Tuesday, March 31, 2009

Answers-Part 1

Thanks to everyone who asked questions for my Q&A Post. I've decided to split up my answers into two different posts, so I won't have 1 extremely long post!

Aspiemom asked:
At what age did you realize you were a little different from your friends and not everyone had to do treatments, etc. like you?

Carrie also asked:
Did you always just kind of know you had CF or was there a specific time when your parents sat you down and told you?

I think I always knew I had CF. I "grew up" with it, so I knew no different. But as far as the details of CF, background, causes, etc., I'm sure that evolved overtime as I became more knowledgeable about what I had to do to stay healthy. Because my early childhood (elementary school) years was pretty normal and healthy, nothing Cf-related interfered with my life. I didn't start doing CPT until the age of 7, and breathing treatments at about the age of 10. I do remember vividly the 1st time I went in the hospital. I wasn't really sick, but my doctor wanted me to go in for a tune-up and for me to begin doing treatments. I think at that time (which was 7 years old) I began to realize what CF entailed, and what was necessary to stay healthy. When I entered the 5th grade, I started requiring oxygen at night while sleeping. This really hit hard, because it prevented me from going to slumber parties, etc. I also had gotten a feeding tube, which limited certain activities and spend-the-nite parties as well. My mom would let me skip my feeds every now and then. And depending on how I was feeling, I would go without o2 at night. I think the 5th grade was a turning point for me, where i started to realize that i was different, and that i was actually sick. I still though, however, do not remember a specific time or period of time where i realized i was different or where my parents sat me down and told me I "had CF." My parents treated me like a normal kid; i did normal things. I kept my CF pretty much a secret from the outside world (except family).
Cindy asks:
What, if anything, would you change (future or past) about your CF treatment, the way you, or doctors have treated your CF? How do you keep the motivation to do your treatments on a regular basis, without any lapse? Do you ever get frustrated and have days where you just say, "The heck with it...I need a break!"?

This answer is going to basically be about the past and lengthy. Since I've had a lung transplant, I do not have to do any of the CF treatments. The only thing CF-related I do is take Enzymes. Backing up to the past, yes and no. There are days where I regret some decisions I made regarding my health care. I was not very good at doing CPT (chest therapy). At the time, the VEST had not been invented. We did it the old fashion way, by hand. Therefore, my parents were in charge of doing that. For some reason, my parents nor I were very devoted at doing CPT on a regular basis. It rarely got done twice a day (most days once-some days not at all). I don't think it really affected me, as far as getting sick more often, but when I look back, I wish my parents would have pushed more at doing CPT. I was a very compliant kid, and did what I was told. But my parents did let me have "days off" or times when i could skip a treatment. Later in high school, I dreaded having to get up extra early just to do 3 breathing treatments, and having several hours of treatment before I could go to bed. Yes, there were times, where I said to heck with it--not doing it tonight. But here is the catch: when you get sicker, or your CF progresses, you WANT to do your treatments, because they make you FEEL BETTER! That's part of your motivation.

I feel that my doctors treated my CF really well, and I don't think we would have changed a thing. In reality, I would never change a thing, because my decisions have brought me where I am today. But I'm not going to lie and say I never skipped treatments, etc.

One big thing that I regret, but don't really regret (if that makes sense?). This is more of a curiosity thing than anything. Right before I got sick during spring break of my senior year, I kind of pushed myself and held out from going to the doctor a LOT longer than I should have. I ALWAYS pushed myself to the very last leg, but ALWAYS rebounded quickly. My body adjusted, and learned how to function with low o2, with extra coughing spasms, etc. But back to spring break...we had a portable o2 sat monitor that i kept track of my 02 saturations. I had secretly been watching them (away from my parents)...and they were low...and kept getting lower. I kept trying to do extra treatments to get them back up. But they kept dropping down into the 70s. Finally I gradually (hint: gradually) told my Mom, which caused her and myself to worry. In my eyes, I didn't realize how serious it was. The day that I finally (along with my Mom) decided that I seriously couldn't breathe...my 02 sats were in the 50s on room air. At that time, we went to the ER at Children's, was admitted, and consequently, I required 02 24/7 from that day forward, and subsequently, caused me to be listed on the lung transplant list. NOW....every person tells me I was getting real sick and it would have ended up that way anyway (even if I had gone in the hospital sooner). So I always wonder what would have happened if I had got treated sooner, but don't regret it anyway. God chose that particular path for me for a reason.

You have to give yourself a day off every now and then (not consistently, but just to give yourself a break). If you're compliant (or parents who have younger kids that make their children do their treatments religiously), then I don't see any harm in taking a day off once in a while. (not like my above situation with my 02 sats dropping...but you get the picture). Even though I don't do CF treatments anymore, I still have to deal with post-transplant stuff. And my motivation for that is: God gave me a 2nd chance at life; I have 2 lobes in my body from living people; I have an opportunity now to do what I want to do in life; I can breathe. I was given a gift, and I would never screw that up on purpose. It's not as simple to take a day off post-tx!

CFwife asks:
Was there anything that you did to help you feel better about your CF and taking care of your self?

You have to learn how to trust God, and let him help you through the difficult times. I prayed ALL the time. My parents were VERY supportive. I guess when I did things (such as being compliant with meds, treatments, etc.) that kept me out of the hospital, it made me feel good, and like I had somewhat control over my CF. I would cry sometimes to let out frustrations. And I just tried to not let CF control me. I've always been a strong and motivated person. So I think when you accomplish something (no matter what it is), you feel better about yourself. One thing that I think helped us older CF generations, is that we had other CF friends that we could talk to and hang out with. As I've mentioned before, here where I live, during most of my hospitalizations, we did not have any contact precautions around other CF patients. We watched movies in each other's rooms, laid in each other's beds, ate together, etc. We had a support system while we were in the hospital, and it was made up of those who knew exactly what you were going through. We made the best of our time in the hospital...it was a second home! The younger and newer generations of CF patients, unfortunately, don't know what that's like and will never experience that. But that was big part of getting us through difficult hospital stays. And I developed some strong friendships that continued outside of the hospital. CF can be scary, especially not knowing your personal outcome of this disease. But I don't think I ever once doubted that I could accomplish my goals in life. You have to believe in yourself and believe that God will help you get there, that He is along for the ride too!

Thanks ladies for these GREAT questions!


Aspiemom said...

Thanks, Katey! I enjoyed reading this.

How do you change the font color within your post? I can't figure that out.

Cindy said...

Thanks, Katey! I really enjoyed learning more about you, and your history. It helps to have an "insiders" view of how it affects you.

Anonymous said...

Very interesting!Amazing to think that you used to be able to hang out like that with other CFers in the hospital!Did you go to CF camp too?I probably would have done that if I had known I had CF back then.

Another question...what do you have to do now post transplant to take care of yourself?Is is mostly meds??

Robyn said...

I have been skipping my treatments more often, but reading your story gives me more motivation to stay with them. I have recently gotten sick, and I hope I didn't cause it..