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Diane
12-28-2004, 03:08 PM
Recently i bought a book called " Childrens hospital" . I figured it had to have something in there about cf. Well it was about Childrens Hospital in Philadelphia ( where im from), and had a few characters with different ailments. The main character was a 15 year old boy with cf. The characters are real but their names are changed. Basically this young boy knew he was going to die at some point toward the last few chapters, and wanted to have an autopsy so the doctors could maybe learn more about cf and help others not go thru what he did. Well, i learned a few things myself from him in this book that i wanted to mention here. Most of it, you may already know.

~ dont sit idle for long periods of time ( days -weeks) it gives cf a foot in a door you dont want it to have.

~ When you are very sick, try your hardest to eat something, anything....not eating weakens us when
we are already weakened, we can't afford that.

~ Don't give up, don't lose hope, we need to fight with our mind as well as with medications and treatments.

This character in the book was named Mark ( not his real name) and his story touched me , and made me want to fight even harder for everyone i know, from years ago, that have already passed on. If you get a chance to read it, you may want to. It is sad , but it made me want to fight much harder and i am sure
" Mark " would love to know he helped someone more than he thought he would....................

~Diane 39 / cf / diabetes / b.cepacia

NoDayButToday
12-28-2004, 05:06 PM
Another CF book I'd highly recommend is "Give Me One Wish" by Jacquie Gordon. It's about her daughter, Chris who had CF and died in the early 1980s. It is very well done, doesn't get overly sappy, and I just loved it. I've actually read it and reread it several times. Happy Reading!

anonymous
12-28-2004, 10:56 PM
Excellent message Diane...............Thanks for sharing

Diane
12-29-2004, 02:12 PM
<blockquote>Quote<br><hr><i>Originally posted by: <b>NoDayButToday</b></i><br>Another CF book I'd highly recommend is "Give Me One Wish" by Jacquie Gordon. It's about her daughter, Chris who had CF and died in the early 1980s. It is very well done, doesn't get overly sappy, and I just loved it. I've actually read it and reread it several times. Happy Reading!<hr></blockquote>

I have been looking for that book for years, and never knew the authors name. Thank you for posting it, now i will ( hopefully) be able to find it <img src="i/expressions/face-icon-small-smile.gif" border="0">

~Diane 39 / cf / diabetes / b.cepacia

Emily65Roses
12-29-2004, 03:13 PM
My favorite is Breathing for a Living, an autobiography by Laura Rothenberg about her decision to have, and journey though, a transplant. I've reread it something like 6 times. <img src="i/expressions/rose.gif" border="0">

NoDayButToday
12-29-2004, 06:06 PM
You're welcome Diane. I couldn't find it in any bookstore, and my mom and I had to order it online, so that may be your best bet

cfgirl38
12-30-2004, 02:05 AM
On another forum people are talking about a book called "Inner strength" by Cloyce Jones. It's about a family and their struggles as one of the family members have Cf. I haven't read it yet but everyone that has says it's very well written. I am going to see if I can get it through the book store tomorrow or if I have to get it online. Eva

dresapp
12-30-2004, 02:32 AM
Try AMAZON.COM for books. Ive had alot of success finding hard to get books there. I bought "Breathing for a living" by Laura Rothenburg fairly cheap through them. It is well used but readable. I would be willing to sell it to someone fairly cheap if anyone is interested. Maybe just for the cost of shipping or something. If anyone is interested in it you can email me at [email protected]

Kris
22/f/canada
CF, CFRD, liver disease, pre transplant lungs and liver