. . .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.
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Still holding a good thought for you, brother, and even though things still sound rough it appears you're rounding the far and turn heading for home. Here's hoping.
I would suggest that you try a filter mask. If not when around people, they cause issues as people think you or they are infectious, then at least when you sleep and around the house.
A good N-95 with an exhaust valve, about $7 each, is what you want. Trust me, the exhaust valve makes wearing one much more comfortable. Far less of that confined, choking feel of re-breathing your own breath. The extra cost is well worth it. They are available at most hardware stores, in the paint section, and online. 3M makes a nice one but my favorite is Mouldex. Look for an extra flap for a better nose seal and two fairly substantial bands to hold it to the face.
In pollen and mold season, and for blocking dust and dander, such a simple mask can make a big difference. Without side effects and at a quite reasonable cost. A friend with asthma suffers when it is pollen season and has to use a powerful mix of drugs to get by. Wearing the mask about twelve hours a day, home from work and when sleeping, she has been able to trim her use of powerful drugs and avoid their side effects.
@scribbler - your kind words here and elsewhere are most appreciated, not to mention your last few fabulous entries at Behind the Stick!
@Art - very good idea. I've been using a regular 3M N95 mask around the yard but hadn't known about the ones with an exhaust valve. I am intoxicated by our exploding honeysuckles but I know it's bad for me.
This (The complete loss of voice, not the pneumonia) has happened to me twice in the past three years. Apparently every assault on my upper respiratory system is now to be followed by laryngitis. And like you, I lecture for a living. (Also have two small children). My sympathies are with you. STOP WHISPERING! WHISPERING IS WORSE THAN TALKING! (Sorry about yelling at you there.)
So sorry to hear about this new complication. I use nasal irrigation during pollen season too... but my troubles are only about 1 percent of yours... Wishing you a speedy (and well-informed) recovery!
May this be the end of this saga. Sending good thoughts your way. When I was (finally) recovering from meningitis, I was amazed at how life's little pleasures came back to me. The fact that I could walk! To work! In the sunshine! was one of those moments. It was a horribly slow recovery, and even on my worst allergy days, I know it's not anything like that was and feel grateful. You hang in there. And whether you have to wear a mask outside, rejoice that you're outside. And upright!
Yuck, Abel, I'm sorry to hear it. I hope the two weeks of silence get your voice back in order.
Glad to hear you're feeling better, Abel. I know it's frustrating, but your voice will come back in good time. Hang in there :)
Good to see a post from you, Abel. Sorry to hear that LungMutiny continues. Wishing you a speedy recovery!
Sending healthy thoughts your way.
Glad to hear you're on the mend. Interesting that you've been directed to consume lots of fluids. That's advice pharmacists routinely give to patients with colds and flu, I but never thought it was backed by any decent evidence. I see little downside though, and it often helps persuade patients into putting the bottle of (ineffective) expectorant back on the shelf.
Hope you start feeling better Pharmboy. I still haven't backtracked to read your old posts, but I've been linked to your site since your post about your father. Just one question: What's that perverted looking blog in the background of that photo??? Looks like some kind of fan dedication site to a bearded Wayne Newton (good natured teasing there).
Geez Abel, what a run you've had. Glad you're getting back on your feet again though.
What you need is a Steven Hawking type voice synthesiser, with preprogrammed phrases in it. I wonder if you can get one with a "Dalek" accent?
I regularly lose my voice for 3-5 days when I have a cold - comes from a time when I taught an intensive course for a week despite a bad cold and no voice to speak of. Not good with two kids.
Two weeks though - WHOA! That's tough.
Incidentally, the guy who did Roger Ebert's new voice is a colleague of mine. At our research group, we do a lot of work on speaker adaptation, so that folks without the luxury of hundreds of hours of recordings will still be able to get a voice that sounds like them. Other colleagues recently recorded the voice of a person with motor neuron disease so that the computer can speak like him once he's lost his ability to speak.
If I were you, I'd come clean with your docs and ask them for a way of speaking without straining your voice too much if you DO need to say something. Good breath support and good posture will help a lot.
I suggest you add a few mM/L NaNO2 (sodium nitrite) to the solution you are irrigating with. Nitrite is a normal consituent of saliva (nitrate in saliva is reduced to nitrite by commensal bacteria on the tongue, ~1 mM/L) and that nitrite is an important part of the control of infection in the mouth and gut. The nasal passages also produce NO (when stagnant the end NO concentration is about 20 ppm).
