A wild journey with mysteries, battles, despair and hope.
Author: Debbie Alves
Since I started my writing career practically with a sharpened reed and clay tablet, this is a return, but to a universe of pixels. Interested in medical mysteries? Rare conditions, severe asthma, and its complications? No telling what you might discover -- come along!
WE WON! All it took was starting to have an asthma attack while talking to the acting manager of my apartment complex in the office Friday afternoon, after being exposed for about 1 minute. As we talked about the problem (I hadn’t complained about the previous system – but I explained that whatever that scent was had been a fairly routine trigger, whereas this was much more aggressive) I began wheezing noticeably, and had to sit down. Within about two minutes, the wheezing was serious enough to interfere with my ability to speak, and I was using my rescue inhaler for the second time.
I told her I had to get upstairs to use my nebulizer and take some medication. She emailed me a few minutes later saying she had been unable to dismantle the box mounted on the wall, so beat it to death with the handle of a mop, and had them put the pieces into several bags and place it outdoors.
This afternoon she said they held a meeting at the management’s central office and decided to have them removed permanently from all the buildings they manage.
VICTORY FOR THE LUNGS!!!
I still think there needs to be a class-action lawsuit to force the companies (this one was Aire-Master) to STOP!
Hooray!!
Has anyone else noticed how we have been swamped with “scents” in the past few years? I thought it was bad when I had to hyperventilate and then
Photo by James Lee on Unsplash
rush past the cosmetic departments in department stores, but now I can’t even find garbage bags without “scents” that make me sneeze and cough! Not one brand!
Now buildings, from hotels and office buildings to apartment buildings (including mine – we are currently having a tussle over it) are falling for slick sales people telling them what they really need to put their ultimate brand on something is a particular “scent.” (At first I thought it was just the chi-chi hotels and resort-type condos around town. I was wrong.)
[Every time I go in or out of the single accessible entrance to my building (and also the only one to the mailboxes), I have to use my rescue inhaler twice and get through it as quickly as possible. This also means I can’t use the gym any longer. Can you tell I’m pissed??]
The lung rebellion
I’ve been on a campaign in recent years to persuade drivers for Uber and Lyft around DC to STOP with the damn chemical “air fresheners.”
I have explained to them patiently that the chemicals are:
1. not safe to be inhaled, especially in enclosed areas and when those enclosed areas get heated up by the sun during the day;
2. have never been tested for safety on humans -and aren’t required to be because of the lackadaisical approach our country takes to commerce (laissez-faire capitalism at its umm … best?); and
3. inhalation of “air fresheners” and similar products have been linked to cancer, heart disease, and can trigger asthma attacks virtually immediately in those who are particularly sensitive (like me).
So why do it? Why spend upwards of $10 a month on chemicals which don’t really “remove” unpleasant odors, but merely deaden your ability to smell them temporarily? And do so while causing you serious potential harm?
Because they are afraid to repel a rider with the smells left by a previous passenger’s leaky shopping bag, or cooked cabbage and other smells from his leftover dinner last night that he forgot to take into the kitchen.
True fresheners
Is there an alternative? Absolutely. Would I bring it up if there weren’t?
Single best air freshener is – fresh air. Open the windows. Drive with them open for a bit. (Thoroughly clean that air conditioner, replace the filter and clean and disinfect the vents to remove any mold -if you don’t normally do that in your car. Huge source of smells.)
Next best, something my grandmother and mom did – so I do, too: Use baking soda. Take a plastic take-out food container with a tight-fitting lid, put a generous amount of baking soda in the bottom, add a few drops of whichever oil you like the best. (Oils will last the longest.) Punch a few holes in the lid, fasten it on and keep it in the car. Refresh it periodically with more oil. After a particularly odoriferous trip, pop the lid off and leave it on the front seat overnight. In the morning the odors should be gone.
Photo by J Williams on Unsplash
Food-grade flavoring oil (not perfume, not massage oil, not incense). FOOD! ALL-NATURAL! This means real cinnamon oil, lemon oil, vanilla extract.
