Tag Archives: lung transplant

book reviews, healthcare

A review of Salt in My Soul: An Unfinished Life, by Mallory Smith…

I remember when I first read about the genetic disease, cystic fibrosis (CF). It was December 1985, and my parents had a subscription to Reader’s Digest. That month, the condensed book excerpt was Frank Deford’s heartbreaking memoir, Alex: The Life of a Child. Deford had written this achingly beautiful account of his daughter, Alexandra, who died from CF when she was just eight years old. Alex was almost a year older than me, so her story was particularly poignant as I read about her as a 13 year old. Later, I bought Deford’s book and read it more than once.

Ever since I first learned about CF through Alex’s story, I’ve been interested in reading more about people who have lived with and died from it. Cystic fibrosis is a disease that affects everything about living. Though there have been some significant medical science breakthroughs that have made it possible for many CF patients to live much longer than Alex did, the sad truth is, it’s a disease that still claims so many young, promising, amazing people long before they should die.

Mallory Smith was, like so many CF patients seem to be, an extraordinary young woman. She died on November 15, 2017 at age 25, having accomplished incredible things during her short life. Her passing came about two months after she received a double lung transplant at the University of Pittsburgh Medical Center (UPMC). When she was still living, Mallory was a prolific writer. She kept a diary while she was struggling with cystic fibrosis.

After her death, Mallory’s mother, Diane Shader Smith, edited and published her diary, which she started when she was 15 years old and continued until her death at age 25. The book is called Salt in My Soul: An Unfinished Life. The title refers to a universal condition of babies born with CF, salty skin. It’s such a well known phenomenon, there’s even folklore about it:

“Woe to the child who tastes salty from a kiss on the brow, for he is cursed and soon will die.”

Salty skin is a hallmark of babies born with cystic fibrosis, a disease primarily of the lungs that is passed down via genes from both parents. Mallory was also a native of California and grew up near the Pacific Ocean. She was a swimmer, among so many other things. As I read about her medical travails, I couldn’t help but be amazed by all she managed to do with her life, in spite of her inevitably fatal illness. And, based on what I read in Salt in My Soul, she managed to do most of it with a positive, uplifting attitude, that won the respect of thousands of people who were lucky enough to know her personally.

Mallory was diagnosed with CF in 1995, at the age of three. She grew up having to endure frequent hospitalizations, taking endless medications (about 60 pills every day), having daily therapy sessions to loosen and expectorate the thick mucus caused by CF, and becoming all too familiar with hospitals in Los Angeles and San Francisco. Like most young people, Mallory had dreams of traveling the world and doing great things in her life. So, even though she was very sick at times, Mallory did all she could. She somehow managed to get excellent grades, participated and captained three sports teams, and got elected prom queen. She was clearly very likable and inspirational and based on her book, had so many friends and loved ones who adored her.

When she was choosing colleges, Mallory applied to Stanford University, not just because of its stellar academics and excellent reputation, but also because it had a hospital with CF experts on staff. Mallory’s college career was punctuated with hospital stays and doctor’s appointments, yet she was determined to live as normally as possible. She had roommates, and they became accustomed to everything she needed to accommodate her disease. Mallory eventually graduated Phi Beta Kappa from Stanford with a 4.3 GPA and a major in human biology with a concentration in environmental anthropology. After graduation, she became a freelance writer and lived in Los Angeles for awhile, until her health required her to move back to San Francisco, to be closer to her Stanford doctors.

When Mallory was a teenager, her lungs became infected with bacteria, including a deadly form of  Burkholderia cepacia that became a superbug highly resistant to antibiotics. CF is bad enough when the bacteria involved are not superbugs; however, Burkholderia cepacia colonization made it much more difficult for Mallory to qualify for the double lung transplant she desperately needed to survive. Salt in My Soul covers the story of Mallory’s fight for a transplant, which doctors were reluctant to do. The superbug infection makes it much less likely that the transplant will be successful, as the bacteria can still colonize in the patient’s lungs and kill them quickly. Ultimately, that is what happened in Mallory’s case.

Even as she was dying, Mallory’s family and friends were trying to find a new treatment for her. Her parents reached out to an epidemiologist whose husband had “phages” treatment, a new and experimental protocol that has shown some promise in helping people vanquish superbug infections. They were just about to try it with Mallory when her health went past the point of no return.

The phages treatment was one that Mallory never had the chance to try, but she did help research at least one drug. Mallory was being treated with a medication called Ataluren, which had seemed to be helping her. However, she experienced multiple episodes of hemoptysis (coughing up blood), and was taken out of the study. The drug was later discontinued.

