Friday, July 25, 2008

CF Contact

Me and Trinity:

What a cutie!
Chest PT on a baby:

The Cystic Fibrosis Foundation discourages any contact among CF patients. Personally, I think this is overreacting at its best. Yes, some precautions need to be taken, but it has been blown totally out of proportion.

I am writing this because the other night at Concert on the Square I held Trinity. Her mom handed her over to me, and we were talking and then she told me that Trinity has CF. I asked if I should take precautions and her mom said that it was okay for me to interact with her - and I feel that as long as the parent says it's okay, it's okay with me. And I did her chest pt - and it was a nice break for the parents. They have three children under three and two of them have CF. They have a 3-year-old with CF, an 18-month-old without, and Trinity, 2-months-old, with CF. If any family needs a break it's this one.

I have always wanted to work with CF kids - and I know how much the CF Foundation would have nothing to do with an adult with CF working with other CFers. I always wanted to be a CF doc and I still have that urge, because I know I could be a better CF doc - at least a better adult CF doc. The pediatric docs are pretty good - but the adult ones. Well, let's not go there.

If there were a pill to magically make me better - I'd go to medical school. Or nursing school. I might get my PhD in nursing and/or social work. I'd like to be a social worker helping CF kids and adults. I just have this urge to help every single person with CF - and it's so hard to get anything "real" done with the CF Foundation. Yes, we raise tons of money and that is good for research, but I feel there is something large missing in terms of helping patients deal with being a CFer.

That's how I feel.


Chris S. said...

She is so beautiful! Now I regret not attending... Will she be back next week? :)

Jen said...

my mom has a lot of the same feelings about the CFF. She agrees that they do great things to raise money, find new medications..yada, yada....but that when it comes to individuals needing help they aren't there. Its funny how now doctors and the CFF think its not good for CF patients to be around each other...when I was 10 (I live in SW FL) I went for a week to the FL keys for a CF summer camp! I hated every minute of it because I missed home but its just funny how back then they thought it was great for all of us to get together and be friends!! Of course it eventually closed but just imagine the germs that were spread in that place. :)

Tabitha said...

i actually believe in not really doing much contact with other cf'ers. I especially don't want to be around younger ones that are healthy and don't have bad bugs.

Didn't you wonder if you would give that baby MRSA though?

Im not criticizing or anything like that, but did that cross your mind? Cause I would be scared to give someone my bad bugs [and not necessarily what i'd catch]

Anonymous said...

Wow. The thought of three kids under 4 makes my head spin. Give two of them CF and I'm vomiting all over the place from the mere thought of it! I have intense respect for what this family must go through and I don' t even know them. You bet they deserve a break!

I am sure that the mom was thrilled to connect with you, someome who gets it, and someone who is living a full and rewarding life as an adult. That's a very hope-filling thing for a mom.

As to the contact issues, you are right, a parent has that right to choose for thier child. I am much more relaxed with many things than some other cf moms that I know on-line. My bottom line is, Emily has a lot of living to do before she dies. My job as her mom is to see that she gets to do that. I admit I get a little nervous about close/direct contact with other cf'ers simply becasue Em isn't culturing anything bad right now and I want to keep it that way for her sake...I REALLY don't want to add TOBI or another med back into her cramped med routine until we have to.

SHe attends Great Strides and our CF frundraiser that is atteneded by other CF'ers. We have parents and sibs of CF'ers at our home sometimes...but I do try not to let her get close to others CF'ers in the clinic waiting room. (For that matter, I try not to let her touch much throughout the whole hositpal).

So, I"m glad you got to hold that beuatiful baby. I'm glad the mom gets to know you. I'm glad that the family at least didn't have to do her cpt that night...

and I respect the parents right to make decisions regarding their daughter's health.

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