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Responsum Community Column

Reflections from the Trek — Big Ticket Items — Getting the Most Bang for Your Disease Management Buck

Reflections from the Trek — Big Ticket Items — Getting the Most Bang for Your Disease Management Buck

What are the “big ticket items” for best dealing with IPF? In his latest column, Stephen Berger discusses what he is learning on his journey with the disease.


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I recently listened to Thoughts and Motivations: Salute! My Visit with Kim Fredrickson! by Dr. Noah Greenspan.

In his tribute to Kim Fredrickson, Dr. Greenspan shared the following thoughts:

“What I try and do is I try and share information with you.  I try to share the most, the best information that I have collected from the most people, over the greatest amount of time, that I have seen have the greatest impact in a positive way on people’s lives.  I try to cut through the BS; that is just a waste of time, a waste of energy, a waste of money, etc., etc., etc.  To me, Ultimate Pulmonary Wellness encapsulates the five things that I think have a greater impact than anything else.  Those things are:

  1. Medical – Having the right medical team; having the right doctors; taking the right medication, and taking those medications properly
  2. Exercise
  3. Nutrition
  4. Stress, anxiety and depression management
  5. Prevention of infection

Those are the things that over and over and over again are the big-ticket items.

The thing I try and get you to realize is that if you win a shopping spree, OK, if you win a shopping spree to whatever store is the store of your choice, say Target, don’t go to the gum aisle.  Go to the television aisle.  Go to the things that have the high ticket value.  Go to the things that are going to add to your life significantly.”

I would propose an additional item: Pursuing a purpose bigger than you.

We have to have a reason that motivates us to fight the battle.  Life cannot be all about me.  That runs out of gas very quickly.  Even if it doesn’t run out of gas, it leads to all kinds of bad outcomes.  The people I admire are working hard to serve a higher calling.  If you think about the people you know and admire, I think you will find that is true in your experience, as well.  This was true of Kim Fredrickson and I see it in Noah Greenspan.

The challenge we all face is deciding where our time and energy are best invested today.  The answer is dynamic.  It changes day-to-day and even minute-to-minute.  My focus was originally on making sure I had the help of the right medical team, which is the first item on Dr. Greenspan’s list.  I could keep working on that and refining the solution but, pretty soon, I could get a much better return from my time and energy by investing them in other areas.

It is hard to change focus.  It is especially hard to move from something we are starting to do well to something we might not have the skills to improve, though it needs our attention.  We are all creatures of habit and old habits, good or bad, change slowly.  We need to be brutally honest with ourselves about this.  We need to find the courage to step up to a challenge we may not have the skills to succeed at.

We need to build a network of people that will help us to make good decisions and recognize when it is time to change focus.  We also need people that can help us to improve our skills.  Getting informed feedback and having people we can call on when we don’t have the skills we need is critical.  After I first drafted this column, I signed up for Dr. Greenspan’s Ultimate Pulmonary Wellness online course.  A little over half way through, I find it is already proving a very good decision.

We will revisit the big six in future columns.   We will keep talking about self-management best practices because this is a very difficult assignment for all of us—one of the most difficult challenges we face.

 

(This article reflects the experiences and personal opinions of its author. The Pulmonary Fibrosis Foundation has neither reviewed nor vetted its content for accuracy.)

About the Author: Stephen Berger has been a Responsum member since 2018. He is an engineer who focuses on developing consensus solutions that apply technology to societal problems, such as wireless in healthcare and disability access.  He also has a Master of Theology degree from Dallas Theological Seminary, is a member of the Evangelical Theological Society, and was a volunteer hospital chaplain.  A Responsum patient advisor diagnosed with IPF in 2017, Stephen thinks a lot about faith, hope, values, and how to navigate the complex challenges we all face with grace, integrity and authenticity.

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