From the Blogposts » inbox

Ever-Improving CFers on the Rise

CelebrateIt’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.

I’ve seen a lot of clinic visits being posted and tweeted about with great results with my new-found friends with a couple of unfortunate hospitalizations and a bad case of c-diff. It almost seems like everyone is doing a better job taking care of themselves and the meds are working. Go figure!

It doesn’t come without sacrifice on one end or another, though. For us, it’s co-pays out the nose, making budgeting impossible. For others, it means being on disability (which means you darn well better be compliant if you’re just sitting at home, right, right?). For others, it’s just a hard life that I used to live with a split life of work, school, family, and treatments. I’ve only crossed off school from that list, but once you enter into the family part, it’s a whole new world.

Things get easier and harder at the same time. Expenses sky-rocket, but your income potential does, too. Evening free time that used to be spent gaming and re-charging my batteries has been re-directed to other things to recharge my batteries that took some getting used to so it wasn’t seen as “non-Jesse time.” As an only child, I was very accustomed to “Jesse time,” but I need it less and less. I can’t go all day working, all evening being a husband, and go straight to bed, though. I do still need my time, but it’s shifted dramatically. I wouldn’t change it for the world. We would not be where we are today without Beautiful.

Now that we’ve got all of these great CFers who were on the transplant list who are now breathing new life with someone’s donated lungs, things are really looking up for my circle of CFer friends, at least. Some are going through some rough times, others are doing 5k runs, and others are getting used to their new routine of meds and appointments post-tx, but enjoying life to the fullest after years hooked up to oxygen.


  1. It’s an incredibly different CF world now than it was when we first moved from Colorado to Ohio! Praying that your clinic and doctor appointments both bring good news.

  2. Having clinic every 3 months is J’s routine too. He has 1x/yr annual labs and full on breathing test. I think the reason why we work so well is that aside from now trying to find a new routine because of the job change, I am an only child and don’t mind my “me” time. Especially since I am the primary giver of food, time, love, energy, and general care to my kids and J. I am thankful for the small amount of time in the evening that I can be on the laptop with the TV on while J is doing a treatment and doing homework. He’s doing something that is doing something for all of us. I’m happy for all the advances in the CF world.

    • I go both ways on “me time” now that I work alone at home all day. I can tend to get a bit clingy in the evening and even become the chatty one in if Beautiful has had a long day with too much talking. Coming home from work used to require a warm greeting followed by some immediate decompression time on the computer before anything else. I was hitting my daily limit of interactions with the world at work and it took us a while to figure out what each other needed after we got married since I always had some amount of “me time” after work before I got to see her when we were dating.