HEARTS IN HOSPITALS – BLOG READERS CHIME IN (December 31, 2022)
My November 30 blog post reported on my recent heart failure and hospitalization. At the end of the post, I invited readers to contribute their comparable experiences and insights. The responses were the most numerous to any post in the past four years: three dozen written replies from subscribers, plus two dozen spoken comments conveyed by retirement-community neighbors.
Since an anchoring purpose of the blog has always been to stimulate elder conversations about issues of common interest and concern, I’d like to share with you the main dimensions of this feedback. To let respondents speak for themselves, I’ll quote key excerpts from their messages. To respect their privacy, I’ll keep those comments anonymous. As I move through this synthesis, I’ll insert some attempted clarifications of my own perspective and takeaways.
Several friends wrote to sympathize with Nancy and me for what they interpreted as an excruciating medical marathon. Here are two representative sentiments:
- “What an ordeal, for 17 days and beyond….What a fright it must have been, especially without symptoms.”
- “Oh, my goodness…we could hardly believe our eyes as we read Russell’s blog account of the past month….our hearts hurt as he recounted all that he has gone through…and as his partner, Nancy, all that you went through as well.”
Let me emphasize how grateful I am for this heartfelt sympathy, especially coming from cherished friends. But I’d also like to reaffirm that, for both Nancy and me, this hospitalization was an overwhelmingly positive experience. True, I was lucky not to suffer any pain throughout. And true, the life-vest drama was stressful while it lasted. But that was only five flapping minutes within a hospital stay of over two weeks. What I was trying to underline in my post was the quality and compassion of the medical care I was receiving; and how we both attempted to make the best of a challenging situation by practicing respectful cooperation, patience and effective self-advocacy.
Readers communicated their empathy by citing their own heart-problem histories.
- “We’re both on the mend. I had a heart attack in August and after seven stents, I’m a new man.”
- “I found your story particularly interesting because I too had a-fib [atrial fibrillation]. Fortunately, I was aware of its occurrence (although it took a few years to figure out what was happening), and have been very lucky in that, so far, (11 years after my ablation) I have not had any recurring problems.”
- “Like you, I have experienced severe a-fib and tachycardia without any appreciable discomfort. (Also 3 ablations and 3 cardioversions combined.) I have the impression that it annoys the docs when the beats are anything but sinusoidal and I say it doesn’t hurt.”
- “The ticker has been the weak link in my family. Dad and Granddad did not make it to 50. I should have croaked the week before I turned 61 from a heart attack that blocked 99% of LAD [left anterior descending artery]. But I was fixed by emergency angioplasty, which was not around for my dad.”
- “Your whole article was informative and spell-binding. Perhaps I was influenced by having had a few years visiting a cardiologist at Stanford. I have had four cardio-versions there over that period and the insertion of a loop recorder. (I have also had four catheter ablations over the years, but all of those were prior to connecting with Stanford.)”
I received several similar accounts. Two things struck me about this array. We all seem to be acquiring and spouting technical medical vocabulary. I wonder if this helps us to demystify an intimidating health-care experience? And I recall one of my cardiologists informing Nancy and me that atrial fibrillation affects fully one in eight Americans – women as well as men; youths as well as elders. Why had I never comprehended the scope of this epidemic?
Rating Our Hospitalization Experiences
While respondents appeared to consider our heart problems similar, their ratings of hospitalizations were widely disparate. The majority had had negative experiences, some positive, and a few both pro and con.
- “My MI [myocardial infarction/heart attack] in 2010 in Tucson was announced by the so-called tombstone pattern of heartbeats. Thump but no ka-thump, so on paper or screen, it looks like Arlington National Cemetery. The lore around this is that patients do not survive, and that’s what the ICU nurse and others said. “We didn’t think we were gonna get to meet you, sir.” Mine was a cheeseburger MI, but the muscle was strong, just occluded by plaque. My “ejection fraction” was 70%, which is what most people have walking around the house. So my lungs were getting blood and my brain, oxygen. The point for me is how carelessly the staff spoke. The guy in the ambulance kept asking the driver to speed up. I wanted to say so too, after his first request, but decided to keep quiet and let these professionals do their thing. I guess the worst – and scariest – part of the whole episode was the loss of agency to people whose first impression was not encouraging.”
- “My late husband made several trips to the Stanford Emergency Room. Each time the experiences were different. Before the new facility was built, the old ER was old and terribly crowded, and patients on the beds were sometimes lined up in the hallways…. The facilities we were assigned to were quite old, outdated and not the best, but we received the best medical care each time.”
- “I’m not sure I could have tolerated all that time in a hospital. I remembering spending just 5 days in one while recuperating from my bypass surgery. How you put up with it for nearly 3 weeks seems inconceivable….After my surgery, I was basically abandoned alone in a dark room, fed unpalatable food, and forced to stay in bed 24 hours a day. I became so weakened that I fell and hit my head on the way to the john. I was lucky to get out in 5 days.”
- “Of my three cardioversions since March, two were at CHOMP [regional hospital] with general anesthesia. In the second of those, the surprised shout I gave in response to the ZAP woke me up. I felt almost no pain but was embarrassed that I’d shouted. The woman doing the anesthesia later apologized for the overly light dose….My third cardioversion was done in the ER of a hospital in Santa Rosa, where my original cardio doc I called told me to check in after I was feeling woozy with a pulse rate around 155. There the young doctor told me they don’t do general anesthesia for cardioversions. Instead, they administer a med that keeps you from remembering. It turned out that claim was pure bullshit. I remember every millisecond, vividly recall every watt of that effing ZAP! I think it left me with a mild version of PTSD.”
