I am new to this community and am looking for some hope.
I am only 30 years old and have recently been diagnosed with emphysema. To say that I am scared is an understatement. I have a 6 year old daughter who is my world and I am terrified that I won't be here to see her grow up and I feel so guilty and upset that she might not have her mum around throughout her life. I started smoking cigarettes from the age of 12 and used cannabis heavily from age 15 until quitting 2 months ago. I am so angry at myself...I always intended to stop smoking before I hit 30....figuring that I would get away with it....how naive!
If there is anyone out there who was diagnosed at a young age and is still going strong, I would appreciate some words of wisdom as to how best to cope with this disease. I don't know the complete extent of my emphysema yet, as I am waiting on results of CT, PFT and alpha gene blood test - all I know is that the X-ray showed "significant emphysematous change and small nodules in both lungs" and I am having a job to catch my breath all the time - I think they call this oxygen hunger?
I am so scared and feel helpless....I don't expect any sympathy, after all, I brought it on myself....I am just looking for some hope and positivity...if there is any?
Thank you to any one who replies...it would be great to talk to people in the same boat as me.
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CarrieY
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Hi Stone, thank you for your reply, it is much appreciated. It is also comforting to know that there are people like yourself, who still manage to live an independent life with this disease; it does indeed give me some hope.
I will most definitely ask my Consultant about the rehab course, in the meantime, it's a waiting game....my appointment has been put back again! I have never been an aerosol user anyway, but I will be even more anti-aerosol now and my overflowing perfume shelf has remained untouched since I found out about my lung problem...maybe time to gift them to my sister.
Hi Carrie.i have had emphysema for years now.Try not to worry too much.You mention your six year old daughter but dp you have plenty of adult support too i.e. family & friends ? x
Hi Pedantic, thank you for your reply. I know you are right; worrying is definitely not doing me any good, and I've always been the one to tell others not to worry but can't seem to follow my own advice on this one *sigh*
In all honesty, I don't have much in the way of support, which is why I was glad to see the support that people offer each other on here and hence I joined. It's nice to know that there are people who are willing to listen and also understand x
If you are only 30 you should in theory not have lost a large amount of lung function. You could have caught it early. The Xray is incidental, the PFT will give you a clearer picture of your situation.
Firstly calm down, it is not the end of the world. Your in-abilty to catch your breath is largely related to associated anxiety without doubt. You may need some Xanax to get you through a tough few weeks.
Google Hyperventilation and you will see what I mean, you are probably clearing Co2 by rapid breathing. Stop trying to take deep breaths and they will come when you need them. I promise.
There are few breathing apps on the Appstore to slow down your breathing. Try them out, they work for me.
Hi CK, thank you so much for your reply. I think you are right about the anxiety and I was prescribed a short course of Diazepam, which helped to a degree. However, I have never been one for pharmaceuticals and prefer natural remedies so have been trying to manage it with meditation, tai chi and yoga....which is fine, but it's not always possible to stop in the middle of the day to 'downward dog' or "ohm" for an hour lol. And it's funny you should mention the hyperventilation syndrome as I picked up a book about this and breathing pattern disorders at my library last week (yet to read) so should be interesting to see if this helps me.
Thank you again for your reassuring words, I will update here when I have the numbers from my tests etc x
Firstly stop giving yourself such a hard time, hindsight is a wonderful thing. Great advice from everyone as always. Calm down and try not panic and wait for your test results. And don't Google, you'll just scare yourself and half of what you read is nonsense.
Hi Kim, thank you for your reply and advice. I tried not googling but it's difficult when you're looking for answers and your Dr's aren't very forthcoming or available. However, I have decided to stick to this site for the time being I have decided, at least until I have the full picture of my condition.
Hi I am 43 and told I have mild copd 2 months ago I understand the fear and how frightened you must feel because I still feel the same x Im not sure if I have found my own way off dealing or I have just had a good day some days are so much better then others but once I cant catch breath im back to where I started. I hope this site helps you as it has me. The support is here for you when ever you need it x
Hi Collama, thank you for your reply. I know what you mean about some days being better than others; I seem to be a worse in the mornings and late afternoon and then the focus on how bad my breathing is exaggerates it (as others have mentioned, the panic and anxiety makes things a whole lot worse).
Thank you for offering your support, it really is nice to find people to share this undesirable experience with x
Hi Carrie and welcome to the board. your bound to be frightened, almost everyone is when first diagnosed.
Try not to dwell on the feeling guilty, plenty of people get this who have never touched a cig in their life.
Your breathlessness is probably due to your increased anxiety caused by your diagnosis. I got this too and had to get some help to calm it down off the doctor.
Try not to worry too much, it will only make you feel worse than you actually are. xx
Hi Casper, thank you for your message and words of wisdom. I am trying to deal with the anxiety and some times it is working...and other times it is not; the mind can be cruel to the body. I'll keep trying not to worry though and am glad that there are people on here to remind not to x
Welcome to the site. I joined in Nov. And can't believe how much I have learned. You will make many friends on here , that really care about you. The experience and knowledge is amazing.
