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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.

BMI Challenge Week 3

It’s the 3rd week now! How are things going? Up, down? Staying the same?

I had a weird time surrounding my GERD testing because they took me off Prilosec. That’s the last time I do something stupid like that. My stomach acid was killing my enzymes and I darn-near got another blockage. It caused other issues, too, including going all the way down to 115lbs, but I’m back up to 122.5 now. Thanks, Hamburger Helper!

I also got wicked heartburn last night after dinner, so you can only imagine how ticked I’ll be if the pH probe didn’t detect high levels after suffering all week without Prilosec. The whole fasting and not being on my meds (not to mention the tip of my nose wiggling every time I swallowed food) hindered my normal eating, so I’d almost be willing to do it again if they let me do it without fasting or going off Prilosec.

BMI Challenge Week 2

The challenge is on and your sponsor is sucking. Thanks to the insurance week from hell, I’m backsliding with walking and my weight. I think the stress really got to me – to my very core – and weakened my matter/antimatter warp core.

I’d love to see what I’m culturing now and send that bill to them without any copay. /grin

Anyway, last night I weighed in at 119.5, so I’ve lost a tad. This week is going to be a crazy-hectic week, which you’ll read more about tomorrow as I explain my upcoming GERD testing. Right now, I’m off Prilosec and already feeling heartburn and nasty, hot coughing.

How are you doing with your BMI and overall health? I’ll cheer for you from the sideline this week and re-join the starting lineup next week after this test.

Gain Weight – The Fatboy BMI Challenge

Team ChallengeIt’s been nearly 2 years since I set out to gain weight to improve my lung function. The data that I read, in combination from years and years of clinic begging me to try something – anything – to gain weight, points definitively to the correlation between a normal BMI (body mass index) and improved lung function. I discussed that in length back in 2010 and want to remind you of these highlights:

  • Malnourished adolescents aged 12–18 years experienced a serious decline in FEV1 of about 20% predicted, whereas mean FEV1 values remained stable at above 80% predicted in adolescents of normal weight.
  • During 1 year of observation adolescents who experienced a >5% predicted decrease in weight for height had a concomitant mean loss of FEV1 of 16.5% predicted during that year, whereas patients who gained relative weight had a parallel increase in FEV1 of 2.1% predicted.

If that isn’t enough to convince you, just stop reading now, because that’s what the rest of the post is about and is the modus operandi I’ve been going with for the last 2 years. Look in the sidebar to see when the last time I was sick enough to need IVs was. Are we on the same page?

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