Friday, March 20, 2009

Just Breathe

In October or November of last year, I began to get sick. Fatigue, mostly, and a bit of nasal congestion. I fought it off until Thanksgiving, when it broke out into a full-blown head/chest cold for a few days. After that I got better, except for a little lingering fatigue and persistant cough… until the week before Christmas, when I got raging sick again. I rarely go to the doctor for a cold, because I know that antibiotics do nothing for viral infections… fluids and rest are the only remedies necessary, other than a good immune system. This time, though, the symptoms were more severe and I was having trouble breathing. I went, and was diagnosed with an upper respiratory infection, and prescribed antibiotics. They didn’t work. Back to the doctor… and again… and again, each time given a different antibiotic. By now all of my head/chest cold symptoms had passed, but I was still very fatigued and having trouble breathing.

By mid-January I couldn’t stay awake for more than 15-20 minutes without pretty strong stimulus, and hubby (a former EMT) had put me on oxygen a couple times to ease my breathing (I probably should have gone to hospital, but hubby was afraid it would freak me out). Finally, my doctor sent me to a pulmonary specialist for a chest x-ray and pulmonary function test. The specialist sent the diagnosis to my regular doctor, who gave me the report: emphysema.

Allow me to digress a moment. My immediate ancestors are generally long-lived and tend to drop dead rather suddenly or after very brief illness. That is, except my maternal grandfather, who was a lifelong smoker and died of emphysema. Emphysema is a slow, progressive, degenerative disease. Grandpa passed when I was in junior high, and I never knew him when he wasn’t gasping for breath. In his last years, he started taking oxygen, until he was on it continuously, and still he gasped, fought, struggled for each breath he took, until the last. My parents both smoked when I was little, but both quit when I was around 7 years old. I’ve never smoked, and I avoid second-hand smoke as much as I can. Mom will be 70 next year, and her lungs are fine. So I’ve always assumed that when my time came, it would be quick. Now, when I looked at myself in the mirror, I not only saw my grandpa’s ears, I saw him gasping for breath. I saw myself gasping for breath, struggling for years until my life consisted only of prolonging that life, one breath at a time.

I was devastated. And terrified.

In the midst of this, I lost two of my mentors within 2 weeks… a lady who was a lifelong friend of the family, and the professor who got me into grad school and pointed me toward my current career. I felt surrounded by death.

I shared the full extent of my anguish and fear with only my husband and a couple of my close friends. To give it voice was to make it stronger, and it was already crushing me. (I couldn’t even tell my parents… it would have devastated my mother as well.)

My doctor put me on medications… steroids and bronchodilators, and antihistamines to keep my allergies from exacerbating the condition. I finally went back to work the last week of January. At first I was just glad to be vertical again, but it felt so surreal, going on with life as if my whole future hadn’t just been turned upside down. Eventually, though, I managed to regain some perspective. I started reading up about emphysema, and found out that in young non-smokers, the primary cause is deficiency of an enzyme, alpha-1-antitrypsin. So when I went back to my doctor for a follow-up, I asked him about it. He confessed that it was beyond the realm of his expertise, and he referred me to the pulmonary specialist. My appointment was yesterday.

The PS asked me for a complete history of the illness, dug up my results from the previous pulmonary function test, performed another short breathing test (since I’ve been on meds for a month), and pronounced that I have ASTHMA. I told him I was so relieved, that my regular doc had said I had emphysema. PS looked back at the report and said that no, he had written that I had COPD (chronic obstructive pulmonary disease), without differential between asthma and emphysema. My response to the medications, and the results of the quick breathing test that he had just done indicated asthma. He said emphatically, “You don’t have emphysema.”

After two months of torment, of dreading my entire future, I have been given a reprieve. I have asthma. About 1/3 of cases are adult onset. I’ll have to take medications to control it, and I’ll need to explore what triggers it, so as to avoid those triggers. I’ll live with it the rest of my life, but I will live… and breathe… at least, until I die.

It feels good to take in a lungful of air, to heave a big ol’ sigh of relief, to look forward in thanfulness instead of fear.


  1. I just read your post and I am so very happy for you. I too had increasing infections, shortness of breath, diagnosis of adult onset asthma and eventually - Alpha-1 Antitrypsin Deficiency.

    I too watched my father die a slow and agonizing death. His doctors simply told him he had emphysema and let it go at that. In fact, his cause of death is listed as complications of prostate cancer. It wasn't - It was his alpha-1 related emphysema.
    I too went through much of the fear and angst you did at the time of diagnosis... at the time (in 1999) was told I had about 2 years left and needed a transplant.
    The good news is that getting the diagnosis and knowing... being given the knowledge of what it was that I was fighting... saved my life.
    I am now living each day knowing that my diagnosis of A1AD was a life sentence and not a death sentence. We all are headed to the same destination... the difference is how we live our lives while getting there.
    Good luck and God Bless and please take a deep, deep breath for me. You have been blessed with knowledge and thankfulness. What a wonderful gift!

    Be well.
    Alpha-1 John

  2. John,

    I'm sorry to hear about your father, and about your own misdiagnosis, but I'm glad you finally got to the truth before it was too late.

    I don't expect my family practice doctor to be an expert on pulmonary diseases, but he had never even heard of A1AD before I mentioned it. As devastating as emphysema is, you'd think there would be a test for it at birth or something, like there is for PKU. I have to wonder how many other people suffer the same fate as your father because they never get the information.

    God bless and keep breathing!


  3. You need to get an Alpha 1 test anyway to ease your mind and just to be sure. Here's why....I would say this. Your family history sounds quite like mine with everyone on my father's side dropping dead fairly early in life of lung, pulmonary failure and so on...Your doctor said you had asthma and COPD (chronic obstructive pulmonary disease), without differential between asthma and emphysema. But you said your current doctor examined you and felt it was asthma. As a non-smoker, I had about the same scenario (except asthma/bronchitis lasted for 20+ years) no smoking in my life and a doctor said this may sound crazy but I just want you to take this one test....It's a genetic cause for the COPD you are having....You never smoked right....and a week later, I was going down a very quick path of being referred to an alpha-1 specialist and placed on Aralast, one of the medicines to treat the deficiency. You don't say anywhere in your post that you were actually tested so seems to me you don't know till you test. My breathing problems were poorly controlled with various nebulizers and inhalers but the Aralast has made quite a difference in my life stopping further deterioration of my FEV1 levels which had dropped in the past 3 years rather quickly to below 40% and oxy sats on exertion below 88% and so placed on oxygen and now on Aralast.

  4. Julie,

    Good point. I'm doing much better on the meds I'm on now, as expected if it's asthma, but that doesn't mean that there isn't underlying emphysema anyway, I suppose, as in your case. I think I'll ask the PS about it at my followup.

    I'm also going to see an allergy doctor about getting full-spectrum allergy testing. I know that I have unspecified grass/pollen allergies, but I've never been tested because they don't bother me that much. Or haven't in the past. But I know that alleries can trigger asthma, so I suppose I need to do something about them now, before they do something about me.

    Take care

  5. Ack... accidentally hit the publish button while trying to sign off. Technology defeats me.