I have put a great deal of thought into this, but it is subject to change. Let me know if you have anything to add … (Note that hierarchies of need go from the greatest need – top – to the lowest need. And people are not included – this is about inanimate things and senses.)
1. Breathing without constant struggle and constriction
2. Manageable pain
3. Sight
4. Sunshine and natural light
5. Air-conditioning
6. Fresh fruit and vegetables that are truly ripe, and really juicy limes
Obituary for the composer from the Washington Post, July 7, 2019, by Chris Roberts, Post pop music critic. Introduction by Debbie Alves.
João Gilberto gave us more than the bossa nova — he gave voice to the language souls speak in whispers. If you don’t know his music, find some — I promise at some point in your life you will realize his incredible gift. Descanse com os anjos agora, você fala a língua deles há tanto tempo que não pode ser estranho.
(Yes, I know this has nothing whatsoever to do with asthma or my health odyssey. Or maybe it does, if we think about it as one of the things that can help us get through tough times. Or celebrate just being alive, or a beautiful day.)
João Gilberto died Saturday at age 88. (Hulton Archive/Getty Images)
By Chris Richards
Pop music critic
July 7, 2019 at 12:10 PM
There’s no such thing as perfect music. We’re reminded of that fact whenever someone gets close. João Gilberto, the bossa nova mapmaker who died on Saturday in Rio de Janeiro at 88, spent the greatest years of his musical life right there, singing softly to the edge.
His voice was one of the most intimate sounds of the 20th century — more melodic than a sigh, more rhythmic than chitchat, only just barely. Every syllable that appeared on his lips carried an air of effortlessness, but Gilberto had worked hard to locate that sacred place where a human breath becomes music. It gave his ballads their focus, their circumspection, their secret rigor. Were it not for Gilberto’s mindfulness, the big-time sensuality of bossa nova probably would have hit this planet like a satin pillow. Instead, the sound went off like a noiseless bomb in Brazil, changing the nation’s musical identity in an overnight kind of way. Over here in the United States, bossa nova became a full-blown phenomenon with the runaway success of Gilberto’s 1962 album with jazz saxophonist Stan Getz.
But in the years that followed, Gilberto’s bossa nova cooled from a craze into a mystery. How could such clean, legible music feel so utterly unknowable? Fellow bossa nova architect Antônio Carlos Jobim once reportedly explained that the fundamental grace of a João Gilberto performance exists in the tension between mouth and fingertips. “He was pulling the guitar in one way and singing the other way,” Jobim said. “It created a third thing that was profound.”
Go back and listen to Gilberto sing his signature lullaby “Chega de Saudade” — in 1959, in 2000, or anytime in between — and that profound third force has the quiet power of nature itself. It’s as if this music is bound by the same tiny, subatomic force that prevents our material reality from floating apart.
Gilberto’s most astonishing album landed during that cooling period, a self-titled thing from 1973 that found him gently singing the songs of his most extroverted followers, including Caetano Veloso and Gilberto Gil. Even better were Gilberto’s original compositions, largely constructed from nonverbal hums and mumbles that seemed to be expounding the meaning of life. With these songs, the maestro figured out how to freight the breeze with an impossible amount of information. Instead of sweet nothings, sweet everything.
Here in the 21st century, we’re plugging little ear buds into our heads, inviting our music to shake the air inside of us. Intimacy feels like music’s most exciting frontier. Gilberto has already been there. The music he leaves behind becomes a prophecy, a map, a guiding force that we’re still only beginning to understand.
This week was the first anniversary of my treatment with Fasenra, my miracle biologic drug. My severe asthma had been increasingly triggered by eosinophils, special white blood cells my bone marrow had made in great excess and that were attacking — and destroying — parts of my body. Fasenra has stopped the production of the eosinophils completely. No asthma in a year. No more e-emphysema. And completely unforeseen reductions in numerous other medical conditions, probably related to the elimination of the eos-fueled inflammation. For the first time in a decade, I wake every day feeling a little better, a little bit stronger. No cure — no reversal of the damage. But I think it’s the closest I’ll ever come to a miracle.
