16 thoughts on “Goodbye, hospital. Hello, home! And other scary things.

  1. Coordination always seems difficult, especially now and the term “check and verify” is my mantra now.

    I was quite surprised that there was no folder/binder for me to read/have that would have saved them time and questions, or even a pre-op, post-op class, much like maternity care and planning.

    A PR intern could interview and draft one for the cardiac team I would think.

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    1. I love those suggestions – especially using maternity care/planning as the template. No new parents would leave the maternity ward without a whack of information about infant care (e.g. in our province, our free book is called “Baby’s Best Chance” – given out to every new Mum).

      The more basic information we can arm patients and their families with (whether on the maternity ward or on the cardiac ward!) the better-prepared they will be when strange new things happen at home. And having something in writing means we can read – and then re-read – the specific parts we need to learn more about at our leisure.

      Take care, stay safe. . . ♥

      Liked by 1 person

  2. An important topic. A year ago I had heart surgery; all but one of the nurses were amazing. Once home, I was told to contact the surgeon’s nurse coordinator, who minimized and dismissed my concern about a troubling cough that became severe.

    I had to contact my own providers to get help. Then the nurse had the audacity to finally call, shock me with her verbal abuse and hung up on me. Total nightmare.

    Took months to recover from the trauma. Still amazed it didn’t undo the good done by the surgery.

    Thanks for your post.

    Liked by 1 person

    1. Good grief! She hung up on you?!? I hope you were able to report that unprofessional behaviour at the time. Unfortunately treatment like this can happen when we’re feeling absolutely vulnerable and afraid and NOT at all able to be our own best advocate. I also wonder whether that nurse would have verbally abused and hung up on you if you’d been a male patient.

      No wonder it took you months to recover. If only healthcare professionals (and I use that term loosely in this case!) were remotely aware of how damaging this kind of behaviour can be at at time when we’re reaching out for their help.

      I hope you’re doing much better now, Grace. Take care, stay safe. . . ♥

      Liked by 1 person

  3. After an emergency quintuple bypass open heart surgery in 2010 at age 49, my pain was excruciating, yet I was grateful to be alive and that all had gone well during the 8-hour surgery.

    Nonetheless, I felt shocked when – on the third day after the surgery, I was informed that I’d be discharged the following day. I did not feel one bit ready to go home, and when I mentioned it to the cardiac nurse, she told me that I’d be safer at home because in the hospital I ran the risk of getting a Staph infection.

    Once home, neither my family nor I knew how to handle my care because I was still in a lot of pain, and when my husband and my sister helped me to lie down on my bed, I remember screaming like a baby, because I was not ready to lie flat on my bed; my scar was still tender and my sternum felt like it was going to break apart again.

    This was only one of the traumatic experienced I felt during my first days at home after my hospital discharge. I felt that I needed at least another 3-4 days under professional hospital care. And not to mention the need of emotional support which I did not have, which motivated me to search it online. That’s where I found WomenHeart Connect on Inspire.com, where I virtually met women with heart disease sharing their experiences.

    During my open heart surgery, lots of nerve endings were cut inside my chest, causing my recovery process to take longer due to the extreme pain caused by the regeneration of nerves. On the virtual support group, I was able to find answers to my desperation, and that’s how I was also connected to WomenHeart, and a year later became a WomenHeart Champion.

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    1. Hello my heart sister Yaskary!

      What a horrible ordeal you went through at home after your hospital discharge! This was an example of how bed control (“You’re in a bed. We need that bed!”) becomes more important than patient care. Unfortunately, patients don’t get to dictate to hospital staff how long they would like to remain in the hospital.

      But this also demonstrates a lack of pre-discharge planning from your hospital staff. Teaching open heart surgery patients AND THEIR FAMILIES how to safely get in and out of a bed, roll over, sneeze, cough, and move around is a critically important part of any post-op discharge plan for heart patients. It’s important both physically and psychologically. Your family members who were not trained to properly help you must have been equally traumatized by your screams. A nightmare!

      If the risk of hospital-acquired infection was as real as the cardiac nurse described (and this CAN be a genuine danger to in-patients – I’ve seen entire wards infected by drug-resistant ‘super bugs’ when I worked in a hospital) – it’s also an argument for arranging either regular home care visits or convalescent facilities. This appalling lack of discharge planning seems to suggest that a patient’s need for appropriate care ends as soon as they boot you out the hospital door.

      The only silver lining in this hellish experience for you was discovering the WomenHeart Connect online support community and ultimately being trained as a WomenHeart Champion – as I did, too.

      Take care, stay safe. . . . ♥

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  4. Such important points. Before my Metastatic Breast Cancer diagnosis, the only other times I’d been hospitalized was to have babies.

