disasters, ethics, healthcare, modern problems, poor judgment, silliness

“I was born free… I’ll die free.” But Chad, dead people don’t need freedom…

Bill went to Stuttgart yesterday afternoon, leaving me alone with my thoughts in our big German “mansion” (ha ha ha). Actually, compared to our last house, it kind of is a mansion. It’s also priced accordingly, but we’re mostly a lot happier here, so at least we have that going for us, right? I do really miss some things about Stuttgart, though… like the beautiful scenery in the cute towns, and knowing my way around a lot better than I do here. Also, in Stuttgart, we didn’t have to deal with COVID-19. because it didn’t yet exist, hence the reason why I know my way around better down there. I got out of the house a lot more.

Like a lot of people, I am super weary of this stupid virus running my life. I’ve been doing my best to try to avoid getting sick, although I’m mostly living the way I have for the past fifteen years or so… basically as a shut in. That’s just the way life turned out for me, personally, for a lot of reasons. The one thing that has changed, though, is that I choose to stay home a lot more, mainly because here in Germany, we have a lot of annoying rules and restrictions that I prefer not to deal with. And since that means I’m social distancing, I count it as a responsible move. Yes, I am triple vaxxed, and I wear a stupid fucking mask when I’m required to, but I just don’t put myself in situations where that is required. Fortunately, I’m still basically healthy… as far as I know.

The same isn’t true for a 38 year old Hickory, North Carolina man named Chad Carswell. I read about him yesterday in the Washington Post. What makes him notable enough for a big newspaper article? He has severe kidney disease and desperately needs a kidney transplant, and apparently, there are over 100 people who have offered to donate a kidney to him. He also claims to have the money to pay for the surgery.

After almost two years on dialysis, Mr. Carswell’s kidneys are reportedly functioning at 4 percent, and they aren’t going to last much longer. Carswell applied for a kidney transplant to extend his life. But Mr. Carswell is currently not vaccinated against COVID-19, and the hospital where he wishes to get a transplant requires that he be fully vaccinated. Although I don’t remember reading it, my guess is that Carswell’s donor would also have to be fully inoculated. Mr. Carswell steadfastly refuses to get immunized against COVID-19, having already survived two infections, one of which put him in the hospital. Carswell “reasons” that he doesn’t need the shots. He told the post:

“There is not a situation in this world that I’ll get a vaccine. If I’m laying on my deathbed, and they tell me, ‘You have a kidney waiting on you if you get this shot,’ I’ll tell them, ‘I’ll see you on the other side.’”

Based on what I’ve read so far about this man, he says that this is a matter of “freedom” and his “rights”. And that’s fine. I totally get that some people are affronted by being told that they must be vaccinated, or they must wear masks… and they see these requirements as “government overreach”. In fact, I can even agree that a person should ultimately have dominion over what goes in or out of their bodies. However, just as Mr. Carswell has the right to refuse vaccines; his doctors have the right to declare him unfit for surgery because he’s not vaccinated against COVID.

I know a lot of people think COVID-19 is just a “bad flu”, never mind that the flu still kills people most years. I mean, I haven’t had the flu since 2013, but the last time I did have it, I really felt like dying. Indeed, that year, a lot of people in Texas, where we were living at the time, did actually die of the flu. There were even healthy teenagers who died that year of the so-called “bad flu”. In my case, it took me weeks to get over my sickness, and I was basically “healthy”, though unvaccinated against flu. Bill also got sick, but he did get a flu shot that year. He got well much faster than I did. I still remember being too exhausted to stay out of bed for more than a few minutes at a time. It took months to get rid of the hacking cough and lingering fatigue, and that was just the “flu”.

Carswell has already had COVID-19, and he’s been living with kidney disease for awhile… and he says he’s had health issues for years. So obviously, getting COVID-19 doesn’t scare him. I wonder if Mr. Carswell has really stopped to consider what would happen after he gets a transplant. I’m sure he’s been told that he will have to take powerful anti-rejection drugs for the rest of his life. Those drugs basically drastically suppress one’s immune system, meaning that an illness that most people would consider mild could actually kill a transplant recipient. I’ve read a couple of excellent books about people who had organ transplants.

