In my experience, focused chest pain has always been an indicator of mucus blockage, infection, and ultimately, hemoptysis. I believe the conditions in my lungs impact the pleura and the result is pain sensation. I ran this by my CF doc and he agreed this could quite possibly be the mechanism that causes the “lung” pain.

Regardless of…

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Jenny,

Good to hear from you again.  Hope all  is well.

I wanted to respond to this  one with my history.  I was diagnosed with CF at 34 years age.  By 36, I was divorced.  I never used a dating app (way to techy for me).  Instead, I met someone while taking an evening class at the University.  She sat by me one day in class (total shock… Read more

William,

I agree  that the  medicines  we  take to combat  CF impact on our mental and emotional well-being.  For that reason,  we  need to remain vigilent to  those potentialities and get  help when they present in our daily lives.  My early warning system is my wife.  She is the front line  worker in  my world.

I don’t know about intracellular electrolytes but I do know this.

In my lifetime,  I’ve experienced many events that left me traumatized.  Nothing, however, compares to the trauma I experienced the first time I was slammed in the face by cystic fibrosis.

You see, I knew about my hemoptysis long before I knew I had CF.  I met hemostasis up… Read more

Hemoptysis.  Brought on by a lung  infection that just won’t die with oral antibiotics.  Usually, the hemoptysis is of a magnatude that I can’t put it off any longer.  At that point I’m told to go the ER and get inprocessed so  they can monitor and, ultimately, insert a PIIC line for IV antibiotics.  It is usually a 4 day stay in the… Read more

I’m quite sure I will never retire in the classic sense.  I have always needed a mission to be happy and fulfilled.  Fortunately, the need in our world is great and opportunities abound for someone who is willing to lend a hand.  The main difference is I won’t need to be paid for my labor.  My new mission will truly become a labor of… Read more

So much to be thankful for.  Just a few highlights:

In January, my beautiful mother passed.  After 95 years of vibrant life, I was by her bedside and was privileged to hold her hand as she slipped peacefully away.  During those moments, I felt her warm hand once again on my chest, calming my panic, and when she was finally gone her calmness… Read more

There was a time when I believed I would not see another day.  I was wonderfully  wrong.

So each night before I go to sleep, I offer a prayer of thanks for the gift of another day.  I  believe that maintaining a grateful heart is critical to living a positive life.

Regardless of the uncertainties, I  am ecstatic to grow older.

Jenny, I know this response  is a bit  late but I  thought it might be interesting to  discuss how we are  navigating the whole  Covid world now.  This is my experience.

 

I wear a mask whenever I feel the need.  I feel the need in the grocery store.  I feel the need in the movie theatre.  I feel the need in the restaurant (although that… Read more

Laura Lee,
I can so relate to your feelings. I was diagnosed with CF in my mid-30s. While my initial experience with CF was frightening and life-threatening, I survived that initial crisis. Yes, I had to change my lifestyle with the CF diagnosis, and I have had brushes with lung infections and hemoptysis over the years but, aside from that,… Read more

Growing up, I was “the sickly child”.  I was the youngest son packaged between 2 older sisters and 2 younger sisters.  I was always experiencing some sort of fever, cold, sniffle, flu, bronchitis, asthma, pneumonia…we did not know it was CF.  Through it all I soldiered on.  I played the trumpet in high school.  I excelled in football,… Read more

At age 34, I was diagnosed with CF.  For the previous 12 months I had fought a losing battle against lung infections that left me emaciated, struggling with fevers and experiencing repeated and severe hemoptysis.  Up to this point, I had seemed like a relatively healthy person.  So, I was shocked to learn the CF diagnosis and asked the doctors… Read more

Luisa.  You sound like a younger me because, if not for hemoptysis, I would hardly know I have cystic fibrosis.  Do I have PTSD as a result of the many episode of hemoptysis I’ve experienced over the years?  Probably, yes.

I do my best to prevent CF from dominating my world.  It mostly hovers like a malevolent shadow, a lingering cloud in my… Read more

As I see it, this entire discussion reduces down to personal responsibility for the choices we make.  If you fear a vaccine more than you fear being rejected for organ transplant that is your choice.  And the consequences of your choice are your responsibility.  The shortage of organs from doners when compared to the demand by dying people… Read more

Peter Sellers as “Chance the Gardener” directed by Hal Ashby.

 

CF would not be the central part of my story.  It is not the reveal.  The reveal is how fickle life can be and how tied we are to random encounters with time and place and other people.  These encounters can make us soar or they can make us crash regardless of how we try to… Read more

As much as I respect the medical profession, I do not worship at its feet.  Like most CF patients, I do my best to know my disease and how it impacts my health.  I advocate for myself.  If a doctor is unable to handle my micro-management then I find a new doctor.  Fortunately,  I live in Seattle and we have a major CF clinic at the University of… Read more

CF is such a broad spectrum.  I believe it has a massive footprint that that is still relatively unknown.  I’m lucky, it mostly impacts my lungs.  I seem relatively OK with the rest of my organs.  In fact, I’m pretty much a healthy person outside the FEV issue.

 

I come from a large family.  I have 6 siblings and I am the only child with… Read more

The looks I used to get during my CF clinic visits when I wore my N95 mask.  The freight I used to sense from the general public when I wore that mask outside the clinic.

 

Post-covid it’s a different story.

 

I’m comfortable with social distancing and mask wearing.  I’ve practiced this as much as possible for many years.  Covid just… Read more

I know the dilemma. Just title this little ditty “Achilles meets Icarus”.

My way of coping with the realities of CF in the workplace 26 years ago was to start my own business with the aim to create a more user-friendly work environment. I determined to be overt with all aspects of CF. As I hired employees, part of my interview process… Read more

Thank you for your kind commments.

This morning, like every morning, I was awakened by the stiletto paws of our cat Jaxx. He is a big boy, so when he stands on my stomach and speaks with his “feed me Seymour” meow, he cannot be ignored. Next to Jaxx is his sidekick, Marvin. Marv is also a big boy. However, his morning technique is to wail like a banshee while gently… Read more

Spirit animals are integral to my personal view of the world. Many people may write this off as fantastical and, possibly, delusional thinking. And they might be right. But, for me, the natural world and the spiritual world have merged into one world since childhood.
I believe that I do not have a specific spirit animal. However, I know that… Read more

Snow and mountains, or sand and sun… Fact is, I must have it all.

I spent my childhood on a small island in SE Alaska on the edge of The Misty Fjords. Pacific Ocean on one side, mountains rising in the back yard. Salmon, eagle, bear, raven, deer, ptarmigan, ancient cedars, towering sitka spruce, moss, muskeg…this was my playground.… Read more

Pre-CF diagnosis, I always believed that I alone controlled my destiny. Fate was just the consequence of my choices. This belief allowed me to function in high stress envronments and, for the most part, it held true. I also believed that a nuclear bomb could go off and I would emerge, shiney and new, from the dust cloud. Alive and… Read more