Three years of a slow blossoming miracle …

Or so it seems to me.

Three years and one month ago this week, the last week of June 2018, I began taking the last biologic medication available for my HyperEosinophilic Syndrome (HES) and the severe, almost impossible to control, asthma it triggered, or the emphysema it had caused.

There were no drugs left in the medicine cabinet for me. If this one, called benralizumab or Fasenra, didn’t work … well, the eosinophils (the special white blood cells) would continue their crazy over-production and go right on destroying my organs instead of fighting infections or parasites. Until they finished destroying me. There wasn’t much fight left in me after all these years (more than 20 before it became really serious, and more than 30 since I had known there was something wrong, but no doctor could diagnose it).

In 2018, the doctor I was closest to, the allergist who had saved my life so far and figured all this insanity out over the previous six years, was worried. Dr. VL was concerned that I would have one of the sudden fatal reactions to the medication.

I had read everything I could find on the medication, including on adverse reactions. My close friend, a physician and pharmaceutical researcher, evaluated it. My hematologist-oncologist also went through the literature. I asked all my other doctors to weigh in.

But ultimately, it was my choice.

I told Dr. VL I was ready to gamble. My HES and the related problems it caused were so severe that any improvement in my quality of life was worth risking death from anaphylaxis or other major side effects.

I had virtually no quality of life left. I only could see managing a few more battles, certainly not another war. There also wasn’t much incentive to keep struggling, while I only continued to experience so much pain and disability.

The initial therapy was one injection per month for three months. I told her that I wanted to try it and if, at the end of the three months, my eos level was not improved by at least 25%, or if I developed severe side effects at any time that outweighed any benefits during the course, I would immediately stop it.

If I did show improvement after that first 90 days, I’d go on a maintenance dosage of one injection every eight weeks … for the rest of my life, however long that may be.

But I was one of the few patients for whom it worked perfectly. Within 10 days of the first injection, my eos level was zero — normal, and it has remained there ever since.

THREE YEARS OF ZERO EOS!

And not only has my asthma improved, but many of the other problems that constrained every aspect of my life have gradually been improving, too.

There is no cure. There is always a chance the drug will stop working. Or that I will suddenly have a deadly reaction to it, without warning.

It’s also possible that Medicare will stop covering this obscenely expensive medication, or that it will interact negatively with something else.

But for now, all I can say is:

THANK YOU, ASTRAZENECA!

And thank you to all the researchers and all the patients who volunteered to participate in studies to make drugs like this possible for patients like me.

(BTW, I say thanks by participating in pretty much every study I’m asked to, and will for the rest of my life. I speak to medical students, and work with residents and interns and fellows, hoping they learn from treating me. And when I die, George Washington University physicians and the medical school will get what’s left to see what else they can learn — as partial thanks for taking such great care of me these past 20 years.)

Changes can be so hard …

A lot’s been going on. I had minor surgery (but with general anesthesia, which I LOATHE), and successfully refused prophylactic prescriptions for steroids and antibiotics (nothing feels quite as great as knowing what your alternatives are, standing up for them, and being right). But my chronic sinus infection decided this would be a great time to mount a surge – and since ragweed is blooming around DC, I was fairly miserable for a week. But I’m largely back to normal.

Then Monday my mail delivered a real kick in the gut: my allergist, truthfully the doctor who knows my body the best, and who was the one who figured out about the eosinophilia, and later the HyperEosinophilic Syndrome, is leaving MFA.

I had only slightly kidded over the years when I said if she ever left, or they moved, she’d need to get an in-law room over the garage, because I was going, too!

When you’ve spent YEARS trying to get real problems to be seen and diagnosed and treated by doctors, unsuccessfully, and finally one doctor gets it – GETS YOU! – knows there’s something else wrong and fights for you for years … well, you don’t just appreciate them. You aren’t just grateful.

Dr. VL truly saved my life.

Holding that formal letter from the allergy department chairman stating that she’d be leaving the practice at the end of November made my stomach do those slightly sick flips. My first impulse was to call and ask where she was going (I knew she’d be staying in the area) and to begin to switch to whatever practice she’s joining.

But then I stopped and thought about it.

I’m a DC Medicare/Medicaid patient – that means MFA loses money on me every time one of my team sees me. In all likelihood, she’s going to a suburban practice – possibly a private practice.

And she’s taught me so much over the years. She’s never told me NOT to take steroids, but she’s watched me struggle for months to overcome the tremendous costs just a few doses of them impose on me. And she taught me to think about alternatives.

The reason the surgeon wanted me to take the steroids was to reduce the swelling in my mouth/throat. My alternative that I have on hand is prescription strength ibuprofen, which I could safely take for three or four days, and which would reduce swelling and minor pain. I knew if I began having any difficulties swallowing or breathing to immediately call EMS and go to the ER. (I ended up taking three of the ibuprofen, two in the first 24 hours, one the second night.)