Author Amy Silverstein, who had a heart transplant, very bluntly wrote that getting a transplant is like trading one serious health problem for another, even though her new heart has made it possible for her to survive for many years beyond her initial operation, which took place in the 1980s. She wrote extensively about how the most minor cold bug would send her straight to bed for a couple of weeks. Friends would tell her to do things to “boost” her immune system, not realizing that boosting her immune system could kill her. Being constantly sick and concerned about her health even caused Amy Silverstein to consider suicide, even though she had been given the “gift of life” from a healthy 13 year old girl who had died in an accident at a “fortuitous” time for Amy. Fortunately, at this writing, Amy Silverstein has overcome her depression and, miraculously, is still alive and relatively well after having had a second heart transplant. The first heart lasted an incredible 26 years.

I went looking for more on Chad Carswell last night. I discovered his personal Facebook page, which has a few public posts open about his situation. It appears that he’s well loved in North Carolina and, perhaps around the rest of the country, for his steadfast refusal not to be pushed around by the Democrats… (eye roll). I came away with the idea that Chad Carswell and his friends are actual morons. I’m sorry if that sounds harsh, but that’s seriously how I felt as I read some of the comments left by him and his champions. These folks are apparently NOT mental giants, although Carswell appears to be physically rather imposing, from the chest up anyway. I read that he’s already a double amputee, thanks to his health problems.

There were so many comments about medical freedom and how Carswell was “fighting” for it. I want to ask him… what the hell good does “freedom” do for the dead? And why should someone give up a kidney to someone who doesn’t respect the sacrifice enough to do everything possible to see to it that the transplant is a success? As of yesterday, both the Moderna and Pfizer vaccines have been declared safe and are fully approved by the Food and Drug Administration. That was one complaint the anti-vaxxers had about the shots. Now, they don’t have that complaint anymore. Moreover, although vaccinated people can and do contract and spread the virus, it’s clear that vaccinated people don’t usually get nearly as sick as the unvaccinated do, and they are much less likely to be hospitalized for COVID. I’ve already mentioned that donated organs are very precious, and taking the medications to keep those organs functioning will make Carswell medically fragile. So why wouldn’t he want to do what he can to ensure that the donated organ doesn’t go to waste?

Personally, I think Carswell is really enjoying the attention he’s getting. I suspect that this unusual turn of events– Carswell’s health problems, our current ridiculous political situation, COVID-19, and the annoying restrictions people are having to tolerate because of how quickly and easily it spreads, have come together to make the “perfect storm” for a man whose life probably hasn’t been especially noteworthy under other circumstances. I know some have said maybe he’s “afraid” of surgery or of needles, but it’s obvious he’s already endured other medical stuff, to include amputations of both legs. So I don’t think he’s “afraid”. I think he’s enjoying being on the Trump train, getting attention, and being held up as a poster child for the unvaccinated and their “rights”. There’s power that goes along with fame, and this is Carswell’s fifteen minutes of fame. I’m sure it’s intoxicating to experience that kind of fame. But refusing a safe vaccine to protect his donated organ and his health is probably going to cost him his life.

Below are some very telling quotes from Carswell’s very public Facebook page:

“If I DIE in pursuit of my magnificent OBSESSION then so be it I went out FIGHTING for what I love! But today while I’m here I will show you I’m still a LION and I’m still KING of the jungle! I’ll show you how hard I can FIGHT ! “ c t fletcher Pretty stoked about this afternoon! Even more blessed that god showed me along time ago my purpose on this earth and gave me and showed me the strength I needed to stand up and fight for those things but also the ability to help others . This journey isn’t about me I’ve said it 1k times over if it was I would have quit along time ago. It’s about the countless messages I get randomly telling me I help and this journey helps them . It’s the tons of people telling #lifeon daily. It’s not just a saying it’s a movement that just simply means FIGHT! The switch was turned on and now we must LIVE!

And…

You know I’ve been asked a few times the last few days why I keep going . What makes me keep
Fighting . And I told everyone as I always do the same thing it’s not about me it’s about others. But this message I got just a few min ago brought tears to my eyes not just bc the absolute amazing voice behind the song that was recorded just for me but for the sheer thought of a stranger in another state cared for me enough to send me this. All while telling me that she’s had her own struggles but seeing my journey has inspired her to get up stop feeling sorry and FIGHT! This isn’t about me it’s about the ability to change the world and impact people all across the country! If i get a kidney great if I don’t and i help motivate people to keep fighting then I’m just as blessed in heaven! Just take a min and listen to this stunning audio . Thank you to the one who sent me this she didn’t want any credit but I couldn’t let it go without being shared!!! This is why I keep going this is why I fight !

