Need positive reinforcement!

Looking for strength! Not finding it in myself. I have been dealing with this SOB for almost a year. I have a pretty massive amount of air in my lungs, yes RV over 300%! But normal FEV1, wonder how long that will last. I asked for a CT scan, and I hope to get tomorrow or Thursday. Just need to see if anything shows up. Not that it matters, but I will have more piece of mind. I just take a few steps and I get SOB, especially stairs or even a small incline and this is just in the past couple weeks, but the worsening began a week or so prior.

The hardest part is I was very active and hardly smoked, but here I am. I can't get over how I put myself in this position and I am only 43! While I may be mild, I have to deal with this now much longer and not sure if I can. I see many of you who have it much worse than I, an I wonder at what point I reach that stage. It is hard not to think about! In theory, I should not be so symptomatic, but I am and I think why, these should be the "good times" but they are anything but. I draw strength from stories I read on here, but I know it's no walk in the park and of course would rather not be on here at all, but I have nowhere to turn.

My Pulm not very impressed. My PCP who I saw yesterday, thinks Asthma, I had to point out the massive amount of air in my lungs and my constant symptoms, he still went by my FEV1. I realize I have more knowledge than him at this point, which is expected. My hope is that AAT is negative and CT shows nothing. Both portend a better outcome from what I have read. Then that puts me as very unlucky I guess. Well either way I am. Yes, I made choices and have to live with them. That is tough.

What is also tough is that I was married when this began. My wife never quite believed me. We divorced about a month ago. So now I have no help, just me. I emailed here today, she said I was making it up. I sent her the PFT's. Then she emails me back and apologizes, but says not to inform her anymore about what I am going through. Not that I should anymore. But still makes it tough and increases my feeling disconnected!

So I could use some reinforcement right now! Not looking for medical advice. I know all is not well, and I hope to have all of the damn tests done and then Ill just try my best to accept my lot in life. Not sure how I will do that. And yes, I Skype with a Psychologist and have been long before this began, but even then it quickly wears off. I have anxiety meds now, but I don't want to take. Just feel like I am masking my pain.

Any thoughts or pick me ups appreciated! Whatever age, whatever stage! I have a crap outlook and that does not help me. I realize this but it's tough. Been quite a year. Not that I am alone, people have terrible things happen everyday! But when it's you it is hard to think about that. I just picture crap quality of life, loneliness and it is hard to accept!

I am off to struggle up some hills!

19 Replies

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  • Nothing in life is permanent. neither the good nor the bad. It may sound crass but it is true. I permanently remind myself of this in relation to a loved ones illness. I can't offer the magic words to make you feel light of spirit but I can say that you will receive support here. In the meantime, try not to over think things. One day at a time. /Hug

  • Thanks. This is true. I just struggle sometimes, well a lot lately. No it's not crass.

  • Ad not worry bout doctocrs my lung doctor dont see me sends in intrim SO i ask is my doctor still sulking

    No point being nice when they cant be strait with us

    As to living with lung condition yer sure somedays would do us a favor BUT its missing stuff that would get me down

    Life to short as it is with out wishing you life away we all have regrets we cant change but we can chage how we live or try to live our lifes now

  • Hi Patrick. I have been following your case with concern and interest. And have commented before. There are two main causes of air trapping: asthma and Obliterative Bronchiolitis. Asthma should respond to meds. I am so sorry you are struggling so much. And sad that you are not getting the support you need. Very little I can add, just hang in there. Try not to think of the future, just concentrate on the here and now. One breath at a time. Try good breathing techniques and relaxation exercises.

    All the best, love and hugs

    K xxxx

  • Well I have been trying that. It works, but has it's limits. I just have to accept that, hard as it is. I know we had talked some about what may be behind how I am feeling, or should I say what is the cause. I know it is not Asthma, tho there is likely a component there. I am not so sure about the Bronchiolitis. I guess a possibility. Emphysema is what I think, it causes air trapping too. Not sure why my PCP thinks Asthma, wishful thinking, I wish it were.

  • The asthma diagnosis is tricky. I too felt that my symptoms were not caused by asthma: I've had asthma from being a young child. So doctors assumed that was what it was but because I'd experienced asthma for 57 years I knew it wasn't! Through a patient forum I 've got to know someone who has Obliterative Bronchiolitis and he too had had asthma from being a child, and he too knew his new symptoms weren't asthma but doctors again assumed it was! He changed consultants and his second opinion agreed with him and a diagnosis of OB was made. I believe that patients should be trusted to know their own bodies. In a reply to you Coughalot has suggested you try the anti-depression meds to get you over this particular low patch. Such things are not prescribed lightly, so it could be what you need short term.

