Taking Another Step

Dad is looking at our Mom’s face as she takes the photo. He is breathing with one transplanted new lung as he begins his new life.

Last week, I shared what was entailed in writing my book, Your Wildest Dreams: A Parkinson’s Love Story. I said it took a long time and was varied, fun and sometimes hard.

This week I share the news that I am moving my weekly blog from the Mailchimp newsletter format to Substack. There won’t be much that changes for you other than the email you receive from me will come from Substack and it will be easier for you to comment or interact should you choose to do that.

For me, it is another step in making good choices for sharing my blog and marketing Your Wildest Dreams: A Parkinson’s Love Story. It’s time for me to expand my reach. You can count on receiving my free weekly blogs with intuitive clarity about living well with Parkinson’s and other disease. In addition, I am now selling my book and being available to speak to groups with motivational stories and experiences to inspire, no matter what one is facing.

Here is one for you.

In 2004, my dad was 72 years old and he was dying of a lung disease called IPF, or Idiopathic Pulmonary Fibrosis. He was on oxygen 24/7 and knew he probably wouldn’t live much longer. In September, at a big family dinner at his home, he announced, “I don’t know if I will live another year like this. I can feel myself winding down and without a chance for a lung transplant I don’t see myself being around.”

Dad and Mom had sought medical help from several hospital complexes near their Chicago home and in different cities. He had been told by over 20 doctors that he was too old to be put on a transplant list. My dad was willing to fight for his life but he couldn’t do that without a doctor who believed he had a chance.

“If I can make it to Christmas, Mom and I have an appointment at The Mayo Clinic in early 2005.” He told us. “That is the last place we know to try. Darn it all, I can’t believe I may not even live until I’m 80!”

We all shared his disappointment.

In January 2005, Dad got approved to be on the list for a lung transplant.

He was 209th on the list and his condition was failing quickly so that it didn’t seem likely he’d live long enough to receive a lung.

In May 2005, Congress changed the rules about who was prioritized on the list and age was removed as a criteria and people with the most need went the top.

Overnight, Dad went from #209th to #9.

On July 26th he was called by the Mayo Clinic at midnight and told there was a lung for him if he could get to Mayo’s by 6 am. It was a 6 hour drive (too far) and the clinic’s plane was stuck in a storm in Kentucky so unavailable.

I happened to have been visiting and became part of their frantic effort to find a private plane and pilot to get Dad to Rochester, Minnesota before 6 am. This was in the days of landlines, phone books and yellow pages. If you don’t know what those things are, ask an older person. We scanned the yellow pages and made cold calls- leaving messages- for dozens of small charter plane companies.

At about 2 am a pilot called us back.

“I’m in Kenosha and I can take you to Rochester but I only have my slow plane so the timing will be close and I’ve been at a party and had some beers. I’m not drunk but I’ve been drinking.”

“Great.” Dad said. “We’re on our way.”

It took an hour to drive to Kenosha. Dad sat in front and Mom and I sat in the back of the 4 seater plane. We all wore headphones to hear talking over the roar. At one point Dad said to the pilot, “I think you’re heading too far east- we need to go towards LaCrosse, not Green Bay.”
Dad was right and the pilot adjusted.

We landed at 5:55 am and an ambulance was waiting.

Dad was whisked off to prep for his 12 ish hour surgery and Mom and I waited. After an exhausted sleep in some chairs, we woke up and Mom shared with me the letter Dad had written her- knowing he may not live through the surgery.

“When I wake up, he wrote, I know I’ll see either your face or God’s face and either way, I’m happy.”

He woke up and saw Mom’s face.

Dad lived well for 16.5 more years and died at home at age 89.

Always keep room for hope.

Please share my new Substack newsletter if you feel inspired to do so.

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