But I chickened out. I have posted on here many times and have mentioned wanting to get the CT. I know I have an obstruction and hyperinflation based on the full PFT's. At the ripe old age of 43. Lucky me. I rescheduled for 12/1. I wanted to see if there was signs of damage to my lungs, but then I think it may already add to my anxiety/depression over all of what has happened to me. Then again if no damage shows up, maybe it will lessen how I feel. In the end though, I know I have COPD, yes could be something else, but unlikely. Already doing what I can. I quit smoking in Jan, I exercise as much as I can everyday, make myself breathless as much as possible. In fact I get more anxious from SOB at rest than I do when I am active.
Not sure if my reluctance makes sense to anyone. Plus it costs 150$ co-pay. I have the $$, but still need to get an ECHO/stress ECHO and that is of course not free either. Maybe if normal ECHO, then the CT. Or I can see what my new Pulm thinks. Anyway, people on here have been supportive and say get the CT, so I feel like I should have based on all my hand wringing and posting. But scared to do so. Well hell, all of this is. Not too mention, I am considered mild, and I wonder how I will carry on with this as I have to deal with it until I pass, whenever that is. I think that is what troubles me the most. I guess I should be thankful in some ways, that I caught it early, though the warnings were there a few years ago I think. Hard to say. All the reading I do about COPD, people older than I, not much about folks in their 40's. Unless they smoked heavily, which I never did, or AAT, which I don't have. A few on here have responded and were diagnosed in late 30's, 40's. One person has Emphysema on CT, lower FEV than me, and no SOB! Ahhhhh, the strangeness of it all.
Well Thanksgiving is tomorrow, and this time last year I was married and what I thought was good health, though the storm was brewing and I just did not know it then. Now a year later how much has changed for me. Trying to see the silver lining but hard to do. Well I am off to hike and get more SOB.
Best,
Patrick
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patrickd72
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Patrick, I do not know about COPD as have Bronch, but ,please have the scan, early info is so important - you will deal with it - we all have the strength inside us. Do you have a close friend or relative to talk about your worries? Kaye
Well I do, but I don't if that makes sense. I have spoken to a couple people about it, but I think hard for folks to understand. Even my Pulm was skeptical about how I felt in relation to the PFT's, his quote "Not seeing much Pulmonary wise", despite the mild obstruction and hyperinflation. My Alpha test normal, but I still have all this SOB. Hyperinflation can happen in acute asthma, but mine is all the time and worse with exercise. Just crushing. Hard to accept and even harder to understand when the docs don't seem to acknowledge. I was told no limitation pulmonary wise to activity. I do my best and push it, but hard sometimes to keep up a good outlook. Yes, I have strength, but still difficult. In the end, only so much anyone can do. Up to me to make the best of it.
would be best to have the scan and see what it going on could help put your mind at rest , plus there are things they can do to help once they see what lungs are like ,
We have chatted before. Yes, I think about that. Then I think if do see damage or read about it, I m already in a tailspin. I know you have "E", can't even say the word and that you had a rough go of it at first. May I ask the type of E you have? Upper lobe, lower? All over? I read your posts and you are brave. Not sure how you do it. Already I take Spiriva, Dulera. Exercise as much as i can. Just me age, much like you and I am not even as far along as you. Tough to come to grips with it. Not many on here our age.
all over but top is worse im having test round Christmas time to see how much air is trapped if its a lot they going to cut top part of the other lung off so it gives the better part more room and should help with the breathing , I don't consider my self to be brave with it I have had worrying thoughts about it but dont let it take over we have to get on with it no choice as lot of members on here have had it near on 30 years we stand more chance of something happening to us through an accident than from the emphysema for a very long time , I now got very young grandchildren and im going to be here to see them grow up ,
Well I think you are. So LVRS is what they may propose? I had a VQ scan, which looks for pulmonary emboli, also used before LVRS. Mine was normal, which is good, not that I would want to be at a stage where I would need it. I know, many people on here with it for awhile. Seems like they were further along in age when diagnosed. Maybe I am wrong. I try and not project into the future, but it's tough man. Il admit. I think having family can help, wife kids, keeps you occupied. Gives you a reason to carry on, like you said, grandkids. Me, I am single, was married when I got sick, before I realized the magnitude of it all. Now divorced. Does not change anything but having someone to lean on during tough times helps. Ironically when this began and my wife and I were struggling, she said we are having trouble now, what if one of us gets sick? The irony of it all.
