Tag Archives: Sick Girl

book reviews, healthcare

A review of Amy Silverstein’s My Glory Was I Had Such Friends: A Memoir…

On April 18 of this year, the New York Times ran a beautifully written op-ed by the author, Amy Silverstein. I knew who Amy Silverstein was, because about 15 years ago, I read her amazing book, Sick Girl, which she published in 2007. Reading Sick Girl was life changing for me. At the time, we were living in Germany the first time, and I had ordered the hard copy of the book, because I didn’t own a Kindle. I’m not even sure if Kindles existed at that time. I think I decided to buy Silverstein’s book about her experiences as a heart transplant recipient after reading a review of Sick Girl in People. I love books about real life health crises… or, at least I used to love them when I was younger and the crises seemed less like something I might experience personally.

I read Sick Girl in 2008 and reviewed it for Epinions.com. I reposted my review here, combining it with another review I wrote about a book called Change of Heart, which was written by Claire Sylvia, another transplant recipient. The two books were very striking to me, as they had such different moods to them. Claire Sylvia’s book about being a double transplant recipient (heart and lung) was overwhelmingly positive and grateful. After she wrote her book, Claire Sylvia went on to also receive a kidney transplant. She died August 19, 2009, 21 years after her heart and lung transplant.

Amy Silverstein’s book, Sick Girl, by contrast, was a lot more negative and honest. Silverstein wrote a no holds barred account of what it actually means to be a transplant recipient. She received her first heart in 1988, when as a 25 year old law student, she had health problems that revealed a congenital heart defect. In Sick Girl, Silverstein explained that many people believe that organ transplants are miraculous cures for people whose organs fail. But really, organ transplants just trade one health problem for another, as recipients have to take medications that keep their immune systems from destroying the foreign organs. Amy Silverstein had a life expectancy of about ten years in 1988, after she accepted a heart belonging to a 13 year old girl who happened to die in an accident at just the right time to save Amy’s life.

In 2007, when Sick Girl was published, Amy had already defied her doctors’ expectations for her survival by an additional ten years. But even though she’d had 19 years, when she was expected to only have ten, and even though she’d become a wife and adopted her son, Casey, Amy had seriously contemplated suicide. She was tired of being a “sick girl”. In 2005, when Amy was thinking about taking her own life, she was fixated on how difficult the regime was, and how she didn’t want to live that way anymore.

When I read Amy’s book, written a couple of years after she had those suicidal feelings, I empathized. I could totally understand why she was so tired of being sick and tired all the time. She had to submit to a grueling regime that included procedures like heart biopsies, and taking medications that made her throw up and put her at risk for every virus in the atmosphere. A simple cold could leave her bedridden for weeks. And people didn’t understand what it was like for her and made clueless comments that were infuriating in their innocence… and ignorance. So she wrote her book to educate the masses.

Not everyone liked Sick Girl. A lot of people thought Amy Silverstein was ungrateful and unpleasant. Some people found her whiny and self-absorbed. Quite a few folks seem to believe that anyone who gets an organ transplant should shut up and be eternally grateful, even if they are constantly sick and having to see doctors for painful, invasive, and expensive treatments and screenings. I, for one, heartily disagree, because if no one ever complained about the experience of having transplanted organs, scientists and doctors would never know what to improve about the experience for future patients. Moreover, I don’t think that just because someone gets a new lease on life, they should be expected to just shut up and act happy. I also don’t believe Amy Silverstein was ungrateful.

Amy’s first heart lasted an astonishing 24 years, before it started to fail due to the ravages of her immune system, antibodies that her body developed to attack the heart, and the many powerful anti-rejection drugs she had to take to stay alive. She needed another heart transplant, but having undergone one already and knowing what receiving a second heart would mean for her, Amy Silverstein hesitated. But then she got by with a little help from her friends.

***

In 2017, Amy Silverstein wrote another book, titled My Glory Was I Had Such Friends: A Memoir. I downloaded the book in September 2020, but never got around to reading it until this month. I read it after reading Amy Silverstein’s obituary in The New York Times, which appeared just a few weeks after her lovely essay, titled “My Transplanted Heart and I Will Die Soon”, appeared in mid April. In the essay, Silverstein wrote that she had taken excellent care of her second heart, which she received in 2012. However, because of the drugs she had taken since 1988, Amy developed several types of cancer. From the op-ed:

Organ transplantation is mired in stagnant science and antiquated, imprecise medicine that fails patients and organ donors. And I understand the irony of an incredibly successful and fortunate two-time heart transplant recipient making this case, but my longevity also provides me with a unique vantage point. Standing on the edge of death now, I feel compelled to use my experience in the transplant trenches to illuminate and challenge the status quo.

Over the last almost four decades a toxic triad of immunosuppressive medicines — calcineurin inhibitors, antimetabolites, steroids — has remained essentially the same with limited exceptions. These transplant drugs (which must be taken once or twice daily for life, since rejection is an ongoing risk and the immune system will always regard a donor organ as a foreign invader) cause secondary diseases and dangerous conditions, including diabetes, uncontrollable high blood pressure, kidney damage and failure, serious infections and cancers. The negative impact on recipients is not offset by effectiveness: the current transplant medicine regimen does not work well over time to protect donor organs from immune attack and destruction.

