The Best Laid Plans

Heartbeat monitor

I called 911 for myself the other night.

It was one of the hardest decisions I’ve ever had to make. An introvert’s worst nightmare! Am I really having a heart attack? In which case it would be stupid to not call. Or is it “just” heartburn — which can sometimes feel like a heart attack — and would I be unnecessarily incurring unwanted attention and expenses?

 

I have well-controlled (for the most part), and well-monitored (with every-five-year endoscopies), Barrett’s Esophagus. So I know something about it. But this was different, I finally decided. Here’s one of the many articles I read that night that helped me decide. When you have all of the symptoms, you call.

I’m not going to give a blow-by-blow account of my 5 days and 4 nights in the hospital. Partly because it would trigger a friendly, but overwhelming, flood of questions and well-intended advice. Hopefully this blog post will predict and answer some of those questions. But also I’m just not up to it. There were many developments, and many things to notice, learn, and be amused or annoyed by, each day and each night. What they say about hospitals not being restful places cannot be overstated! I could write a book.

This was not on my schedule!

Is there ever a good time to get sick or to have an emergency? It’s one thing to plan an elective surgery around a work and vacation schedule. And planners like me wanna plan. But not everything can be planned. And if your calendar is not too full, things can be rearranged.

I wrote Organizing to De-Stress a Major or Chronic Illness for scenarios like when you’ve received a cancer diagnosis, or you are going to be recovering from surgery (planned or unplanned), or maybe you have a chronic illness. Sections include: Organize Your Medical Records; Organize Your Support System; Organize Your Home; and Organize Your Self. (NOTE: If you have experience that would be additive to, or corrective of, anything in that post, lease let me know. I’d love to consider including it in a future update.)

What that post doesn’t cover is: What if you live alone and have an emergency?

While I was waiting for the paramedics to arrive at my home, I at least had the presence of mind to put my 1-page Medical Notes summary of conditions, doctors, medications, etc. — which I had just updated, neener-neener — and my iPhone charger in my purse. (There was never any risk I would leave without my iPhone, which came in handy in more ways than I can count.) I figured I’d be there for hours, but I did not foresee that I’d be there for days.

Word traveled fast

One of the trickiest things — for single, organized, introverted moi — is deciding what to tell whom and when. The first person I told was my friend and colleague Miriam. And I only told her because we had very specific plans that day (Friday) and she would worry (and be inconvenienced) if I just didn’t show up. I also figured, since she lives near me and our plans together were cancelled, that she might be able to give me a ride home. Why drag anyone else into it? Surely I’d be ready to go home soon.

As the day wore on, I sent my regrets (sans explanation, because there was nothing definitive to report yet), to a Friday night Zoom group of friends.

There were a few other commitments that I easily postponed without explaining why. Which gave me until the next morning, at which time, if necessary, I’d have to tell my family because I might be missing Saturday Breakfast or wanting to sleep through it.

Otherwise, telling anybody anything would just freak them out, with the double burden to me of them not being able to do anything helpful — or me having to think what would help — and me having to reassure them that I’ll be OK, which I didn’t actually know yet myself. And then they’d have questions I couldn’t answer (or wouldn’t have the desire and energy to answer), and I’d have to update them later. Because now they would know. And they would be kind enough to ask after me again. Better to wait until I have something conclusive to report, no? Well, that’s how I think!

But things quickly escalated. A neighbor I barely know saw the ambulance and told a former neighbor, who told my brother. Mike (the brother) has been very helpful in terms of feeding my cats and bringing me things from home. But it didn’t stop there. It snowballed to the point where I felt kind of rude just saying no all the time — no visitors, no diagnosis yet, not now yet either, don’t need anything, thanks. (It was mostly via text, and mostly local folks, so it was at least people I know well and have previously given my cell number to.) Meanwhile, others who are also important to me knew nothing at all because they were grapes, or grape clusters, who were not attached to that particular rogue grapevine.

