Today was Jesse’s annual cystic fibrosis clinic visit. He goes to clinic every three months, but the annual visit involves a more in-depth look at a few things. I don’t think I’ve ever been to an annual visit before because I don’t remember ever getting to see the extra people he sees at an annual. We actually had a later appointment for once, but we were still up super early to go to my dentist appointment on the way. In case you’re wondering… I still have perfect teeth! 
The first stop is always to get all the vitals and such. The extra step on an annual is to draw lots of blood. They check all his vitamin levels and such. I’m very interested to see how these come back. On Jesse’s last annual, we were both completely on the paleo/allergy diet eating tons of fruits and veggies which helped his vitamin levels come out awesome. Now he’s mostly back to his old breakfasts and lunches and we usually only eat the same for dinner. So, we’ll have to wait and see how much of a difference it has made on his levels.
One concerning thing we found out is that his liver enzymes are really high. Apparently it’s pretty common for “older” CFers. Sue said that it’s not really something to be too concerned about, but they are starting him on a new drug that will assist the liver in doing its job better. The weird thing is that they were comparing today’s results to the ones from his ER visit in November… and that’s where the huge difference is. Since none of his meds have changed recently they think it’s better to add this new med rather than mess with changing his normal meds. I can’t say I’m all that surprised, his liver is probably always working over-time with all the meds he has to take. What’s one more?
The most important part of clinic is getting the PFT report to see how Jesse’s lung function is doing. Today his FEV1 score was 36%. That’s down 3% from his last visit so it’s not great, but nothing bad either. I’m always intrigued by watching him do PFTs, I like to watch the graphs move as he’s doing them. Today we got a more scientific explanation about how being in the box measures the volume of air in the lungs, he usually only does the box at the annual. One time Bill (the respiratory tech) joked that he was going to make me do PFTs next time, I don’t think he expected me to like that suggestion… that would be so interesting to compare.
We also got to see the dietitian today. She had some suggestions for getting Jesse’s appetite and weight up. I’m not sure that we really heard anything new, but she did give us some printables about adding calories and such. I think I already do that as much as I can, but I’ll read them to see if I can learn anything. The biggest thing she wants Jesse to work on is adding more fiber and WATER to his diet. Those of you who have known Jesse for a while may have noticed that you’ve never, ever seen him drink water. He claims he doesn’t like the taste of water, which is ridiculous. She wants him to replace some of his tea (the only thing he ever drinks) with water and gatorade. She also talked about adding a fiber supplement, but I think he can get enough fiber by eating a few more fruits and veggies.
We spent a good amount of time today discussing IVs with Dr. Haddad. As much as Jesse is proud of his long-running record of time without IVs, we keep thinking that he sure would feel better if he could have them to get back to his baseline of feeling normal again. It’s weird because we have a lot of CF friends who go on IVs for tune-ups all the time, but Jesse’s doctors always insist that he isn’t sick enough for that. As long as his numbers are staying steady, they don’t want to give him anything and risk him building up resistances against the meds. The doctors are very happy that having no IVs for this long is making his bugs susceptible again to meds he used to be resistant to. They want to save them to attack his lung bugs if he ever gets really sick. When we left we felt good about the no-IV decision and understood his reasoning.
I guess these huge differences in treatments is what you get with a disease such as this, each CF center is using their best judgement to do what they believe will be most beneficial. I trust our CF team and know that they have Jesse’s best interests in mind. So, we’ll just keep on, keepin’ on!
Also, be sure to check out Jesse’s blog for more specific details about the visit.
It’s been a full year now since we first started getting these ideas of becoming foster parents in our heads. Last January we finally decided to jump in with both feet and start figuring out what was required to do something like this. We quickly realized that we were all of a sudden in over our heads. Having just left my job to work with Jesse, we were already navigating as much change as we could handle for the moment. Even though we decided that we needed to stick with the class we had started, we knew that we were not ready to have a child in our home right away.
