Ms. Diagnosis

I have had lung issues for many years, many improperly diagnosed.

The first time I had an exacerbation experience the specialist told me it was panic attacks. Not knowing much about panic attacks and trusting the doctor… I just continued life as normal as possible. The “panic attacks” came and went for a couple of years.

Then the diagnosis of asthma came along. I didn’t really understand that one either, because I never had to use a rescue inhaler or the things one relates to the illness without knowing better.

After that came pneumonia repeatedly, like 3-4 times a year… all progressively getting worse and all improperly diagnosed.

But, I had no idea how sick I really was. Single mom working 50+ hours a week just trying to make ends meet… you know, living the dream. I didn’t have time to be sick. I didn’t have time to follow up with doctors and keep looking until I figured out what was wrong. For a year or so, it was go to work… get sick… go to hospital… stay for a couple days… get out of hospital and go directly back to work. I couldn’t afford to take the extra 3 days off between hospital and going back to work. Then it happened. The crash.

One morning, I was at work. Usual routine: open the business by 7am… then I noticed a humming sound in my ears… realized I couldn’t catch my breath, my heart was racing, head spinning, lights flashing… definitely knew something was wrong!

I knew my lungs weren’t working right the day before and had already scheduled an appointment with my doctor to get the usual steroid shot during lunch, but there was no way I could wait until then. So I drove myself to the office where I was told he was making rounds at the hospital. So I drove to the hospital… made it to the ER and collapsed.

I spent 5 days in the ICU getting breathing treatments and shots of blood thinner in the belly… wondering how this is all related to pneumonia.

Little did I know that when your oxygen levels get so low in your blood, it becomes acidic, kinda like a battery, and my EKGs were all over the place. I was on the verge of a massive heart attack or major stroke.

I was 38, worked out at the gym, never smoked, did drugs or abused alcohol. I was active, in good shape. Or so I thought.

Waking up in ICU and being told I had to be transported to another hospital to undergo a heart cath (on Valentine’s Day, ironically) changed that perspective.

Finally my new doctor diagnosed me with COPD. I asked what that was. Basically I was told it is a ‘blanket term’ for disease of the lungs. He would send me to a specialist to get it figured out. My actual diagnosis would come later… pulmonary fibrosis.

I should’ve taken the time and searched for answers years ago. Honestly, I figured it was some thing a bit more than the previous diagnosis I was given early on… but I was too busy. I went from doctor to doctor never keeping one long enough to find the problem – just treat the symptoms so I could go back to my busy life.

Now I have all the time in the world… in between naps. The damage is done and there’s no going back. I might have a better quality of life right now if only I hadn’t been so hard headed… too busy. If I had taken the time to find out what was wrong and treat it. The responsibility lies squarely on my shoulders. I didn’t really give the doctors a chance. They didn’t really know the half of it…

Call me Ms. Diagnosis.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • Marcus72
    2 years ago

    Wow GaylaSwintChristie, your story broke my heart. Also what breaks my heart is how hard you’re being on yourself. Most of us made ourselves sick with smoking, as I reflect back on my life it’s so easy to kick myself in the butt and regret every cigarette or binge drinking or drug I ingested. But you didn’t do any of that and like the rest of us never considered COPD or PF and all the complications they bring, how could you? I can’t offer any advice on your illness, but I want to urge you to have compassion on yourself, life can be hard enough without beating ourselves up as well. You didn’t fail you, I promise. Live your life for kid, go through pictures write notes on them, and live each day as it comes. You have my thoughts and well wishes.
    ~Marcus

  • Janet Plank moderator
    2 years ago

    GaylaSwintChristie I have to comment too. What a ride you have been on from misdiagnosis, all the way to where you are today. Thankfully when you went down you were in the ER and not driving, or even working.

    It sounds like your new doctor is just who you needed, to help get your answers and find the specialist that would help with further diagnosis and treatment without the band-aid approach you had received from others.

    You have had quite the journey, you might not have the best quality of life, but thankfully you do have one and may it be the best there is.

    Ms. Diagnosis, thank you for sharing. We hope to see you and hear how you are doing.
    Janet (site moderator)

  • Casey Hribar moderator
    2 years ago

    Wow, GaylaSwintChristie! (or should I say, Ms. Diagnosis!) What a story! Thank you for taking the time to share all of that with us! What a ride you’ve had throughout your COPD journey. I’m so sorry you’ve had to endure so much, and that it took such a massive crash to get an accurate diagnosis. We’re so glad you made it through this scary time, and are so grateful to have you here in our community now!

    It sounds like you’ve either stopped working or have scaled back. Is this the case? How has this impacted you and your family? Has this been a big change? Please don’t blame yourself for receiving a late diagnosis. It sounds like you are, and always have been, a true warrior, and you were just doing what you do best–fight through it all. Please continue to keep us updated, we’re here for you, and wishing you some relief soon! -Casey, COPD.net Team

  • Casey Hribar moderator
    2 years ago

    Hi again, GaylaSwintChristie,

    I’m so sorry to hear you were never able to go back to work, especially after having worked for so long. However, I am SO glad to hear that your husband is such a wonderful support system! He really sounds so stellar! You are a very lucky lady! WOW battling a chronic condition with THREE teens in the house?! Amazing….. Not everyone can even handle one teen when 100% healthy.

    It is so wonderful to hear that you received disability insurance and that your healthcare team is so supportive. It really sounds like you have so many people around you and fighting with and for you.

    We hear you on the depression, and it’s something many of our community members struggle with. Especially for those who were once so active before COPD. You’re so not alone in this, and we’re here for you anytime you need to talk, or need a friend. I’ve found a few articles for you on this that you may find interesting or helpful. You can find these here:
    https://copd.net/living/depression/
    https://copd.net/living/grieve-old-lives/
    https://copd.net/living/not-so-ordinary-day-in-the-life/

    Thank you for taking the time to share so much with us. We’re so grateful to have you in our community, and that you’re consistently sharing your fighting spirit and positive attitude with us! We hope you’ll continue to engage with us and other community members, because you truly make a difference here!

    Sending positive thoughts and energy your way! -Casey, COPD.net Team

  • GaylaSwintChristie author
    2 years ago

    I was never able to return to work. That was a hard thing to accept. I’ve worked since I was 15… I can’t remember a time in my life I didnt have a job. I still find myself waking up every morning at 5 am.. that’s a major adjustment.
    My husband is my hero. He takes great care of me even when I object..lol I went from being the major contributor to our household finances to the lesser provider. The budget got tighter.. but we’re doing ok. Our children are grown now.. so that’s a big plus.. when I first got sick 3 teenagers in high school! UGH!
    I thank God everyday I opted for the disability insurance offered by the company I worked for… and I thank God for the doctors I have now. I honestly don’t think I’d be alive today without them and my wonderful family.
    Still battling depression over the physical restrictions I have to adjust to… From active horse riding farm girl.. growing a garden.. putting up hay.. always active.. always on the go.. to borderline couch potato..
    I’ll get there! My faith and support of family and friends make me strong.
    I’m happy to be able to vent and ask questions on this site… to people who understand. It helps!

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