After I read the New York Times op-ed in April, I remembered that I had downloaded Amy Silverstein’s second book about her second heart transplant, and how her friends had helped her (and her husband, Scott) through the experience. I made a mental note to read that book, but didn’t get to it until I read Amy’s obituary, which ran in the New York Times on May 16, 2023. Amy died on May 5, 2023. Two weeks after reading about her death, I’ve finished reading My Glory Was I Had Such Friends. Once again, I’m left very moved and better educated about organ transplants than I was before I read the book.

Although Amy’s op-ed indicates that transplant science hasn’t changed a lot since the late 80s, when she received her first heart, her second book indicates that things have actually changed somewhat. Because of her unusual circumstances, and the fact that she’d had her first heart for so long, Amy Silverstein was advised to go to Cedars-Sinai Medical Center in Los Angeles, California, which has the most advanced transplant program in the United States. Amy’s first heart transplant was done in New York, and she’d spent the ensuing decades seeing doctors in New York. But even though they knew her better than anyone else, her doctors told her she should be treated by Dr. Jon Kobashigawa, a renowned transplant surgeon there. So that’s what Amy did. She packed and went cross country for treatment in Los Angeles. But she needed help, and that’s where her posse of friends came into the picture. They all had their own unique strengths that helped Amy survive in her hour of need.

Amy Silverstein was blessed with several female friends who loved her dearly. And those friends picked up their lives to be with Amy and her husband, Scott, as they waited for a new heart to become available to her. It was a very difficult time, and in the brutally honest and somewhat negative style of her first book, Silverstein explains how difficult it was… and how much a lot of it really sucked. Again, I could hardly blame her. Some of what she endured sounded absolutely horrifying. Also, as Amy got older, she became much less interested in indulging the egos of some of the people who treated her. I found her stories of what she endured both fascinating and dreadful… and again, I could hardly blame her for complaining. Meanwhile, she had these devoted friends who were there for her, in spite of Amy’s apparently difficult and demanding personality. There must have been good reasons for them to love her as much as they obviously did.

When I read the reviews on Amazon.com, I wasn’t surprised to see that, once again, some readers found Amy Silverstein abrasive and ungrateful. And, once again, I think they missed the point and probably didn’t think very long and hard about what Amy was enduring. As the negative reviewers complained about Amy Silverstein’s apparent lack of gratitude, they failed to have any empathy for her situation. It’s easy to think that if you or I were in such a grave situation, we wouldn’t be perfect patients, endlessly patient, sweet, compliant, and never once failing to constantly thank everyone profusely. But the reality is, if you are, yourself, in that situation, cooped up in a hospital room, unable to breathe or sleep, using a pacemaker that constantly sends painful shocks into your body because your heart is so diseased, and not even able to enjoy sunlight or fresh air, your attitude might suck, too. You might become demanding and unpleasant. Moreover, I don’t think Amy Silverstein was, at all, ungrateful.

If Amy Silverstein had really been an ungrateful patient, she never would have lived for as long as she did. Amy Silverstein respected both of her donors by taking excellent care of both hearts. An ungrateful person would not have done that. They would have simply given up, stopped taking their medications with the unpleasant side effects, quit seeing their doctors, and just up and died. Amy’s second donor was also a thirteen year old girl, who had been an athlete. After she received her second heart, Amy recovered within weeks. She went running, because she felt well… In fact, she felt better than she had since before her first transplant. Of course she was grateful! And she got another ten years to enjoy that heart before she died… not because the heart failed, but because of the drugs she had to take to keep it beating. I would imagine that the COVID-19 pandemic was especially hard for Amy, who was regularly wearing face masks years ago, because she was a transplant patient.

When I read My Glory Was I Had Such Friends, I could relate to Amy Silverstein’s story, and I knew she wasn’t blowing any smoke up my ass about what it’s like to be a transplant recipient. Yes, it’s important to be grateful, but as I mentioned up post, if no one ever complains, then improvements can’t be made. No one would ever see the need for improvements. That makes it harder for the patients of the future. Moreover, sometimes people should be told the brutally honest truth, so they can have a more realistic perspective. Yes, organ transplants are kind of miraculous, but they aren’t a cure. Amy Silverstein helped me realize how fine the line is between life and death for transplant patients. She would have turned 60 on June 3rd of this year, and she managed to accomplish so much in her lifetime. No one expected her to live beyond age 35, yet here we are. Maybe the reason she did live for so long is because she was so very “difficult” and “demanding”. Not complaining might have meant giving in… and giving up.

Anyway, I really enjoyed both of Amy Silverstein’s books, and I am grateful that she shared her experiences so candidly. I agree that sometimes she was negative, and I’m sure some staff at the hospitals she attended thought of her as a pain in the ass. But, I found Amy’s accounts of her experiences authentic, realistic, and important, and she is a very expressive writer.

I’m glad Amy didn’t simply shut up and stop whining. Those who found Amy insufferable can now take comfort that she won’t ever bother anyone again with her “negativity”, but she no doubt taught countless healthcare professionals through her remarkable case and astonishing longevity. Anyone who regularly reads my blog probably knows that I’m big on being real and occasionally “inappropriate”, warts and all. For me, Amy Silverstein’s books check all the boxes. I highly recommend them both.