    There are so many struggles linked to being in the hospital and leaving. Such trauma that is unrecognized and ignored.

    Thank you for your post!

    Liked by 1 person

    1. Hello Abigail – I think hospitals feel like relatively foreign places for most people, but when you’re there for serious medical treatment (like for cancer), everything can seem scary and overwhelming. Ironically, it’s a bizarre reality that a hospital experience that’s absolutely awful for patients is often absolutely routine for the people who are doing the care (that’s the unrecognized/ignored trauma you mention!) – as I learned after being admitted to the same hospital I’d worked in for years! More on that here.

      This may help to explain how, when doctors or nurses become patients, they are so often gobsmacked by how dreadful being sick can actually be. I don’t recommend that all medical students should become sick enough to be hospitalized, but that experience sure would produce med school graduates with an entirely new sense of compassion and empathy.

      Take care, stay safe. . . Happy New Year to you! ♥

      Liked by 1 person

  5. How timely for me! Just home from the second and third hospital visits of my long life, the third being a short return for fluid accumulation of unknown origin, and the second for SAVR (Surgical aortic valve replacement). The last hospitalization, I timed my longest uninterrupted sleep period at 2 hours, 40 minutes.

    Having been aware of my eventual need for aortic valve replacement, I have followed heart issues for some time, including your blog and Dr. Krumholz. As you’ve written elsewhere, I am reading the word “heart failure” on the discharge documents and hearing it as well.

    Other than these issues which your blog has helped keep me abreast of, the surgery, recovery and rebuilding my stamina go well.

    Liked by 1 person

    1. Good grief, Ray – 2 hours, 40 minutes of uninterrupted sleep? How are patients supposed to emerge from such treatment in any state of healing?

      I’m so glad to know that your recovery and rebuilding are going well. Take care and good luck to you… 🙂

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  6. I am grateful that my heart attack occurred before the COVID appeared. I can only guess the care that patients are not getting now.

    I was able to take my IV tree to the bathroom less than 6 feet away. But when discharge happened, I had not been taken for a walk around the ward. I went from bed to wheelchair to car and home. The first time I walked any distance was into the house, into my living room and collapsed into my barcalounger.

    And you are right,, where was the convalescence?

    Liked by 1 person

    1. Where is the convalescence indeed!?!?! Sadly, this is an important but now-essentially discarded concept in medicine, as I wrote more about here.

      Chris, your story of not being walked around the hospital ward before being sent home is a good example of how hospital discharge is now far more about bed control (“You have a bed, we need that bed!”) and NOT patient care. That’s appalling!

      Take care, stay safe and Happy New Year to you!

      Liked by 1 person

  7. I was very interested to hear about your discharge lounge as a segway for discharged patients on their way home… even being staffed with an RN.

    In the hospitals here, that I have been associated with, the “discharge lounge” was staffed with a volunteer and it was where patients were sent to wait for their ride home if it was taking too long and the hospital needed their bed.

    Your version sounds much more helpful!

    Liked by 1 person

    1. Hi again Jill – I’ve heard of these so-called “discharge lounges” that are basically indoor parking lots for patients taking up bed space (as your first three examples – below – illustrate so clearly!)

      * sigh! *

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  8. You know….as I perused in my mind my numerous hospital discharges, I realized that I only remembered the problematic ones: like the time I spent three days in the hospital on cardiac monitoring to test a new medication that could have serious arrhythmias as a side effect, and then when I was discharged, no pharmacies had the drug in stock to fill the prescription. . .

    Or the time I had a stent placed and I sat waiting an hour at the hospital pharmacy for my essential clot-preventing medicine Plavix, then was told it would be at my local pharmacy. I went to my local pharmacy and they had no knowledge and I had to call my cardiologist and drag him out of his exam room to “fix” the situation. Meantime thinking my stent would clot any minute.

    Probably the most memorable discharge was leaving Mayo Clinic in Minnesota 5 days after my re-do open heart surgery, stay in a hotel room 2 nights and then fly home to Denver. I meditated all the way home.

    But just the thought of being 1000 miles away from the surgeon that saved my life was terrifying. Knowing that if I had any complications I would have to go to the Hospital where my first open heart surgery was a fail. My cardiologist must have been scared too. He gave me his personal cell number and told me to call anytime.

    Thank Heavens, All went well in my recovery.

    Liked by 1 person

    1. Good grief, Jill. Those three hospital discharge examples should be taught in medical school as cautionary tales of how critically important it is to connect the dots when you’re sending a patient home from the hospital.

      A simple error like not confirming that a drug order had been faxed to the local pharmacy can not only cause the patient extreme stress but drag a cardiologist away from other patients!

      And all of these stressors are happening at a very vulnerable and overwhelming time for the patient!

      Take care – Happy New Year to you. . . ♥

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