I hope you will join in and keep us updated how your doing.
Hi Ruby, thank you for your message. I am glad that I joined this site, I have been made to feel very welcome and can see the time and support that everyone offers to each other, it's lovely.
I absolutely will keep my profile updated with my situation and experiences in this new, undesired realm I find myself in. x
Hi Carrie, my name is Nadine. I am a new friend you can also lean on. I am from America, Muskego WI, just outside of Milwaukee. I was before I lost my job, a Respiratory Therapist, I have some answers, however; I will always encourage you to talk with your MD about things. I can honestly tell you what I think but it is just my opinion. I do think that you are still young and with that you can get started on the right path. Happy to hear that you have quit smoking, great job! Now just so you know that almost every smoker wants to know why after 6 months to 18 months you feel worse than you did when you were smoking? The main reason for this is that now everything in your nares down into your lungs has not been working properly, now you're probably going to be coughing more, more secretions, and just with all of this you still are missing the nicotine. Most people don't know how addictive nicotine truly is, On the drug scale it's right up there with heroin. So you been smoking for a long time it's going to have some issues with your body. Now let's talk about cannabis has more tar in 1 joint than almost 1/2 pack of cigarettes. Also the THC has a greater effect from the inside of the mouth to the lungs. But on the up side you are young! And that's really good news for you! So I would suggest to you to ask questions, you should be able to feel comfortable with your MD to ask. Also as you know knowledge is powerful, this is a great place to get that. Make sure you have support, try to stay calm, getting upset and worried does not help you out with your SOB. I don't have Emphysema, I know that when I get upset I become more SOB. I was diagnosed with a daughter that was 5, I was a bit older, I was 44. She has just graduated from 8th grade, and is now 14 going on 15 in September. Give it some time, and let your body heal a bit. You will never be 100% but you will feel better with some time, and medication, and following what therapy the MD wantsfor you. I really hope that this helps you, take it easy and take care, Nadine ☺
Hi Nadine, thank you so much for your message. It is very comforting to know there are people like you on here that have the care and time to pass on advice and general concern for each others welfare...and without judgement too.
I really appreciate your words of wisdom and positivity and am going to focus on getting better and healing instead of thinking about the negative side of things...many people have commented saying how bad the worry and anxiety is for this disease so I am trying to take that on board as much as possible and avoid getting too upset or anxious.
And yes, nicotine is a horrible drug, although, I do believe that for the most part for me was habit as I have found it easier to stop smoking than I expected, with some changes in other habits alongside stopping the smoking (which only leaves me wishing I would have done it sooner...hindsight eh). The hardest thing to give up was the cannabis, which I quit before the fags, because it was very much part of my identity and of course, provided me instant relaxation...yes, I do miss it, but will never go back to smoking now.
Thank you again for your kind words, really appreciated x
I know it's easy to say, but hard to do....... but you must stop worrying so much. That's what's causing your imaginary breathing problem. It's because you're thinking about it all the time. I'm 73 and have had emphysema for years and still going strong. I also have 3 Daughters (who are all grown now of course) and have lived on my own(without a partner) for most of my life. Everything will fall into place as time progresses and you understand it better. The main thing is that you've stopped smoking which is great, but that also is causing you anxiety at the moment as it's a hard thing to do ....but oh, so worth it!
Try to stay calm, keep active and enjoy your Daughter, because one day you'll be playing with your Grandchildren and wondering why you worried so much back then?
Nikkers, you are always just so welcoming and know what to say? Impressive I must say! But she's right, when you worry it causes anxiety in turn SOB, good advice. So like I said this is a good place for friends that are or have been through a lot of things that you might endure! Good luck to you, Nadine
Hi Nikkers. Thank you so much for your lovely message; the thought of playing with my future grandchildren brought a big smile to my face, and I am starting to think that the only way that will happen is if I focus on believing that it WILL happen! I know that worrying will only make things worse and I am trying to overcome that, but as you say, once I have a better understanding of my situation I am hoping that will become easier. Thank you for your words of wisdom and positivity, it is much appreciated and very helpful x
Your Daughter looks lovely Carrie. Enjoy her, they grow up so fast.
Just remember that nearly everyone on this site has been through what you're feeling right now, and we're all still here enjoying our lives in its various forms. You have not been given a death sentence, just a warning to change your habits- which you have, so that's the good thing. You are still young and fortunate to have found out so early, many of us were smoking for more years than you've been alive before being diagnosed, so your chances are very good.