yes its the lvrs they talking about doing already had other side done , yes family helps a lot but your still plenty young enough to meet someone else my wife is my second wife , my mum died at 57 she was fit had absolutely nothing wrong with her slipped on ice and the bone came through the skin she had op was home doing ok dad came home from work said I will cook tea in a bit just going to do something in shed came back 20 mins later and she had gone it was a blood clot , he on the other hand has had bad lungs since he was born had really bad asthma use to angle grind asbestos and work in dust for days on end with no mask now has copd as well and he is now 81 he remarried after mum died he was in his mid 60s when he met some one else ,
he does brilliant if the roof need fixing he is up the ladder on the roof doing it , he will walk nearly a mile to get the sunday paper but he does gets lots of chest infections ,
I know mental attitude and not trying to focus on what is wrong is a big part of dealing with all this. I struggle with that the most. That is my biggest burden. Fear of the future and how I feel right now. Based on my "stage", I should have relatively little in the way of symptoms but that is not the case. So I think, my FEV is great, but all this trapped air and not much to do for that, other than Spiriva and exercise, maybe deep breathing. Not even close to any type of surgery, not that I would be interested anyway and glad I caught when mild. Even though I would prefer to not even be in this position, but I am. How do you deal with having this so young? I doubt you have peers facing this, I sure don't. Everything I read involves people much older.
no I don't have peers with this but get plenty of support of here with people going through the same thing some of them were our age when they first got it . if it would help why wouldn't you be interested in surgery , if for example you busted your leg up bad would you just hop about on the other leg the rest of your life , don't get too hung up on the stage thing every one is different ,
I know. I try and go by how I feel. Not necessarily numbers. I guess that is what gets me. That I look at my PFT's and it says mild ventilatory impairment, yet my SOB is bad. I do my best to not focus on it, working on that. Yes, if surgery would help I would, I did not mean to imply otherwise. I think in your case for sure. Even in my case. But I am not there yet, and If I reach that point, I hope it is a long time.
People on here are helpful, and I appreciate the responses to my posts. Means a lot. Regardless of whether or not they are peers. Like was mentioned by coughalot. Many diagnosed as severe, but had going on for awhile prior, just did not realize. Myself, I had warnings I think in 2011, but was misdiagnosed in hindsight, thou gh at the time, I bet everything would have been normal. Who knows.
Patrick, I fully understand your worries but please go for the scan.
Why spend time worrying about something when you could have some tests to determine once & for all what condition you have?
Yes it's scary but we've all been there.
You can be given the proper meds to control your condition. Once you know what's what you can take measures in your life to enable you to live as healthily & happily as you want.
Please reconsider having the scan then you will be able to get on with your life without this constant stress you must be under by not knowing about what condition you may or may not have.
Yes I know. I should get the scan. I am already on meds, I was using daily, but experimenting now as I feel better on them like every other day. Spiriva and Dulera. Yes, I am stressed more by how I feel. I know I have an obstruction, which is "mild", but all the air in my lungs is what does me in. The CT will show the lung tissue damage, or lack thereof. Anyway, I am supposed to get on 12/1 now. So we will see.
I appreciate what you have to say. Less stress would be good. I don't know if accomplished through the CT or not. Guess I will find out.
Hi Patrick I agree with the others to have the CT scan as it will show if anything other is wrong apart from copd. Or it might not even be copd? It is essential to have the full facts then you can start any treatment earlier.
At 43 I wouldn't say most people are 'much' older than you, maybe most are 10 years or so older when they were diagnosed but there are many who weren't diagnosed until their 50's and were already at the severe stage. They were probably mild in their 40's too. Unless you are very unlucky or have another lung disease or serious health problem you probably won't progress very fast, so if you look after yourself now it might not progess at all or every much for decades. You have a very good chance of living to a ripe old age and something else to get you first!
