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Cystic Fibrosis Cornerman

The story of my wife's fight with cystic fibrosis, lung transplant, and what I learned from it all.

Month

October 2015

Grace Potter and a Delirious Beccalicious

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“The day turns into night, turns into day, and I’m still delirious” is part of the chorus for a song on Grace Potter’s new album “Midnight”. Bec quickly took a liking to it…though it’s a song about partying, we joked about the ICU delirium she suffered from occasionally this year in the hospital. Part of the reason it affects people is that there’s not much of a distinction between day and night and you often lose track of time.

To combat ICU delirium, they say to have familiar faces around, have a window nearby, and play familiar music. We listened to this advice and the music we played most often in Becca’s hospital room was Grace Potter. Even while she was sedated and intubated during January, we felt it would help keep a positive mood in her room. It was then that I started an email exchange with Grace’s management that led to a sweet little surprise last night. The email was titled “Beccalicious and Grace Potter”.

We arrived at the Grace Potter concert an hour before the doors opened so we could secure a good spot near the stage. At the time I didn’t know if my request for a meet and greet would pay off and I thought it was unlikely. I had kept her manager up to speed with Becca’s condition and let him know when we would be attending a show but I had not heard back in a while. I checked my email in a blind hope that I would have a new response to our exchange and I have to say I was surprised when I saw it. It was short and sweet and included “…might be able to make this work tonight.” I sent him my number and waited for a call…

Like a secret agent, I stepped away when I saw the call come in from the tour manager. I received instructions to get her to the double doors left of the stage at 8:45. I was on it! I returned to Bec and played off coolly that it was the blood donation center calling. We had it all under control. I only started to get nervous at about 8:20 when Bec had to leave our spot to potentially throw up as her nausea often strikes at the least opportune times.

Hoping her Ondansetron (pronounced ‘on Dance-a-tron’) would kick in quickly and wouldn’t cause us to miss this opportunity I asked our new friends next to us if they could hold our spots while we went backstage. They were more than happy to oblige.

Luckily, Bec came back in time and we were off to the double doors for our meet and greet. She didn’t know why I was pulling her over there but she came along with no fuss. As we waited near the area, I told her that I was trying to score some seats in case she got tired. She bought it long enough for the tour manager to come out and get us. He sat us in a cafeteria while we waited and that was when he said “she” would be ready soon. I could watch the realization slowly sink in that we were getting more than a couple of seats…IMG_4491

We sat there with anticipation building until the tour manager came to get us and bring us to a bench outside of her changing room. Before we knew it, Grace came out with a huge smile and gave Becca a big hug. She was thrilled! I got a hug too but not before Bec complemented her on her “gams.”

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We chatted for longer than I expected and I got to tell her the story of our inside joke with “Delirious”. Bec was surprised that Grace knew her story and loved every second of the meet and greet.

Discussion 2

After a group shot it was time for the show. Grace said she would find us in the audience and she did.

Group shot

I only regretted the fact that I didn’t tell her how I had bought a guitar during her time in the hospital, mastered the G chord and (given enough time) could play the D chord in succession. I am pretty sure that she may have found a spot for me in her band right then and there. In any case, I will be sure to put that in the thank you note.

We made it back to our spot up front that our friends had saved and watched an awesome show. During which, she gave Bec a pic and even dedicated a song to her…Delirious. Because of my amazing observational skills and lightning fast reflexes, I was able to catch some of this on video however a lack of acceptable formats and patience prevents me from figuring out how to post them here just yet…

I’ll try to post the videos on “The Rebecca Martello Poole Lung Transplant Journey” facebook page.

Pointersisters

BEST. CONCERT. EVER.

A year ago today…

A year ago today, we walked into an urgent care clinic in Granby, CO. Rebecca’s O2 saturation (sats) was 52% and the nurse couldn’t believe that she was able to stand in front of her. After some initial tests, they worried she could be septic and suggested we take her by ambulance to Denver. Our quick weekend away with friends turned out to be a major turning point in Rebecca’s health.

While we sat there waiting for the doctor’s recommendation, Becca sent me on a mission to get her a snack. I figured I would get her the most joyous snack in the vending machine…the Almond JOY. Surprisingly, joy was not an emotion I felt in the moment pictured below. After pumping in $2 for a $1 bar, I walked away with the prize.

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Not surprisingly, Rebecca was not in the mood for any Almond JOY by the time I returned. I carried that $2 candy bar with me for the 90 mile ambulance ride as I texted her mom and sister to keep them in the loop.

Her sats had never dropped that low. I had never seen her that sick. At the time, our major concern was sepsis, a life threatening condition caused by the body’s response to an infection.

Not long after arriving in Denver, we found out that Rebecca was not septic. It was time to celebrate…Almond JOY time. Though we still faced the reality of her failing lungs, there was a huge feeling of relief

It was a major turning point in our mindset. In the course of one day, the lung transplant discussion became less frightening…by comparison. Our short weekend in the mountains quickly changed to a week in the hospital as we waited for her condition to improve enough so that she could fly home on settings that a portable oxygen concentrator could support. From then on, she took a wheelchair through the airports and always had O2 with her.

It was also a major turning point for her health. She switched to supplemental oxygen almost 24 hours a day as her lung function dropped significantly. We later learned that she had experienced heart failure on the right side. Her heart needed to work so much harder because her lungs were slowly failing.

What I learned from that situation was that you need to celebrate good news even when there’s bad news on the horizon and that keeping a positive attitude is a reminder of why recovering is so important..

I never did get my extra dollar back for that Almond JOY but we got our $2 worth!

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