Breathing Freely — Another Step in My March Toward Normal

Not this MAC

The room is quiet as I sit down to write this post. Stephie’s silence is yet another indication that I am nearly recovered from my lung biopsy a month ago. During my pulmo appointment this week, I was able to walk 150 feet on room air before my pulse ox  dropped below 90%. And even though my sats dipped to 85, a minute of deep breathing quickly brought me back up to to 91 and the all-important “green zone.”

What this means is that I am no longer tethered to Stephie while at home.  I can roam freely throughout the house under my own lung power! Of course, this also means I can now reach the washer and dryer unimpeded, so I guess laundry moves back over to my chore column. Bummer.  But the joy of winding up that 70-ft. cannula more than makes up for it!

I still wear the cannula to bed, and take my pony bottles with me when I go out just in case I have to walk further than 150 ft.  And I will probably always use oxygen when I exercise. But I am finally starting to feel “normal” again.  In fact, other than a little residual numbness on torso that will go away eventually, I’d say I’m pretty much back to my old self.  Wait. That’s not true.  I’ll never be my “old self” again. Things are different now. I am different. But in many ways I feel stronger than I have in many years — stronger emotionally, stronger mentally and even stronger physically.  The wracking cough is under control. I’m eating better, treating my body with the respect it deserves, and I have a focus and clarity I haven’t felt for a very long time.

Monday I return to work.  I’m eager to see my friends and coworkers again and ready to get back to business.  I have to admit though, I’m a little nervous — nervous about how the new me fits into this final piece of the “normal” puzzle.  I’ll know soon enough.

UPDATE — My AFB is MAC

More news from my appointment last week — the lab identified the AFB they cultured from my lung.  It’s actually MAC (mycobacterium avium complex).  My kids laughed when they heard the name of the bacteria.  Our dog’s name is Mac (that’s him pictured above). He fancies himself a parrot and frequently perches his furry bum on my shoulder when I sit on the sofa. They thought perhaps I’d been exposed to a bit too much of Mac’s business end over the years. They may not be far off.  MAC bacteria are actually quite common in the environment, but usually only infect people with compromised immune systems or underlying lung disease.  The usual treatment is a year-long course of Zithromax or a combo Zithromax and Biaxcyn.

I see an infectious disease specialist next week for a consult.  Dr. Potts isn’t sure if I have a MAC infection, of if I’m just colonized with MAC (creepy, I know).  And the decision to treat isn’t a given.  I promised him I’d keep his life interesting and so far I’m living up to my word!

I’ve also dropped, 10 pounds which puts me 1/8 of the way to my goal.  At this point, I’m simply focused on eating fresh food with lots of greens, lean protein and whole grains.

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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.

Statistics Suck

Photo by Redwood 1 on Flickr

Dissing stats is a hard thing for me to do.  You see, by day, I’m a strategist for my company.  I thrive on numbers.  Trends, demographics, psychographics, performance metrics.  I live by stats.  But I refuse to die by them.

While doing online research at the Cleveland Clinic site, I came across a statistic that hit me like a sucker punch to the gut:  50% of people diagnosed with IPF live another four years.  50-50.  The flip of a coin. Those are my chances of seeing even one of my kids graduate college.

That single sentence brought me to my emotional knees.  It was the first full breakdown I’ve had since all this started.  But it felt good in a red-eyed, runny nosed, sobby, hiccuppy kind of way.  While I’m all about keeping strong and positive, I also know the only way to slay fear is to face it head on.  Tamping it down, ignoring it, pushing it away only lets it gain strength in the shadows.

So after a good shuddering cry, I started to roll that number around in my head.  50-50.  That means I have just as good a chance of living beyond four years — well beyond even. I have youth in my favor (hah, never thought 50 would be “young”), a crack medical team, loads of wonderful friends all over the country praying for me and sending positive energy, a strong supportive family, and a steadfast belief that four years simply isn’t enough time to complete everything I still have to do.

My brother-in-law is a cardiologist in New Jersey.  As we talked last night, I told him about the stat I’d found.  He said he never shares mortality statistics with his patients because they really aren’t relevant when you get down to the individual.  There are too many other factors — attitude, the patient’s commitment to work hard and consistently on his/her own behalf, the availability of research protocols, other health issues, etc.

So, while statistics may help me determine the best way to improve sales for my company, I refuse to let a flip of the coin decide how much time I have left.  Time to go kick some PF ass.

Ack! I Have to Learn a New Alphabet, Too!

Flavored O2 Bars - if only they had home versions!

Last Friday I learned my official diagnosis is UIP – usual interstitial pneumonitis.  I asked my pulmo what the difference is between UIP and IPF.  My understanding is that UIP is a form of IPF and they are all ILD (interstitial lung disease) — or maybe IPF is a form of UIP.  Whatever, IDK (I don’t know).

My wheezy weekend landed me back on prednisone and in my doctor’s office today.  That’s where I found out a whole lot of interesting stuff (including more acronyms, grrrr!)

They cultured my lung at the same time they biopsied it and they’ve found an AFB in one of my lobes.  AFB – acid-fast bacteria.  My doc says AFBs are found in the soil, on faucets, floors, just about anywhere.  A myriad of diseases are caused by AFBs, including TB, bovine TB, various cousins of TB and leprosy.  I don’t have symptoms of any of those (TG – thank God!)  In fact, I don’t have symptoms of any infection.  So, he thinks it’s a contaminent I inhaled at some point and lodged in my lung — not contagious, not infectious, JHO (just hanging out).  The culture was sent off to the state lab for identification.  We’ll find out more at my visit next week.  Stay tuned!

