe copd, live to be in your 90's. Take Care, Margaret x

Carnival567 profile image
Carnival567

I too read about life expectancy of 5 years but if you read on it says 'before antibiotics'. Take your antibiotics when needed, have your immunisations as advised, eat sensibly and rest when tired. Enjoy life! I have congenital heart disease and even for people who have the surgery the average life expectancy for those with my condition is 38 years. I am 73, and have done all those activities that others do except sport. Keep as busy as you can, do what you enjoy and don't think about survival one way or the other.

Carnival567 profile image
Carnival567

forgot to say also have bronchiectasis

peege profile image
peege

Hi, a warm welcome from me too.

I think that it's USA websites that are terrifying - don't look at them, only look at UK ones provided by our NHS (national health service) and here on the British Lung Foundation, a charity here in the UK. BLF have some excellent information in their archive of old posts and replies plus their own info in the help section. Use the search button top right to research whatever lung disease you have.

A good recent post is by Meganell, on how she's achieved a massive improvement. If you have copd (I don't, many different lung problems here) remember their are several stages. Mild is the 1st, if you work at it you can remain mild for a very long time.

All the very best to you (if you smoke please give it up ASAP). Peege x

in reply topeege

Welcome freshflowers - just to add to peege's good advice, patient.info is a reliable website too, with links to other sources of information patient.info/health/chronic...

pepparuby1 profile image
pepparuby1

Oh wow fresh flowers welcome i was diagnosed with COPD and emphysema five and a half years ago. I admit it has made me cry and feel sad but last week i walked 17km in Crete down a rough and rocky Samarian gorge - twisted my ankle and took ten hours!!! I have always said "oh no i can't do that with my lungs" but i blumin well did. I'm 57 always was a heavy smoker but stopped six years ago. I'm now doing Zumba twice a week and trying to stay fit

Listen to the advice on here great people who know how you feel x

kimmy59 profile image
kimmy59

Hello and welcome to the forum.

I think we've established your in America. Great advice from everyone, the best bit is don't Google. You don't mention what lung disease you have but stop smoking if you do, try and eat healthily, get the flu and Pneumonia jabs and exercise. There is always someone on here to talk to so you'll never be alone, I was terrified when I was first diagnosed but you will get used to it.

Kim xx

jjnanna profile image
jjnanna

Hi I am new to this site and feel the love already .... I had a lung removed nearly 11 years ago and after 3 months went to help my sister in her cleaning business until my hips decided they were going to wear out. I have had COPD for 10 years at least but it is this year that it has become a problem with a few hospital visits. I now have heart failure but seeing as my Dad passed when he was 57 was always expecting 1 of us 3 kids would have a problem .... but I am 62 now so still going strong. I have oxygen at home now for 15/20 hours a day but it doesn't stop me visiting my elderly Mum or going shopping just have to go a bit slower and stay calm ! You will find a way to cope with it so stop worrying as that won't help .... find a hobby and do your exercises and you will feel better ..... x

Sparkywoo profile image
Sparkywoo

Hi, I know how you feel. I was numb with shock and terrified. Every sniffle I had I thought this it it, best book the undertakers. So what changed? I stopped looking at the Internet for information. I sought out a good consultant and took his advice. Reduce stress where you can (no Google 😉), eat well and above all keep your lung tissue moving. Walk, exercise, dance, run whatever, look after your lungs and if you do smoke - please try and stop.

I have always had bad asthma and was diagnosed with Bronchiectasis 10 years ago. I didn't think I would make 50 but here we are nearly 4 years passed that and apart from my lungs probably in better shape health wise than have ever been. Oh apart from the current elbow injury caused by boxing 😂

Joining this sight has stopped me feeling so alone with this and are a lovely supportive and positive bunch so ask away X

You can sink or swim - I'm looking for a gold medal in front crawl 😀

fastball profile image
fastball

I was diagnosed back in 2008, I'm still doing most of the things i used to do. I'm 66 yrs and it just takes longer to do. You do a bit and rest a bit, untill its done. The worst thing is the walking to do the shopping, I've got a car but walk round the shop, i told my daughter when it gets to much I will order on line, but it gets me out in the world and meet people. I also take my choc lab oout for a walk daily but i use a scooter for that. You would be surprised at how many people stop you for a chat, not all old people either.