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

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communication, complaints, condescending twatbags

Reading comprehension is an increasingly rare skill…

Happy Wednesday, everybody. I’m pleased to report that I feel a lot better today than I did yesterday at this time. My only complaint is the vague and annoying dyspepsia I’ve been dealing with for awhile. It’s probably an ulcer, and I probably should see a doctor about it. I probably won’t, though. Pepcid-AC and Barry Manilow for the win. 😉

“I wanna pull on your coat about something…” in the words of the fabulous Tom Waits.

I’m becoming convinced that people have lost basic reading comprehension skills. I’ve come to this conclusion by reading comments on the Internet.

Early this morning, I woke up needing to answer the call of nature. I couldn’t get back to sleep once I’d done the deed, so I decided to check in on the world. I noticed an op-ed in The New York Times written by Amy Silverstein (unlocked), author of the excellent book, Sick Girl, and its follow up, My Glory Was I Had Such Friends. I read the print version of Sick Girl when it was first published, in 2008 or thereabouts. I think I have the other book in my “to be read” queue.

I learned a lot from Sick Girl, which was about Silverstein’s experiences being the recipient of a donated heart. Her first donated heart, which she received in 1988, lasted an astonishing number of years until Silverstein had to have another transplant. She writes:

My first donor heart died of transplant medicines’ inadequate protection of the donor heart from rejection; my second will die most likely from their stymied immune effects that give free rein to cancer.

Silverstein’s fantastic and informative op-ed (which is also on her official Web site) is about how transplant medicine hasn’t evolved much during the time she’s been a patient. Most people are woefully ignorant about what it means to receive a transplanted organ. They believe that a transplant is a cure, not realizing that having a transplant means trading one medical problem for a host of others. Taking medications to suppress immunity means being vulnerable to every germ out there. It means having higher risks of diabetes and cancer. And yet, since 1988, the protocols haven’t changed much. Amy Silverstein has already lived an astonishingly long time, but she writes that she’s coming to the end of her longevity.

Plenty of people on Facebook felt the need to chime in without having read the article. Quite a few offered thoughts and opinions that were uninformed and completely irrelevant. Some complained about the paywall, apparently assuming that newspapers are charities or public services. Those who read the article were praising it for being informative, well-written, and moving. Others were just making noise. One guy wrote this comment, not realizing that Ms. Silverstein is still alive.

Why is an article like this behind a paywall? I hope the money is going to the author and her estate.

I’ve already complained about people who whine about having to pay for good journalism, so I will try to keep that to a minimum in this post. I do think that people expecting newspapers to provide free content is a major symptom of the main issue, though. People don’t value good writing. They expect it to be provided free of charge. A lot of the people who complain are also people who support capitalism and lament government “freebies”. They’re also often the same people who complain about the idea of having to buy insurance, but then use GoFundMe to pay for their medical care and funerals. Isn’t that interesting?

Anyway, I’m convinced that because these folks don’t want to pay for the stuff they read, they read a lot less. And what they do read, they don’t pay close attention to, so they miss the main ideas of what they’re reading. Then they share their crap with everyone. That problem extends, even when they’re reading other things, like books.

Consider this. I’ve been reading a newly published book that was originally written in Romanian. The title of the book is Nadia Comaneci and the Secret Police: A Cold War Escape. When I read that title, I don’t get the idea that I’m going to be reading Nadia Comaneci’s life story, per se. This is a book about her fame, and how it caused her to be constantly surveilled by the Securitate.

I read and reviewed Nadia Comaneci’s Letter to a Young Gymnast years ago. That’s her life story, expressed in her own words. The book I’m reading now includes elements of her life story, but the focus is on how she escaped Romania after having been a tool for the state. There’s a lot of discussion about Bela and Marta Karolyi, and their alleged abuses of the Romanian women’s gymnastics team members. The Karolyis were also closely watched by the Securitate, as was choreographer, Geza Poszar, who was allegedly an informant.

Nadia Comaneci and the Secret Police was published in Romanian a few years ago, but only very recently became available to those who wanted to read it in English. I’ve been eagerly awaiting this book, and would have jumped right in when I received it, but had to finish the book I was reading about Rosemary Kennedy. Below is the description of Nadia Comaneci and the Secret Police, as provided by Amazon.com.

Nadia Comaneci is the Romanian child prodigy and global gymnastics star who ultimately fled her homeland and the brutal oppression of a communist regime. At the age of just 14, Nadia became the first gymnast to be awarded a perfect score of 10.0 at the 1976 Montreal Olympic Games and went on to collect three gold medals in performances which influenced the sport for generations to come, cementing Nadia’s place as a sporting legend. 

However, as the communist authorities in Romania sought an iron grip over its highest-profile athletes, Nadia and her trainers were subjected to surveillance from the Securitate, the Romanian secret police. Drawing on 25,000 secret police archive pages, countless secret service intelligence documents, and numerous wiretap recordings, this book tells the compelling story of Nadia’s life and career using unique insights from the communist dictatorship which monitored her.

