. . .because my voice has also been absent from the offline world.
Yes, the final gift to me from LungMutiny2010 is a case of inhaled corticosteroid dysphonia – and another opportunity to cultivate compassion for those with chronic illnesses and permanent loss of physiological functioning.
Here’s a recap: After a three month battle with pneumonia, I returned to the university as much as I could about six weeks ago. I say “as much as I could” because, once again, I was amazed by how little my body would let me do after being confined to bed for ten weeks.
Some days I’d just be doing great and, without warning, hit a wall of complete exhaustion – the kind that even a triple-venti, quadruple-espresso shot beverage couldn’t remedy. Other days I’d wonder why the soles of my feet were red and burning – I had to remind myself that my walk across campus the preceding day was a little much on feet that hadn’t walked, much less seen shoes, for most of the year.
But even as my stamina is on an upward trajectory, I still had laryngitis as my pulmonary symptoms resolved. I kept waiting for it to improve as I tried to talk through the hoarseness.
Then three weeks ago, I lost my voice to all but a whisper.
Fortunately, one of our local academic medical centers maintains a voice care clinic out of their Division of Otolaryngology. I was able to get in within a week to see one of the senior docs in the group and an outstanding team of nurse practitioners and speech pathologists. After lengthy questioning about my allergy/asthma history and the course of my illness to date, they anesthetized my nasal passages with tetracaine spray and viewed my vocal cords with a strobscopic laryngoscope.
The technology was awesome to watch in the recorded video but confirmed that my vocal cords were bright pinkish-red and swollen with irregular edges. “That’s about as bad as we see them around here,” was the quote from my doc as he pointed to the monitor. I forgot to ask if there was a way for me to download some stills to show you here.
It seems likely that the large amounts of oral corticosteroids followed by inhaled steroids did a great job helping my lungs heal but set up my vocal cords for a Candida infection (fungal), steroid myopathy, or some combination thereof.
Yes, it’s a major bummer to have what would be called an iatrogenic adverse effect but without these steroids, I’d still be on my back in bed. I make this point because no drug possesses absolute safety. All drugs have a some spectrum of benefits and risks of side effects – the setting in which they are used determines whether those benefits outweigh the risks. I would take these steroids again in a heartbeat. Remember, those who have followed this saga: I was coughing so hard that I was passing out (cough syncope) and I believe I either cracked a rib or tore a tendon from the months of hacking.
I did some reading after another colleague told me of the prevalence of this inhaled steroid side effect. Inhaled corticosteroid dysphonia was first widely described in the literature in 1983 by a group from East Birmingham Hospital in England. In recent years, this adverse reaction seems to have increased in incidence with the introduction of dry power inhalers, usually in the form of the longer-lasting steroid fluticasone.
This 2004 Laryngoscope article from the University of Pennsylvania describes the problem and the pathology quite well.
So, I’ve been ordered to a few things that include stopping the inhaler for the time being – something I can do since my lungs have improved so much. The bigger challenge is to steer clear of any irritants or allergens – a tall task in springtime in North Carolina. I’ve actually been directed to stay home and work on the computer but that’s impossible given the number of thesis defenses and search committee interviews currently ongoing.
I’ve also been directed to a strategy to lower the viscosity of nasal and pulmonary secretions by drinking about a gallon of water each day – about six, 20 oz bottles of water (I use a big cup that I refill with filtered water to save the plastic from going into the landfill). That’s about 3780 mL/day for non-US readers. An additional approach to minimize secretions and purge allergens has been to use nasal irrigation daily with a warm mixture of sodium chloride and sodium bicarbonate.
But the greatest challenge has been to follow the edict to completely rest my voice for two weeks – not even whisper.
For the first few days, I walked around with a pad of paper and an introductory statement about why I couldn’t talk. But when people are standing over you waiting for you to finish writing, it becomes much faster to just whisper.
Yes, I know. I’m not supposed to whisper. If I could have stayed home and done all my work from there, I would have. I even had a nice letter from my doc to give to my boss and the HR department ordering me to work from home.
What’s funny is that when you start to whisper, other people whisper back to you. Even when they know you are whispering because of voice restrictions, the automatic response is to whisper in reply.
Much of my communication with others has been via writing – and I’ve been writing a lot. That seems to be one reason that I haven’t been blogging. Writing takes longer than picking up the phone so I’ve seemed to have very little discretionary time lately to write for fun.
But I’ve wanted to write – yes, about science – but also about this additional opportunity to think about something we take so much for granted: the ability to speak. I am lucky. My voice will come back. I’ve though a great deal about how fortunate I am.
What also came to mind was the now-famous Esquire article I read about movie critic Roger Ebert during the worst of my pneumonia in mid-February.
Ebert lost his voice permanently about four years ago following surgeries for thyroid cancer that had metastasized to his now-removed lower jaw, plus radiation treatments that caused a near-fatal breach of his carotid artery. The Esquire article by Chris Jones is brilliant in how it captures the man and his wife Chaz as their life has transitioned. While it is clear that Ebert misses the ability to speak, he deflects any pity noting how happy he is and how his writing has exploded in the past few years, not just in number of words but in the magnitude of attention to his work.
His online journal – a blog at the Chicago Sun-Times – counted 93 million hits last year and his individual posts can garner hundreds of comments.
Many folks who’ve lost their voices don’t have the options Ebert has, such as working with companies on voice synthesis, particularly in mining his years of television and DVD shows to give his computer the ability to make him sound like Ebert again.
Most folks who lost their voices due to cancer or other diseases don’t have the option I have – to whisper – or to hope that their voice will come back in a few weeks or months.
This short time without a voice has taught me just how valuable it is, just as months with pneumonia have taught me how important good health is. I never understood when my elders would say, “Well, at least you have your health.” This year has helped me understand that much better.
I get scoped again next Friday to see how things are doing. Hopefully I’ll be able to get back to some more blogging in the meantime.
I’ve missed y’all, so I hope that each of you are well in your parts of the world.