This book covers the incredibly challenging financial issues faced by families who battle CF. I got the sense that Mallory’s parents were fairly well off financially, and they did have insurance. However, like all insurance companies, Blue Cross didn’t want to pay for certain necessary services. When it came time for her transplant, it was offered at a hospital that was not in Blue Cross’s network, and officials there refused to approve her for coverage. It took a minor miracle to straighten out that mess, and I was left sitting there, shaking my head in amazement. If I hadn’t married Bill, I might have wound up working for a health insurance company, as one of my graduate degrees is in public health- health administration. Health insurance is kind of in my wheelhouse… but reading about the dirty dealings Mallory’s family had to endure with their health insurer made me glad that’s not my life’s work. Health insurance companies in the United States literally gamble with people’s lives.

Mallory’s story also includes insight as to what it was like for her to have a love life while suffering from CF. Mallory had a very devoted boyfriend named Jack who was always there for her, just as her parents were. Jack includes some entries in the book, writing about how he knew his love affair with Mallory would end in tragedy.

I just finished reading Salt in My Soul this morning. While I don’t think it affected me in quite the profound way Frank Deford’s book, Alex: The Life of a Child did, I did find Mallory Smith’s story very moving and, at times, infuriating. A few days ago, without naming the book, I wrote about how Mallory was mistaken for a coke fiend because of her illness. She almost got arrested, simply because a bathroom attendant thought she’d been doing lines of cocaine in a public restroom. No… she had been suffering from one of the many symptoms of her fatal disease. It was just one more indignity and inconvenience she had to endure, thanks to being born with a genetic anomaly.

In another passage, Mallory’s mother wrote about how, even though she had a handicapped placard on her car, a tow truck driver in Pittsburgh tried to extort $200 in cash from her. It took the kindness of strangers to prevent him from taking the car and potentially putting Mallory’s life at risk, due to the fact that her necessary medical equipment was in it.

I felt a little guilty about my own persistent bad attitude about life. All Mallory wanted to do was live her life and achieve her dreams. So many of us are born with healthy bodies, and yet we fail to live up to our own potential. And so often, when I read about someone with CF, I read about an extraordinary person who does all they can just to live. I can think of so many people with CF who have achieved the incredible, even though they suffer(ed) from such a devastating disease that robbed them of so much– independence, dignity, normalcy, even the most basic of freedoms. And at the end of her life, after Mallory had had several “dry runs”, waiting for new lungs, she suffered so much that she had brief wishes for death. I almost wonder if it would have been better, and she might have lived longer, if she hadn’t had the surgery. But I know from reading Salt in My Soul, Mallory desperately wanted to try everything.

I guess if I can take anything from reading this book, it’s that you really can do things that seem impossible, if you put your mind to it and set your heart on success. Good health is a priceless gift that more people should appreciate and embrace. So many extraordinary people would love to simply be healthy. For that lesson alone, I think more people should read Mallory’s story. I give it five stars out of five. There’s a link to the book on Amazon at the bottom of this page.

Salt in My Soul has also been made into a documentary, and it can be watched on many of the most popular streaming platforms, including Google Play, Vimeo, and Apple TV, as well as Comcast, Cox, and Spectrum on demand. Below is the trailer for the film.

The trailer for Salt in My Soul.

Edited to add, August 23, 2023: I watched the documentary yesterday. It was well worth viewing. Mallory was such a beautiful, remarkable soul. No wonder so many people adored her for her all too brief life. I highly recommend the documentary! I downloaded it from Apple Plus.

As an Amazon Associate, I get a small commission from Amazon on sales made through my site.

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book reviews, healthcare

Repost: The Power of Two: A Twin Triumph over Cystic Fibrosis

I am reposting this review, originally written for Epinions.com in 2010, as/is, since I mentioned this book in my review of Roy E. Ice’s book about his wife’s experiences with cystic fibrosis. Sadly, Anabel Stenzel died in 2013. Isabel Stenzel Byrnes is still living in San Francisco, California.

Like a lot of Americans, I’ve been keeping up with America’s Got Talent this summer. I had previously gotten hooked on NBC’s talent contest three years ago, but had missed it over the two years my husband Bill and I spent in Germany. I was eager to see what kinds of people would be showing off their talents, or lack thereof. This year, Christina and Ali, two singing sisters from Idaho Falls, Idaho, performed for America and shared that they were two of four siblings who suffer from the genetic disease, cystic fibrosis (CF). Cystic fibrosis is a devastating illness that affects all facets of life, from breathing to digesting food to eliminating waste. Christina and Ali had been told they would never be able to sing, since CF damages the lungs of those who suffer from it. But sing they did, and while I have heard better singers, the fact that they were able to perform as well as they did was astonishing to me.

I mentioned Christina and Ali on a messageboard I frequent, also mentioning that I had also read Frank Deford’s incredibly touching book Alex: The Life of a Child. Deford’s daughter, Alexandra, had died of CF in 1980 at age 8. She was almost a year older than me and I found her story very moving. One of the posters on the messageboard then recommended that I read The Power of Two: A Twin Triumph over Cystic Fibrosis (2007). Written by twins Isabel Stenzel Byrnes and Anabel Stenzel, the book offered a more recent account of living with CF. Now that I have finished the book, I can say that I was richly rewarded by the experience.

