Friday, October 15, 2010

The top 25 things I hate about CF

The 25 things that I despise about having CF.

25. Therapy - Doing my vest and aerosol therapies everyday and losing a couple of hours that I could spend with my wife and children. When I was little, it always made me feel different and alone because I was not allowed to do certain things or go to certain places.

24. Coughing - I hate coughing. I feel like everyone looks at me as if I'm sick and contagious. And quite honestly if you have a coughing attack, it can become really painful.

23. Taking pills - Just once, I'd like the only things I have to remember for a meal to be my fork and knife. Having to remember pills and take them in front of people tends to make every meal an ordeal and it can be quite uncomfortable as well.

22. Life expectancy - I hate having a life expectancy. When I was born, it was 12. When I was 7, it was 25. Now it's 37. Who cares? No one knows their median life expectancy. Life is full of surprises.

21. Going to the doctor - Going to the doctor at least a half dozen times a year is not fun especially when you are going for something life-threatening.

20. Having to go through IVF to have our children - I wish we could have done it the easier, more fun way. I'm sure Andrea agrees there.

19. CF makes your bowels smellier - As if it's not bad enough that it limits having children and forces you to take pills and do treatments, it also makes your trips to the restroom an uncomfortable experience.

18. Cancer - CF makes it more likely that I can have certain types of cancer. I believe I have enough life-threatening things, but thank you.

17. Colds - I can't get near anyone who is sick or who smokes. Bars are pretty much out of the question because of the smoke. If I catch a cold, it doesn't last a couple of days. Sometimes it can last weeks and worst case it can cause a major infection.

16. IV antibiotics - I am lucky to have only done them once but having needles stuck in your arm and having nurses poke and prod me for weeks is not exactly my fantasy.

15. No Marketing Plan - There isn't much recognition of the disease. Everyone knows about cancer, AIDS and heart disease but CF kind of falls by the wasteside. We need more spokespersons.

14. Death of Peers - I have lost a lot of friends who have the disease that I know through the Web.

13. Alienation - I can't be around others with the same disease due to the possibility of spreading bacterial infections. Talk about feeling alone.

12. Explanation - Having to explain it to people. It's not always easy to explain. Plus it makes me feel like a freak because I have all of these problems.

11. Having to explain it to my kids - How do you explain to your children that you have a life-threatening disease? How do you tell them that their dad isn't expected to be here as long as most dads? If you know, please tell me because I have no idea. I'm also worried that my kids will need to grow up a lot faster than their peers because of my disease.

10. Lab Rat - Asked to be a part of all of these case studies and experiments. I'm not a lab rat. I'm a person. I have people tell me you're a perfect candidate for this because of these issues that you have. Do they realize that's not exactly a way to make me feel good?

9. Acronyms - I've found myself coming up with Acronyms for CF like the Cystic Fibrosis Foundation did with Cure Found. So far I have "Can Fight, Can Function, Can't Fail, Cape Fear (I like horror movies), and Can Fundraise! It's annoying but I can't stop.

8. Depression and other mental issues - I'm not letting CF take all of the blame for my problems but there is a good portion that I can credit to growing up with this disease and being scared and unsure of how to deal.

7. Fear - I fear dying before my children grow up. I fear leaving Andrea without a husband. I fear getting sick.

6. CF Related Diabetes - or CFRD - it's a type of CF Diabetes that is very common. That's why I have a glucose test every year.

5. I'm the patient - CF is still known as a young person's disease so sometimes when I get X-rays they ask where the patient is and they ask if it's my son.

4. Where's the Cure - I believe there will be a cure one day but I've been told a cure could be 7 to 10 years away for the last 25 years. It makes the doctors seem like the boy who cried wolf.

3. Knowing that a lung transplant is a good possibility - It's scary to think that there's a pretty good chance I could get a lung transplant. I'm scared of having that surgery as it can be fatal. I'm scared of feeling so sick that a transplant will seem like a relief. I'm scared I'll be carrying oxygen around one day.

2. Knowing that my kids will be carriers of this awful disease - I just want it to die and not be carried on. My kids and their spouses will have to be screened before having kids. I wish I could take that worry away from them.

1. Losing Wendy to this damn disease! I would have liked to have an older sister that I could talk about these other 24 concerns with. It's hard to believe that you could never meet someone yet still miss them. That's the case when it comes to my feelings for my big sister. May she rest in peace.


  1. Andy, as always thanks for sharing your thoughts and feelings. Your are not alone. Lots of people stand with you albeit not in your shoes. Scot

  2. Great list!! I agree with all of those. But some i have done and been through so its not really a fear for me anymore.

  3. Andy, please remember even in your lowest of lows you are and always will be such a great influence to those in the CF community. As a mother my top 25 are very similar and yet also the exact opposite at the same time. I am so very blessed with Charlotte's great health so far on our journey, yet I constantly worry about what's around the corner for her. And I hope you know how much your stories, (yes I've read all of your books), blog, and great determination have helped me and so many others deal with the diagnosis of their children with this disease that like you said nobody knows anything about until your affected. I even find myself getting mad in the month of October when all I see is pink. I know thats not right, but I can't help it. I want to see blue ribbons everywhere! I want celebrities talking about CF and I want everyone to know about it. We will get there Andy, we will get a cure! My acronym: CF: Charlotte's Freedom

  4. I just read your list of 25 - from #25 up to #1. I liked how you ended it with #1 and tying it all together with wishing Wendy was with you to share your CF journey. Thinking of you - thanks for continuing to share & inspire!

  5. I realize his is an older post, but I'm playing catch-up. ;)

    I also lost an older sister to CF, however I do have another sister still fighting with me. (Out of 5 children, 3 of us were born with CF.) Having someone so close who truly "gets it" is a blessing indeed. We are a close family anyway, but my sister and I are even closer because of all the things we've been through together. She is without a doubt my very best friend.

    I obviously don't know the whole story, but I wanted to tell you that I'm very sorry you never had a chance to have that special relationship with Wendy.