Yesterday was our first meeting with the Oxford/Wycombe Hospital CF Team. Dr. Claire Holt is our main doctor, Bev is our genetics nurse and Anna is our physical therapist. It was an informative meeting that put our fears a little more at ease and gave us hope.
Dr. Holt explained again what CF is. She was hesitant to say that Jeb was a mild case b/c they don't like to classify, but one of the two CF genes is recognized as a mild CF gene. Based on the sweat test, which was 2 points from normal, his sweat glands are not effected. Based on looking at his poo sample, it looks like his pancreas is not effected, but this may change over time. We still have to wait for the feces tests to come back to tell us for sure if his pancreas is effected, but dr doesn't think so (and neither do I from what I have read). So, he just needs to take vitamins once a day to get his weight up. Great news not to have to take enzymes before each meal and snack! So, it looks like it's mainly hitting the lungs and airways. Currently his chest is clear, but he will need to be on a penicillin product twice a day to ensure that staff infections stay away. This will last for two years. Based on the past year, she said that he is a pretty lucky kid to only have been hospitalized twice considering no treatment with CF.
Anna, our physical therapist, showed us how to do the chest beats twice a day for 10 minutes. No special paddles, just three fingers and it's very similar to the way I already pat him when he gets a cuddle.
The prognosis is that CF is life shortening. They used to say 30s, now they are saying 50s to 60s. Jeb may be even luckier if his case continues to look mild and he takes care of himself through daily meds. That is still the hardest part to hear. She did say that they continue to try gene therapy. It just a matter of the body not fighting off the good gene. All they need is for the good gene to give just 10%. It's not a cure, but it will make life easier to live. For now, Jeb will need to take meds each day for the rest of his life and will need to maintain a healthy lifestyle. So, Jeb will always have CF, but hopefully he will live with it as a daily routine and he can still do the things Jacob and Aiden do. (I compare it to a person with diabetes, but I could be very wrong since I just don't know enough at this time)
They are making great strides in the UK. The prime minister's son has it, so a lot of money is going to research from a lot of CF benefits that are thrown at 10 Downing St.
"He who has a why to live can bear almost any how." ~Friedrich Nietzsche
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