My Conversation with Dr. Gary Epler

Several weeks ago, I tried to reach Dr. Gary Epler, the reseacher who identified BOOP back in 1985, via email. I never got a response.

Over the ensuing weeks, I have become increasing irritated by the lack of support services for patients dealing with BOOP. For example, it was only by asking and trying out different therapies...and a little bit of trial and error, like the carrots, that I was able to keep my sanity and focus my energies during this treatment period.

Today, I called his office directly, leaving a message saying I had been responding well to therapy, but I had some questions. He called back about a half hour later.

After thanking him, I explained my dilemma. He directed me to the epler.com website and the Forum link to read more about how others were dealing with BOOP.

I specifically asked about dealing with prednisone. Dr. Epler made two crucial suggestions:

1. Pulmonary rehab is needed for a 10-week period, three times a week. This needs to be arranged via a prescription from my doctor, via my health care system.
2. A low saturated fat, low sugar diet with lots of vegetables and chicken.

Since I didn't agree with the low-sat fat suggestion, but I didn't waste Dr. Epler's valuable time with a discussion on this. I was just grateful that he found the time to speak with me. Thank you Dr. Epler.

Finally, the Forum page on Dr. Epler's website is a great find. There are many people suffering out there, and we need to connect.

From my stand point, I will set up a list of relevant posts so that readers of Dr. Epler's Forum can also refer to my experience.

An Old Story

Late in the winter, as I was getting sick, I decided to begin reading Psalms everyday on my way to work. For a few minutes, I could learn, study and elevate myself before the real work of the day began.

I felt this was a great way to acquaint myself with a body of knowledge I had never studied, brush up my Hebrew and raise up my spirits from what I felt was a work atmosphere characterized by poverty of leadership, jealousy, destructive gossip, backstabbing, etc. etc. ITall order, hmm?

Looking back, I realize I was expecting some pay off, once I completed my self-assigned assignment.

But, I had forgotten the story of IrishGirl.

Many years ago in Jerusalem, after I had left, one of my closest friends, IrishGirl, became very observant of Jewish religion and custom, a status called in Hebrew, hozer b'tshuva.

Like all of us, IrishGirl wanted to marry. To make her dreams come true, she was advised by a religious individual to pray a certain psalm or religious passage for a month. So IrishGirl prayed.

She also did a daily check of her skin, a long-held practice. But at the end of her 30 days, she had not met anyone new.

Instead, she found a lump on her breast. A lumpectomy was performed followed by chemo. She lost her hair, was cancer free and at 36, infertile, unmarried, and still alone.

IrishGirl went on to many more exciting adventures and now runs a successful daycare center outside London, a long-held dream realized.

So today's hackneyed lesson children is:

Focus on the journey, not the desired results.

All Kinds of Insomnia

The prednisone continues to disrupt life. While not waking up at night to gorge myself, I realize I have been operating on less than optimum sleep.

I usually don't fall asleep until nearly 1 a.m., and then I'm up at 5 or 5:30 a.m. I feel refreshed, and happy sleep wasn't disturbed, but 4 1/2 - 5 hours sleep just ain't enough.

Good News!

Just back from the doctor.

The CT scan report was great. To quote:

The prior dense focus of peribronchial consolidation in the left lower lobe is no longer seen. There is some linear atelectasis noted adjacent the suture line. In addition, the consolidative opacities in the right middle and right lower lobe have almost completely resolved. The upper lobe nodules are no longer seen.

Honestly, I don't know exactly what it means, but I know it's good.

Under Impression, Paul O'Sullivan, M.D. says:

....If there is a history of BOOP, the findings are compatible with an excellent response to ongoing therapy...."

Seriously, what more could you want?

So the treatment works and is working. Real cause for celebration.

Now there is the prednisone to deal with.

Also, more good news. I was encouraged to continue with the yoga! The reason I became so tired after the postures, according to Dr. A. was not because of the breathing....but because of the effect of the prednisone on the connective tissue. At least that's what I understood from our quick consultation.

So, there really is good news this Shabbat... Just two months after starting treatment.

Regards to all...

Lance and Me - Irony VII

A few days away. Even sick and out-of-work people get to take a few days off.

The mother of one of MyKid's classmates invited us to Fire Island. The weather was grey and overcast, but the companionship was wonderful. The children got along and were active.

I was able to rest and MyKid could be busy, outdoors and exercise some independence. It was a beautiful gift. Thank You MsL.

During the week, bikes are allowed. Walking was difficult. Standing for more than 2-3 minutes very hard.

I was suggested to try to ride a bike. And I did. And it was good. As long as the ground was flat. Our host said, I was like Lance Armstrong. He couldn't run, but he could ride.