Today is my first anniversary …
No asthma.
No eosinophils flooding my blood …
Attacking my lungs and other organs.
None. Zip. Zero. Nada.
In some ways, it’s been a little hard to believe.
In September 2012, I began treatment with my first biologic, Xolair, for severe allergies. Ever since the toxic mold exposure in the mid-’90s, my allergies were less responsive to medications. Allergy shots had never helped much. But it was the increasing severity and length of the asthma attacks triggered by allergies that were most concerning.
I got into a Xolair trial and slowly, we saw improvement. By the next spring, I realized that some of my early spring allergies to trees around DC were less severe. And that continued to be the case, season after season.
After a couple of years, we realized my allergy-triggered asthma had been reduced to a few times a year instead of every couple of months. Then one day, I was complaining about nosebleeds, and my allergist said, “Maybe you should stop the daily Zyrtec.” That had never even crossed my mind. Purposely skip Zyrtec? Huh. Okayyyy.
Xolair and sugar snap peas
So I did. And what do you know? I didn’t need it for months at a time. I had to restart it for this past spring, but expect to be able to stop it by August. (I’ve been allergic to peas all my life, but accidentally ate some sugar snap peas recently, thinking they were some sort of green bean – except as sweet as candy! No reaction, but promised Dr. VL I won’t go out of my way to eat anymore. Interesting, and at least I won’t have to immediately take Benedryl if a single stray green pea slips past in a bite of a casserole.)
Taking the allergy-triggers out of my asthma equation was one thing.
The infection-trigger is huge – and the only way to really beat that is to stay away from crowds and potential sources of infection. The reality is I have a crappy immune system. All the steroids have undermined whatever natural immune resilience I ever had. Since I no longer can work, and rarely travel on mass transit during peak times, I’m much less likely to be exposed.
I get my flu shots as soon as they are available in the community, and every other vaccination possible. And I don’t travel during peak holiday seasons. When I do travel, I wear a mask and disposable gloves. I wipe the tray table, handles on luggage, doors, even seat covers, and armrests with rubbing alcohol wipes.
Avoiding carriers like they have plague
The big thing is controlling my exposure, frequently secondary, through friends or family members who don’t understand that when I say I have to stay away from anyone who might be gettingsick or carrying germs from someone else, I mean that literally.
People are so accustomed to ignoring the sniffles and constant colds of children, for instance, or their own colds, that they don’t realize that the common cold is a potentially deadly trigger of acute asthma attacks, especially in the autumn and winter. Luckily, I’ve managed to keep from being infected the past couple of years (but not without causing some hard feelings, I’m afraid).
So we’d made progress with allergic and infection triggers. Exercise can be a trigger – so I’m careful and use my rescue inhaler before any, and am prepared for more. Unlike most asthmatics, I have never been cold-weather triggered – in fact, for me it’s the opposite! I am triggered by heat and humidity, but always feel much better when it’s very cold. I think part of it is because there’s no pollen or mold outdoors then, and I avoid indoor areas where there might be any mold or mildew. But for whatever reason, my lungs feel great during snowy winters.
But there seemed to be something else, something we didn’t recognize, triggering my asthma attacks. And they were getting much worse. And coming a lot faster.
Learning what eos was destroying
Atypical Hypereosinophilic Syndrome is a rare blood condition, characterized by extremely high levels of eosinophils in the blood. (Try saying it quickly, much less spelling it, and you’ll get why we call the cells “eos” and the condition “HES.”) Eos, the special white blood cells my body decided to use to attack itself, also is a major complication for my severe asthma, and now has caused me to develop emphysema as well.