Nadia Comaneci and the Secret Police explores Nadia’s complex and combustible relationship with her sometimes abusive coaches, Béla and Marta Károlyi, figures who would later become embroiled in the USA Gymnastics scandal. The book addresses Nadia’s mental struggles and 1978 suicide attempt, and her remarkable resurgence to gold at the Moscow Olympics in 1980. It explores the impact of Nadia’s subsequent withdrawal from international activity and reflects on burning questions surrounding the heart-stopping, border-hopping defection to the United States that she successfully undertook in November 1989. Was the defection organised by CIA agents? Was it arranged on the orders of President George Bush himself? Or was Nadia aided and abetted by some of the very Securitate officers who were meant to be watching the communist world’s most lauded sporting icon? What is revealed is a thrilling tale of endurance and escape, in which one of the world’s greatest gymnasts risked everything for freedom.

Is there anything in that blurb that indicates that this book is solely Nadia’s life story? Hell, just reading the title tells me that this isn’t a book about Nadia’s family or career. However, below was what one reviewer wrote.

I’m left wondering if the above reviewer understood what the book’s subject matter was meant to be. This is a book about the Romanian government’s treatment of Nadia and her teammates and coaches, not Nadia’s life story. The title should have given the above reviewer a clue.

Moving on to the next example…

I subscribe to The Local: Germany, an online publication for English speakers in Germany. It offers information about local news and useful topics for us foreigners living in Germany. People constantly complain about the fact that the content is behind a paywall.

Yesterday, there was a link to a “free” article asking “What’s Life Like for Foreigners in Small-Town Germany”. Again, it’s free to read, because the editors want people to respond. And yet, once again, there was a complaint about how The Local doesn’t offer all of its content free of charge (do the complainers work for free?).

Perhaps if you aren’t so rigid with the subscription, we can make more meaningful comments.

The Local responded thusly:

Hi, the article is paywall free to encourage responses. And yes unfortunately we have no choice but to impose a paywall to allow us to exist.

You’d think that would be the end of it, but no… there were more complaints and unsolicited suggestions as to how The Local could offer its content for free. Below is a sampling…

there is always a choice -just look at other media…

I don’t even click the links anymore as it’s always pay pay pay, most other get advertisers to pay, not the readers… it’s a win win, the advertisers currently speak to the few, not the many… (does this person walk into stores and read the magazines for free?)

The Local responded:

I don’t think that’s true. Most media have paywalls and those that don’t well, as the saying goes, “if something is free then you are the product”. We’d rather be the product and not our readers. Media who get advertisers to pay, write articles for clicks. We’d rather be useful and write content for those willing to pay for it.We know our members value reading articles without annoying banner ads, which is one of the perks of membership, which we have kept as cheap as possible over the years.

Someone else wrote this:

Get a sponsor, the tourist board or NGO’s, or Think Tanks, maybe the federal German government or a regional one, or hit up some EU grant scheme. There is loads of money out there for media organizations. I assume you already sell as much user data as you can regardless of being a subscriber outlet instead of a free to user one… Atlas Obscura is free and has great articles and solid writers working for it, so can you.

I was glad to see the above commenter was taken to task by another reader:

your entitlement is baffling tbh. You don’t want to purchase a product – absolutely reasonable. Demanding that you’re being given the product for free or that someone goes out to do some fundraising and get someone else pay for the product you consume…that’s quite a step further. All throughout, it doesn’t even occur to you that no one owes you anything.

To which the first commenter wrote:

Hoch weilgeborhner Frau, your pompous accusatory attestation that I demanded this media product for free is a lie, I will demand that you reread my prior comment before you castigate me for having an opinion on subscriptions and offering ideas on financing a replacement model. Sünde.

Uh… who’s really being pompous? Wow. Maybe The Local doesn’t want a replacement model for the product they offer. Maybe if you don’t want to pay for their content, you could just keep scrolling, rather than offering unsolicited suggestions on how they can offer their product for free.

I felt moved to comment too, so I wrote this:

I don’t mind paying. Your content is useful, and writers have to eat, too.

And the Local offered this response to me:

This is the main point Jenny. It’s not even about us needing to get paid (although clearly it’s important to be able to attract talented journalists) it’s just that we know we have to be useful – or readers will not pay. It keeps us on our toes.

Right. And I don’t want to read content that is paid for by advertisers. I can get that by watching network TV or reading CNN. I sympathize with those who can’t afford to pay for journalism. I just don’t understand the whining about it. God forbid someone wants to be able to make a living by creating content that informs or entertains. You don’t ask your plumber or doctor to work for free, do you?

Whoops… I truly meant to avoid complaining about people who whine about paywalls. It’s hard to avoid it, though. I know I should avoid comment sections, but they are such a fruitful source of blog ideas.

It’s pretty amazing to see how eager people are to share their views when they haven’t even taken a minute to inform themselves about the subject on which they are opining. It reminds me of Republicans who complain about rainbows on Bud Light cans and decide to boycott Anheuser-Busch, not realizing that Anheuser-Busch donates a lot of money to the Republican Party. Also, the cans featuring Dylan Mulvaney aren’t even available to the public, and yet we have people self-righteously boycotting… They’re the same people who complain about cancel culture. Too funny.

I learned about the Bud Light conundrum by watching Beau. I try not to listen to anything the Trumps say. The above video is pretty entertaining.

Well… I probably ought to wrap up today’s post. I see I’ve gone on quite a lot, and time is getting away from me. I have a vacation to research, laundry to fold, a bed to make, a guitar to practice, and a dog to walk. So I’m going to quit ranting now. Hope this post offers some food for thought. I challenge you to take a moment to read for comprehension, especially if you feel like commenting. It might spare you a moment or two of foolishness.