It looks like I qualify for the protocol Dr. Ettinger is running right now (YAY)!   We have to clear the AFB first, and I have to finish healing from surgery.  But, if all goes well, I should be able to enroll in about 6 weeks.  The doc tells me they are testing an anti-fibrotic medicine.  Once I’ve met with the study staff, I’ll fill you in on the details.

I also met with my new internist today (I booted my previous doc off the team — the one with the unpronouncable name who ignored my increasing shortness of breath for 2 years.) I like my new doc. He’s no nonsense and thorough. We agreed my pulmo will take care of my lungs, he’ll take care of the rest, and I just have to lose weight.  Sounds fair.

So, I am embarking on a new quest to lose 80 pounds and get fit.  My focus now needs to be on getting my body ready for transplant surgery, whenever that may be.  Be prepared. I may start sharing tasty, healthy recipes in the near future. If you have any favorites, please post them as well!

I’ve also decided to jump on the alphabet bandwagon and create my own acronym, which will be my mantra from now on.  ERSR-GMAAM, which translates to Eat Right Sleep Right-Get Off My Ass and Move. Of course, I should have been ERSR-GMAAMing all along. Another one of those things I just “never got around to.”  If this isn’t enough to get me whipped into shape, then I am hopeless.

Ok. All together now…. ERSR-GMAAM  (er sir g mom)    Yeah, you got it!

 

 

My New Best Friends

   I came home from the hospital with two  new buddies in tow.  I’d like you to meet them.  That’s Stephie on the right and Phil on the left.  Stephie is named after a girl I remember from grade school who used to imitate Marilyn Monroe’s breathy voice, complete with quivering lip. We all thought she was sooo grown up. Stephie does a pretty good Marilyn imitation too, with a low steady hum punctuated by a rhythmic huff-chuff.

Stephie is my oxygen concentrator.  She pulls oxygen from the surrounding air, concentrates it to 93+% pure and sends it flying down a 60-foot clear plastic tube to my grateful lungs. The lengthy tube allows me to wander almost anywhere in the house.  It even reaches to the laundry room door, but, unfortunately, it’s not long enough to reach the washer and dryer.  Bummer (heh heh).

Phil is my home fill unit.  He pumps fresh oxygen into my pony bottles for Os on the Go.  They’re actually called portable oxygen canisters, but I think pony bottle sounds much cooler. And believe me, you need help with the cool factor when you’re wandering around with a rather unstylish black nylon shoulder bag and a cannula strapped to your face. I’m grateful for the portable supply though.  The house is beginning to feel quite small, so I look forward to my daily walks around the neighborhood, as well as trips to the doctor and the occasional restaurant.

At this point, my excursions leave me pretty fatigued.  But my doctor reminded me during my appointment last week that I still have a good two weeks of healing ahead of me.  He also says I probably won’t need supplemental oxygen once I’m completely healed from the biopsy. Yay! I was afraid Stephie and Phil were my new BFFS; instead it looks like they’re just TBFs (temporary best friends).  I know at some point they’ll be back for good.  But I’d like to hold that off as long as possible.

I’m also glad to know that this is not the new normal.  I had a pretty tough weekend.  Any activity left me short of breath, made even more uncomfortable by lots of wheezing and coughing. I’m back on prednisone for the time being.  Please, God, please, heal me fast.

Good News!

Aside

A new friend I just met through Twitter,  Mary Beth, pointed me to a great website ipfnet.org.  The site lists 26 medical “Centers of Excellence” that are tops in the treatment of IPF.  Thankfully, one of those centers is the very hospital where I just had my biopsy.  And… the doctor listed is part of the practice I’m already going to.

I’d say there was definitely a bit of Divine Guidance in play when I chose my team!  The site also lists ongoing clinical trials so it’s worth a look and probably a bookmark.

The New Normal

Pulmonary Fibrosis

A week ago, reality bitch-slapped me — hard. My quiet world of carpools, laundry, what’s-for-dinner and the occasional annoyance of office politics exploded when I learned I have idiopathic pulmonary fibrosis.

Thankfully, IPF isn’t one of those instantly critical diagnoses like lung cancer.  Instead it’s a stealthy disease that progressively scars the lungs, making it harder and harder to pass oxygen into the blood.  At this point, I have about 50% lung capacity and I’ve started using oxygen when I’m moving around.  Room air is just fine when I’m sitting still.  Eventually that will change, and the day will come when my lungs simply can’t support me, no matter how much 02 I pump into them.  At that point, my only option will be a lung transplant.

How far off that day is, we don’t know. The progression of my IPF could be slow or fast — we’ll just have to see. But I do know that my sleepy little ramble through life is over.  For years I’ve been half-assedly thinking, planning, dreaming about what I wanted to do, who I wanted to be. The ideas were there but the will for action wasn’t. I’ve always felt like I was waiting for something — permission or a reason — to dive in.  Maybe this is it.

And so, I’m starting this blog. I originally trained as a journalist, and I remain an investigator at heart.  My plan is to share my journey through this blog — from the latest research taking place to insights in living with the disease to rants, revelations and those amazing moments I know lie ahead. I hope you’ll add your own ideas and discoveries to the conversation.

Some 200,000 people suffer from pulmonary fibrosis in the US, and it kills off nearly 40,000 a year. I hate those odds, and I plan to do what I can to swing things in our favor.  Bring it on baby.  Let’s kick some ass!