- “Ten years ago, I went from thinking my a-fib symptoms would subside and were of no consequence to being ushered to the front of the line at the ER by saying the magic words, ‘Heart issue.’ Luckily, my a-fib was successfully treated with medications and has been well-controlled since the original diagnosis with the help of a few changes in drug types and dosages.”
- “[After multiple Stanford Hospital admissions], I am beginning to know many of the staff by name. Uniformly, they have treated me well and with empathy. I am sure, as you suggest, that they were selected and trained to be thoughtful and kind….In addition, I was struck how the cardiologist is like the Wizard of Oz, standing behind the screen and directing the staff to follow well-worn patterns of treatment based on the data emitting from the wires and needles attached to one’s various body parts. The patterns involve a hierarchy of medicines and treatments dependent on the data. It’s interesting to see how the system shuffles the patient along lines well-known to them from training and patient observation.”
Many respondents’ negative evaluations of hospital management and experiences homed in on treatment delays. In my November post I spoke about my own “go with the flow” approach to scheduling slippages. Nancy recently added her own comment as my accompanying partner.
- “When you got bumped in the procedure schedule, my immediate thought was, ‘Someone has come in with an emergency who gets priority. I would like to think that the staff would do the same for us if our situation was an emergency. Triage is critical to a hospital’s smooth functioning and I accepted that our case might be in the second tier if someone was in danger of bleeding to death.”
When I reviewed the batch of predominantly negative comments about respondents’ hospital care, I couldn’t help but notice how some of those criticisms emerged from my friends’ recent experiences in the same hospital where I’d been treated so well. Ironically, it occurred to me that my superior quarters and treatment may have been influenced by my more grave condition. Just qualifying for the Heart Failure Clinic guaranteed me a private room. That said, I would not recommend lobbying for a seventh-floor vista by tip-toeing as close to the fatality brink as I did.
Lessons for Agile Agers
Multiple respondents said they appreciated the transferrable lessons I attempted to extract from my personal hospitalization experience. I had hesitated to draw these inferences, lest blog subscribers considered the distillation didactic and presumptuous. In the end, however, I hoped we can all learn from each other. Most in our age group will be hospitalized sooner or later. In that unfamiliar setting, I’m convinced we can all enhance the quality of care we receive (and even our own healing), by remaining alert, positive, courteous and cooperative patients.
Here’s a sample of respondents’ reactions to my Agile Aging lessons, first generic and then more narrowly focused on recommended self-advocacy.
- “I am happy that you wrote about your experience day by day. All your readers can learn how to handle similar situations.”
- “The detail and insights are on point and widely useful is my guess. You may want to think about broader circulation to seniors, maybe a revised version for the AARP magazine, for example.”
- “Perhaps your friends had less positive experiences because they had different attitudes. Your ability to accept dependence and deference but not give up autonomy and engagement seems very smart, and well executed by you and Nancy. Thanks for using your life to help our lives.”
- “Speaking as a physician, you are a veritable font of good, solid advice and have a wonderfully positive outlook on life….I am a 4th generation physician, the first of which practiced in a tiny town in South Carolina. My son is the fifth. I can tell you that the attitude toward medicine and doctors has taken a big hit in my lifetime. We have been socialized by government, sued by lawyers and commoditized by businessmen such that we are now referred to as ‘providers’; ‘professionals’ would be an improvement. Of course, a lot of it is our own damn fault, but I truly appreciate your attitude toward the medical staff, most of whom are dedicated professionals trying their best to help people.”
- “Your post should be of great help to us all. It is a fine line, however, between letting the doctors and nurses do their things (especially when the shit hits the fan) and speaking up for your own body and tolerances. You appear to have navigated it perfectly.”
- “As your narrative proceeded, I felt myself rooting for you to suggest people to self-advocate – something I have had to learn how to do from my own battles with a chronic disease – and, sadly, something that happens far less than it should. And there it was! …. I forwarded the post to my dad, because his companion has been having a number of heart problems, including some mentioned in your post. My dad read it, immediately printed out a copy, and, on his own, is sending it to his companion who just had a cardiology appointment yesterday. She and her cardiologist decided together that she is going to get her second ablation, using slightly different tactics this time. All that is to say that, by sharing your story, you are already helping others. Okay, now let’s have no more medical excitement in the foreseeable future.”
- “It’s tricky to get the balance right between accepting doctors’ advice and voicing our own concerns as patients. I don’t want to be a difficult old man. But I also don’t want to accept diagnoses without discussion…..I passed your post on to a friend from high school days. He had an ablation a month ago but is having recurring problems and is currently hospitalized for further work. He was appreciative of the observation shared in your post. Something good about having similarly aged people sharing experiences.”
Home-again Progress Report
On December 21, I had my latest consultation with my supervising cardiologist, eight weeks after my hospital discharge. His findings were uniformly encouraging. My healing process is on-track, with no negative warning signs. Blood pressure and heart rate look good. My heart-pumping efficiency is back in normal range. No evidence of a-fib racing or fluid congestion. My implanted device is functioning smoothly. Ready for resumption of a full exercise routine. We’ll gradually reduce my medications. Next echocardiogram and supervisory consultation, six months down the road.
I always welcome the end-of-year transition. Tying up loose ends. Reaffirming friendships. Looking ahead with hope. This time my mood is especially thankful. Happy Holidays, one and all.
Sincere thanks to Nancy Swing and Thom Sunshine for their before-and-after photos.