In general, if I see a book has a CF angle, I try to avoid it.
Usually it's milked for maximum trauma and tragedy, and bears little to no resemblance to actual CF life. This was especially the case with the Lurlene McDaniel books that were so popular when I was in high school. If any of my friends read the ones with the CF characters, I cringed. The biology books were bad enough (so outdated!)--did fiction writers need to make life harder, too?
However, I am always open to being surprised. And I have been--once--with the book A Little Love Story. Not only is it a great novel, but CF is portrayed realistically! And some of the proceeds from book sales go to the CFF, so if you haven't bought it, um, do so.
So that brings me to the book in question, "A Thousand Tomorrows." I was randomly searching the Columbus Metropolitan Library database for CF books, and this popped up.
I general avoid her books, because, based on the plot synopses alone, they are treacly books just a step above the Romance Novel category, meaning we get stock characters doing stock character things (also known as--where Nicholas Sparks' novels are heading). But since CF was in this one, and I was going to the library anyway to check out the Oliver! score, I thought I'd pick it up.
Oh, I was so correct. Not only is it treacly to top all treacly novels, but there is so much tha tis just flat out wrong. The book was published in 2005--the year I got my transplant. So yeah, transplant technology at that time is something I'm pretty familiar with.
The author says in her notes that the inspiration for the book was a little boy on her husband's softball team. She says she talked to families about CF, and she gives information on the CFF. So that's all good.
What's not good is what's in her story. Essentially, the character with CF is used as a redemption device for the real protagonist, Cody, a pissed-off bull rider who's mad that his dad walked out on their family when he was a kid. He has a brother with Downs Syndrome, which is the reason his father left--the typical 'I can't handle it' excuse.
So Cody meets Ali, who rides in rodeos. Of course, this is supposed to be The Worst Thing Ever for her CF. Actually, any sort of physical exertion is good for CF patients; having taken riding lessons right before my diagnosis, I can attest to this! Ali doesn't breathe when she's in the arena because the dust and hay and all that can hurt her lungs. Um, if she was breathing, and exerting herself that way, she'd cough and that would be good. (And, most CF patients who are on the transplant list cannot hold their breath for 18 seconds, like Ali can in the book. Um, no.)
So Ali is admitted to a hospital in Denver after a rodeo, and her doctor springs the transplant discussion on her. Ali is, of course, shocked. Now, OK, in fairness, I was shocked too the first time my docs mentioned it. But Kingsbury's writing just makes this painful to read. Ali needs to be listed for a transplant ASAP. And of course she needs to stop riding. (If you're being listed for a transplant, most everyday things are out of the question. There's NO WAY she could've been riding. NONE.)
Well Ali wants a 'single lung' transplant, which CFers don't even get. What Kingsbury means is a "living lobe transplant", which is where two separate living donors are used to replace two lung lobes. This is generally not a permanent treatment--CFers require double lung transplants. That's a fact. The lobes will just get infected with the bugs from the 'native' lungs.
So after all this medical mumbo jumbo the reader has to digest, we get back to Cody, who loves Ali, who hasn't told anyone about her CF (this is actually accurate). They're in love. Cody wants to be a donor. Cody is a match! (Cue the inspirational music.)
Of course at this point, the story must mention how expensive all this is, how insurance won't cover it , yada yada yada. When you're listed for transplant, you meet with a financial person who works through all your options with you. Most insurance companies have some sort of transplant coverage. Is it capped? Yes (sometimes). Are your options limited,in some cases, as to center? Yes. But there is usually some sort of coverage. This is 2005, not 1985. Transplants are not exactly groundbreaking treatments here. Of course all we get here is the trite father pronoucement that "we will do everything we can to pay for it." (eye roll here)
So anyway. Ali gets her lobes (from Cody and her father). Of course we get the gloom and doom predicitions--only three years! (ARGH!!!!!!!!!!!!!!!!!!!!!!!!! I HATE THESE!) And she's talking, immediately after surgery? Um, no. You're on a ventilator for a few days. Hence, no talky.
And, of course, Ali's lobes reject and she dies. But at least Cody reconciled with his family! Which is really the entire point!
This book made me angry to read. If you've even considered reading it, don't. If you have read it, I'm very sorry you had to endure it. There are so many wrong, wrong, WRONG things in it. Even the terminology is wrong. Ali has a "compression vest", --she means the thAIRpy vest, which she doesn't describe accurately. She talks about Ali having four inhalers but never mentions an aerosol machine, which is what most CF patients use regularly. Inhalers are like a quicky treatment. Honestly, she treats CF more like asthma. Ali's mom does PT on her at one point, and Cody FREAKS OUT, like Ali's being abused or something. I taught one of my pre-tx boyfriends how to do my chest PT for when we spent the weekends at his parents' and I couldn't lug the vest (mine was one of the first ones, and it weighed about 1500 pounds...). It's not that scary, it's not even gross to watch! It's not like Ali's mom was inserting a chest tube.
The whole thing is just DRENCHED in melodrama. And Ali isn't even very likable! She's really bitter about having CF. Of course her sister, Anna, had it too, and of course, Anna died, so Ali is SUPER bitter. I'm not denying that you can get bitter. Heck, it's probably normal. But Ali is of the "ignore it and it doesn't exist" school.
It's so cliche, and so awfully written, that no one should ever, ever pick this up. Instead of doing a service to people with CF, like A Little Love Story does, by protraying us and our lives realistically and truthfully, Kingsbury makes Ali a stock character whose medical drama serves only as a plot point.
If you are interested in GOOD CF books, this is what I can recommend:
A Little Love Story
Breathing For A Living
Cystic Fibrosis: A Guide for Patient and Family (Hardcover)
Or, you can shoot me questions at firstname.lastname@example.org