He says he wants to FIGHT, but he’s not trusting the people who can help him win the fight. His situation makes for “pretty” Facebook posts, though. I do hope the woman who wrote to Chad doesn’t follow his example.

The excitement of the story being shared has been dwindled by the sadness that I just found out my sweet dear Mrs Mary Byrd Voss passed away earlier this afternoon. She was a blessing to me and my life she called me her “Greek God” . She’s at peace and with her son billy and her husband now. I love you Mrs Mary and am grateful and thankful you were placed into my life . I’ll cherish our friendship forever ! See you soon! #LIFEON

Yes, Chad, if you keep doing what you’re doing, you will indeed see Mrs. Mary again real soon. But you go on with your bad self.

🚨🚨UPDATE🚨🚨 Listen friends idk for sure yet BUT! Something very promising may be in the mix real real soon! I just had a phone call that may allow us to reach even more people than we thought ! The meeting with the paper went well . Hopefully they do the right thing and right the article it’s like I told her this isn’t about me or for me or for me to get a kidney . I’m prepared to die over this this is about reaching more people and continuing the journey and mission to help others . And I wanted to make sure they knew it wasn’t about me it was more for getting my story out there more to continue to inspire others . But the phone call I got after I left there could be even bigger ! So shoot up a prayer that if the lords will be done this happens so the mission can continue to grow and reach othersUPDATE so was waiting on this call before I said it but Dave Faherty reached out from Channel 9 news and I am meeting with him here in about 15 minutes ! I’ll keep y’all updated !!#LIFEON

And… (“Life on?” Reminds me of “Be Best”.)

Lol so some people think this is me being selfish or this is me wanting attention or this is me whatever the ones who know me know I could care less about that I just want to help people ! But remember when I said today it’s a vax but what’s next ? How bout kids over the age of 5 with cancer being forced to move out of the Ronald McDonald house if not vaccinated by the end of the month ? WAKE UP PEOPLE! The choice we make today effect the life we live tomorrow !!#LIFEON — with Chad Carswel.

These are just a few public statements Mr. Carswell has made. It’s clear to me that he’s quite pleased to be newsworthy, and he’s enjoying the power he’s getting from taking this stand. And as a fellow American, I certainly support his right to “freedom”, although I think if he really wants to commit suicide, there are more efficient ways to do that than languish with kidney disease. I want to ask Chad how his being very sick and facing death for want of a vaccine is “helpful” to anyone, especially to those who really do want to live and are willing to do what they need to do to make that happen. Millions of people have had the COVID shots and the VAST majority of them are fine.

As far as I can tell, no one is forcing Chad Carswell to get vaccinated. At this point, no one is forcing anyone to be vaccinated. What’s happening is that conditions are being placed on those who choose not to be vaccinated. Those conditions are being placed to protect those who are willing to think of the community as a whole instead of just themselves. COVID-19 is extremely contagious, and as a medically compromised person whose body has already been through hell– to include having had COVID twice– I want to ask Chad why he doesn’t value his own health more. And why is he seeking help from medical experts if he won’t follow their advice? Why go to a surgeon and ask for a donated kidney if you don’t trust doctors when they tell you that getting COVID-19 when you are extremely immunocompromised is a terrible idea that will likely lead to tragic consequences? Why should medical professionals waste their time, energy, and resources to help someone who apparently won’t help themselves? If Chad won’t get a vaccine, how do healthcare professionals know that he’ll take anti-rejection medications?

And better yet… why should I give a shit? Well… I think I give a shit because of comments like the one below, which I’ve seen being shared on social media.

Double amputee Chad Carswell of North Carolina must have a kidney transplant to live.Multiple businesses raised funds for the surgery, and more than 100 people have offered to donate a kidney to spare his life.But Atrium Health Wake Forest Baptist Hospital in Winston-Salem told him he can’t have the life-saving procedure unless he gets vaccinated! The vax has proven completely ineffective and doesn’t protect those who got the jab from getting it…yet the hospital requires it or will let the man die. The facility that should be helping save his life is now preventing that help. Think about that….

The person who posted the above comment is clearly not a medical expert. I looked at her Facebook page, and these were her credentials:

Someone please tell me how someone with these clearly “artsy” credentials is qualified to comment about someone else’s health status? What does she know about organ donation, virus transmission, or vaccines?