Well thats it really do what you can when you can and do the rest later.

Chris

Help_61 profile image
Help_61

I thought the same now doing rehab looking at it in a different way eat well join rehab for excersice I'm stage 3 have good and bad days but looking for better future stay positive

butterfly31851 profile image
butterfly31851

welcome fresh flowers,

Nothing to add to all the good advice this great bunch (of flowers!) have already given.

Look forward to hearing more from you.

please don't 'google' you start with a headache and end up pretty much dead !!

Take care,

Jean xx

Watfordgirl profile image
Watfordgirl

Just to say hello and welcome.

Can't add to all the advice and reassurance but I do agree with it and I hope it's helped you. Once you've got over the shock you'll learn lots and lots of ways to manage your condition so that you can still live a good and meaningful life.

Google dresses and come here to ask questions about your lung problems. Sue x

soothsayer profile image
soothsayer

First of all, life expectancy is not 5 years, it depends on how early you have had it diagnosed, it is a fact that it is a progressive disease with no cure. It really depends on how you take care of yourself. Give up smoking immediately if you do and do something everyday that pushes to have to breathe to harder and exercise them really. Have you been told about your FEV1% and all that stuff can be very confusing, but don't panic , I know people who have had it twenty years and still lead a reasonably active life. Mine is well into severe stages now so anytime you need any info just get in touch. It might be worth getting into a pulmonary rehab course which for 1 hour it's an exercise regime and 1 hour they will go through the different technical aspects and treatments and drugs used etc...,keep pushing and don't take no for answer, I kept telling all of them up to the consultant that something wasn't right and they kept telling me ,no your fine your doing really well blah blah blah,, I collapsed twice and it turned out I had a massive pulmonary embolism called bi-lateral or saddle as it covers both lungs and it was squashing my heart but I should have demanded earlier, I had dvt,s in both legs and lost 32% lung function in two years but I'm doing really well they say...so just keep on their case like I should of,,,,,good luck and don't worry about life expectancy.

sarcoid123 profile image
sarcoid123

I have had sarcoidosis of the lungs for 37 years and still going strong and happy at 72.

diesel12 profile image
diesel12

5 years? Rubbish! My Fev1 is 52 and I still go to work fulltime, love to go to gigs (concerts) and party! ok I'm a bit slower at partying but I am almost 60 (ahhhh!) Forget the numbers, get fitter and enjoy your life!

xxx

carpenter60 profile image
carpenter60

I think that everyone has covered most things ,so I will just say welcome . Allen

Peteybob profile image
Peteybob

Ditto to all the above... and welcome to the group!!!

Pete

casper99 profile image
casper99

Welcome to the board Fresh flowers xx

gallmoe profile image
gallmoe

I am going on to my six year with COPD forget about the time they give you I don't think any doctor can actually estimate it. I am 100 per cent better now they I was six years ago, walk if you can do resporitory rehab., try not to be over weight that is a major plus the more weight you have on you puts pressure on your heart and lungs, eat well in small portions and the main one is be positive about yourself don't feel sorry for yourself gets you no where. Stay away from Dr. Google. Take care.

Gallmoe,

Australia.

FreshFlowers3 profile image
FreshFlowers3

Thank you gallmoe.... I'm newly diagnosed and have learned so much from this website. I'm not overweight and I'm really active. Going to join a gym today... Everyone says excersise excercise excercise. Diet and daily vitamins are the next thing I'm going to look at. Why the small meals?

tamariki profile image
tamariki in reply toFreshFlowers3

They say a full stomach can affect your diaphragm, which is an essential part of our breathing when you have COPD.

