34 yr male
crazy active with plch/pulmonary fibrosis/ emphysema
Scared
Plch: 34 yr male crazy active with... - Lung Conditions C...
Plch
Written by
Daniel82
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21 Replies
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we're all scared on first hearing and get frights along the wau.Here you will find some great people to hopefully give clearer understanding to any fears you have
Welcome to the site, Daniel82. I have moderate COPD and am still pretty active - that helps to keep the progression at bay. Feeling scared only makes the symptoms worse, so have a good read through the posts on this site until you ease your mind a bit and realise life does go on after diagnosis - and a good enjoyable productive life if you choose it.
Hi Daniel82 good to meet you. I'm 44 and was diagnosed with Pulmonary Hypertension and Scleroderma just before Christmas last year. At that time I was completely overwhelmed to get such a shock diagnosis completely out of the blue after feeling unwell for just a few weeks and having led a really busy lifestyle prior to this with a full time demanding career as well as being a mum and wife. Understandably I was initially very scared for the future as I was so unwell and have a young son who was 4 at the time, now 5.
The medical support I have had has been absolutely fantastic and the specialist teams have helped me to understand my conditions in a straightforward way, which is preferable to looking on Google and getting freaked out by search results. The love and support of my fantastic husband, son, family and friends had really helped me cope and I'm finding acceptance of my new situation and finding ways to cope in the tough times. I try to be as positive as I can (though some days fail miserably) and now try to make the most of every day.
You'll find lots of great information on this forum are well as many friends here who understand the daily realities of living with horrible lung conditions and are happy to chat, share experiences, offer advice or simply listen if you just want to vent.
Happy to chat anytime and take care. x
Welcome Daniel and hope you enjoy this wonderful caring site. Xx Like the photo. Xxx
Hello Daniel
Welcome to the forum, everyone on here are lovely stay around and have a chat.
Kim xx
Thank you so much for you response. I'm new to the whole website so my first profile is a little scarce.
This all started out in 2014 when bronchitis went to pneumonia which they then CT scanned and saw emphysema
I was and for the most part still am very active and I was rarely sick..I smoked cigs for about ten years and occasional marijuana
As soon as I got the news I quit smoking and that was over two years ago
I install custom glass shower enclosures in Minnesota with all the changing seasons so aside from being exposed to construction (dust, fumes, etc.) Pollutants , I'm in 100 degree weather and-30 degree weather
I maintained pretty good for a couple years until this spring I started getting short of breath again. However I carry 100 +pound pieces of glass up stairs and work very physically daily
But I still felt something was wrong
I went in for another CT scan and the "emphysema" had severely progressed. My docs and I were very confused since I quit smoking and stay active
Fev1 80
Dlco 42
I was referred to the university of Minnesota pulmonary center where I've had a bronchoscopy lavage with un definitive results but the specialists there are leaning towards plch(which some cases get slowed down with chemo)
They want to do a vats biopsy to get a for sure diagnoses. But say I'm almost 100% likely to get a collapsed lung and exasperate my condition
I feel strong and don't want to make my situation worse then it already is by going through with this procedure but on the other hand we can figure out a treatment plan if we have definitive diagnosis
Sorry that was a lot
Just a background on my situation
So enough about me. How are things for you these days?
Hello Daniel.
I'm not doing to bad at the moment, I have severe Emphysema but I'm 58. My medication seems to be working ok, the best thing is Azithromycin which is an antibiotic I take 3 days a week, really reduces infections which is brilliant. I don't mind the heat, its humidity I can't stand or the damp.
Kim x
Welcome Daniel ! Maybe ringing the BLF helpline could help you with some of your issues and point you in the direction of further help you may need.
Thank you so much for you response. I'm new to the whole website so my first profile is a little scarce.
This all started out in 2014 when bronchitis went to pneumonia which they then CT scanned and saw emphysema
I was and for the most part still am very active and I was rarely sick..I smoked cigs for about ten years and occasional marijuana
As soon as I got the news I quit smoking and that was over two years ago
I install custom glass shower enclosures in Minnesota with all the changing seasons so aside from being exposed to construction (dust, fumes, etc.) Pollutants , I'm in 100 degree weather and-30 degree weather
I maintained pretty good for a couple years until this spring I started getting short of breath again. However I carry 100 +pound pieces of glass up stairs and work very physically daily
But I still felt something was wrong
I went in for another CT scan and the "emphysema" had severely progressed. My docs and I were very confused since I quit smoking and stay active
Fev1 80
Dlco 42
I was referred to the university of Minnesota pulmonary center where I've had a bronchoscopy lavage with un definitive results but the specialists there are leaning towards plch(which some cases get slowed down with chemo)
They want to do a vats biopsy to get a for sure diagnoses. But say I'm almost 100% likely to get a collapsed lung and exasperate my condition
I feel strong and don't want to make my situation worse then it already is by going through with this procedure but on the other hand we can figure out a treatment plan if we have definitive diagnosis
Sorry that was a lot
Just a background on my situation
So enough about me. How are things for you these days?