I’m allergic to so many antibiotics that I’ve also learned to treat my sinus infections (only at their worst) with a compound topical formulation of an antibiotic ointment blended with a sterile saline spray. Same sort of thing with the antibiotics – the surgeon wanted to prescribe them prophylactically, and yet, as I explained, I was in greater danger from an allergic reaction to whatever antibiotic was prescribed (uncontrolled vomiting after mouth/throat surgery isn’t a good thing) than from a possible opportunistic infection at the surgical site in my mouth.

As I thought about what Dr. VL primarily does for me now, I realized that I’m no longer a challenging patient. She monitors, prescribes and administers the biologics (Xolair and Fasenra), prescribes my other llergy and asthma meds, and tracks my other allergies (largely now short-term like ragweed). We’ve developed a plan for dealing with my antibiotic allergies – if I am seriously ill, like with pneumonia, I will be admitted to the hospital and they will administer the antibiotics in small amounts while treating the reactions.

Dr. VL’s the one who pulled together my medical team when it was most critical in 2012-2016. But frankly, for the most part, while all my problems are not cured – they aren’t necessarily curable – many of them are stable, or have improved. My HES is in remission (as long as the Fasenra keeps working). So now while there are MFA doctors who know me pretty well, at least as far as their specialization is concerned, I’m the one who manages my care. Who asks for specific tests, or brings up concerns at an appointment.

As I thought about that, I realized there was another way to look at her leaving – as a marker of my graduation.

If I am in serious trouble again (well, hopefully before it would get to anything close to “serious”), I know how to get to doctors who will listen. If all else fails, I’ll make sure always to have her phone number.

But maybe the best gift I can give her is to wish her joy in her new adventure and tell her I am going to be okay – because of her care.

Coping with food allergies

The Asthma and Allergy Foundation of America has published the results of a new study

I can’t remember not having allergies to foods. My mother says they began immediately, when “normal” formulas with dairy made me ill so I was put on soy. (I hated that soy so much I can still remember the taste and to this day will not even try soy milk or other such products – YEEYUCKKK!) But colic, rashes, vomiting can be pretty persuasive for food allergy diagnosis.

I learned early, though, how good dairy tasted. My mother’s father, who would babysit me, was always convinced he knew better than anyone else. He believed allergies were nonsense and some cheese or milk couldn’t hurt me. So he’d give me bits of cheese from his sandwiches as I played on the floor nearby. And I would soon begin to “get sick” – hives, rashes, crying, stomach ache. All too often, by the time Mom got there from work, the allergic reactions had turned into asthma (although he never admitted to a connection between the foods and the reaction).

It didn’t take long for me to make the connection between being so sick and the foods I craved. I didn’t understand why everyone else could eat ice cream, but I had to have popsicles or non-dairy sherbet. Why everyone else at a party could eat pizza, but if I did, I’d be sick all night and likely for days afterward.

I couldn’t eat oranges! Just the release of the citrus oil from the skin of an orange being cut or peeled 1500 feet away – the opposite end of a large house – would cause sneezing, watery eyes. And within just a few minutes (despite staying at the other end of the house), I’d have a small rash on my skin and the inside of my mouth would feel like it had been filled with blisters. Benedryl, here I come.

And those were just the highlights. It has often felt like it would be easier to list what I could eat, instead of everything I was allergic to, or had bad reactions to.

But over the years I learned all sorts of ways to cope.

There were the safe foods – no reaction, at least so far. Reactions are not in a steady-state; they can change slowly, evolve, sometimes suddenly just stop. And new ones start.

Problematic foods – those which I can have a small amount of, if I am not sick or running any worrying symptoms (like peak flows decreasing, other allergic symptoms causing problems, any infections…). I can eat oranges now, in small amounts.

And Hell No foods – the ones that have caused severe reactions or anaphylaxis in the past, or that are related to foods that have triggered severe reactions.

I learned to adapt recipes, initially from my mother, then by studying cookbooks and learning how to exchange certain ingredients. But I also learned how to avoid things. For a while, oranges were a no-no, so I didn’t even buy them. I could eat peanuts and pecans as a child, but in my 20s I developed severe reactions to peanuts and most tree nuts (but oddly, not almonds that have been blanched.) I’ve been allergic to peas since childhood, but just a few weeks ago was served some sugar snap peas (I thought they were a different sort of green beans). No reaction – probably because of the Xolair (but I’ve promised my allergist I will not seek them out). I learned to read ingredient labels compulsively when I was younger, and am careful about new, processed foods.

Now I’m allergic to most legumes – peas, chickpeas, peanuts, lentils are out. But I can eat most kinds of beans, which are also legumes. Go figure.

Restaurants are rarely a problem, but they can be a serious one – sometimes chefs or waiters are careless. And there is nothing like having an anaphylactic reaction to spoil a nice dinner. Or ruin a promising new relationship.

Food Allergies and the Emotional, Social and Financial Impact

Learning to manage asthma and allergies as a child or an adult

Let’s Talk about Fragrances – UPDATE!

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

Bamboo garden — 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.

Food-grade flavoring oil (not perfume, not massage oil, not incense). FOOD! ALL-NATURAL! This means real cinnamon oil, lemon oil, vanilla extract.

For some more ideas, check out this article in Scientific American.

Category: Let’s Talk