Tag: resources

We found out that our daughter Katie had CF on September 30 2008. Katie was 17 months old at the time. We were devastated. We were afraid. We were concerned for our child. We worried if our other child might have CF. We wondered what the future would bring. We wondered if we would have any more children. We had a million questions.

OVer time, we got on our feet again. We spent time at the CF clinic. We met with other CF parents. We researched the disease. We spent lots of time on the internet. We read books. We watched movies. And eventually, we got to the point where we felt like we understood what we were dealing with.

To seasoned CF veterans, I’m sure we’re still “rookies”. But, we are insiders nonetheless. And we are recent insiders. Thus, we have a unique perspective and a unique chance to help others.

I’m compiling my notes into what I envision to be a book that will provide an overview of our first year living with CF. It will share our personal story. It will share resources that we’ve found helpful. It’ll explain how we’ve learned to navigate the health care system and how to optimize the help that is available to CF patients and their families.

Ideally, I’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, I’d like to provide context for those that are on the periphery of cystic fibrosis – friends and extended family members of those affected by CF.

Who knows… maybe I’m crazy. Maybe I’m overly ambitious. But, I looked high and low for such a book when Katie was first diagnosed, and, I couldn’t’ find that book. If I could provide something even remotely helpful, then I will have accomplished my goal.

Here’s the basic outline of the book that I’m thinking of writing:

1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
* Routine
* Family priorities
* NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
6. Hope:
* Medical research
* Community / Support groups
* The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
10. Ethics:
* Having more children after a CF diagnosis
* Universal health care
* Etc
11. References:
* Books
* Websites
* Charities
* Additional resources

What do you think? Is there a need for such a book? Would you find it helpful? Am I missing anything in the basic outline above? Let me know… The more feedback I get, the better the end product.

Thanks,

Todd