Blown Away

 I had my regular clinic visit this past Monday and since it's close to my birthday it was my annual visit. Which translates to having lab work done and taking a lot longer than normal. On my annual visit I have to talk to everyone. The physician, nurse, research team, social worker, dietician and sometimes a couple other team members. It's pretty exhausting answering questions and filling out questionnaires for a couple hours, but I know it's necessary to ensure I'm in good overall health. I genuinely enjoy everyone on the care team and have known most of them for decades. So it's always good to catch up with them all about everything that's going on with them and with my family, work, etc. 

Normally the visits are fine and I expected nothing more or less from this one. That in itself is a change from the way clinic visits used to be. Before the CF modulator therapies, clinic visits were filled with unknowns and a bit of nervousness. How would my PFT's be? Will my X-rays and labs look ok? Am I creeping closer and closer to being a diabetic and ever closer to the dreaded lung transplant?? Will I end up having my life come to a screeching halt by the news that I'm being admitted for a week with 1-2 weeks of home IV's after? I usually had a sense about whether I would be admitted or not, several times taking an overnight bag with me because I could tell by how I felt it wouldn't be a good visit and I wouldn't be going home that night. They were not only hard on me but hard on Monica. Especially after the birth of the twins, wondering if I'd end up in the hospital and she'd be a single mom of baby/toddler twins for a week. They were hard times that challenged us, but strengthened our marriage and our relationships with the Lord. He was always (and still is) incredibly faithful through it all. 

Visits today no longer come with the burden they used to as I described above. Since the CF modulator drugs, the clinic visits really aren't very worrysome, except the more recent battles with Osteopenia/Osteoporosis and being pre-diabetic. That's for another post though. This current visit turned out to be a pleasant surprise. 

It started with my PFT's. I went through the motions as I always do. This time there was a new RT training to do PFT's. That meant that I (and the employee preempting him) had to assist in coaching him through it. I did the first one (you have to do a minimum of 3 to prove repeatability) and they read my FEV1 to me.... 70%!!!! I didn't know exactly, but I knew it had been well over a decade since I last blew a 70% FEV1. The next 3 were all 70% as well. Proving it wasn't a fluke. I did come to learn that they slightly adjusted the predicted reference numbers, which elevated the percentage slightly, but you can also see the liters of air and it was markedly increased from my previous visit. I was shocked. I couldn't believe it. I couldn't wait to tell Monica and family/friends and look to see the last time I was in the 70% range. I checked and 2006 was the last time I was consistently in the 70% FEV1 range. Almost 20 years ago!!! It's truly astonishing and I give all the credit to God. Another pleasant surprise was my A1C dropped from 5.9 to 5.4! That's in the normal range. I'm no longer classified as pre-diabetic!! The last time I was in the normal range for my A1C was 2021. It turned out to be a truly remarkable clinic visit that lifted my spirits and made me so grateful to God for His faithfulness and these good results. 

Last thought fort this post. A couple weeks ago I celebrated my 41st birthday. 41 may not be a big deal to most people. When my wife and I got married, the life expectancy had just increased to 41, which was amazing... for other people with CF. At least that was my mentality. I was excited for the advancement of CF care and that increase, but honestly did not think I would make it to 41 without a lung transplant. I had watched my PFT's regularly decline over the years and did the math on the trajectory. It was looking like I'd be in transplant range by my late 30's. Half of the individuals that have a transplant don't survive past 5 years. I had watched many friends go through that painful process only to add a year or two to their lives. I never thought I'd make it to 41. It seemed like a hopeless dream. One I prayed for regularly, but still hopeless. Yet...... here I am. Just turned 41, in the best health I've been in for decades, with an amazing wife, 3 awesome boys, surrounded by incredible family and friends. God. Is. Good. 

Full Circle

I don't remember having many full circle moments in my life. Maybe I've had them and can't recall them at the moment. Yesterday was one I'll remember. I had a routine research visit for a study I'm participating in for a new CF medication. I can't say the name for privacy reasons, but it's been great and another step in the right direction toward finding a cure. The boys were off school for a teacher development day and Monica happened to be off work. I took the day off and we planned to go to the Arch. All 3 of the boys should have gotten to go in elementary school, but this thing called COVID was happening for a couple years and they didn't get to go. They've been asking to go for awhile now and we decided yesterday would be the day. 