All the while I’m thinking: Make it stop! This is what Caring Bridge is for! Updating lots of people at once in a semi-private way. But not yet — not in the middle of an emergency! Better to set it up after you know a little more about what’s going on — and whether it’s really a situation that will warrant ongoing updates — and have decided whether it’s anyone else’s business — so you can predict their questions and answer them. It’s not for opening up a can of worms, dropping it, and running away!

It was not a heart attack, though

So, the good news is that it was not a heart attack, and my arteries are not clogged. We all know the cliche about a fat person being a walking heart attack waiting to happen. Never mind that skinny people can get heart attacks too, and that we have no real knowledge of most people’s actual health status.

But who knew how many heart conditions there were? And how many causes? Not me!

What I do have — the bad news — is fluid around my heart (cardiac effusion) with a bit of an irregular heartbeat (atrial fibrillation) thrown in for good measure.

Still no diagnosis

The disappointing news is that I did not have a diagnosis even by the end of my hospital stay, which was Tuesday. What’s causing the cardiac effusion, so we can treat it? And what about that pesky atrial fibrillation?

But recovery for this hospital stay is nothing as bad as the ordeal of a heart attack or heart surgery patient. I came home with 3 new medications, 2 new doctors (cardiologist and rheumatologist) and several different kinds of follow-up appointments.

Consensus is that it might be an autoimmune disease (yes, they tested for some of them, with no conclusive results). But it could also be a virus, which is more common (a mystery virus, not COVID) and which tends to resolve itself after awhile. No one sees any indication that the cardiac effusion is caused by cancer. Whew! And they’ve had plenty of labs and images to help

The follow-ups will involve many things I don’t need to go into and it may take me developing additional symptoms before they can figure it out. It will take time. I thought I had a number of good symptoms already — things I don’t talk about much because why? — and was all set to be happy with an autoimmune diagnosis. Why happy? Because even people with sucky autoimmune diseases usually feel a bit better with treatment, right? And it’s been a long time since I actually felt good.

Managing my disappointment at the lack of diagnosis is hard enough.

Please don’t expect me to manage yours, too!

Do I want visitors now that I’m home?

Heck no, LOL! I haven’t had visitors in so long, why start now? COVID-wise, I was already high-risk (for several reasons). I’m also triple-vaxxed. But now I’m probably more likely to infect you than the other way around, having been around so many people in the hospital. It’s not like I was in a COVID ward, but still. So. Many. People. Coming. And. Going.

Being in the hospital is exhausting! I need to rest. I’m really not worried about keeling over, and I can manage fine around the house by myself. If you were here, and we were talking, though, or — heaven forbid — walking around, and I experienced shortness of breath (dyspnea) my attention would be on my Pulse Oximiter and my Voldyne 4000 Incentive Spirometer (breathing exercise device). I wouldn’t want to waste my breath — literally — explaining it to you, or reassuring you.

I love texts, emails, and direct messages, though! (Phone calls were already not my favorite, and they require a lot of breathing.) And cute/funny/educational/motivational/beautiful posts on Facebook. Things to which I can respond at my leisure while I’m breathing deeply, between naps with my kitties.

Something might get lost in the shuffle

So, I missed a couple of meetings and had to reschedule a few things.

There may or may not be a newsletter this month.

A couple of projects are on the back burner.

It’s already been quite awhile since I was doing hands-on organizing, so it doesn’t affect me in that way.

But Odds Are We’re Gonna Be Alright. Right? Can’t plan everything.

When you have to call 911 for yourself, your best laid plans go out the window.

However, if WE have something in the works and you are worried about THAT getting lost in the shuffle, please don’t hesitate to ask me about it!

Playing the poor-baby card

Meanwhile — get ready for me to play the poor-baby card — if you want to express your good wishes to me in some way might I suggest the following?

  • In lieu of flowers (which I don’t need), or, say, a DoorDash gift certificate (which would be quite welcome if you do want to send something!) — why not do us both a favor and buy a copy of my new book?
  • In lieu of a get-well card — how ‘bout an endorsement of my new book on Amazon or Goodreads (or both), or a plug on social media, a photo of yourself with the book, or all of the above?

