How It All Started

  Over the past few weeks, I’ve met several wonderful people who’ve shared their IPF stories with me.  I thought I’d add my own here, in the hopes that it might help someone to seek answers earlier than I did — or at least with a lot more gusto!

To really understand my story, we have to go back to 1996 when we first moved to St. Louis.  That year I had five bouts of bronchitis and my first experience with asthma.  St. Louis is notoriously bad for allergy sufferers, and like so many others, I quickly succumbed.  I found an allergist, had a full battery of tests and was sent on my merry way with two inhalers — albuterol and Flovent.  Since my asthma only flared during rigorous activity, I was able to control it pretty easily.

Then in 1999, I once again developed a series of respiratory infections, one after the other.  My regular doctor’s medical secretary decided it was her job to keep nuisance patients at bay, so she refused to give me an appointment.  As I would start to describe my symptoms over the phone, she’d interrupt me and say “Upper respiratory infection, I’ll call in some amoxycillan.”  And so it went for three courses of secretary-prescribed antibiotics over a period of four or five months.

My fourth infection that year was much worse. It hurt to breathe, my chest felt heavy with a rattly productive cough.  I got winded walking up the stairs or talking.  I called one last time to see if I could get an appointment and once again I was stone-walled.  So I went my allergist instead.  He immediately diagnosed me with pneumonia and put me on a short course of prednisone and Zithromax.  I wonder now if this series of infections was the “triggering event” that started the slow and steady progression of my IPF.

From that point on, I settled into a pattern of once-a-year infections, which we knocked out with a course of antibiotics and prednisone.  I used my albuterol inhaler when I exercised, pretty much forgot about the Flovent, and seemed to get along fine for several years.

Then menopause hit and I started to gain weight.  My fitness level declined as well and everything seemed to get harder. In 2008, we took a trip to Denver and I struggled from the moment our plane touched down. The mile-high altitude left me dizzy just walking from the car to our hotel lobby.  When I tried to hike with the family, I ended up sitting on a boulder by the trail, gasping for breath.  I knew I was out of shape, but this just didn’t feel right.

I described what had happened to my doctor during my physical. She told me it was just asthma and I needed to get serious about using my Flovent inhaler.  My asthma  wasn’t that bad, so I pressed her.  She said not to worry, just be diligent with my inhalers.

In 2009, I developed an intermittent dry cough and began buying Halls cough drops in bulk.  I started getting winded walking up even just a single flight of stairs.  Again, I chalked it up to being overweight and out of shape. Over the next year, the cough worsened, becoming my constant nagging companion.  Both my allergist and primary care doctors said my lungs sounded clear with the exception of my annual respiratory infection.  Neither seemed particularly concerned with my shortness of breath.

In February 2011, while on business in Atlanta, I headed out to lunch with one of my longer-legged coworkers.  I found I couldn’t maintain a conversation and keep up with him at the same time.  We climbed a long flight of concrete steps and by the time I got to the top, I was dizzy and gasping.  I lagged several feet behind my him, trying desperately to catch my breath. Finally, I just stopped and doubled over, my chest heaving.  I recovered after a couple of minutes and vowed to avoid stairs from then on.

Between February and July, the dry cough became more insistent and I decided I had to do something about it. I went to my allergist who suspected the cough was a side effect of my blood pressure medicine. He changed my meds and I went back two weeks later, still coughing.  Since my lungs sounded clear and my meds weren’t the problem, he figured acid reflux must be the culprit and prescribed an acid-controller and a new inhaler — Dulera.  As an afterthought, he decided to send me for a chest x-ray. (CXR). Divine Intervention?  I think so.

I went for my x-ray and the doctor called two days later.  It’s never good news when the doc calls. He said it looked like I had interstitial lung disease and waved off my questions, saying he was out of his depth and I needed to see a pulmonologist.

A quick web search showed that interstitial lung disease encompassed some 200 different diseases, ranging from curable to terminal.  I stopped at that point, realizing I needed more answers. I did my due diligence and selected Dr. Daniel Potts as my pulmo.  Divine Providence again — Dr. Potts belongs to the same practice as Dr. Neil Ettinger who is one of the nation’s key researchers in IPF.

Dr. Potts ordered a CT Scan and a massive array of blood tests — 10 tubes!  They checked for everything from Lupus and Rhumatoid Arthritis to fungal infections and a bunch of diseases I’ve never heard of and can’t remember.  The CT showed I have infiltrates throughout both lungs, and the blood tests all came back negative.  The only thing left was a biopsy to confirm what he already suspected.