Hi Daniel I was diagnosed with emphysema at 38 main thing to do is if u do smoke stop, if u work anywhere that's likely to make your lungs worse, try and find different employment or if u can claim benefits do that till find suitable employment, lastly you need to keep active I walk four or five times a day, go to the gym swimming, cycling, don't Google stuff like I did I thought I'd got a few years to live, it's not true, just try and stay as healthy and active as possible x
Thank you so much for you response. I'm new to the whole website so my first profile is a little scarce.
This all started out in 2014 when bronchitis went to pneumonia which they then CT scanned and saw emphysema
I was and for the most part still am very active and I was rarely sick..I smoked cigs for about ten years and occasional marijuana
As soon as I got the news I quit smoking and that was over two years ago
I install custom glass shower enclosures in Minnesota with all the changing seasons so aside from being exposed to construction (dust, fumes, etc.) Pollutants , I'm in 100 degree weather and-30 degree weather
I maintained pretty good for a couple years until this spring I started getting short of breath again. However I carry 100 +pound pieces of glass up stairs and work very physically daily
But I still felt something was wrong
I went in for another CT scan and the "emphysema" had severely progressed. My docs and I were very confused since I quit smoking and stay active
Fev1 80
Dlco 42
I was referred to the university of Minnesota pulmonary center where I've had a bronchoscopy lavage with un definitive results but the specialists there are leaning towards plch(which some cases get slowed down with chemo)
They want to do a vats biopsy to get a for sure diagnoses. But say I'm almost 100% likely to get a collapsed lung and exasperate my condition
I feel strong and don't want to make my situation worse then it already is by going through with this procedure but on the other hand we can figure out a treatment plan if we have definitive diagnosis
Sorry that was a lot
Just a background on my situation
So enough about me. How are things for you these days?
Hi, I'm quite a lot older than you but was very worried when I found out I had moderate copd. However I still do what I want to do but just pace myself (sort of). Just did 2 back to back day festivals at bank holiday ok I was knackered afterwards but still sang and danced the days and nights away. Stop smoking if you do, exercise (I train for gigs lol!) and try and get loads of fruit and veg down you. I avoid people with colds etc and carry one of those little bottles of anti bac stuff in my pocket. My nurse asked me what had changed from the day before I was diagnosed to the day I was diagnosed. She was right, nothing had changed other than I knew what had caused my breathing problems and I had medication and know what changes I had to make. Being diagnosed is a bit of a winner really as you have chance to help yourself. We're always here to listen to your worries but review your life and make the changes you need to and you should be able to slow down any progression. I should write down any questions you have and go and have a chat with your doctor.
Take care xxx
Thank you so much for you response. I'm new to the whole website so my first profile is a little scarce.
This all started out in 2014 when bronchitis went to pneumonia which they then CT scanned and saw emphysema
I was and for the most part still am very active and I was rarely sick..I smoked cigs for about ten years and occasional marijuana
As soon as I got the news I quit smoking and that was over two years ago
I install custom glass shower enclosures in Minnesota with all the changing seasons so aside from being exposed to construction (dust, fumes, etc.) Pollutants , I'm in 100 degree weather and-30 degree weather
I maintained pretty good for a couple years until this spring I started getting short of breath again. However I carry 100 +pound pieces of glass up stairs and work very physically daily
But I still felt something was wrong
I went in for another CT scan and the "emphysema" had severely progressed. My docs and I were very confused since I quit smoking and stay active
Fev1 80
Dlco 42
I was referred to the university of Minnesota pulmonary center where I've had a bronchoscopy lavage with un definitive results but the specialists there are leaning towards plch(which some cases get slowed down with chemo)
They want to do a vats biopsy to get a for sure diagnoses. But say I'm almost 100% likely to get a collapsed lung and exasperate my condition
I feel strong and don't want to make my situation worse then it already is by going through with this procedure but on the other hand we can figure out a treatment plan if we have definitive diagnosis
Sorry that was a lot
Just a background on my situation
So enough about me. How are things for you these days?
Greetings 
Sorry to hear that you're scared, but not surprised. Mention "emphysema" and people think it's a death sentence. I don't know about your other lung conditions, but I've had respiratory problems since I was very small and at 69, I'm still here. Admittedly, I'm more breathless than I was, and I do use oxygen much of the time, but I _am_ still looking at the green side of the grass.
