I had my three month checkup at the CF clinic last week and am happy to report that things went well! My doctor was pleased with my weight gain and happy that I have been able to work up to running two miles. My lungs sounded clear, the oxygen saturation in my blood was normal at 98%, the bacteria in my lungs are susceptible to a variety of oral antibiotics (meaning there are several options for treatment if I get sick), my blood sugar was normal (no CF-related diabetes!) and my FEV1 was up two points to 49% of predicted. I’ve worked hard not to get too caught up in the FEV1 score because it can be a fickle fiend. But, honestly, I was thrilled to see it go up. It felt like a pat on the back after several months of working hard on my weight and exercise goals.
Lucas and Jaime both accompanied me to the doctor. Lucas has traditionally been very shy and quiet during my appointments but he was neither of those this visit. He kept loudly proclaiming his desire to stand on the white paper on the exam table. He said over and over, “The doctor look in MY mouth now. The doctor look in MY ears!” I have to hand it to his pediatrician. She is wonderful, apparently so wonderful that Lucas wants to be examined. Thankfully the doctor seemed charmed. But I might have to find a babysitter for him next time I go.
Overall my doctor said that my health is very stable. Stability is a wonderful thing when you have a progressive disease. Of course I would love to see a big improvement. I would love to see my FEV1 jump 10 points. Occasionally CFers see jumps like that, but that’s usually if there has been a dip due to a serious infection. Big gains can also happen if someone has not been taking good care of themselves and they begin to make healthier choices, like being faithful with breathing treatments, airway clearance, and exercise. Some patients have seen significant improvements in lung function by taking a medication called Kalydeco which treats CF at the cellular level. However, it is only effective for those who have a gating mutation, and neither of my CF mutations are, making this drug ineffective for me.
Thankfully I haven’t been acutely ill for a long time. My last round of oral antibiotics was seven months ago. I am not perfect with my treatments but I do make them a priority. I’m active with Lucas and exercising three days a week. I eat healthy foods to boost my immune system and to combat inflammation and infection. I try hard to get enough sleep. I’m hanging out around 50% lung function with those healthy habits already in place. Without a miracle or a medical breakthrough, I’m unlikely to see a big jump, but I’m stable. I’ve adjusted to life at this level with these challenges.
Stability means that if new treatments become available, I will hopefully be in a position to benefit from them. There is so much research going on right now involving treatments and medications that combat the basic defect of CF. My doctor is optimistic about what might become available in the next ten years. I hope and pray that there will be a breakthrough in my lifetime.
For now, it’s about keeping on! I’m thankful for a good doctor’s report and for those two points on my FEV1. I’m thankful for stability in my health. I’m thankful that God gives me the strength to live and thrive in spite of my challenges. I’m thankful for a rascally three year old to make me laugh through my appointment. And I’m thankful for the bright hope that fills my heart.