Go with it, try not worry....you're going to be just fine! XX
Hello Carey,I am 59 years old,started smoking cigs at 9 years old and heavily smoked hash from the age of 14 until 3 years ago when I stopped all smoking everything.I have very severe emphysema ,my Fev1 is 20%.The most important thing you have achieved is stopping smoking,well done It,s not easy.If you keep getting as much exercise as you can and eat wholesome food and concentrate on what can do and have ( be positive ) you will be ok.I still do most things just a bit slower( a lot slower lol ). But I,m old anyway,you have youth on your side.Your daughter will help keep you going just let her know that sometimes you get a bit breathless but with breathing exercises you will be fine.It is very scary at first but you will see that with proper management you can live an almost " normal" ( whatever that is ) life.Best of luck and keep in touch ,let us know how you,re getting on.David. 💐
Hi David, thank you very much for your kind message. I am sorry to hear that you have severe emphysema; if you don't mind me asking, did you have many symptoms for long before you were diagnosed? You're right, it wasn't easy for me to stop smoking cannabis so I am proud of that, even though I do miss it.
Thank you for your advice; I have always had a good, wholesome diet with no processed foods, just the occasional cake or packet of crisps so that won't change and I also exercise regularly...love to go on long walks and do yoga. I think the majority of my breathlessness at this point is coming from the anxiety and thought of not being here for my daughter...which is something I am trying to steer my mind away from...like you said, I need to focus on the positive things in life and direct my thoughts away from the fear. It's helpful to have people like yourself on here to remind me of these things and give me some hope so thank you very much, I will keep you updated when I have all my test results back. All the best to you x
Hi Carrie,sorry for spelling your name wrong,my eyes are suffering the side effects of to many steroids.I was diagnosed ten years ago with Copd.i just thought I got short of breath because I smoked too much and my Copd nurse did,nt impress upon me enough the importance of exercise.I,d sit in my kitchen all night on the computer( various chat rooms ) smoking like a kipper lol.Then I,d sleep during the day.3am one Saturday morning I could not catch my breath,went into panic mode,stuck my head out the window even though there was snow on the ground and freezing.I tried to go to bed but had to wake my wife
,she phoned triple 9 ,turned out I had pneumonia.I was kept in hospital for a week and went down hill quickly.Now I would say I,m on an even keel,I have been lucky with my doctors/consultants.Having smoked dope I found a lot of this illness is mental. Why would you not panic when you can,t breathe?So we learn to control the panic attacks because they just make it worse.I get the impression you are quite sensible,you eat well and exercise so just try to avoid infections and you should be fine.I would explain to your wee girl in case she gets scared when you get breathless.There are lots of breathing exercise on YouTube for you to try,singing is also good for you although not so good for anybody within earshot of me lol.Another side effect of steroids is they make one ramble on and on,sorry lol.You take care now,David. 🌺
hi carrie , im 32 years old and waiting on spirometry to do and chest xrays to come back my doc thinks i have copd and i do to as i have had breathing problems since i was 19 started smoking at 14 smoked weed everyday to about 19 , gave up also gave up smoking for about 5 years in my 20s but overall still smoked 15 years or so often had bronchitis , found out through a fluke test i was a carrier mz of the alpha 1 antripsin gene with a level of .6 , im still waiting to do the remaining tests but my doctor is pretty sure ive got copd im also a parent , solo dad of a 6 year old and all i can do is think exactly like you i only joined this site about a week ago and put up a status about my situation , and so many ppl have written with advice and helped me i feel a bit better now knowing im talking to ppl going through it but at thye moment pretty much still in same boat as you, but you come to a good place.
Hi Wade, thank you for your message, seems like we are very much in the same boat...and it's no cruise liner!
I've been tested for the alpha 1 gene but have yet to find out my results...the only thing I really have to go on is my symptoms and the chest X-ray, but that showed significant emphysematous changes which can't be reversed. My consultant wasn't very helpful or reassuring and I don't have another appointment with her for weeks, which is why I am so glad that I have joined this group; I already feel a little more hopeful for the future. Thank you for sharing your situation with me, we will have to keep each other updated so we can be moral support for each other x
were you experiencing shortness of breath or any other symptoms over the years prior to getting diagnosed, or was it mainly once you quit smoking that it all appeared
There are many with "significant emphysematous changes" on X-ray with a fully normal PFT. The same can be said for HRCT, abnormal CT with normal PFT and vice versa. Significant is subjective anyway.
Christy Turlington had the same diagnosis. Just sayin. Keep the chin up.
Seeing as you mentioned symptoms again I had a reread of your first post. You mention "struggling to catch your breath" this tells me you can't get a deep breath. This is anxiety and is not "Air Hunger" as you say. Air Hunger is a constant level of shortness of breath.
Around the time I started on this journey I went around for a month or more thinking I couldn't catch my breath because I was trying to take deep breaths all the time.
Difficult as it was I trained myself to stop this pattern and you guessed it I can now get a deep breath 80% of the time. You have to work on this now, the longer it goes on the more difficult it is to modify, when you go to yawn, sigh or take a deep breath, swallow instead. It works.
I'm with you I'm 38 and I'm not diagnosed. But something is getting me and it's time to go figure it out. I have 4 kids, awesome as bell. Feel terrible if I'm not gonna be here 4 them. But we r here now so let's do our thang!
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