Just a few "pointers"... If you do smoke, you simply MUST stop. The one thing which will make the emphysema progress more rapidly is smoking of any kind. Don't consult "Dr Google" because you'll just read horror stories which aren't true for the majority of us. Exercise is the only way forward where minimising the effects of emphysema are concerned, so WALK!!!
Welcome to this forum -- you are certainly among scared friends here!
Best
Catnip
Thank you so much for you response. I'm new to the whole website so my first profile is a little scarce.
This all started out in 2014 when bronchitis went to pneumonia which they then CT scanned and saw emphysema
I was and for the most part still am very active and I was rarely sick..I smoked cigs for about ten years and occasional marijuana
As soon as I got the news I quit smoking and that was over two years ago
I install custom glass shower enclosures in Minnesota with all the changing seasons so aside from being exposed to construction (dust, fumes, etc.) Pollutants , I'm in 100 degree weather and-30 degree weather
I maintained pretty good for a couple years until this spring I started getting short of breath again. However I carry 100 +pound pieces of glass up stairs and work very physically daily
But I still felt something was wrong
I went in for another CT scan and the "emphysema" had severely progressed. My docs and I were very confused since I quit smoking and stay active
Fev1 80
Dlco 42
I was referred to the university of Minnesota pulmonary center where I've had a bronchoscopy lavage with un definitive results but the specialists there are leaning towards plch(which some cases get slowed down with chemo)
They want to do a vats biopsy to get a for sure diagnoses. But say I'm almost 100% likely to get a collapsed lung and exasperate my condition
I feel strong and don't want to make my situation worse then it already is by going through with this procedure but on the other hand we can figure out a treatment plan if we have definitive diagnosis
Sorry that was a lot
Just a background on my situation
So enough about me. How are things for you these days?
Ha!! I'm struggling with the site too... It sounds as though your doctor has a handle on your condition, so all you can do is see what happens.
Meanwhile... I found it hard to accept that everything has to be done in slow motion, and that there were bad days for no good reason. These things soon led to major depression, so perhaps _that_ is something to be aware of. Lung disease brings a lot of baggage with it, sadly.
Keep doing what you are doing - being healthy and smoke-free:you did the best thing first.
Cheers
Catnip
Apparently I'm not sure on how to reply to people on this site
Hope to get better at this in the future so Thank you so much for you response. I'm new to the whole website so my first profile is a little scarce.
This all started out in 2014 when bronchitis went to pneumonia which they then CT scanned and saw emphysema
I was and for the most part still am very active and I was rarely sick..I smoked cigs for about ten years and occasional marijuana
As soon as I got the news I quit smoking and that was over two years ago
I install custom glass shower enclosures in Minnesota with all the changing seasons so aside from being exposed to construction (dust, fumes, etc.) Pollutants , I'm in 100 degree weather and-30 degree weather
I maintained pretty good for a couple years until this spring I started getting short of breath again. However I carry 100 +pound pieces of glass up stairs and work very physically daily
But I still felt something was wrong
I went in for another CT scan and the "emphysema" had severely progressed. My docs and I were very confused since I quit smoking and stay active
Fev1 80
Dlco 42
I was referred to the university of Minnesota pulmonary center where I've had a bronchoscopy lavage with un definitive results but the specialists there are leaning towards plch(which some cases get slowed down with chemo)
They want to do a vats biopsy to get a for sure diagnoses. But say I'm almost 100% likely to get a collapsed lung and exasperate my condition
I feel strong and don't want to make my situation worse then it already is by going through with this procedure but on the other hand we can figure out a treatment plan if we have definitive diagnosis
Sorry that was a lot
Just a background on my situation
So enough about me. How are things for you these days?
Hi Daniel- so glad you found this site. These folks are so informative, positive and loving. I also had a bought with bronchitis and was told I COPD but had no idea what it meant at the time not even when they said I had chronic bronchitis. I just found out this past May that I have emphazema. I smolder than you (55) but the Google stories even from medical professionals scared the begeezes out of me. So glad I found this site. Great bunch of folks.
Hi Daniel
I have COPD or emphysema and have had for around ten years now and come to terms with the facts that it has changed my life but get on with it and do the best I can to slow things down. Welcome to the forum, I too am pretty new to the forum about two weeks ago I joined and feel I am in good company lots of advice and friendly banter I find it very reassuring. I am sure things will soon settle down for you it's always the Unknown that's abit scary once you have all your questions answered you can get on with staying as fit and healthy as you can, you gave up smoking and sound pretty active and still working so you are going in the right direction Good Luck and keep us informed.
Take Care
😊
Hi Daniel I haven't been on here for a long time but saw those 4 little letters PLCH I was diagnosed 3yrs ago and haven't needed treatment yet. But I don't have other lung issues. Be careful what you read some of it scared the crap out of me at first. Welcome to the group.