But the person who wrote the above post can obviously write. She has worked in public relations, marketing, and “ghost writing”. She’s studied music. So that tells me she can put on a performance. She can write coherently. If she’s done public relations, she probably knows how to influence people and spin a narrative that will cause less informed people to care and share her wrong-headed conclusions. So that makes her a potentially dangerous source of disinformation. This person isn’t a medical doctor. She isn’t a nurse. She hasn’t studied public health or epidemiology. She does public relations! I don’t even know if she knows Mr. Carswell personally, or has any real knowledge of his medical situation or even the general needs and concerns of people who need organ transplants. Yet she’s trying to rally the troops to his cause, which is almost surely bound to end in death if he doesn’t get with the program. To use her own words, “think about that.” Especially since, at this writing, the above post has 148 “likes”, 284 reactions, and 65 shares. And every time someone shares her post, the potential for it going “viral” increases, which means that more people will possibly be misinformed. (Incidentally, for anyone who wants to accuse me of the same thing, I actually DO have a master’s degree in public health and used to work in epidemiology. No, I’m not an expert, and I don’t claim to be one, but I do have faith in the people who have been to school for much longer than I have, studying medicine, public health, and related subjects.)

Below is a post from one of Carswell’s lifelong friends…

I’ve known Chad Carswel my entire life! As kids we use to crawl through the drainage pipe under his grandmas driveway pretending to be army men! Chad is a stand up man, and an inspiration to all who know him! If anyone deserves a kidney he is definitely on the top of the short list! To refuse him life saving medical care over a vaccine that isn’t even effective at preventing infection is absurd and asinine! How is refusing life saving treatment “doing no harm” as the oath states? My hope and prayer is that he will find a doctor with half a brain and an ounce of sympathy and perform this surgery for him! Please friends and family lift him up in prayer! Pray for healing, and for a doctor that will stand by his oath!

Friend, if you really think Chad is a “stand up man” (impressive, given his double amputee status), and “deserves a kidney”, then take a moment to ask yourself why someone should donate an organ to a person who doesn’t follow medical directives by people who have studied for years to become medical experts? Why should people who have given so much time, money, and energy to study medicine do surgery on someone who stubbornly refuses to take their advice and, in fact, spreads disinformation about a deadly virus in his PR campaign against vaccines and, frankly, liberal politics? This really shouldn’t be about “owning the libs” or anything else political. This is about a man’s health– life and death– as well as the well-being of those who are following this story. If something isn’t done soon, your friend who needs “life saving medical care” is no longer going to need treatment, or freedom. Dead people, in fact, have no need for “life saving medical care” or freedom.

Anyway… in spite of this lengthy screed I’ve written, I genuinely do think Chad Carswell has every right to make his own decisions. But that right extends to other people, too. Right now, the evidence is clear– worldwide, mind you, not just in Biden’s “liberal” camp– that COVID vaccines are essential for preventing severe disease. The vast majority of competent healthcare professionals, and obviously the ones in charge of Chad Carswell’s case, agree that the vaccines are absolutely necessary. And yes, most of those people do have more than “half a brain”, and I’m sure a lot of them have sympathy and, more importantly, empathy, for Chad’s half-baked position on COVID vaccines. But even Donald Trump has said vaccines are good, and God knows, Trump wants every vote he can get in 2024. He got vaccinated, too, but if things keep going the way they’re going, his base is going to go extinct. As much as I despise Trump, I do have beloved friends and relatives who support him. I hope they have, at least, followed Trump’s lead on COVID vaccines.

So… to Chad and his followers, I would say, if you don’t want to get a vaccine, that’s certainly your choice. But surgeons can also choose to declare you unfit for surgery, just as they might if you were determined not strong enough to survive. Freedom isn’t a one way street that just works for YOU. It goes both ways. And rules must apply to everyone; otherwise, we’ll have anarchy, which I understand Trump is against– he did call for “law and order”, right (except on January 6, 2021, that is)? So, I genuinely wish you luck, and I hope all of those thoughts and prayers lift you into miracle territory. Maybe there is a benevolent surgeon working at a less restrictive hospital system who will give you what you seek. If I were you, I’d start looking far and wide. Time is most likely not on your side.

Standard
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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ethics, healthcare, law, religion

Repost: What’s best for the children?

I am reposting this article I wrote for the original blog in June 2017, because it’s pertinent to today’s fresh content. It appears here mostly “as/is”.

Last year, I first read the disheartening story of Mariah Walton, a young woman from a Mormon family in Idaho.  Ms. Walton had the misfortune of being born with a hole in her heart that could have been easily treated when she was a baby.  Unfortunately, her parents were religious wingnuts and refused to seek appropriate medical care for her.  Rather than having the hole corrected surgically, they chose to pray over Mariah and treat her with essential oils. 

