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My Dad’s Battle with Breathlessness

With a disease like IPF, an early and accurate diagnosis – and working with a doctor to start treatment immediately – is so important.

Many moments in my life have left me breathless. There are the good ones, like the birth of each of my children or walking out to center field for the first time in my Yankees pinstripes, and also the bad ones – like losing my number one fan, my dad, to the rare lung disease idiopathic pulmonary fibrosis (IPF) after a long and difficult battle.

It was 2001. I was headed off the field after a tough 10-5 loss to the Orioles at Yankee Stadium when the team’s public relations representative pulled me aside and told me my dad’s condition had taken a turn for the worse. That was all I had to hear. I immediately got on a plane to Puerto Rico knowing it might be the last time I would see my dad. When I landed just after midnight, I learned that he had passed away only an hour before. I never got to say “goodbye.”

Losing my dad was devastating. At every point in my life, he was there for me. Growing up, he had always encouraged me to chase my dreams and pursue my two passions: baseball and music. He’d hit me endless fly balls at the local field, and it was my dad who gave me my first guitar after years of listening to him play and begging him to teach me how. He was ever-present and invincible to me, so when he started to become breathless and have regular, uncontrollable coughing fits, I was really worried. Everyone in my family was.

We all begged my dad to see a doctor. But, like so many men – particularly of his generation – he was reluctant to go. His symptoms got worse, and his difficulty with breathing started to interfere with his doing every day activities. Finally, it was too much, and he agreed to see a doctor. The first few doctors he saw had difficulty diagnosing what was wrong with him.

The Turning Point

Finally, after years of unanswered questions and unresolved symptoms, my dad saw a lung specialist who was able to perform the proper diagnostic tests, and we learned what had been plaguing him for so long: IPF. Three little letters that would change my family’s life forever.

The doctor explained that IPF – or idiopathic pulmonary fibrosis – is a rare lung disease that was causing my dad’s lung tissue to scar and harden, making it difficult for him to breathe and causing the breathlessness and coughing he’d been suffering with for years. Unfortunately, as the doctor went on to also explain, my dad’s IPF had progressed far enough by that time that he was expected to have just a few more years to live.

Pushing through the shock and devastation, we searched for information to make sense of this disease that none of us had even heard of but there was barely anything out there at that time.

It was my turn to step up to the plate, this time as part of the support team for my dad, the man who had always been there for me. I flew back and forth from New York to Puerto Rico regularly over the next few years as often as I could. Thankfully, my mom and brother Hiram were able to devote much of their time to taking care of my dad as he battled this disease. It gave me peace of mind knowing that they were there when I couldn’t be.

After a bravely fought battle, my dad succumbed to IPF at the age of 73. It’s still hard for me to believe it’s been that long since he left us, and not a day goes by that I don’t think about him or wish that he was still here. He would have loved to spend time with his grandkids and to see what I’ve done with my music.

In hopes of turning my family’s difficult experience into an opportunity to help others, I’m now teaming up with Boehringer Ingelheim Pharmaceuticals and its Breathless campaign to raise awareness of IPF. I want those who are impacted by this disease to know about the informational resources that are available to them today and to encourage them to get the help from a doctor they need earlier than my dad did.  With a disease like IPF, an early and accurate diagnosis – and working with a doctor to start treatment immediately – is so important.

Learn more at www.BreathlessIPF.com and pass along the information found there to your loved ones – you never know who may need it.

More information:

Who’s at risk: signs and symptoms of IPF

  • Persistent shortness of breath (especially from mild physical activity)
  • Persistent dry, nonproductive cough
  • Fatigue and weakness
  • Crackling sound when breathing in (sounds like Velcro)
  • Finger clubbing (widening and rounding of the fingertips)

Visit www.BreathlessIPF.com for more information

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