Oh, and if I ever did write a book about this experience, a few chapter contenders would be:

  • 18 hours in the ER
  • The hospital bed from hell
  • Traveling nurses
  • Faces in things
  • How is it possible you don’t know that test was performed? I have the results right here on my phone!
  • WTF, Dr? Pull your mask up!

OK, time for a nap with my kitties!

 

Please leave a comment on any of the things I’ve mentioned that you can relate to:

Have you ever called 911 for yourself?

Did word ever get out about you when you weren’t ready for it?

Do you like visitors when you are ill? Or, not so much?

Do you have anything to add to Organizing to De-Stress a Major or Chronic Illness?

 

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Copyright 2022 by Hazel Thornton, Organized for Life and Beyond
Author of What’s a Photo Without the Story? How to Create Your Family Legacy
Please contact me for reprint permission (other than direct social media links).
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Comments

  1. wow just happy you are ok…glad you called 911 and yes, I had an asthma attack before I knew I had asthma, ambulance came..rushed to ER…xrays done I think they assumed heart ..it was not thank goodness, but I had my husband then, my kids around, at this point in life, since Bill passed, kids have lives of their own and I live alone, who would I call?????? you gave me much to think about..hugs to you

    • It’s really a good question, who to call? 911 can get there faster than anyone else, and they’re better equipped to help. But even for helping think something through, I know several people who say they’re always available to me, but they really aren’t. They either have foregone landlines in favor of cell phones, and then their cell phone ringer is off, either for the night, or since they last (purposely or accidentally) turned it off (or down) and forgot to reset it. Or, if it’s not off, they are hard of hearing and sound asleep.

  2. I am so very happy that you are ok. And I am so very impressed that you made a blog post about what happened. You are very sweet to take care of everyone else’s concerns and questions while living with your own uncertainty. I hope your condition improves quickly.
    Xo

  3. OH MY GOODNESS, Hazel!!

    What an ordeal! Just so you know, I can relate to many of your scenario topics, but the one that catches me the most is about people learning before YOU’RE ready. And I’ve even done all the mental gymnastics about not being (or feeling) ungrateful for the ga-zillion offers to help, or suggestions for what to do, etc. The fact is that anyone who responds is doing so out of love…but then why do I feel so resentful? I think it’s especially difficult for us introverts…we don’t ‘love all the attention!’

    I respect your place and am honored that you took so much time to write about your experience and explain the situation.

    I am also personally proud of you for calling 911 all by yourself – that took a LOT of courage! I’m also delighted that you did NOT have a heart attack! I also trust that you will be well monitored by your new team of doctors.

    Meanwhile, the best advice I can give you is to give yourself permission to simply say “no thank you,” and do so with no guilt!! Those who know & love you will understand and will also trust that you will share more however and whenever you are ready and able. Just take good care of YOU, for all of us! 🙂 You are well-loved and respected!

  4. Well, that just STINKS! I’m so sorry you are going through this. You did the absolute correct thing to call 911 because we just don’t know what we don’t know, and better safe than sorry.

    We do a lot of auto-immune in our family, and I think they are no fun. Most people who suffer do so silently, while regularly “rallying” to get through the day.

    I will be praying for you, Hazel. For clarity, improvement, peace, wholeness, and joy.

    We never know what the next moment of our lives will bring, so thankful that this worked out as well as it did, friend!

  5. How a mysterious and scary emergency can be so entertaining and educational is such a Hazel thing. Hope your kitty knows how to make chicken soup…

  6. Thank you for this blog and the links to your blog on organizing with a Chronic Illness. It is on the top of my next to read list today. I completely understand the feeling of I still have no answers. It just sucks. Sending a hug, hope you can get a bowl of that good chicken soup you recommended and most of all hope you get answers soon.

  7. Oh Hazel! I am so glad you are OK, but frustrated on your behalf that you don’t have a definitive diagnosis. I’ll keep my fingers crossed for you and send a few incantations out into the universe that the doctors figure this out soon. I will read your blog post on Organizing to De-Stress a Major or Chronic Illness tomorrow.