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healthcare, rants

A stupid hill to die on…

I’ve been thinking about my health lately, and not just because of COVID-19. That stomach bug I had two weeks ago has left some lingering effects. Sorry if this is too much information for the delicate among you, but I have been suffering from what I think is “post-infectious IBS“. Ever since I kicked the acute version of whatever made me sick two weeks ago, I’ve been dealing with, shall we say, mixed bowel habits, especially in the morning. Since mornings are when I tend to do most of my stuff for the day, this new development is cramping my style somewhat. As I write this, I feel vaguely queasy, and I’ve had diarrhea and constipation. It’s not the greatest way to start the day, although one positive to this development is that I don’t want to eat very much. Maybe I’ll finally lose some weight.

Up until two weeks ago, I’ve had the good fortune of being pretty healthy, in spite of my decadent lifestyle. I haven’t had a cold or the flu in ages (knock on wood). I didn’t even feel sick after I got vaccinated against COVID-19. I just had a sore arm for a day or so after the first shot. After the second shot, I didn’t even have that.

I understand not everyone has been as lucky as I’ve been. In fact, I realize that some people really suffered after they got vaccinated. Still, I don’t understand why so many people are still refusing to protect themselves and others by getting vaccinated against COVID-19. It seems to me like a pretty stupid hill to die on.

This morning, I read two stories about people who are refusing to get vaccinated. One person gave up her job as an anchorwoman on a morning television show in Mississippi. Another is allowing herself to be marked inactive as a candidate for a lifesaving kidney transplant. Both she, and her living donor, are refusing to be vaccinated against a deadly virus that has killed millions of people worldwide.

I’ve written before that, generally speaking, I do have empathy for people who want to make their own medical decisions. I also understand that there are people who can’t get a vaccine for health reasons. Some people also cite religious reasons why they won’t get the shot(s)– personally, I think religious reasons for avoiding vaccines are pretty bogus. Let me make it clear that I’m not for forcing people to get shots. However, I am in favor of private businesses being allowed to make decisions based on whether or not people get vaccinated, particularly against diseases that are highly communicable and have killed so many people.

The Mississippi anchorwoman, name of Meggan Gray, is 40 years old and has co-hosted “Good Morning Mississippi” on WLOX for the past 14 years. Her former employer, Gray Television, mandated that employees must be vaccinated against COVID-19 by October 1. Gray decided not to comply with the directive. So she was forced to resign her position. She claims she had made an “informed and prayerful decision” not to get the vaccine. In a public Facebook post on her page, she wrote:

Before GrayTV mandated this vaccination policy, I made an informed and prayerful decision not to get the vaccine, mostly because I had already survived a case of COVID-19. (There are other, more powerful reasons that led to my personal decision.) I know there will be people who disagree with me or do not understand my reasons. That is fully understood because that is a protected right they enjoy. Moreover, it is a personal decision for each American; but in my opinion, a forced decision to decide between a vaccination and the livelihood of an individual is a dangerous precedent.

Unfortunately, because of my decision about vaccination, I faced termination. The decision was difficult because I knew it would impact me and my family. My choices were either I follow the mandate and get vaccinated, or I lose my career at WLOX.

Gray writes that she offered to be tested weekly (which wouldn’t have been often enough). Her request was denied, and rightfully so. Yes, it’s true that vaccinated people can still get and spread COVID-19, but the evidence is very clear that vaccinated people are much less likely to get and spread the disease. I fully support Gray’s decision not to get vaccinated. But I also support her former employer’s decision to terminate her for not complying with a company policy designed to keep everyone safe from a deadly communicable disease.

There are plenty of people out there who are willing to abide by the company’s policies and can do Meggan Gray’s job. I’m sure there are people who enjoy Gray’s work as an anchorwoman, but they can get used to someone else. Television is a pretty competitive field. I’m certain there are many people who would love the opportunity to launch a career at WLOX, although maybe some of them would rather avoid living in Mississippi. I’ve got nothing against the state myself, but I can see why some would rather not go there.

Moreover, Mississippi is an “at will” employment state. That means that a person can be fired from a job for any reason that is non-discriminatory. I’m not sure, but I don’t think COVID-19 vaccination hold outs are in a protected class of people who can claim discrimination when they are dismissed for non-compliance of company policy regarding vaccinations. I would think that someone who “prayerfully” considered not getting the vaccine would understand a private business’s right to enforce health policies. Besides, God helps those who help themselves.

I’m sorry that Meggan Gray has chosen this hill to die on. I hope she doesn’t literally die because she’s made this choice. I especially hope her decision doesn’t kill someone else, and no one ends up begging for the shot as they lie in an intensive care unit, gasping for breath. I wish her luck with her career. Maybe Fox News will hire her. Or maybe she can start a YouTube channel. I know some people are cheering on her decision not to be vaccinated. Personally, I think people who are refusing to be vaccinated are short on sense. But maybe that’s because I have a master’s degree in public health.

