Is it the one where you bash them? Yep, this is probably the most common question, especially from older people. The answer is kind of yes and no. Yes, we do 'chest percussion' which involves patting him, pretty hard, in certain parts of his chest, to help loosen his sputum (mucous) in the hope that he can clear it (cough up, spit out). We did this 2-4 times a day when he was a baby. Now he is 9, he uses special physiotherapy devices (one is an Acapella) which help vibrate his chest to do the same thing.
Why is he always taking tablets? He takes 14 different medications every day (currently, it is always changing). Only some of these are tablets. The main tablet that you will see him taking is Creon. When he was in utero the duct between his pancreas and his gut became blocked by his sticky mucous, and never developed properly. So from birth no enzymes produced in his pancreas were getting through to his gut, meaning he cannot break down any foods which contain fat or proteins, which is, well, pretty much everything! So he takes Creon with most everything he eats. The higher the fat content, the more he needs. So if you see him tucking into a Big Mac, he'll be swallowing down 15 capsules with it. His party piece is doing these all in one go. I hate it!
Why are you always offering him crisps and chocolate? We are not junk food parents! He eats a whole lot of healthy stuff first, he is actually a great eater (we are very lucky in that respect). But because his replacement enzymes (Creon) are not as effective as our own, he loses more energy from his diet than he should. This means he needs to consume about 50% more calories every day to grow at the same rate as his peers. To do this, he sometimes has special high calorie drinks, but usually he manages by just being a greedy little tink, like his Dad! He also needs extra salt in his diet, as he loses too much, especially in summer. So we are the parents at MacDonalds saying 'come on, don't you want more salt on that double cheese burger and go large fries.... '.
Why are you always offering him crisps and chocolate? We are not junk food parents! He eats a whole lot of healthy stuff first, he is actually a great eater (we are very lucky in that respect). But because his replacement enzymes (Creon) are not as effective as our own, he loses more energy from his diet than he should. This means he needs to consume about 50% more calories every day to grow at the same rate as his peers. To do this, he sometimes has special high calorie drinks, but usually he manages by just being a greedy little tink, like his Dad! He also needs extra salt in his diet, as he loses too much, especially in summer. So we are the parents at MacDonalds saying 'come on, don't you want more salt on that double cheese burger and go large fries.... '.
Can people with CF mix? Sadly, this one is true. Or at least it is not recommended. There are certain bugs which find the CF lung like Hawaii, the perfect environment. They don't much like our lungs, so don't really bother us. But if someone with CF has them, and they mutate into a super bug, these can be easily transmissible to others with CF. Therefore CF clinics are segregated. We get there, go to a room, and the team all visit us in that one room. Us moving round the hospital is kept to a minimum. Cross infection is a really sad part of CF. That said I know many people who choose to manage this in their own way and still see each other, and even people with CF who marry. For us, it did make our decision not to risk having another child with CF definite.
And one of my personal favourites....
Doctor - So how long has he had CF
Me - Umm, well, it's genetic isn't it, so from conception I guess!
