Sunday, June 19, 2011

31 Days of May the CF Way - Day 29 In Q and A part 2

1.Do the different types (Gene types) of CF affect the individuals in different ways or are they basically the same?
To start with you have to have two of the faulty genes to have CF. These can be the same faulty gene or a combination of two different faulty genes. My understanding is that depending on the type of gene they can pretty much guarantee if the digestive system will be involved or not. With some gene types, there is not need for digestive enzymes to be taken.

However, I think that all people with CF, have lung issues, and this tends to be very individual, not determined by the genes involved. I'm not sure if I've explained that very well? Let me know if it doesn't make sense, and I'll try explaining again!

2.

One of my Mum's work colleagues had CF, then had a lung transplant, and she said it completely opened up his life - he started running marathons and the like. I know that CF lungs are really mucousy, which is why you have to do so much physio - but aren't there digestive issues as well, hence the enzymes? So someone who had CF then had a lung transplant would have to take anti-rejection drugs for the rest of their life, but would still have to monitor diet and have enzymes, is that right?

From my understanding that is correct! I believe that their energy requirements are less. I also read recently that other symptoms like finger clubbing disappear, too.

3. How do you feel about transplants? (I don't ask that flippantly, I know it's a really big issue to some people).

I have mixed feeling about transplant. I am quite happy to donate my organs after I die. But if i had to decide for El to accept a transplant I'm not sure I would, but I think Rob would! How's that for a dilemma? I hope that she will be old enough to make a decision for herself when the time comes, and pray that i will be able to support her in that decision.



4. I appreciate that you're trying to make your family as normal as possible - what can we do to support you?

Prayers help, and keeping the older kids for appointments also helps and just listening when I babble!

I hope that answers everybody's questions ok!

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