    K xxx

  • Tis tricky. And yes I know my own body. I never much paid attention though to my "asthma" never a big deal. Rarely used an inhaler. But when I smoked I did get more wheezy, instead of giving them up, I would use Albuterol. Ugh.

    I think I mentioned something similar happened in 2011, but it lasted a couple months and went away. Should have seen a Pulm then. But I had 4 years, almost no symptoms. So not sure how I would not have had progression of some sorts. Maybe some SOB here and there, but like many I assumed allergies, or asthma or being out of shape. At least I know now I guess.

    Still like I have mentioned before, my symptoms are worse over past couple months. People think I am too young for this, or whatever. Not the case. I wish. I told my doctors that if all comes up snake eyes, like AAT, CT, then Ill just stop with all the tests and go from there. Treat others how you would like to be treated. I bet if they felt like me, no stone would go unturned.

  • Hi don't underestimate the effect anxiety can have on our breathing. It can be massive. You would not mask any symptoms by taking the meds but you might find you deal with it a lot better, and you might find you are not so sob either.... x

  • I know. Anxiety does play a role. I went hiking and I was hurting on the ups. But there were times I was lost in thought and honestly forgot how I felt. And I was able to run home and my breathing was efficient and not bothersome. Course that was mostly flat. It is the ups I struggle with. My damn pulse gets so high too. My Pulm thinks it is my heart, why he want's an echo. Tho I don't agree. It is my lungs which affect the heart.

  • Hi Patrick, uve had some great advice, uve had a lot to deal with emotionally and physically, take things slowly, try not to let what if's take over. Take ur anxiety meds, it won't mask anything other then helping u deal with things. Meds won't change or hide what shows up on scans. Ur not alone, we are all here for u with support and advice. Take care xx Sonia xx

  • This is true and I know I have been on here and vented a couple times. Many have it worse than me. Still, hard to always think of that.

  • Hi patrickd72

    I'm sorry to hear what your going through at the moment. We are of similar age in similar situations, down to splitting up with our partners recently. Would love to chat with you.?

  • Hi Patrick...one thing I found when joined the forum is that the feeling of been alone had gone....there was always someone there to talk and if you need someone at the other end of the phone there's always a Samaritan. ..what you going through now will pass.

    It wouldn't be a bad idea if your doctor proscribed a few anti depressants to help calm you for a while.

    Good luck.

    Andy

  • Hi Patrick,

    Go onto blf website and look up Breath-easy groups and see if there is one close to you. Enrol with them and meet people who could be having the same worry,s as yourself, these groups are very beneficial to people like ourselfs. You will find all the help you may need plus the benefit of speaking to people face to face, plus talks from profresonials about our conditions and how we can cope and help each other along the way.

    My local Breath-easy was too far away so I started my own group about 4 months ago and a couple of people has said how this group has helped them. These groups only meet up once a month but you can learn a lot from them.

    Tonyc

  • I live in the US. There are support groups and I may attend one. Or start my own. We will see. I agree it helps to speak with others.

  • Hi Patrick, I was wondering how much albuterol or salbutamol as it is called in the UK, you are using each day. Do you have a steroid preventer inhaler as well.

    I find if I take too much of the blue inhaler and not enough preventer I get problems.

    Good luck and best wishes.

  • I am on Spiriva and Dulera. I do have Albuterol as well and use it sometimes. All three help.

  • Patrickd72,

    so sorry to hear of your health issues. I have had lung issues for 27 yrs, I am now 66. At first asthma, then copd and now 2 yrs ago Bronchiectasis. Just the past few years it has gotten worse. I sob most of the time now. But Im not giving up.

    I've decided to be more proactive: research the illness, see a specialist that knows bronchiectasis. Try alternative methods, such as taking Manuko Honey every day to keep infections away and having the specialist start me on a long term low dosage antibiotics.

    I'm also looking into stem cell research here in the states.

    And, fyi, when I started having breathing issues in my late 30s, my family didn't think I was serious. It wasn't until several stays in the hospital before that realized I had health issues.

    This website is great and to know that Im not alone.

    Stay strong

  • Thanks. I have caught it early, well could have caught it earlier. But here I am now. Many I think get diagnosed much further along.

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