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BMI Challenge 2.0

The time has come.

To start writing again.

To gain weight again.

To come back to terms that CF life isn’t on autopilot. Crap happens.

Since my last real post in February 2013, a LOT has changed. It’s mind-blowing to think of a 3-year recap, but here goes in bullet form.

  • Boy came back to us on Mother’s Day 2013 due to another incident at home.
  • I started on the trial for Orkambi in June 2013 with a 42% FEV1 without bronchodilators.
  • We finalized his adoption in May of 2015 after ~1,000 days in our home, his 3rd, 4th, and 5th birthdays until we celebrated his 6th birthday as his forever family. We will not be posting photos here – his parents got to know who we were and about this site.
  • Family life took its toll, but never had an exacerbation, despite being a dad and husband and business owner…
  • but my weight had moved to hover around 112lbs for a new normal…
  • and my FEV1 dropped throughout the trial and being on the label to the low 30s: 33%-35%.
  • During all this time, we fostered 32 toddlers, babies, and newborns.
  • October 2015, we got a newborn, then a few more while he stayed to bring us to 35 in all…
  • when the perfect storm hit: Boy got a cold, then me, while at my lowest point in my weight swing, while exhausted from work and the holidays and sleep deprivation from newborns.

That brings us to now

Well, dial back the clock just a little bit and we hit a frantic ER visit that sent me to Trauma Room 1 with a full code crew with defib pads. For many months, I’d felt odd heart/heartrate issues, usually associated with a stresssful moment or period in our life: a conference, deadline, or stressful decision or discussion.

I’d been taking 5mg of Prednisone to alleviate the chest tightness that would also come with that. Once time in 2015, I went on Cipro thinking I was short of breath because of an infection.

Nope. I had a bad case of AVNRT… that is, I had atrioventricular tachycardia. I was likely born with an extra heartbeat nerve that could send the top part of my heart into a repeating, quickening cycle. It’s common to be diagnosed around my age, though more common in the mid-to-upper-40s because that’s when normal people start to slow down and notice this as odd.

After a weekend battling being SOB and exhausted (I was taking 1-2hr naps every day), on a Monday evening before Christmas, we texted the CF coordinator. She was concerned that it was a collapsed lung, so we waited for family to arrive to take care of the kids and went to the ER.

I decided to get one good cough in before having to lay down, and that sent things into overdrive. The level 1 triage thought she had a broken machine when my pulse maxed it out at 199. She took me back to the regular triage room with the computers and EKG to see my pulse was actually 207 and my respiration was well over 50.

Next thing we know, an RN comes in with a wheelchair and tells Beautiful to keep up because we’re running. A team of about 10 was waiting for me in Trauma Room 1 and they stuck defib stickers on me, accessed my port, tried to start an IV (he sucked and was kicked out of the room), and the doctor came in 5 minutes later and brought me back down to 120 in about a minute after asking me a couple of questions.

That was the first mention of SVT (supraventricular tachycardia) and the nurse practitioner before I went to a room nailed down AVNRT for us to Google when we got settled. I was in the hospital for 2 more days after that and was on heart meds and felt like crap. We had heart catheterization scheduled for the end of February in our minds… if we decided to do that. Well, after a lot of consulting and seeing the cardiologist we liked the best from my hospital stay, we did surgery on January 6th. It worked!

The perfect storm

Come back forward a couple of weeks to the perfect storm. Boy got a cold from school. I went through my usual pattern, but was at the lowest point in my weight cycle, was sleep deprived from several newborns in a row, and had a LOT of work to catch up on from surgery.

I felt awful. When the coughing wouldn’t stop and I started soaking the sheets in my sleep (and then the carpet when taking a nap), we texted again. Cipro. “How are you feeling?” “Much better!”

Three days later, texted again. Cough increased again, constantly short of breath. Come in to clinic Friday. I blew a 26%! There’s the source of my SOB. I got sent home with a Prednisone burst and and extra strong round of Augmentin on top of the Cipro. Me and the toilet are once again best friends. Oh, and yogurt. I forgot how much I like yogurt.

Doctor’s orders

So, I’m on a new BMI challenge. I am the only one who can keep me off the transplant list now. They are saving IVs for life and death stuff before transplant because they need that cocktail to work when there are fresh lungs to protect. So these oral abx and my weight and exercise will have to do the job.

I’m eating like nuts and they agreed to give me 5mg of Prednisone through Sunday to assist with my appetite and get going with more walking. I walked a mile with Boy on Sunday. I do a 1/4 mile every morning for school drop-off and will start doing evening walks after dinner and 30 minutes of Vest. Some extra testosterone to offset Megace. Yeah, I’m going at this.

I was 108 at clinic on 2/5/16… with a sweatshirt, running shoes, and my pockets full of my about-town crap. I went directly to the cafeteria and ordered biscuits and gravy.


I’m back. I’m 18.5 BMI and I can wrap my hands around my thighs. I’ll see if Beautiful is game for pulling the Wii board back out and using the Wii every evening to chart this again.


  1. Wish you the best of luck. I’m about to turn 30 with CF and enjoy reading your posts. Glad to see you’re back. Weight gain is probably one of the things I geek out on most and I thought I’d share something that has help me add some #s. Not sure if you’re a big coffee drinker but I have been doing Dave Asprey’s bulletproof coffee recipe (modified a little) for the past couple of years ( Basically it is about 12 oz of coffee, 1/2 stick of Organic Valley Grass Fed Cultured Butter (, raw sugar to taste, and a spoonful of coconut oil when it strikes my fancy. Blend it all up with an immersion blender and enjoy! It drinks a lot like a late and is deliciously decadent. I get an extra ~400-500 calories out of it as my morning drink.

    Feel free to let me know if you have questions

    • Thanks for reading, Max. I actually abhor the taste of coffee and prefer to just pop a Boost Plus (360Cal) for that sort of thing, but I’m sure there are coffee fans reading.

      I’d think a half stick of butter and tablespoon of coconut oil would be 600Cal alone, eh?

  2. So good to see a post from you again and hear how you and all have been doing. What I always admire about you is your steadfast spirit and faith in the trials of life and the turbo trials of CF. Sounds like you have a plan and I know you have the will power and fortitude to climb up the PFT ladder again and also rebuild your strength and weight. Wish I could give you some of my weight. I am at 30 BMI. Chubby for a 5′ 6″ guy. Ha! I was also on the Vertex trials for single Delta 508 with nonsense gene but my lung function declined a bit also. I eat a lot of fig newtons, cheese, pasta and of course love bacon! I think these are staples for you also. This past year has posed challenges for me also with a battle with inflamation (could be residual effects of aspergillosis) and edema in legs and feet. But overall like you continue to fight the good fight and thank God for his blessings. Please keep up the posts. Many of us out here have a real affection for you and your family and not only care about you and yours but pray for you too.
    God Bless,


    • Mark! I was just telling Beautiful over lunch that I saw you open the email this morning and was going to shoot you an email if you didn’t comment, but here you are.

      I just ate an entire Hamburger Helper like the old days, so I’ve finally stretched out my stomach for 2 weeks of trying. Bacon is a recent kick of the last 2 years or so, but it also has the same unfortunate effect as burgers on my short digestive tract… but we can all suffer for 4 hours for the sake of bacon, right?

      With the upcoming adoption, considering if I should just track weight on a separate, anonymous, site for now and resume this after that’s finalized of if we’re just being overly cautious. This one is a private adoption, so we sure don’t want to mess this one up.