    I do have a kind of funny story about calling 911 for myself that might entertain you (?). Awhile ago (I was much younger then) I had been to the ER and had an antibiotic prescribed for a possible UTI. I took the first pill and drove to the grocery store a couple of blocks from my house. In the parking lot, I broke out in hives and my breathing became asthmatic (and I don’t have asthma). I called the ER, and the triage nurse said, “Barbara, call 911. Did you hear me? Call 911.”

    I thought, I’m not calling 911 in the parking lot of the grocery store, so I drove home, called from the garage, and went to sit on my front porch. In Chicago, a fire truck ALWAYS comes first. The firemen clomped up on the porch in full regalia, asked to see the pill bottle, and said, “It says to take this with a full glass of water. Did you drink a full glass of water?” Yes, I did.

    Fortunately, the ambulance pulled up and both paramedics were women. They let me walk to the ambulance and get in. By now, my 80-year-old neighbor to the north and my 70-year-old hippy vegetarian hoarder neighbor to the south were clustered around the ambulance. Can we do anything, they asked?

    The paramedics were awesome. Very business-like, one of them said, Do either of you have a car? Yes, Andy the neighbor to the south said. She replied, Give me your number. She’ll need someone to drive her home from the ER.

    And that’s what happened! I was driven home in a rusting Datsun 280-Z, whose passenger door was almost falling off.

    Fortunately, there were no long-term repercussions, so no one who really knew me found out unless I told them.

    I do have a lot of experience with the questions you raise, however, from my several hospitalizations and surgery recovery last year. Prior to the surgery, I asked a friend to do some research for me on what assistance I might need afterwards and I asked two other friends to be in charge of organizing meals and help with dog care for the month after surgery. I found that enormously helpful, and as an introverted extrovert, I found those once-a-day, very short visits to drop off food, helpful in preventing isolation.

    • LOL, I would have done the same thing! (Driven home from the grocery store, given it was so close.) And yes, it was firemen first (4 men) and then 2 paramedics (1 man, 1 woman) I was horrified when they all agreed I had probably not had a heart attack and asked me: Do you want to be taken to the hospital? Holy crap! I have to decide again? I thought I’d already decided when I called 911! But no, 6 people in my living room, all staring at me, mentally tapping their feet impatiently, and pointedly giving nothing away as to what they think I should do. I don’t know if it was a liability thing or a COVID-era thing.

      Yes, Barbara, you are in the perfect position (unfortunately) to give me updates on my Organizing to De-Stress a Major or Chronic Illness blog post. Thank you for commenting on this one!

  8. OMG, Hazel! That sounds like a really scary experience. I hope you get some closure on the diagnosis and treatment soon so that you don’t have to go though this again. Hugs!

  9. I told you much of what I wanted to say when we texted, but I really empathize. Between all of my hospitalizations in 2009 (and all my blog posts about it) and Paper Mommy’s 2016 and 2017 experiences, I think we can match you point-for-point on those chapter titles.

    But what matters most is that you are home and resting. I share your frustration that you don’t have all of the answers you want, and the only thing more annoying than that is, as you so wisely said, “Managing my disappointment at the lack of diagnosis is hard enough. Please don’t expect me to manage yours, too!”

    As promised, my role in your self-care will be distracting you from the whole kerfuffle, confident in the knowledge that you know I care, you know I want to hear whatever you are willing to tell me without pressuring you to go beyond that, and that you know I’m here for whatever else I can do for you. And if that means continuing to beat the drum for your book, so be it!

    As you find your rhythm (no AFib pun intended), your fan club will be out here. Just take care of Hazel!

  10. I am so sorry you have not been feeling well and so impressed that you called 911. I have never been in quite that spot, but have had issues that I chose to hope would go away without medical intervention. So far they have, but there will likely come a time…

    I hope I value myself as much as you did to place that call. Good for you! And I am sending good vibes for you getting the answers and treatment that will improve how you feel. Hugs!

  11. I’m so glad that you are home, resting, and calling the shots. So grateful that you are OK, even though I know you’re waiting for a clearer diagnosis. While it sounds like you prefer to have your quiet, I’m comforted to know that you have a community of people that are close by, care, and can help if and when you need/want it.