FreshFlowers3 profile image
FreshFlowers3

Does anyone know why weight lifting, mowing,raking or walk up hills is not a recommended form of excercise when you have COPD?

tamariki profile image
tamariki in reply toFreshFlowers3

Where ever you got that from it's Rhubarb!!! Weights, walking, gardening are all recommended by COPD exe3rcise sites.. You could probably search this site and find out more.

It seems that your are really getting stuck into the disease, asking questions etc, and it is the right way to go.

Nottobad profile image
Nottobad

Exercise is the best thing you can do for COPD . Ask to be referred for pulmonary rehab. I am starting my 3rd course on Monday X

Fordgirl81 profile image
Fordgirl81

Hi I understand your worries as I myself was recently diagnosed but as I am reading on most of these post I'm not having anything other than sob so tomorrow I do believe I will be asking the dr to check my heart as well I'm not sure what's going on with my body I've been told I'm to young to have copd but who knows I'm 35 and always sob shouldn't be this way but it is no other tests have been done on me except the one chest X-ray almost five year ago it's always a waiting game

FreshFlowers3 profile image
FreshFlowers3 in reply toFordgirl81

I'm not quite stage 1. Not sure what is lung disease or what is allergies.

I had a lung X-ray and it came back that lungs were hyperinflated, then had a lung function test. I was sob for last 5 years and no one ever thought to check my lungs only my heart... Heart was always great. Now I've got sob with wheezing and a bit of a cough. My doctor said that my lungs are probably on the larger side and not related to lung disease.

What showed up on your X-ray? Are you a smoker? What are you diagnosed with? I smoked 3 or 4 cigarettes a day for 27 years but quit 12 almost 13 years ago. Shocked to have emphysema. I have friends that smoke a pack a day and they are fine.

KD12 profile image
KD12

Hi FreshFlowers,

I was just like you about a month ago, it is scary what you can find on the internet so try not to look for information through Google as it just adds unnecessary anxiety. Not every copd person is the same so try to go with your own perceptions about how you feel rather than absorb other people's diseases and then make them your own. Also the initial anxiety makes the breathing so much more difficult and makes you think things are worse than they actually are. We've all felt the panic you feel right now but it does get better, the human mind gets used to so many things and as many people already said above you can still be here for many many years. I wish you all the best and dont feel so alone as a lot of people here can and will help in any way they can.

falconcottage1 profile image
falconcottage1

Bless you. It does feel as though the bottom has fell out of the earth when u are told u have copd. I was diagnosed 5 years ago now. It is still mild (i hope) but i can still walk about anf take the dogs out every day. I have been researching anything to give us hope. Ive looked at stem cell treatment and using cannabis oil. I have just come across an article in the mail online called. D nerva dual cooled RF catheter. It manipulates the vagus nerve which is responsible for bronchorestriction and mucus propduction.

You look very young snd that is good. This disease is generating a lot of research now, and i feel sure there will be some kind ot therapy if not cure to halt the progression of the disease. Try to come on line regularly u will find people are very kind, and it helps to speak to people who know what u are going throughj.

Caspiana profile image
Caspiana

Hello Graham. I am so very sorry about your wife. I cannot begin to imagine what you've been through. Life is so fleeting. We are all here for a microsecond and then we cease to be. But we must make the most of the time given us and make life as happy as we can. I am sending you love and light Graham. Thank-you for sharing your thoughts today.

Cas xx 🌷

guytane profile image
guytane

that's the way I felt when they told me 5 years ago I feel fantastic now by getting information how to heal your own lungs read my breathing exercise routine breath easy don't google anything about copd they make you worse but please I was only blowing 400 on ashma calculator las week I hit 700

Caspiana profile image
Caspiana

Hello Graham. I over stretched myself yesterday by cleaning the house and carrying heavy shopping. I paid dearly for it by coughing all night and now I am exhausted. I am fed up of being ill to be honest. Thank-you for thinking of me. You are most kind.

Cas xx

gustavski profile image
gustavski

found you. What disease do you have ? if I may ask

gus

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