From the first diagnosis in 2012 until last year, we knew my HES was bad, that it was attacking parts of my body instead of the usual parasites or cancer. But not what it was attacking. Until last summer, when we found that the eos had irreparably damaged my lungs. I’d known that was a strong possibility. Still, my reaction was to want to drive my foot through the wall, or pitch an all-out, full-bore hissy fit. I refrained. But it was a close call. Because there’s no way to repair the cells killed by eos.
I watched my grandfather die of emphysema in the 1970s, slowly and in great pain. It’s still a horrific way to die even though treatments have improved. But I guarantee it won’t be the way I die.
As a result, finding something to stop the production of eos was critical, every bit as critical as stopping the asthma attacks.
The biologic duo
First, we had tried adding Nucala. That combo helped prevent asthma for nine months but did nothing to reduce the eos. And it also allowed the zoster virus (leftover from childhood chicken pox) to trigger corneal ulcers that took more than four months to heal.
So the Nucala was stopped. While we waited for it to clear my body, I discussed Fasenra with my various specialists. The only one who was enthusiastic was my hematologist-oncologist. He said he and his colleagues were used to trying scary new drugs as last resorts – an approach I related to.
Four others were cautious about it, a little nervous about the gamble. My allergist was the one I really needed to persuade. Ultimately I did, by telling her that I was willing to try it for three months, the initial treatment period, and if we didn’t see at least a 25% reduction in eos, I’d stop it and I’d go back to Nucala, even if it meant a loss of my eyesight. (Breathing tops Sight, in the Alves Hierarchy of Needs.)
So we added Fasenra to my Xolair injections, a doubling of biologics (at the recommendation of the NIH/global expert on HES, Dr. Amy Klion). And we watched and waited.
A year ago today was the first injection.
N0w biologics are the drugs you take when you are gambling your life … because that’s what you are doing.
They are last-ditch drugs. Cutting-edge science has thrown out the old formulas for creating drugs to treat some of the most intransigent conditions, like the most severe forms of asthma. But the trade-off is that at any time you can have an anaphylactic reaction, usually fatal.
AT.ANY.TIME. FATAL.
It also is unbelievably expensive, although the price has fallen considerably in the past 18 months, to about $60,000/year now.
If Fasenra hadn’t worked, there was nothing else for me to try.
Zeroing out eos
That first injection was followed with a blood test a week later. We hoped my eos level would have dropped by 25%. It was zero. We thought it was a strange fluke. Next month, also zero. And I was slowly starting to feel better, a little stronger.
Third month, third zero. We were stunned but thought maybe it would rebound when the maintenance dosage dropped. Except it didn’t. Every blood test, every time, has been zero.
Photo by Yuiizaa September on Unsplash
In January of this year, although I needed a lot of help before, during and after I had a small dinner party for my brother Bill when he visited. It had been years since I’d been able to do something that I once enjoyed doing so much. I created a special Mexican mole for him (Bill has his own food allergies, just luckily not so bad) and my DC family. Seeing them all talking and laughing around my table, eating off my grandmother’s china – that was something I had thought I’d never be able to do again.
It took a lot of planning, early preparations and a week+ of recovery. But I was gaining strength so quickly that by my May birthday, my physical therapist (the incredible Joe S.) agreed to let me have the summer off PT, to try on my own.
Every single day for the past year I have woken up feeling a little better. Not jump-out-of-bed-and-run-a-marathon better. Still, I’m recalling what it felt like to wake up in the morning and look forward to accomplishing something during the day. And not wake bracing myself for a day of clenching my jaw and bracing for exhaustion and pain.
To dance at a November wedding
It’s been many years since I’ve been able to dance. But a dear friend is marrying in November, and I’m hoping to be able to dance at her wedding. To a slow song, with a strong partner’s arm around me. But to DANCE!
So thanks, Fasenra and Xolair! Keep it up and I’ll post a photo of me dancing at the wedding.
In the meantime, let’s hear it for researchers who try a new approach, doctors who sometimes take a calculated risk, and to the family and friends who stand with me cheering!
Today is my first anniversary …
