CF, Depression and Anxiety

[Timothy Bransford]

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 close and personal in North Africa.  I was a military attache working from the US Embassy at Khartoum, Sudan when it all came down.  When I arrived in Sudan I  was an elite army intelligence officer  at the top of my field.

When I left Sudan 14 months later, I was ravaged by raging fever, massive weight loss, and horrific hemoptysis.  Desperate medical air evacuation to Landstuhl Germany.  More fever, more weight loss, more horrific hemoptysis.  Using up my personal supply of emergency plasma.  Completely exhausted and starting to fade away.  No one can figure out why this is happening.  Maybe it’s Aids, maybe it’s some rare African disease, maybe  its TB…  Regardless of my efforts, I was unable to pull myself out of this nosedive into oblivion.  Complete loss of control of the situation, my environment, my future…  I knew this was the end.  I would not die a heroic death.  I would fade away to nothing in a hospital bed in Germany.

After a lucky and serendipitous long shot treatment that included Cipro for suspected TB (turns out  this was the silver bullete for my old friend pseudomonas aeruginosa), I began to inch back toward life.  It took half a year to be able walk up a flight of stairs without stopping half-way for breath.  I worked on my physical conditioning but I’m never going to be the same.  I lost my job because we just can’t have someone stationed on the frontier who might bleed out from his lungs.  34 years old and my entire life was upended.  6 months after I was medivaced to Germany a long shot sweat-chloride test revealed the real culprit.

So, it is no surprise that I ended up in ward 54 at Walter Reed Army Medical Center.  As Mel Brooks liked to call it, “a home for the very, very nervous”.  That was my  home and it was horrifying.  I was way more than nervous.  I was emotionally and mentally spent.  I had faced down all sorts of dangerous situations in my lifetime and survived relatively unscathed due to my “skill, resourcefulness and will-power”.  But, in the end, I was betrayed by my own body and this betrayal was devastating.  I could not coexist with this frailty.

It took several months of in-patient care and 3 months of out-patient therapy for me to start to forgive myself for my “weakness”.  I was able to stabilize with the help of Xanax and a good therapist, but I was never the same.  I lost my illusions of control, and I worked to accept my humanity and my frailty.  After a couple of years, I was only slightly troubled rather than a raging lunatic.

It has been a long walk back to balance.  But I’ve been emotionally rebuilding for the past 33 years (yep, I’m  about to hit 67 years).  And  everyday I fight the pull of depression.  Every morning I remind myself that this day is a gift.  A bonus.  And I try  to live each day with that thought.

 

[William]

What a story, Timothy! We’re glad to have you here with us. I’m also just trying to wrap my head around a person with CF being in the military.

[William]

Tim, I personally didn’t know any of that! I guess the chemicals within brains and cells that cause depression in people with CF do need to be studied more. So, before I can say that that definitely causes depression and anxiety, I would just say that the overall nature of living with a terminal illness that’s actively killing you causes depression. I’ll also speak for myself in this regard but I do notice when I’m on certain antibiotics that cause mental health side effects like mood swings, I really go through those side effects. I hate it, but at the same time, I do know that it’s fighting off whatever infection is going on in my body.

I wonder if the medicine we regularly take harms us negatively mentally as well.

[Timothy Bransford]

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.

[tim-blowfield]

I agree; the medicines taken will almost certainly have a profoundeffect. My thesis of ‘Intracellyte Electrolytes’ affecting organs and systems that are not just mucous membranes open an understanding of CF and the multiple co-morbidities seen in pwCF to greater understanding. It explains that Hypokalaemia may well be the result of abnormal levels of Potassium within the Adrenal cells, which are trying to reduce its levels. Similarly High K & Ca levels in heart muscle cells may lead to miss function.

Years ago in 1968 we had a severe drought in Victoria, Australia. Sheep were drinking quite saline water and had adjusted to it. The drought broke suddenly and fresh water was everywhere. The rapid change from saline to fresh water led to a lot of sheep showing neurological signs (staggering, ataxia, walking in circles, being unable to stand even some deaths) caused by the rapid change of salt in the brain cells. Neurological signs are reported in shipwrecked sailors who drank seawater. Changes in electrolytes in brain cells may be the reason some people starting Trikafta experience headaches as retention of salt has been reported.

More research is needed!

 

[William]

Hopefully we can get more research done Tim!

[tim-blowfield]

The study, “Assessing the impact of elexacaftor/tezacaftor/ivacaftor on anxiety & depression symptom scores in adults with Cystic Fibrosis,” was published in the Journal of Cystic Fibrosis. This paper is interesting and supports the need for further research. It does support the thesis that in CF the Faulty Chloride channel may be affecting more than just mucous thickness and mucous membranes. There is good reason for depression and anxiety in pwCF simply from the stress and trauma of suffering from CF but abnormal intracellular electrolytes (see my previous post) may also be a significant factor. More research is needed and I thank the authors of this study for their work.

[William]

I totally agree that it needs to be studied more, but so far, they’ve done a fantastic job.