As for the lady in Colorado who is being denied a kidney transplant… I don’t know where she’s been, but people who need organ transplants are routinely required to abide by conditions before they can get someone else’s healthy organ(s) transplanted. They typically have to agree not to smoke or drink alcohol. They have to agree to take powerful immunosuppressant drugs and yes, be vaccinated against diseases– not just COVID-19, but other diseases, too, like hepatitis and measles, mumps, and rubella. These are standard protocols for transplant surgeries; they are nothing new.

I don’t have any personal experience with organ transplantation, but I have done some reading about the experience. In one book I read, Sick Girl, by Amy SIlverstein, the author explained that getting a transplant is basically like trading one health problem for another. She wrote that she constantly suffered from sinus infections and colds because she had to keep her immune system weakened. Otherwise, it would attack her donated heart and she would die.

Leilani Lutali needs a donated kidney. She and her living donor have chosen not to be vaccinated against COVID-19 “for religious reasons”. Lutali claims that she’s “uncomfortable” taking the vaccine, and worries how it will affect her health. She stated, “I’m being coerced into making a decision that is one I’m not comfortable making right now in order to live…” She cares enough about staying alive to accept a donated organ, and her religion doesn’t forbid organ transplants. But somehow, her religion forbids vaccines? That sounds like bullshit to me. But if her faith in a God is so strong, then maybe God will perform a miracle and she won’t need that kidney after all.

I want to ask Lutali… why in the hell did she consult physicians for help with her kidneys if she knows more than they do? I get being an expert on the experience of living in one’s own body, but why go to a doctor for cutting edge medical care if she doesn’t trust their opinions about how to prepare for a transplant? She’s concerned about how the vaccine will affect her health in the long run? If she doesn’t get a transplant soon, this will not be a concern for her anymore. She will die, and health will be a thing of the past for her.

Aside from putting herself and the success of her operation at risk, Lutali will also be putting hospital staff and other patients at risk by not being vaccinated. For some reason, these folks who know more than medical and public health professionals have missed the memo that COVID-19 is extremely contagious. Hospitals, for all of their lifesaving capabilities, are chock full of organisms originating from sick people.

Hospitals are not actually good places for sick people to be, because sick people are there, and they spread diseases. That’s why people who go to the hospital for a simple surgery sometimes end up contracting nosocomial infections or iatrogenic illnesses. COVID-19 spreads like wildfire, and people in hospitals are already vulnerable. What right do Leilani Lutali and her donor have, putting other vulnerable people at risk?

I wish Lutali luck with her quest to find physicians and a hospital that will grant her a kidney transplant without the vaccine. I hope if she finds them, she tells us who the surgeon(s) are and where they practice medicine. That way, people can make an informed decision to avoid seeking treatment from them.

Most of the time, I really do support people’s rights to make their own decisions regarding medical treatment and healthcare. I do support privacy policies, too. But COVID-19 is a different matter. It’s killing people all over the world, and it’s a nasty way to die. The vaccinations have been tested and are safe and effective. They have been shown to reduce hospitalizations and the severity of illnesses. Every single vaccine that was ever made was once “new”, but as each day passes, these vaccines become less new.

At this writing, millions of people have been safely vaccinated against COVID-19. Hospital wards are not full of vaccinated people; they are full of unvaccinated people. And those people are preventing people with other health problems from getting the lifesaving care they need. That’s not right or fair.

I’m afraid vaccine mandates are here to stay. People better get used to them.

Don’t want to get the vaccine? That’s your right– for now, at least. But there are consequences for those kinds of choices. You should be prepared to live, or die, by your decision. You’ll probably be dying alone, too, because that’s often what happens when someone gets COVID-19 and it’s bad enough to kill them. I hope these ladies wake up soon.

In other– good– health news– Arran’s pathology report came back. The crusty growths he had removed last week are benign! So that’s one reason to smile today.

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book reviews

Repost: Two books about what it’s like to have an organ transplant…

Reposting two Epinions reviews about what it’s like to receive a donated organ.  I just thought of them today because I was looking up Amy Silverstein, author of Sick Girl.  I remembered I read and enjoyed her book… or maybe I didn’t enjoy it as much as I found it interesting.  I also read Claire Sylvia’s fascinating book, a change of heart.  Claire Sylvia’s book is a bit more on the new age side, plus she got more than one organ.  Fascinating read!

(Actually, this was reposted on the original blog… and because we were talking about Amy Silverstein last night, I’m posting them again.)

Heart transplant… the lousy gift of life?

Credit People magazine once again for inspiring me to read something new. A few weeks ago, I was reading the book reviews and came across one for Amy Silverstein’s 2007 book, Sick Girl. The review in People mostly praised Silverstein’s book about her life seventeen years post heart transplant, but warned that at times, Silverstein wallowed a bit in self-pity. I was intrigued by the description and was already ordering another book anyway. I threw Sick Girl into my virtual cart on Amazon.com so I could see for myself.

At the beginning of Sick Girl, Amy Silverstein describes helping her husband, Scott, and son, Casey, prepare for a long awaited trip to the Super Bowl. As she packs Casey’s suitcase, she contemplates ending her life. It’s 2005. Amy Silverstein is in her early 40s and has, for seventeen years, lived with someone else’s heart transplanted in her chest. She has far exceeded the life expectancy her doctors gave her when she got her heart transplant back in 1988. They told her she’d have ten years. She’d lived seventeen, enduring endless medical crises and procedures. Through it all, she’d never gotten well or felt like her old self. She’d been nothing but sick and tired. She doesn’t want to suffer anymore, so while her husband and son are out of town, watching a live game of professional football, she plans to stop taking her immunosuppressant medications. She hopes to be dead by the time they get home.