I had to be at the hospital at 8:00am and it didn't make sense to make the drive home and back again after the appointment so we all went together. Monica and the boys got to meet a couple of the ladies who run the visits for the study and they were very excited to get to meet Monica and the boys, who I talk about A LOT. I guess they're pretty special to me and I love talking about them. 😉 Likewise, Monica hears about the nurses and their lives too since I spend so much time with them. These studies can go on for 1-2 years, with frequent appointments lasting hours, so you get pretty close to the nurses running the visits, especially since it's the same 1 or 2 every time. It was great to get to introduce the nurses to my family, even though they've seen many pictures over the years. 

While I was doing the visit which consists of blood draws, urine samples, PFT's, EKG, sweat tests and the lovely questionnaires, Monica and the boys were out exploring the BJH campus. They went to Bread Co and got some sweet treats, then walked to the playground in Hudlin Park, right out in front of Barnes-Jewish Hospital. I've had countless admissions over the years since the boys were born. Mainly the twins. I've only had 1 admission since Trevor was born. He missed out on all the fun. 😁 We have many pictures/memories of the twins throwing pennies in the old fountain in the main lobby, playing on the playground at Hudlin Park, playing in the hospital rooms and walking the halls with me. It was a stroll down memory lane for Monica as she watched our now 11 year old twins and 9 year Trevor playing on a playground they used to play on a couple times a year when I was admitted. It was a revelation moment for her that she later shared with me of how we've come full circle. Maybe I've got the meaning of that phrase all wrong, but I'm going to use it anyway. 

Growing up I wasn't expected to live long enough to graduate elementary school, junior high or high school. I'd never have a career or a family. CF was a death sentence for any born with it. After all those were debunked, and I began to get older, my health did start to decline and it was looking like I wouldn't get to see the boys graduate high school. That was my goal though and I fought hard to try to make sure that happened. 2+ hours of treatments every day, exercise and being extremely disciplined and regimented with treatments, medications and therapies. Yet still, CF would rear its ugly head from time to time and I'd be in the hospital for a week, then home on IV antibiotics for another week or two. Monica would come visit and bring the boys, which I knew was a chore. Packing up twin babies/toddlers and driving to Barnes, dealing with the horrendous parking and lugging them through the hospital to my room was quite an ordeal. My wife is amazing if you didn't already know. 😉 Hospital admissions, treatments, therapies..... it was all normal to the twins. They hadn't known anything different. They'd sat on my lap while I did my vest and breathing treatments, and listened to my incessant coughing since they were infants. 

As we pulled up to the hospital, the twins remembered it and were telling Trevor that when daddy "had" CF he used to have to stay there and they would come visit. Jace was telling Trevor this and chose the word had. It struck me. Mind you I still have CF. It's genetic and there's no cure.... yet. But the fact that he chose to use the word "had" illuminated his perspective. He hasn't seen me do my vest or a breathing treatment in years. He hasn't visited me in the hospital since 2017. From his perspective that is all a thing of the past. It's beyond remarkable and seems unreal. To think I'd be 40, with stable lung function, able to stop all therapies and breathing treatments and live a normal life, was unfathomable. Never in a million years did I think I'd be here today writing this post. I hoped it would happen for the younger CFers, but thought the hope for my generation of CFers was gone and it was going to be a fight til the bitter end. And yet, here I am. Vest and breathing machines packed away for years, leading a life I never thought possible. 

Monica pulled up a post from many, many years ago on this blog where I showed a picture of the boys around a year old, standing in front of the hospital room window looking at the park, then another when they were around 2, standing in front of a hospital room window looking out again. Here we were at the same hospital, listening to the twins reminisce about days of old to their little brother, about a thing of the past called Cystic Fibrosis. From hoping to live long enough to see them graduate high school, to living expectantly as I watch them grow into men, knowing CF won't be in the way anymore. We've come full circle. 

God's goodness abounds and it always has. In hopeless hospital rooms, after surgeries, admissions, poor prognosis's... He's always been good. If you want to hear about His goodness, let me know. I've got plenty to talk about. 😁