Don't be too quick to blame the steroids - I had 3 or 4 weeks of laryngitis after my bout with pneumonia earlier this year and I did NOT have any steroids - just Levaquin, Mucinex DM and Tessalon Perles. I wonder what % of people get laryngitis with or right after pneumonia?
@Tamara, DeLene, k8, C.E., PiT, biochem belle, Samantha, Scott, Ted, Prof Musgrave, perceval, daedelus2u, and Regular Reader: Thank you so much for the kind words and suggestions. Yes, I know that whispering is just as bad as speaking. I'm headed back to the otolaryngologist on Friday so I'll be sure to ask what I should do when speaking is unavoidable. I'm back under the weather with a sore throat and bad sinuses today so that's not helping.
k8, indeed, I am counting my blessings.
@Ian and perceval: Fortunately, I'm not so bad as to need a voice synthesizer but it sounds like I now know where to go for help. And Ian, I've got a lot of fodder for my next series of pharmacology lectures!
I'm so glad to read that you're back on your feet again. I know the whole "two steps forward, one step back" process can be frustrating, but it's good that you're headed in the right direction.
I'm glad you pointed out the risk/benefit issue with drug side effects. Patients can run into problems on both sides of this issue - both not getting enough info about potential side effects from their doctors, or having their doctors not understand why the risks might be worth the benefits in a particular situation. In both cases, it's important for doctors and patients to feel like they have enough time during visits to discuss individual situations, but that's one thing that's lacking in a lot of medical encounters these days.
In any case, I hope your voice comes back soon!
Liz, I am now officially emitting scratchy sounds that are the best in four months! As I said, even if I knew I'd get this side effect, from the drugs or whatever, I wouldn't have done anything differently. Today's orange ozone alert day did help my lungs but they have been otherwise excellent as of late.
I had to re-read the comment by Ted K #12 - that's a world-class website in the background! I've been called many things, far worse, but I don't believe I've ever been mistaken for Wayne Newton.
daedalus2u: I don't trust any NaNO2 that I'd get from my lab. Is it available in food grade from any supplier you know? It must be since it's used so widely in cured meats. Perhaps I should look at one of my favorite Polish kielbasa vendors.
Abel, for topical stuff, for myself, for short periods of time, I would consider using lab grade NaNO2 (reagent from a new bottle, but wouldn't tell anyone because they would get upset, but I wouldn't let anyone else do that). The likely impurities are NaNO3 which is harmless. A little NaHCO3 would precipitate any heavy metals as carbonates. The only other bad actor I can think of would be perchlorate which I don't think would be absorbed topically, and if your iodine status is ok, it shouldn't be much of a problem.
The unknown is are there any organic nitroso compounds in it. It is hard to imagine how they would get there, but who knows. Amines from the atmosphere maybe? Amines from ion exchange resins used in manufacture? Topically in small quantities I don't think there is much risk. There are lots of natural nitroso compounds in physiology. Nitrite on the skin (pH ~4) is going to produce nitrosating conditions (free NO2 which I have smelled from my biofilm). Saliva has been measured at 2 mM/L nitrite.
NaNO2 by injection is used as an antidote for cyanide poisoning, so a pharmaceutical grade is available. A cyanide treatment kit has two vials of 300 mg each, but a cyanide treatment kit is pricey and has a lot of stuff you don't need (but they have a 2 year shelf-life so there might be some expired ones around).
There is food grade NaNO2 available. But direct from suppliers the container size is pretty big. I think I would trust reagent grade from Sigma more than I would trust food grade from a mom-and-pop curing salt repackager. Most of the small quantity suppliers only sell mixed curing salts with ~6% NaNO2 (and dyed red to distinguish it from plain salt).
What I use is "natural" (and therefore completely wholesome ;) nitrite produced by my bacteria growing in culture. I used mostly USP or food grade chemicals to make up the media, but because the bacteria grew, there couldn't be much of anything toxic in it. I would be happy to send you some. Send me mailing address by email. Home address is probably better.
The Spouse was nodding as I read her this post. She's warned me before about taking my Advair without washing my mouth out and/or gargling with vinegar and water after taking my med.
You're lucky you didn't get a whopping case of thrush on your tongue to go with the dysphonia.
Hope you feel better soon, and yes! don't whisper.