Isa and Ana

Like Alexandra Deford and me, Isabel (Isa) and Anabel (Ana) Stenzel were children of the 1970s. The twins were born in January 1972 in Hollywood, California to a Japanese mother and a German father and an older brother named Ryuta. It’s hard to imagine it, but those were the days before ultrasounds and genetic tests. Hatsuko and Reiner Stenzel didn’t even know they were having twins. Reiner Stenzel was a world-reknowned physicist and was out of town when his wife went into labor. She gave birth alone.

Days later, Ana had not yet passed her first meconium and required surgery to unblock her intestines. A doctor realized that meconium ileus was a sign of cystic fibrosis. Although cystic fibrosis is extremely rare in Asians, the doctor ordered a “sweat test” for both girls. The sweat test measured the amount of sodium chloride (salt) in the girls’ sweat. Both tests came back with abnormally high levels of salt, which confirmed that the twins had cystic fibrosis. The doctor informed Reiner and Hatsuko Stenzel that their daughters had CF, ultimately a fatal disease that would probably claim their lives during early childhood.

Thirty-eight years later, both twins are still living and working in Palo Alto, California.  They are both graduates of Stanford University and the University of California, Berkeley.  One twin is married. Both have satisfying careers, one as a genetic counselor and the other as a social worker. Both have traveled extensively and both have had lung transplants that later allowed them to compete in the Transplant Games. Together, they beat the long odds that were stacked against them at birth.

My thoughts

I think this is an amazing book on many different levels. First off, The Power of Two appeals to me because I’m about six months younger than the twins are. Isa and Ana take turns writing chapters and they start at the very beginning of their lives. Although I don’t have CF, I am a child of the 70s and 80s, so I understood a lot of the cultural references they made and felt like I could relate to them as peers.

I was fascinated by the story of how their parents, two immigrants who came from very different places, met in America and became a couple. Both Hatsuko and Reiner Stenzel were very much affected by the horrors of World War II. They left their homelands for something better in the United States and ended up getting married. The odds that they would both carry the defective gene for cystic fibrosis were very slim. CF is almost unheard of in Asians. When the twins’ mother, Hatsuko, called her own mother in Tokyo to enquire about her heritage, she was assured that the defective gene must have come from her father, who had died in Siberia as a prisoner. Somewhere along the line, Hatsuko’s father must have had a Caucasian relative.

Twins are fascinating to read about anyway, since they often have their own languages and ability to relate to each other. Isa and Ana were very close to each other for another reason; they relied on each other for the vital percussive therapy that allowed them to keep their lungs clear of the deadly mucous that collects in the lungs of CF patients.

And, as it turns out, Isabel Stenzel and I have something in common. We both earned dual master’s degrees in social work and public health. And while I am not primarily of German descent, I did just spend two years living in the twins’ father’s homeland.

Isabel and Anabel are excellent writers. They don’t hold back as they describe what it’s like to have cystic fibrosis. They very honestly convey the frustration they felt at always being sick, yet they also strived to not allow their illness to hold them back from chasing their dreams. I found myself marveling at all they were able to do as youngsters. I also admired how much they value their lives, even as they admitted to how much suffering they endured due to their disease.

I will warn that those with delicate sensibilities regarding language may not like that the twins liberally use profanity. Personally, I thought the profanity was certainly justified, given their situation. It also gave their voices a touch of realism and made them seem very human. But if swearing offends you, be advised that they don’t hold back at all. They also include some frank discussion about sex. Again, I liked this aspect of the book, but realize that some readers might not appreciate it.

The Power of Two includes a photo section. One of the most riveting photos in this book is that of Isabel post lung transplant, saying goodbye to the scarred, diseased, terribly damaged lungs that had miraculously sustained her for over thirty years. These women had spent their lives watching their friends die of cystic fibrosis. They knew that having a transplant was also no guarantee that things would get better. People who have transplants must suppress their immune systems to prevent rejection of the new organ. They knew that they were trading one health problem for another and, in fact, had seen several friends with CF die after their lung transplants. And yet, their healthy new lungs did give them new lives, and allowed them the opportunity to educate others about this disease and give them hope.

Overall

I definitely recommend The Power of Two because it’s a fascinating story on so many levels. Certainly, it’s good reading for anyone whose life has been touched by cystic fibrosis. It’s also a good book for those who are interested in a story of how World War II impacted lives. And people who are twins may also like this book because of the insight these women give into their experiences as twins with CF.

This is a powerful, inspirational book. It gets five big stars from me.

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book reviews, healthcare

Repost: A review of Roy E. Ice’s Julie: The Courage To Breathe…

I wrote this book review for my original Overeducated Housewife blog on September 20, 2013. It appears here as/is. Edited to add on 8/20/23– Julie Ice died on May 10, 2023.

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 Byrnes’ 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.  

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… 

As an Amazon Associate, I get a small commission from Amazon on sales made through my site.

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