I've never been compared to Lance Armstrong before. But, I was so thrilled. So invigorated.

So, here's Irony VII: Yoga as wonderful as it was, wore me out, but bike riding left me winded but capable to carry on during the day.

One last note: MyKid's latest name for me: A Blown Up Grown Up.

Ironies II Through VI

i⋅ro⋅ny

1  [ahy-ruh-nee, ahy-er-] Show IPA

–noun, plural -nies.

1.the use of words to convey a meaning that is the opposite of its literal meaning: the irony of her reply, “How nice!” when I said I had to work all weekend.

2.Literature.

a.a technique of indicating, as through character or plot development, an intention or attitude opposite to that which is actually or ostensibly stated.

b.(esp. in contemporary writing) a manner of organizing a work so as to give full expression to contradictory or complementary impulses, attitudes, etc., esp. as a means of indicating detachment from a subject, theme, or emotion.

3. Socratic irony.

4. dramatic irony.

5.an outcome of events contrary to what was, or might have been, expected.

6.the incongruity of this.

7.an objectively sardonic style of speech or writing.

8.an objectively or humorously sardonic utterance, disposition, quality, etc.

Origin:
1495–1505; < class="ital-inline" style="font-family: Verdana, Arial, display: inline; font-style: italic; ">eirōneía dissimulation, sarcasm, understatement, equiv. to eírōn a dissembler + -eia -y ³

Ok. Thank you Dictionary.com.

I just wanted to make sure I was using the right word. Not sarcasm, not sardonic, not satire. Irony.

I guess what I'm talking about is item #5. As in:

Everyone keeps coming up with the ironies of this illness.

And they run the gamut from the sublime, for example,

MyKid remarked suddenly the other day, "You know Mom, even if you have a terrible disease, at least it has a funny name, BOOP!"

to the ridiculous,

The Workman's Comp issue: While Dr.A justifiably admits that there's nothing in the clinical results to support the fact that acquiring BOOP was related to my workplace, why was it that the hardest coughing, the worst mucus, and the general sickness always really started up in the work place? How could we spend a week in Charleston in April, with the flowers in bloom, and I hardly coughed? And why could I walk to work in the blistering cold and feel good and then hit the entrance to my office space and start coughing?

The need to work and write, when you don't really have to:

Freed from the daily grind, I'm still writing, practically everyday on this blog.

And as GraciousRelative pointed out,

As thousands, probably millions of people are becoming redundant (as they used to say in England) due to the Internet, I am, no doubt like many others, finding a new way to outreach to people, for free....on the Internet.

And, to counter balance the steroids pumping through my body and to stop the inflammation that swells my flesh,instead of turning to soy, vegetables and rice -- the magic foods du jour -- I'm turning to my grandmother's practices and the grandmothers of women around the world: whole milk, bone soups, gelatins, meats, and the fats "they" tell you not to eat: chicken fat, coconut oil.

And, even Yoga, which gives me so much spiritual uplift, and a sense of accomplishment, right now,

I cannot practice it, because it tires me out entirely too much.

Something I know was helping my breath, was also wearing me out.

Oh, where will it end?

(That was me being overly dramatic, not ironical.)

Dr. Epler Where Are You?

Dr. Gary Epler in Boston identified and named BOOP back in 1985. He created an interactive website, that doesn't seem quite so interactive these days.

It features "BOOPTOWN" which was meant to be interactive, but doesn't seem to work when you click. There's good basic information and links from this blog to that website can be found in earlier posts.

There's also a web page for a non-profit he heads related to BOOP, COPD and other specific lung diseases. The last Annual Report is from 2005, which makes me wonder about the status of the non-profit and current efforts to disseminate information about BOOP.

I have one main question. I reviewed what the non-profit was interested in supporting. What I did not see was anything related to "support services," for those suffering with BOOP.

In my BOOP experience, thus far, I was essentially sent home with a bunch of pills. That's it. A little verbal description of what to expect from the prednisone.

What's missing in the treatment protocols is the kind of social-services support one might expect for diabetes or cancer patients, i.e.,

• clear, diet suggestions to help support health during the treatment (maybe they haven't studied that yet, but it would be helpful),
• psychological support services for how to cope when "'roid rage" hits, say a phone number to call, and
• possibly setting up a link to a network of other BOOP sufferers who could provide support.

I'm sure there are other great ideas that would be valuable to the patient. As a grants writer, I'd be willing to work on that.

With an estimated 25,000 annual sufferers nationwide, this could be a great support system, a wonderful way to track BOOP for the doctors

So far, an outreach email has gone unanswered, and my next plan is to call directly.

If anyone knows what's happening with Dr. Epler, please let me know.

If anyone has more ideas for the BOOP Complementary Support System Project (I guess I just named it), please let me know.