Now, at 21 years of age, Mariah should be enjoying robust health and good times.  Instead, she fights for every breath and needs oxygen.  She’s permanently disabled and may need a heart and lung transplant. 

I have read accounts written by people who have had organ transplants.  Although they can be lifesaving and miraculous in many cases, having an organ transplant is very risky and, in fact, doesn’t guarantee good health.  Some years ago, I read Amy Silverstein’s book, Sick Girl.  Although the book may seem to have a bitter tone and some readers might think Silverstein is shamefully ungrateful, she does explain why an organ transplant basically amounts to trading one major health problem for another.  Yes, you get a heart or kidney or lung that works better than what you had.  But you have to take drugs that lower your resistance to every germ out there so your body doesn’t reject the foreign part.  There is a greater risk of developing cancer, too.

Now, in fairness to the Church of Jesus Christ of Latter-day Saints, I am not aware of any church teaching that stipulates seeking healing from the Lord instead of medical interventions.  In fact, from what I read, Mariah’s parents’ beliefs seem to be on the fringe of what regular Mormons believe.  Still, Mariah and her family live in Idaho, where apparently, it’s okay for a parent to forego appropriate medical care for their children in favor of “faith healing”.  The same is apparently not true in heavily Mormon Utah, where young Parker Jensen, who suffered from Ewing’s sarcoma, was forced into medical treatment even after his parents tried to prevent it.

I’m actually kind of on the fence about this, though.  Over the years, I’ve followed cases of parents who have tried to make other choices for their children who have health problems.  I remember the case of Starchild Abraham Wolf Cherrix, a fellow Virginian, who had Hodgkin’s disease when he was a teenager and was fighting Virginia medical officials who wanted to force chemotherapy on him.  “Wolf” is still evidently battling cancer, though he is now a young adult.  His case inspired Virginia’s “Abraham’s Law”, which allows parents of teenagers to refuse medical treatment or choose alternative treatment for their children.  The catch is, the teen has to “seem” mature, both parents and the child have to agree, and all must agree that the choice is in the child’s best interest.

I also remember the Minnesota case of Daniel Hauser, who in May 2009, was 13 years old and also had Hodgkin’s disease.  His mother, who belonged to the Nemenhah Band of natural healers, fled Minnesota with him when doctors tried to force Hauser into treatment.  He did eventually come back and accept treatment, which evidently cured his cancer.

In these two cases, the minors were not young children.  Cherrix was 17 years old and could form cogent opinions about his situation.  Hauser was 13, and apparently not as knowledgable about the disease as Cherrix was.  In Mariah Walton’s case, she was just a baby when the issue was discovered. It could have been fixed then and there.  Instead, her parents were allowed to medically neglect her and she is now paying the price as an adult.  Had the Waltons been living in neighboring Oregon, the parents could have been in legal trouble for not seeking appropriate medical care for their daughter.

It’s interesting how the laws in the United States differ depending on what state you live in.  Justina Pelletier was forced to stay in a hospital and spent 16 months in state custody because medical officials disagreed with her parents’ decision to seek treatment for her mitochondrial disease.  Her case was especially interesting, since Pelletier is from Connecticut, but had been taken to Boston Children’s Hospital for emergency treatment in 2013.  Boston Children’s Hospital is in Massachusetts, so Pelletier wasn’t even being detained in her own state. 

Officials at the hospital determined that Pelletier’s problems were caused by psychiatric issues and her parents were trying to force her into “unnecessary” medical treatments.  Pelletier’s parents had previously taken her to Tufts Medical Center, also in Massachusetts, where doctors had diagnosed her with mitochondrial disease, a rare genetic disorder that affects how cells produce energy.  Evidently, the people at Boston Children’s Hospital disagreed and felt that was grounds for the state to pursue custody of the young woman.  Pelletier spent months in a locked psychiatric ward.  Now her parents are suing.

I do think that there should be some way to make sure that parents aren’t allowed to impose wacky religious beliefs on their innocent and helpless sick children.  On the other hand, I also think that there’s a fine line in ensuring what is best for the children and the government overstepping its boundaries.  It really is a shame that Mariah Walton is suffering because her parents neglected her.  She should be strong and healthy, enjoying her life instead of struggling to breathe.  It seems our lawmakers need to come up with a happy medium that considers the rights and interests of everyone involved.

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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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