Summer Clinic update

CF clinics happen every quarter but over the years Dean’s summer clinic has been packed full of tests. After some lab work, sputum cultures and a home spirometer test earlier this week, we went for an official Pulmonary Function Test, chest X-Ray, sweat test and regular clinic appointment today.

After Dean’s diagnosis at 2 weeks, we had a sweat test run. This measures the concentration of salt in his sweat and is the most reliable way to diagnose CF. He “scored” 96. To understand what the sweat test results mean, a chloride level of:

  • Less than or equal to 29 mmol/L = CF is unlikely.

  • Between 30 - 59 mmol/L = CF is possible and additional testing is needed.

  • Greater than or equal to 60 mmol/L = CF is likely.

Today, after 8 months on TriKafta, his chloride levels were 51 (right arm) & 52 (left arm). So excited!!! The test in itself has improved over the last decade and geeky cool, I’ll post that on facebook soon.

While he still has CF, this means the med is affecting his body at the cellular level and in a positive direction! Definitely a Thank the Lord moment for us!!!

We have another month to try and regulate his liver enzymes before we have to potentially reduce the dosage (again) but for today we are unbelievably grateful and he is happy we made it back home in time for football.

Now that people with CF have access to meds that are literally extending their lives, the number of those in the US has increased from 30K to 40K (worldwide from 70K to 105K). We are forever grateful for the love and donations the last 12 years and know that only great things will continue in the CF world.

Sweat test
Make a celebration donation
Pulmonary Function Test
chest x-ray