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.
So.
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.
This is going to be the final post on CF Fatboy due to the increased government involvement between government agencies and the healthcare system. Too much of our lives are posted here as information that can be found regarding my meds, finance, insurance, hospital visits, foster care, etc.
As we decide on a response to the healthcare changes that have been forced upon our family, this information must be as hard to find as possible.