I read this introduction and inwardly groaned. The reviewer in People magazine had not lied; I thought to myself. The writing did seem a bit melodramatic and self-pitying. But I felt compelled to keep reading and by the time I finished, I had a rudimentary understanding of why Amy Silverstein wanted to reject the precious gift she received from an anonymous 13 year old Ohio girl back in 1988.

Amy Silverstein was a pretty 24 year old law student at New York University when she fell ill. She’d been having trouble with fainting and went to see her doctor, who told her to start salting her food because her blood pressure was very low. The salt cure hadn’t helped and Amy got worse. She went to the doctor again, who sent her for a battery of tests, the results of which ultimately revealed cardiomyopathy. It appeared that a virus had attacked and pretty much destroyed her heart. That was the end of Amy Silverstein, healthy girl.

Doctors told Silverstein that she needed a heart transplant. She managed to get one before her time ran out. Exactly one year after her transplant, she married her loving husband, Scott, who had fallen in love with her when she was still healthy. I found Amy’s description of her wedding day very poignant. People were so happy for her. They thought that 13 year old heart had cured her and she was the picture of health. They didn’t know that Amy had to break away from her party to take powerful immunosuppressant drugs that would make her feel ill and poison her immune system. The immune system is designed to keep a person well, but to Amy, the immune system was an enemy. She swallowed the poison and went back to her reception, trying hard not to vomit and spoil other people’s fun.

Later, Amy writes about having coffee with a friend and complaining about her recurrent sinus infections. She’d had eleven sinus infections in that year alone and was on yet another powerful round of antibiotics. Amy’s well meaning friend told her that she should do what AIDS patients do– take drugs to bolster her immune system. Amy told her friend that bolstering her immune system would kill her because it would destroy her transplanted heart. She tried to explain, but the friend just didn’t understand and wanted to change the subject. In fact, it seemed that no one understood what having a heart transplant was like. It seemed that everyone expected Amy Silverstein to be nothing but happy that she was still living, even though living meant that she was always sick and could rarely enjoy life.

Sick Girl offers a fascinating look at what it’s like to be an organ recipient. It really opened my eyes to concepts I had never considered– not that I had ever truly considered what it’s like to live with a vital organ that used to belong to someone else. On an intellectual level, I knew that transplant recipients had to take powerful anti-rejection drugs. But I never knew that living with those powerful drugs meant living with extremely unpleasant side effects. Though it certainly makes sense to me now, it had never occurred to me that those heavy duty drugs would force transplant patients to deal with endless infections, constant nausea, and eventually, the possibility of cancer. Essentially, having a transplant means trading one major health problem for at least one other.

One of the most interesting passages in Sick Girl is when Silverstein describes what her transplanted heart feels like when it’s beating inside her chest. Silverstein explains that transplanted hearts are not connected to a person’s central nervous system. The nerves are all severed when the heart is cut away from its original owner. So, something could startle Amy Silverstein, but her heart would not react until a couple of minutes later, when her adrenaline kicked in. By that time, the scare might have ended, but the heart is only just starting react to it in an odd delayed response.

I also enjoyed reading about how Amy Silverstein’s perspective changed as she learned more about her body. For years, she thought she was sick because she was suddenly stricken by a virus that had attacked her heart. She felt bitter because she felt like she’d been targeted by an unlucky random event. But one day, one of her old doctors surprised her with the news that she’d actually been sick from birth and no one ever knew it. As it turned out, she’d had twenty-four years of good health against all odds. She hadn’t been unlucky. In fact, she’d been extremely fortunate.

Despite my initial thoughts that Sick Girl would be a real downer, I ended up really liking it. Yes, it’s true that Silverstein does a fair amount of whining and is often very negative, particularly about the people charged to take care of her. But she admits that she complains a lot and, under the circumstances, it seems like she’s justified in doing so. Everyone seemed to think that she should be grateful for the gift of life, given to her by an adolescent girl whose life was snuffed out in a car accident. People seemed to think that Silverstein should soldier on without complaint, enduring every inconvenience and obstacle that confronted her, all the while with a smile on her face and courage in her borrowed heart. No one seemed to care about what it was really like for her. And no one wanted to hear that she was sorely tempted to reject her precious gift in favor of death. Suicide talk was definitely not cool.

Amy Silverstein was suffering. Had she just been dealing with garden variety depression, people would have told her to talk about her feelings with a therapist. But because she’d had a heart transplant, people seemed to think that Silverstein had every reason in the world to be grateful and happy. She had no cause to be depressed because she’d been given a second chance at life. It’s my belief that Sick Girl is Amy Silverstein’s chance to finally have her say with an audience of people who want to hear her and understand. In a way, perhaps writing Sick Girl helped Amy save her own life so that she could be there as long as possible for her husband and son and offer something to the world that would make living her difficult life more worthwhile.

I devoured this book in just a couple of days, finding it very hard to put down. Yes, there’s a lot of bitterness, self-pity, and whining in it, but I came away from it feeling very inspired. I would definitely recommend Sick Girl to anyone who likes good stories. In my opinion, Sick Girl gave Amy Silverstein her own purpose for living– to tell the world about her heart transplant and give them a new perspective instead of just living for the sake of other people. And that’s what makes it a very special book.

