Sunday, November 6, 2011

Hello Goodbye

You say yes, I say no

You say stop and I say go, go, go
Oh, no
You say goodbye and I say hello
Hello, hello

I don't know why you say goodbye
I say hello
Hello, hello

Last July, I wrote the post Two of Us where I first shared the story of Mike Stanzione. As a reminder, Mike is a Pompe patient who has faced many of the same struggles other adult Pompe patients do, but with a twist.  While Mike had the same challenges with muscle weakness, respiratory deficiencies, etc., he wasn't able to manage them in the comfort of his home.  Rather, due to his 24 hour dependency on a ventilator and his health insurance, he was required to stay in a hospital.  The twist is Mike's hospital stay lasted over four years with no end in sight.

When I met Mike last summer I was inspired.  I was inspired because despite the steadfast position from his insurance company who said he could not go home, he continued to believe that his stay was temporary. I was inspired by his commitment to wife and son and his family's commitment to him, never giving up, visiting and supplying posters of his young son's achievements.  Most of all, I was inspired by the man's spirit.  After four years in the hospital, he had every right to pack it in and give up, but he refused to say goodbye. 

The day I visited him he had just finished a call from a member of Dr. Barry Byrne's staff at the University of Florida. He was in conversations about a revolutionary procedure where he would be the first person with Pompe to get a diaphragmatic pacemaker. If the procedure worked, it would allow him to breathe without his ventilator for part of the day.  This was the key to returning to the only place he wanted to be...home.

Mike's residence was the long-term care area of Bergen Regional Medical Center in New Jersey.  This was not a hospital wing filled with the joyful sound of newborn babies. This was a serious place where people with long-term health challenges came and stayed.  I don't know what it is like to live month after month and year after year in a long term care center, but I'm sure it is not easy.  During my visit I saw people who seemed full of life and others who seemed resolved to live out their days in quiet. I'm not sure what makes the two of them different, but my belief is hope. 

Mike had that hope - the hope that one day he would be reunited with his family. Rather than listen to the officials telling him to say goodbye, he chose instead to reach out over the internet for a solution.  Through Facebook he found a worldwide network of Pompe patients waiting to help him.  He found new people with new ideas and new solutions.  This eventually led him to Dr. Byrne and the amazing people at University of Florida's Shands Hospital. 

Through the efforts of many, Mike made it down to Florida for that revolutionary procedure.  He recovered well and headed back to New Jersey where a great thing happened.  Over time, it seemed to work.  One day he was able to be off the ventilator for an hour.  A few days later it was two and a half hours.  Then it started to roll.  Four hours became six, six hours became eight, and eight became twelve. His 24-hour dependency was broken and he was finally coming home!

You can read the rest of the story in the web link below: 
If the link does not work, please copy and paste the following into your web browser: (

I have a feeling that when all the hoopla resides, the welcome home signs are put away, and day to day life returnes, Mike will look back.  He will remember those days in the hospital when others told him he would never go home.  He will remember the battles he won and the support from his family and friends.  Best of all, he will be remember the reason behind it all each time his son walks in, throws his arms around his dad, and says... 

I don't know why they said goodbye
I say hello!

Congrats Mike!


PS: To all my friends at University of Florida, Great job!  It's a good day to be a Gator! 

Credit to: The Beatles, "Hello Goodbye"