For me it was never a quiet day growing up with CF. I was diagnosed when I was born and was immediately flown by helicopter to another hospital to have my first surgery due to having an intestinal blockage, meconium ileus. I was mostly homeschooled because of frequent hospitalizations, doctors’ appointments, and surgeries. I always had a pre-packed hospital bag at the ready for whenever the news came that I had to go back in. I spent a lot of scary nights in the ER. There were even times when I got to come home that I was still hooked up on a lot of IV antibiotics that were administered through countless PICC lines. Eventually, I had to get a port — I’m now on my second one. I had a Make-A-Wish when I was 11, and when I got home, I immediately had to go to Colorado to have a lobectomy, where they removed the top lobe in my right lung.
I’m no stranger to CF-related bad news, though for the past three years I’ve been on Trikafta® and doing really well. Since starting on the “miracle drug” at age 21, my life has done a complete 180 degree pivot. ER trips and hospitalizations are much less frequent now — I don’t get nearly as many lung infections. My last surgery was two whole years ago. I can work out all the time. And, I’m able to travel and work doing things with my life I never thought I would be able to.
Then something happened at my latest checkup that surprised me.
I went to see my CF care team for a routine check-up as well as to get the million tests us CFers have to do. You know the ones: blood draws, lung X-ray, glucose test, PFTs, bone density scan — just to name a few. Everything came back great, except for the bone density scan, which was, honestly, the one I was the least worried about.
“Your bone density scan came back as abnormal. It’s officially in the stage of osteopenia. There’s a spot in particular that’s really bad in your hip.”
“Cool, Doc so, we just fix it, right?”
I’m not new to this. I know there’s not a quick fix for this, but my brain didn’t want to accept that there’s now another thing on my laundry list of health issues that I have to tend to not to mention one I knew almost nothing about when they told me. I’ve had my fair share of issues with my lungs, pancreas, liver, development, weight, and more. I never thought of bone density though.
What is osteopenia? It’s a condition that occurs when the body doesn’t make new bone as quickly as it reabsorbs old bone, so the bone starts to get weaker and more brittle. Osteopenia is the stage right before osteoporosis. At that stage, there’s a lot more medication and treatment that I will eventually need. For now, though, the treatments are exercise, trying to strengthen my bones, and taking extra calcium supplements (I’ve always been very low on my vitamin levels, including calcium, because of the trouble with absorption that CF causes). But, that was it. That’s all I can do for now, and it sounds not too bad right now, I mean I already exercise.
It feels like there’s not much I can do other than wait for it to get really bad. I mean it will inevitably progress, and it will just constantly be in the back of my mind. I’m starting to have pain in my hip at 24 years old, and there’s not much I can even do about it right now. But I’m certainly not gonna quit. This new development in my health is still very new to me, almost to the point where I don’t think I’ve even properly processed it yet.
It will take some time for me to see how this progresses, and I’m going to do everything I can to take care of myself.
All of us in the cystic fibrosis community have a special bond. We’ve all seen and been through so much, whether it’s yourself or your family member or loved one. We’ve all heard bad news, good news, shed tears, and at times, not known what was going to happen next, or if we’d make it home. I think there is so much strength in the community. Being able to reach out to fellow CFers or joining CF community Facebook groups has helped. Cystic fibrosis has absolutely shaped my entire life, but I’m actually so extremely grateful it did. It has made me more loving, more thankful, more patient, and it has made me take way longer with hugs because I never know when I’m hugging someone for the last time. CF has made me the spontaneous traveler I am today, because I know life is just too short.
You are so strong. You are resilient, and you are absolutely capable of living a happy life. Every single breath is a gift.
Love one another.
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