Friday, September 20, 2013

A review of Roy E. Ice's Julie: The Courage To Breathe...

As I mentioned in my last post, Epinions.com is going through some major changes right now that is going to make posting reviews, especially of self-published books, a big challenge.  I like to review every book I read and I have found that the self-published books are often pretty good.  They deserve to be reviewed.  Hell, I find myself buying them as often or more often than books that have been vetted by big publishers.

So anyway, I just finished Roy E. Ice's self-published book, Julie: The Courage to Breathe.  This book, available in hardcover, paperback, and Kindle editions, was published in March of 2013.  I picked it up in June, when I had apparently gone on a tear buying books about cystic fibrosis.  Though I don't personally know anyone with CF, I have done some reading about this devastating genetic disease.  A lot of advances have been made in the past decade or so in understanding and treating cystic fibrosis.  Still, it remains a deadly, demanding disease that often kills people when they are very young.

Roy Ice explains that he met his wife, Julie, when they were teenagers.  He fell in love with her, even though she had an annoying cough that she couldn't seem to get rid of and seemed to get pneumonia very easily.  She thought she had asthma.  So did her doctors, even though when she was as young as five years old, she showed signs and symptoms of cystic fibrosis.

Though Roy and Julie had met when they were in high school, it took a few more years before they dated.  Ice married Julie when they still young adults.  He'd done a stint in the military and served in Desert Storm/Desert Shield, then came home to Kentucky.  Julie still had that irritating cough that would erupt at the most inopportune times.  Roy would encourage Julie to stifle it because it often embarrassed him.

One day, about eight months into their marriage, Julie got very sick.  Roy took his wife to the hospital, where a doctor tried to diagnose her yet again with pneumonia.  Roy doubted that was the case and demanded that a pulmonologist examine Julie, much to the dismay of the internist who had incorrectly assumed that Julie had pneumonia once again.  The lung specialist suspected cystic fibrosis and tested her.  At age 23, Julie had tested positive for CF.  At the time, most CF patients were dead before their 29th birthdays.

In a folksy, plainspoken way, with a generous smattering of humor, Ice writes about what it was like to find out his beloved wife had a deadly genetic disease.  Cystic fibrosis is a very difficult disease to live with, though Julie's case must have been relatively mild up until she got so sick at age 23.  Roy had to learn how to pound on his wife's tiny body to shake loose the thick mucous that forms in CF patients.  He also had to learn how to be a good advocate for his wife, standing up to doctors and even leaving against medical advice when they didn't seem interested in helping her.

When Julie was 41 years old, her body began to wear out.  She needed a lung transplant.  The fact that she had made it to 41 was, in and of itself, a miracle.  But if she didn't get new lungs, she would die.  Ice explains how he and Julie ended up at the University of Kentucky in Lexington and Julie spent about three months waiting for her new lungs.  Interestingly enough, Julie's doctors passed over a number of lungs before Julie finally got them at around Christmas time in 2011.  Apparently, a lot of organ donors in Kentucky are smokers.

My thoughts

For a self-published book, I think Julie: The Courage To Breathe is pretty damn good.  Ice has an engaging writing style and his love for his wife is plainly evident.  However, I would be lying if I said this book, as good as it is, is five star worthy.  If I were basing my rating on the love story alone, it would rate five stars.  But Ice's book has a number of typos and editing glitches that weaken it somewhat.  At one point, he references that Julie is in the hospital on December 14, 2012, which wasn't even a year ago.  But then a couple of pages later, the date is December 18, 2011.  Obviously, 2012 was a typo that whoever was editing didn't catch.

I read the Kindle version of this book.  At the end, Ice includes a few photos of Julie, whose weight, by the time of her transplant, had dwindled down to 61 pounds.  He mentions this fact several times, though it's hard to really see what that means until you see a color photo of Julie post transplant, still looking really gaunt, but managing to smile.  There's another photo of her hooked up to a bunch of machines, but you don't really get a sense of her physical frailty because she is surrounded by tubes and machines.  There's what appears to be another photo in my version of the book, but apparently it didn't post properly; instead, there's a tell-tale white box with a red X in it.

Also, Ice doesn't give a whole lot of insight into what CF is and what it does to the body.  His story is long on anecdotes, but a bit short on facts.  I had read Frank Deford's Alex: The Life of A Child and Anabel and Isabel Stenzel's book, The Power of Two, which is about twins with cystic fibrosis.  Those two books were more informative about what CF is, so I already knew about that.  Ice doesn't include as much information about the actual disease, so those who know nothing about CF probably won't learn much about it by reading this book.

I would love to see this book get reprinted after it's been read by a good editor who can clean up the typos and glitches.  It's a story well worth reading.  I was moved by Ice's obvious love for his wife and his willingness to see her through such a devastating disease.  Moreover, Roy and Julie just seem like a really nice couple.  They appear to be people I'd like to know.  All proceeds from this book will be donated to the Cystic Fibrosis Foundation, which is no doubt a very worthy cause.

Anyway, if I were posting this on Epinions, I'd give it a solid four stars.  If the editing glitches were cleaned up, I'd give it five.  I had a hard time putting this book down once I got started.  You can read a news article about Julie and Roy Ice here.  You can read about Julie's "Dream Team" here.    

I hope you enjoyed reading this review.  If Epinions doesn't clean up its act soon, I may start putting all my book reviews here... or maybe start yet another blog...









  

6 comments:

  1. Julie's case was eerily similar to that of my pseudoaunt Jillian. She, too, was diagnosed at 23 even though she had a doctor for a father and a R. N. practittioner mother. No one knos how the neonatal screening missed her. She was always sick and got pneumonia at least once every year of her life. Her parents took her all over the country tryng to find out what was wrong, as the diagnosis was always asthma, chronic bronchitis, and croup.

    her husband was in his 3rd year of medical school when he noticed she ALAYS tasted salty if he kissed her forehead. her brother, who were either doctors or med schoool stuents, laughed it off and said she wa sweaty from exercising and that's hy she was salty. They were soon eating crow.

    Her husband does most of the pounding the mucus out of her, but all the doctors in the family, including my dad, knwo how to do it, and she sometimes has her lungs suctioned as well.

    She always exercised, which is essential for cF patients except when they have fevers or are too weak. she was an nCAA d/iv i tennis player, although th utah winters almost killed her.Florifda wasn't good for her , either, because it was to hott and stuffy to breathe. she odes well in the foggy coastal areas of CA.

    Ultimately she'll be looking at a lung transplant, but they're hoping that they can hold off for several years. her lungs haven't gone downhill since the diagnosis since she's on really good drugs and gets regular therapy.

    It's weird that both Jillian and Julie were diagnosed at 23.

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  2. It IS weird that they were both diagnosed so late, especially since Jillian comes from a medical family. I had a social work professor who had a son with CF. She used to talk about him in class. I think he was about my age and she said he was getting married. I wonder how he's doing now... or if he's still living.

    CF is such a horrible disease.

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    1. P.S.... This post has already gotten more views than the vast majority of the posts I've put up on Epinions. That's very telling.

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  3. I wonder how many people know someone or know someone who knows someone, etc., who is affected by CF.

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  4. Greetings from Ireland! I found your blog through looking up Alex Deford. I remember watching the film about 20 years ago. Very sad. CF really is an awful disease.

    You may also be interested in the book "Salty Baby" by Irish CF sufferer Orla Tinsley

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    1. Hi Enie!

      Thanks for the book suggestion. I will check it out!

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