    What struck me was how different emergencies are when you are living on your own. I’ve experienced many emergencies, but most of them have been my loved ones going through something. So I was either calling 911 for them, or got called to ‘come help’ once 911 was called.

    Only once did I call 911 for myself. It was in college. While defrosting the freezer in my apartment (with a knife…have since learned NOT to do that,) I punctured something and gas started oozing out. I got scared and called 911. LOTS of firefighters showed up. All was fine, except for the freezer.

    Continue to rest and take care of you.Thank you for reminding us about the importance of being prepared for the unexpected. Big hugs and love.

  12. How frustrating that you don’t have a diagnosis. As a former cancer patient I relate particularly to the fatigue that comes from having to tell everyone how you are and how they can help you.

    At the very time when you have nothing left to give, you’re besieged with well-meaning requests to tell others how to help you without coming across as rude or inconsiderate. I was shocked at how many people managed to make my diagnosis all about them.

    I’m glad you’re home and can turn these stinky lemons into a delicious lemonade post.

  13. I’m here due to your Facebook post which lead me to your blog post. I’m sorry for your trip to the ER. I have also called 911 (x3) as a single person living alone with pets. My brother is my “designated person,” (as I am “his person” for the same reason) but he lives about an hour away from me. If I were to be admitted to the hospital, he would deal with my two dogs. Getting a ride home fell in the lap of an aunt who lives close to both me and the hospital.

    Your post brought up a few other ideas that I had not thought of on my trips to the ER — 1) Bring chargers for ipad and phone, 2) Bring an extra set of house keys in case some one needs to get into my house who doesn’t have keys.

    Similarities to your experience — 1) Having to make *that* decision to go to the ER after it was determined that I wasn’t having a heart attack. 2) Being an introvert and not wanting everyone to know about it. 3) Not getting a definitive diagnosis. 4) Saying “no” many times when asked if I needed or wanted anything. Fortunately, my ER trip didn’t turn into being admitted to the hospital because they couldn’t find anything wrong with complaints of breathing problems and a heaviness on my chest.

    In these days of Covid-19 and its contagious variants, going anywhere near the hospital is risky. ERs are jam packed (my visits took me around 8 hours). Being admitted to the hospital may mean being in a bed in the hallway. So those decisions to go to the ER were not made in haste. But we both lived to tell our tales.

  14. Your story reminded me that I was diagnosed with Barrett’s Syndrome during my early years as a a personal trainer. After other tests ruled out heart and other conditions as causes of on-going left upper back pain, I was told I must take a popular acid-reducing medicine to control the Barrett’s they determined to be causing the problem. After John and I researched the medicine, we found it could inadvertently allow more acid to flood the esophagus by suppressing the sphincter muscle, so I chose – despite dire warnings from my gastroenterologist – to not take it. Turns out an allergy to Thiomersol – a mercury-derived preservative used in vaccines and other meds – can cause such back pain as a side effect. Stopped taking the anti-inflammatory Feldene – which contains Thiomersol – prescribed for me after jaw surgery and the pain completely stopped. Then, even more critically, I found I was gluten intolerant after a life-threatening infection from my jaw surgery prevented me from eating solid foods for several weeks. A liquid diet, which obviously eliminated baked goods and pastas, resulted in completely curing debilitating arthritic-like joint pain (I had been scheduled for bilateral knee surgeries which I subsequently was able to avoid). Intolerably itchy shins and tremors in my hands and fingers also disappeared. My doctor was amazed when a follow up endoscopy showed zero evidence of Barrett’s. It has been 15 or so years and I still don’t experience issues unless I inadvertently ingest gluten or mercury-containing products. So grateful I can avoid the damage and side effects most of the time. After hearing that some of my clients or their relatives have been dealing with a sudden onset of A-fib and other conditions recently, I wonder if there are any kind of ingredients we are inadvertently being exposed to that that may cause individual reactions in susceptible individuals. Thanks for sharing your 911/hospital/explaining to everyone experience; sorry to hear it has been such an ordeal but I’m glad you’re home and healing. On another note, just celebrated the 29 year anniversary of the day you witnessed our I Do’s! Hard to believe how fast time passes.

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