CF Care Clinic Update

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It’s time for an update! I had my CF care clinic visit Wednesday, the 16th. Unfortunately, Jason is on a mission trip this week, so he couldn’t come with me. I was bummed, but I guess it’s okay šŸ™‚ So my mom and sister and I made it a girl’s trip!

We drove down Wednesday morning and arrived just in time for some lunch before getting to Cook’s. They normally have my yearly appointment in the summer, but they surprised me and made this appointment my yearly! So basically that means that I would see more people and do a couple more tests than normal, so the appointment would also last longer. Oh joy!

So first thing’s first: a chest X-ray. It was pretty simple. I know the procedure by now, so I’m normally in and out in 5 minutes.

Then we headed upstairs to the pulmonary floor.

When I was finally called back, they took my vitals like normal. I was so sure that I had lost weight, but I stepped on the scale and I was 114 pounds! That’s 3 more than last time-I was really surprised! I know my body pretty well, but my mom and I talked and thought maybe I did lose weight, but since I started working out in January and gaining muscle mass, the extra few pounds could be related to that. But I’ll take it! My oxygen was really good as well.

In my room, I waited by myself for just a few minutes before heading to do my PFT’s. At my yearly appointments, I do my normal PFT test, then a nebulizer treatment, then another set of PFT’s to see if it changes. So my first set, my highest number was 97%. My second set after the nebulizer treatment was 96%-so not much of a change at all, and this is a good thing! It means my lungs are working šŸ™‚

Once I was back in my room, Candace, my nurse came in to ask me all of the standard questions about my meds, how I’ve been feeling, etc. As soon as she was done, Rachel, my dietitian, came in. I had requested to talk to her specifically because I have been looking into trying Real Food Blends (RFB).

Don’t get me wrong- I love my Nutren 2.0 formula-but it’s got some ingredients in it that I’d rather not put a high dose of into my body every night. So Real Food Blends are exactly what they sound like-real food for people with feeding tubes, just in a blenderized form! It’s 100% real food: no preservatives or corn syrup- two things most formulas (like Nutren 2.0) have. I believe people do better and feel better on real, healthier foods. Again, not that Nutren 2.0 hasn’t been a real lifesaver, but real food is always better if it can be tolerated!

So anyway, Rachel and I talked about what it would take to do the RFBs. Turns out, it’s going to be pretty complicated. In order to get enough nutrients that I get with the 3 cans of Nutren 2.0 that I do every night, we will have to do a combination of things. I’ll continue to do 2 cans of Nutren 2.0 mixed with 1 package of RFB, 1 packet of beneprotein to add protein and some calories, and 1 tablespoon of coconut oil for additional fat and calories. So hopefully we can everything ordered and in place pretty soon!

The social worker also came in to speak with me, but we did not have much to talk about. The research coordinator, who I met at my last visit, came to talk to me about a new study they were doing that I qualified for. Basically, they were studying a new anti-inflammatory drug, which would be very helpful for patients with CF. But, it requires participants to come to the clinic once a month, and that is not possible for me right now in my dietetic internship.

Finally, the doctor came in. Dr. Burk was not there that day, so I saw one of his partners-Dr. Rosenblatt. He was a friendly, older gentleman, and reminded me of Mr. Rogers. Because I had never met this doctor before, we went through a brief medical history and he had some questions on why I didn’t do one of my treatments more than once a day like it I’m supposed to. But when I told him that once a day is all I can make time for and that my lung function is at 97%, he didn’t care too much after that.

If you remember from my last appointment, something that I had talked to Dr. Burk about was stopping the Orkambi medication so I could start on “the pill” to help with menstrual regularity and because I’m not looking to have any babies as soon as Jason and I are married šŸ™‚ Dr. Burk thought I was being very proactive, but wanted me to wait to start on birth control until after I had been off of Orkambi for a few months to see how my lung function survived. Dr. Rosenblatt had a different opinion… but I stuck to my guns, told him what I wanted, and assured him that if my lung function declined to the point that I needed Orkambi, I would get on it. He seemed okay with that, so we moved on. But I got the green light for birth control and I was happy about that.

He asked how many times I exercise each week and what I do when I exercise. When I told him I had to stop doing cardio because it makes my right hip hurt too much (to the point it’s hard to walk on it), he decided I should get a hip X-ray to make sure there is nothing there. So that will be scheduled in Lubbock most likely sometime next week. If there is nothing on the X-ray, he advised me to see a sports medicine orthopedist to see what’s going on, because cardio is good for my lungs. So I guess I’m looking forward to that…

After we had finished, my throat was swabbed, and I was free to go down to the lab for my blood draw. Oh joy.

But praise the Lord because the wonderful phlebotomist drew lots of blood with one quick stick and I don’t even have a bruise! Hopefully we will know those results by next week as well.

So overall? It was a fantastic appointment and everyone was very happy-including my dietitian, who had originally wanted me to be at 120 pounds by this appointment! I’m very happy with my weight and I feel pretty good most days. I’ve got 4 1/2 more months until my wedding day, so there is a lot of planning going on! Thankfully it’s not stressful, and I’m learning to cherish these moments, even though Jason and I are just ready to be married at this point. Patience is a virtue!


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