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.