A positive attitude is essential as worry and aanxiety aren't good for you and you will just learn to adapt and plan your life slightly differently. We all do, which doesn't mean you can't have a very good quality of life for a long time. Ok? x
I know. You are correct when you say that many are diagnosed much further along. I think many are moderate/severe when they finally find out and things began years prior. Well I am healthy, I am getting and ECHO to check my heart, both resting and stress. I already feel "unlucky" but what can you do. I agree though that I can still go along and have a reasonable quality of life. Yes the anxiety of it all does not help and I am working on that part. I think thinking about my mortality, quality of life, worry about my future is the hard part. I was married when this began, now divorced. I did not realize what was going on at first, kept expecting to get better. I figured I would, even after I divorced and I thought ill just go back to what I was doing before. I was quite active and now I have to find new hobbies. Yes I can still do some of what I was doing, but will be different and I struggle with that. I still aspire to be married again, and have a family. But the clock is ticking and now I have this. Trying to not let illness define me, but it is tough.
Hi Patrick reading between the lines you are saying you have faced mortality for the first time and am finding it very tough. I must admit it shook me when I first faced up to it. We all get to this stage in life (if we are lucky enough) and It is tough but there is no choice but to get on with it. Getting older is horrible and I hate it as it's so boring but it is better than the alternative x
I always think ok I have mild copd. It's a bu....r and I hate it and the restrictions it places on my life. But then there are so many people worse off and I have lost friends younger than me to cancer and heart problems. At least copd as bad as it is is much better than what could have been. That is the way to think of it.
There are many on here very severe with a lung function of under 30% - that could have been me and it's not. I am eternally grateful for that coz you and me both have a fighting chance for a good and long future. x
This is true. I think about that, it helps, but then I think of my age and the fact that I may reach that point. But I hope there are advances in medicine, instead of just meds. I was pretty active before, and so it has hit me hard. I think many people feel better after diagnosis, they get on meds and quit smoking. Myself, I feel worse. Yes glad I stopped and that at least I know what I am facing now, for the most part. If severe, in the hospital, on a vent, nowhere to go but up, or down I guess. A little different for us mild folks if that makes sense. As you mention it is a burden.
No Patrick that is the wrong mindset. You are not ill - you have a chronic condition which needs managing, there is a big difference. With your lung function you would be very unlucky to end up in hospital with it and the most that would happen is that you are more likely to end up with infections (ie exacerbations) that others, but ab's and maybe a low dose of steroids will sort that out. My lung function is 78% and the only problems I find are chest infections lasting longer than before with sometimes flu like symptoms and a bit more breathless especially when walking up hills and steps.
I think of myself as someone healthy who can become ill on occasion, but taking my meds etc. can lead a mostly normal life. As long as you take your lungs seriously and act as soon as you think you might have an exacerbation, then everything will be fine. I was diagnosed at 56 and my lung function has actually gone up since then. Don't forget losing a bit of lung function is natural with age anyway. Be positive and look on it as a pain in the whatsit then get on with your life. x
This is true, and I paused before saying I was "ill". IN theory, I should have little symptoms and that's where my Pulm was wrong in discounting the air trapping. I take my meds, exercise and my outlook needs work for sure. I have Azithromycin and Levofloxacin. So I am covered there. Just need steroids in case I get sick. I do all I can now to protect my lungs.
Ok I have just turned 47 so not much older than you. I was diagnosed about 3 1/2 years ago but prior to that had a number of years with undiagnosed breathing issues. Saw many doctors who couldn't figure out what was wrong. So for me getting the diagnosis of COPD was actually a relief! Now I knew what I was dealing with. Am on meds that make a difference. Plus so many of my symptoms now make sense so I don't feel like I am going crazy!
What I am trying to say is that a diagnosis is not necessarily a bad thing so please get the tests done so you know what you are dealing with.
I had acute SOB back in 2011, went on for 6 weeks, then was gone. Happened again in 2012, 2014, though much less. Now it is back and not going away. Wish i would have figured out then. Yes, you were diagnosed at my age.