So now we know.  And I hope anyone who has similar symptoms doesn’t wait as long as I did to find out what’s going on.  The biggest lessons I learned?

1.  You are your best advocate.  I didn’t push hard enough when I felt in my gut something was wrong.  You know your body better than anyone else.  Speak up!

2.  Don’t accept crappy service. You deserve better.  I waited through 4 increasingly severe infections before I sought help from another doctor.  Really?  I wouldn’t have accepted that kind of abuse from a restaurant.  Why did I accept it from my doctor’s staff?

3.  Get your head out of the sand!  My docs didn’t seem worried, so I figured that meant my own nagging concerns were unfounded.  See #1 — if you think something’s wrong, insist they check it out!  Dr. Potts told me about a study that showed the attention span of the average doctor is 17 seconds.  They see dozens of patients every day, so chances are you really don’t have their undivided attention for the 10 or 15 minutes of your appointment.  Keep asking questions until you get the answers you need.

What’s your story?  I’d really like to know.

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4 thoughts on “How It All Started

  1. Lori, I’m just starting to read your blog and it’s wonderful. Going from current to back to the beginning. Your story is so familiar to a lot of us. I am so proactive with my health and persistent that when I was diagnosed in 2006 with pneumonia yet again (after the every year diagnosis for about 7 yrs) that I went to a Pulmonary dr. At that time he only labeled me as having ‘some scarring’ nothing to worry about. Unfortunately for me I did what he said not worry. Not that the outcome would have been different it just may have not been as soon. My fight now is for quicker diagnosis and AND for quicker service from the medical profession. It took me from November of 2012 coughing continually until May of 2013 to get to the right doctor. I went to a Pulmonary could only see a PA twice! who said I had post nasal drip then to a E-N-T who said it was acid reflux (probably not far from the truth I guess) and the Gastro Dr. where I lost my emotions who picked up his cell phone and called a Pulmonary Dr. for an appointment for me. Within 3 days I was in front of the head of Pulmonary preparing for a biopsy. Like with many of us.. it should not take this long. Now that I know I have a sucky disease that is going to make my lungs look like a beehive I can try to slow it down by getting more help.
    Thank you Lori for your research, your blogs and your insite!
    Laura

    • Laura, thanks for sharing your story. Your experience is very similar to many PF patients — unfortunately. We all have an important role to play in educating the medical community and advocating for better diagnoses and treatments. You have a great attitude and I know you will be a valuable Warrior in our continuing fight!

  2. Lori: I am so sorry you had to learn a lesson the hard way. I don’t mean to be trite, but I have to say that it’s never too late to learn and change and DO, which is exactly what you are doing. You write so well, and are such an articulate person: you would make a great spokesperson for an IPF foundation, or perhaps for patient advocacy supporters or support groups.

    When my father was gravely ill with lymphoma (he passed nine years ago), we all learned in our family to speak up and seek doctors who will take us seriously. Now, I do what you suggest — expect only the best, undivided service from my doctor, and go to someone else if I have to. It’s too bad, but I also exaggerate my symptoms to make sure I don’t get the run around from some self-appointed gate-keeper, like your first doc’s secretary.

    Women, in particular, need to be vigilant about our health and about being taken seriously. Too many doctors use “menopause” or “overweight” or “stress” or “hystrionics” as an excuse to pidgeon-hole our complaints rather than think outside the box for some real answers. And we women are the ones who KNOW what feels wrong or right, we know … and have been blessed with compassion and intuition as second nature.

    If you want to know the lesson I have learned over the past nine years (from my own experiences, though my health is relatively good, and from my experience with medical care for my Mom who lives very near me and is also in pretty good health), is that doctors are no more or less “god-like” than any other professional; they know no more or no less than high-functioning, talented people with the gumption to seek answers; and taking care of one’s self has got to be THE top priority, from physical health issues that are just weird enough to signal an alarm to emotional rest and restoration issues that affect quality of life.

    I am loving your blog and pray for you every chance I get, and thank God for your spirit and generosity in the face of some really scary stuff.

    • Wonderful words of wisdom and insight. You are so right. I think if I have one primary message it’s self-advocacy. Question, cajole, insist, question some more, research, give your opinion and take an active role in your own physical, mental, emotional and spiritual health.

      Thanks for sharing your story. I love hearing from you!

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