Wednesday, November 4, 2015

CF Clinic with a Special Visitor

A had CF clinic yesterday and we decided to bring W along.  It’s a long trip to the Chicago hospital – over an hour.  But W was a trooper. J

A’s lung function was a bit down.  Down enough for me to be concerned – less than a 10% difference, but still lower than any of his recent readings.  On the bright side, I seemed more concerned about the lower numbers than A’s doctor.  Doctor B prescribed an antibiotic and A is to check in and let the doctor know how he’s feeling once he’s finished with the antibiotic.  A assured me he feels good, which is most important. But considering A just finished a round of Cayston, we were hoping his numbers would be higher.  One thing that worried me was Doctor B mentioned IV treatment if A’s lung function doesn’t improve at his next appointment.  I have flashbacks to last summer and the hospital stay.  It was such a difficult time for everyone.  I’m praying we don’t have to go through that again.  Not to mention that A’s next appointment is 3 days prior to S’s first birthday.  I’d be heartbroken (as would A) if he wasn’t home for S’s birthday.  With each clinic visit, I fear the lung function results will signal the beginning of a decline.  But I’m taking it as a positive that A doesn’t have to report back for another three months.

I also had a chance to talk to Doctor B about Orkambi and CF drugs on the horizon.  I really really like doctor B.  I never feel like my questions are stupid and he always includes me in discussions regarding A’s health.  He didn’t seem to be very impressed with Orkambi and mentioned that it was getting more difficult to convince insurance to cover it.  It is not approved for A's CF mutation, but I was curious if it might be some day.  He did say that the CF Foundation is working hard to advance it’s pipeline and find drugs that will benefit all 1500 CF mutations and not just a select few.  There is an initiative to have medications identified by 2020.  That doesn’t sound super optimistic, but I left feeling hopeful and thankful that we saw Doctor B this visit.

As for W, he was a big hit.  I’m not sure what it is about this hospital, but each time we go, he has several admirers.  Every time we were in an elevator, at the doctor’s office, in the lab, pharmacy, hallway, etc., someone would complement his hair, eyes, behavior, and even his shoes.  He was extremely popular.  At one point, A was sitting on the exam table and W ran over to him and said something like, “Daddy, I checking on you.  Are you ok, daddy?”.  It was one of the sweetest things I’ve ever seen.  We also had a nurse? social worker?... I can’t remember now… introduce herself as Katie.  She was gowned up as each person does when they enter the exam room.  W saw her and replied, “Katie is all wrapped up!!”.  So cute.  He definitely makes a mundane appointment a lot more fun.

After the appointment, we took W to a kid’s café.  It was adorable - complete with a miniature town and ride on cars.  He loved it.


  1. Your posts are usually about non CF issues - this one hit home about the reality that your husband health status is always a potential concern.

    I wonder if your struggle with pregnancy announcements isn't connected to the serious issues that made it necessary for you to use IVF.

    I like when you, and me, can chatter on about nonsense like Stitch Fix and I can forget about the fact that your husband has CF.

    I can forget but I'm sure that you do not.

    You and your family are in my thoughts and I hope that you hear good news at the next check up.

    And that you're all together for S's birthday celebration!

  2. Thank you so much for the kind thoughts! :)

    Last summer was really difficult for me. Until then, A did his vest, took his medications, and attended clinic every 3 months. Aside from those things, life was relatively normal. The hospital stay totally threw me and was a stark reminder of the difficulties CF brings. That was a very dark period - I was newly pregnant with S and trying to take care of my family while not feeling well myself. I wanted to be able to celebrate the pregnancy and S and I feel like I was sort of robbed of that. Even when A was discharged, he wasn't himself. He wasn't the A I knew. With the strong antibiotics he was on, he didn't feel well and would spend all day on the couch in his pajamas. I'd return from work exhausted and try to care for W while attending to the household duties. Our parents helped, but it was hard and I felt so alone. So each CF clinic visit brings me back to that depressing time.

    I'm hoping this is just a fluke, but we will see what the next visit brings.