Did you smoke? How were you diagnosed? and with what? Emphysema, chronic bronchitis? Both? May I ask what your FEV1 was and how you feel now compared to 3 years ago? I feel worse when all this began in Jan, I gave up the smokes then. I had mild allergic asthma and always assumed it was what I was dealing with up until recently. What a fool I was to smoke.
No I didn't smoke. You don't have to be a smoker to get COPD. Was diagnosed with spiro and attention to my medical history. GP believes caused by 2 very bad cases of pleurisy plus pollution. Can't remember my FEV1 back then but it has reduced. However I feel much better.
Hi Patrick. We have chatted before. Like the others I think you would feel better if you have the scan. Difficult to weigh it up: the terrible choice. Knowing or not knowing. Me, I'd always rather know. Is it. CTPA scan, that's with a contrast trace to see what the blood vessels are doing, or is it an HRCT scan to look at air trapping? Or a scan looking at the whole lung? I am surprised with the numbers you gave at the beginning for hyperinflation that your doctor is so casual. That is one hell of inflation to cope with. Do you have access to pulmonary rehabilitation? It's a course that should help you to cope the air trapping.
Well thats the whole question. I know I have air trapping based on lung volumes. So the CT will show this. I guess I wanted to see if there was lung tissue damage, but in the end, I still have air trapping and obstruction regardless. My only option is pharmacological reduction, which is possible on Spiriva, how much I am not sure. More severe people can have LVRS, but need to have most damage in upper lungs and low FEV1, my last FEV1 was above 100% and my VQ scan normal. In people with more advanced COPD, it will be abnormal and is used prior to LVRS to reduce lung size. I am glad I am not at that point, and hope by the time I am, if ever, there are other options.
Hi Patrick most of us copders have smoked and yes we were all stupid, but there is no point beating yourself up over it as we can't change it now. I know when I was young I never gave a thought to my health as I was lucky enough to be very healthy. There does come a time though when the chickens come home to roost, and you have to start taking better care of yourself ie stop smoking, eat healthier. It always comes as a shock coz we all think we will be healthy and young forever and it won't happen to me...
As soon as this began, I quit. I knew something was up, did not need a Doc to tell me something was wrong. I had mild allergic Asthma and I smoked. Foolish me, so I was already predisposed to lung issues. On my end, I do what I can. Take my meds, exercise, eat well for the most part. Still working on the mental part. I rey and not beat myself up over the smoking, but it is tough.
Patrick, I have been reading through everything here - we were all young once. In my late 20's I had a cancer scare -was not but still 2 major operations - no more children. The best present I had was a half a bottle of whisky!!!! The lovely GP said why not \a bottle. There was not the tests, scans and medication then but I resolved I would get information about anything as early as possible. If you do not, you imagine the worst - maybe will not happen- but you go through it twice. People here might be older now but they have gone through many things as well as lungs but I am sure altho scary with that lovely sight, hindsight, I think most wish they had had earlier info. I have had friends that had wished they had not been ostriches and gone for info re lumps. Also there are quite a few young people here. Get the scan. You have all your life before you. Do you think you need anti-depressants your marriage break up is a major thing to cope with. Kaye
This is true. And there is a part of me which understands that. I try an put it into perspective. Not always easy. Yes, getting divorced was not pleasant. My wife never believed I was SOB. By then though the caring was out of our marriage. Sad, but true. Yes good to get info early. I already have a lot of info, the CT would help add to it, but the be all, end all was the PFT's. I have an Echocardiogram upcoming, well two, an they cost $$$. So I may do those first, to r/o a cardiac cause and then get the CT, if the Pulm thinks necessary.
Your silver lining may well be the CT scan so you will get a correct diagnosis and stop the anxiety about your lungs. Once you know you can begin the rest of your life
Patrick, may I suggest singing as a way of helping with your sob and hyperinflation. Singing exercises can bring you back in control of your breathing and empty your lungs more effectively before each new intake of breath. You don't need to aim to be an opera star, but find a group near you that sings for pleasure rather than performance. I run a singing group for people with lung problems called Breathe Better Sing Together - you may find that there is something like that near you.
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Anxiety between CT scans
Frequent chest infections
COPD CT scan with contrast Vs fev1/fev
