My Cystic Fibrosis Story
I was running up what felt like a mountain in Baraboo WI pushing my kids in a Burley in spring of 2013 when something happened that changed my life.
Note. If you’re squeemish proceed with caution.
My twins were about two and I was determined to get back in shape. I had decided to do a triathlon before my 30th birthday. This is why I was currently pushing upwards of 50 pounds up a hill like a crazy person.
To be fair, I was a new twin mom so in reality most of life felt a little crazy at that point.
I was halfway up a hill digging in hard, my lungs, arms, and legs pumping. Suddenly I felt the urge to cough and up came a huge clot of blood.
Now if you cough up a clump of dark red blood larger than a quarter – call the doctor. That would be the smart thing to do. I didn’t do that. (Sorry mom.) However a week later when it happened again in the middle of the night I was a bit more concerned. I called my doctor’s office in the morning and made an appointment.
It was a general practitioner in a teeny tiny town that noticed the triangle on my chest x-ray a couple of days later and that was how I found myself at almost 30 sitting in a pulmonologist’s office for the very first time.
I often wonder if my pediatrician or asthma doctors had referred me to a pulmonologist earlier if my diagnosis would have been caught when I was a child. For the record, I do not blame them or anyone else. I also do not think that my life would necessarily be better if it had been caught sooner, but I do find myself wondering from time to time.
Regardless there I was.
Negative sweat tests. Broncoscopies. Sputum cultures.
Several months later my Cystic Fibrosis was still not diagnosed, but a very icky infection had been found in my lungs. Long term IV treatment and possible surgery were batted around as treatment options, when suddenly our life changed again.
In 2014, we found out that my husband got a job opportunity in Mississippi. We put a pin in the discussion of treatment options and moved to the Deep South. There after our boxes were unpacked, I began treatment with a new doctor.
Treating the infection in my lung turned out to be much harder than anticipated. I had one horrible side effect after another. 6 PIC lines, a couple trips to the hospital and many IV drugs later, my doctor referred me to another specialist in Texas.
It was this doctor who eventually insisted on a genetic test for Cystic Fibrosis and in 2015 I was diagnosed.
I’ll spare you the lengthy, boring treatment and doctor appointments for the infection in my lung because the short version is that it didn’t really work and driving 5 hours to see a doctor every couple of months is annoying.
In April 2016, a month before we moved to New York City, I had a partial lobectomy (in other words, most of my right lung was removed).
What followed was the most painful rehab of my life thus far. A lengthy hospital stay. Two chest tubes. My lung collapsing several times. Another hospital stay. Bed rest. Saintly parents watching my twins. Two trips to the Emergency Room in two different states. Re-opening of my surgical site. Another minor surgery to repair it. All this as we moved our family from Mississippi to New York.
In other words, a mess.
However, two years and yet another move later, you would never know to look at me that any of this is true. That’s one of the hardest things about Cystic Fibrosis. For the most part it is an invisible disease.
I still struggle to walk up stairs or big hills.
I still do daily treatments and take sick days more than I’d like.
I still see my doctor more than the average 30 something.
I still have scars all over my right side from the surgeries.
But, in general, I’m much more healthy. My lung function is closer to where it was before that blood clot filled run uphill. There is currently no trace of the infection in my lungs. And with lots of careful work, my Cystic Fibrosis is just an annoying thing hanging around that I can mostly ignore.
also read: Giving Myself Grace & the 3 Seasons of Life with CF
This morning I went for a run again. My twins don’t fit in a stroller any more, thank goodness, and I was alone with my thoughts. I’m older now but still just as determined to make these lungs work.
I don’t know what the future holds. The stats on CF are somewhat disheartening but progress is being made every day. The truth is that diagnosis or not, no one knows what tomorrow will bring.
So all I can do is lace up my shoes, take a deep breath and start running again.