Announcing: Mosher Cincinnati Send-off (RSVP Below)

How obstructive lung disease makes me more like a teenager than an old man!

I tend to get picked on by some of my colleagues in a little brother sort of way.  Here is how one of those email conversations went  the other day:

Me: Some smart aleck comment about a project.

Colleague: I'm going to send you to your room again!

Me: But Moooommmmm. I didn't even do anything.

Colleague: Straight to bed, no TV, put on your headgear, acne medicine, and turn on the sound machine. AND GO TO SLEEP!

Me: If my nasal cannula counts as head gear, the prednisone continues to cause break outs and my oxygen compressor functions as a white noise/sound machine, I'm not too far off! (Here I thought my COPD was turning me into an old man, really I'm just becoming a teenager! Yeah for me. Do I get to go to Prom again?!)

Colleague: Only if Eileen says yes!

(Which is as good an excuse as any to post another high school dance photo.  Evidently the previous prom photo has gained its own cult following with certain readers of Born for More.  Enjoy readers).
 

Why preparing for transplant is like preparing for preschool

In preparation for St. Margaret of Scotland Preschool Adah has had her latest couple of visits to the pediatrician and emerged with three vaccinations and one blood test for lead poisoning.

 

Today I had what should be my last visit to my primary care doctor. Since I’ll be immunocompromised after transplant he saw this as a good chance to boost my immunity.  So I also left the doctor’s office with two sore shoulders, four shots (Hepatitis A, Hib, Meningococcal and Prevnar) and two Clifford the Big Red Dog band-aids to show for it.

 

 

Adah’s first words, “Ahhhhhhh! Did it hurt, Daddy?” 

 

Yes it did, and I didn’t even get a sucker or sticker like this kid did.  

And this one belongs to the Reds...

  

A beautiful night to watch a baseball game with great friends at

Great American Ball Park.

 

Even the Reds cooperated to oblige the local fans with a rousing victory

(at least tonight).

 

A little bittersweet to know this will be our last Reds-Cards game to take in

for some time at GABP.

 

I can't speak for Adah who claims to be a Reds fan in Cincinnati and a Cards fan in St. Louis, but the rest of our hearts belong to the Reds,

even if my lungs belong in St. Louis. 

 

This left-hander is rounding third and heading for home.  

Good night and so long, everybody.   

Life-Learners

 

Gallup/Clifton StrengthsFinder “Learners”: You love to learn…the outcome of the learning is less significant than the "getting there." 

It was roughly three years ago that my pulmonologist in Cincinnati first mentioned “transplant” after reviewing my declining pulmonary function tests.  The truth was that I had come to that revelation some time before.  After doing enough Google and PubMed searches, I knew that an FEV1 less than one liter per minute correlated with a significantly poor quality of life and was often pre-requisite for consideration of lung transplant.  Of course the gravity of that conclusion carried much more weight coming from my doctor. 

 

As lung transplant went from a clinical hypothetical to an ever more serious reality, I tried to soak up as much information as I could - from journal articles, United Network for Organ Sharing and Organ Procurement and Transplantation Network statistics, and the transplant centers themselves. 

 

I also found a trove of pre and post-transplant testimonies in the blogosphere.  Patients’ and families’ stories of determination and successful transplant outcomes have given me hope and optimism for my own future.  As I read blog after blog, I found a certain affinity and solidarity with young adults who have cystic fibrosis.  They, too, face transplant in the prime of their lives with homes mortgaged, marriages started, and careers advancing.  Yet one key difference with CF is that the disease is almost always diagnosed very early in life and often carries implications for health or lack thereof from a very young age.  Being sick, anticipating eventual transplant, and respecting the fragile balance of life and death are part of the lifelong hand that CF patients are dealt. And while the diagnosis and prognosis of CF are hardly enviable, that experience is different from my own.

 

To be a thirty-something accustomed to, even identified by his activity level, first as an athlete and runner, then as a physical therapist and energetic father, it felt so unfair to lose my endurance, my hobbies, my activities and my identity little by painful little.  While the progression of my disease has been relatively slow, my completely unexpected and indefinitively diagnosed reality is a unique affliction.

 

In my quest to learn about and better appreciate my circumstances, I did find another companion on this rarely travelled and far less chosen road of mine.  The story of my new friend Joyce has striking similarities to my own: a thirty-something nurse practitioner, with a loving spouse and growing family, whose endurance suddenly and inexplicably began to decline a few years ago.  She passed through a similar gauntlet of diagnostic tests, medical center work-ups and insurance runs-around only to find herself listing for lung transplant earlier this year.  With a few emails and some cathartic conversation shared a couple weeks ago, I am fortunate to have found a kindred ally.  I encourage you to read Joyce’s blog, maybe buy one of her Donate Life t-shirts and certainly include her in your thoughts and prayers.

 

This certainly isn’t how would have chosen to “get there,” but I am ever grateful for the opportunity to matriculate alongside an inspiring cohort of life-learners and life-yearners.  
 

Nine Years

 
For less sickness and better health,
To far more good times than bad,
For numberless days yet to love, honor, and adore you.

Happy Anniversary to my sweet Eileen Marie.

Baby Prince George Alexander Louis of Cambridge Says