Amy Silverstein is still living and has written another book.

You took the part that once was my heart…

A few weeks ago, I happened to find a human interest story on the Internet about Claire Sylvia, a woman who underwent a heart-and-lung transplant to save her life from pulmonary hypertension, a deadly lung disease. I read with fascination about how, once Sylvia got her new organs, she found herself craving foods she had previously hated and was drawn to activities she once never dared to try. Further into the article, the author mentioned that Sylvia had written a book back in 1997. Intrigued by her story, I immediately went to Amazon.com in search of A Change of Heart: A Memoir, a book Sylvia co-authored with William Novak. I was surprised to find Sylvia’s book out of print since it was so recently mentioned in an Internet article. Luckily, plenty of used copies are still around.

Claire Sylvia begins her story by describing the illness that had led her to writing. In the late 1980s, Claire Sylvia was dying of pulmonary hypertension. She became the first person in New England to undergo a heart-and-lung transplant, receiving the organs of an 18 year old man who had died in a motorcycle accident. Suddenly, Sylvia’s body began to pulsate with life and vitality. She thought that with the supreme gift of life donated by the young man’s generous family, her worries about her heart and lungs were over. But as she recovered from the operation, Sylvia began to feel that she had gotten more than just healthy organs when she received a new heart and lungs.

Sylvia began to have dreams that suggested that the young man’s spirit was now inside of her. She began to crave green peppers, a food she had previously hated. One of the first things she asked for upon regaining consciousness was a cold beer, a beverage she had never enjoyed before the transplant. She talked to her doctors about these new feelings and they assured her that a heart was just a pump. It wasn’t possible to transplant another person’s spirit along with their organs.

Sylvia began to have vivid dreams about her donor. A few months after her surgery, she dreamt she met a tall, thin, blond young man named Tim. In the dream, Sylvia and the young man were good friends. As they part company, Sylvia feels that her business with Tim is not finished. She kisses him and realizes that they will be together forever. Somehow she knew the man in her dream was her donor. Unfortunately, the rules would not allow the healthcare professionals to reveal her donor’s identity, nor could her donor’s family know who Sylvia was. The officials claimed it was “for the best”. In fact, Sylvia already knew more than she was supposed to know.

Despite the good intentions of the medical staff, Claire Sylvia did eventually meet her donor’s family. She found them through a combination of research, common sense, and the clues given to her by the previous owner of her heart and lungs. And when she did meet Tim’s family, she learned why she was suddenly drawn to men who rode motorcycles and why she wanted to eat chicken nuggets, a food she had once detested. Though the medical staff had warned her that she was “opening a can of worms”, Sylvia found herself welcomed into Tim’s family as if she were one of them.

My thoughts…

I found Change of Heart fascinating to read. With the help of her co-author, William Novak, Claire Sylvia has written a beautiful, heartwarming story about the wonderful gift of organ donation. And while some people may dismiss her story as new age bunk, I found it astonishing and hopeful.

On the other hand, while I found Claire Sylvia’s book very inspiring and interesting, I also wondered if she wasn’t sugar coating her experiences somewhat. A few months ago, I read and reviewed Sick Girl, another book about organ donation that presented it in a very negative light. Amy Silverstein, the author of Sick Girl, was brutally honest and quite negative about her heart transplant experience. Silverstein wrote of horrible side effects from drugs, constant sinus infections, and never ending worries about developing cancer.

Claire Sylvia’s book, by contrast, is overwhelmingly positive. She barely mentions the powerful drugs she must take every day to ward off rejection. She doesn’t mention the inconvenience of frequent visits to doctor’s offices. She almost makes her transplant out to be a desirable experience, as if by having someone else’s heart and lungs, she’s somehow more evolved as a human being.

Don’t get me wrong. I’m glad Claire Sylvia is so positive about her transplant. I’m am pleased that she’s grateful and she’s been able to make peace with her donor’s family. I am happy that she’s been able to find answers. I still can’t help but wonder if her experience has been all miraculous. I also wonder if her experience is common among transplant recipients. Would someone reading this book after having a transplant also be able to relate?

Anyway, I’m glad Sylvia wrote her story. I found it well written and very moving. It gives me hope that all of the things I learned about faith in something beyond the tangible and obvious could be true. It also gives me faith that perhaps it doesn’t matter what religion a person is. Claire Sylvia is Jewish. Her donor was Catholic, as is the rest of his family. And yet, despite their different religious beliefs, they are still able to share in something amazing and faith affirming.

By the way, according to the news article that prompted me to read A Change of Heart, Claire Sylvia, who is now 68 years old, also had a kidney transplant in 1998. Her transplanted kidney came from her ex boyfriend and ballroom dance partner. Apparently, after that transplant, Sylvia developed a fondness for cooking and started baking things for her donor. He told her that she cooks just like his mother used to.

I would definitely recommend this book to anyone who enjoys inspirational memoirs and those who can believe that cellular memory can last beyond a person’s death. Claire Sylvia’s got a great story to tell for those who want to believe it.

Claire Sylvia passed away August 19, 2009, 21 years after her transplant.

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