Don’t Say “Heart Failure” – Don’t Even Say “Fail”!

see no evilMy husband has been diagnosed with heart failure. I searched around to educate myself and got more than I bargained for.

The main shocker was the fact, the average patient with a failing heart, is not told they have heart failure. Apparently we’ve morphed to this.  Hey! If you tell a person their heart is failing, they may feel bad! Or they may get angry. Or they may cry or otherwise take up the doctor’s time.  This is widespread by the way. “Your ticker this or that…”

I learned this reading conversations of medical people.  Guy is in the hospital, actively dying of heart failure.  The nurse says, “your heart failure…” “I DON’T HAVE HEART FAILURE!”

Er… okay!  I got this message, loud and clear: not telling patients upsetting things is the norm at this point.  The new “don’t ask, don’t tell”.

This probably goes back further, but the first time I encountered this type phenomena, was about 25 years.  My daughter was starting school and I found out there was no letter grades or pass/fail.  The lowest grade was called, “partially proficient”. I

ranted about this back then, to the school and also on my blog.  I felt it was misleading, at best. “Partially Proficient” implies the child is progressing and all is good. Your child is on track!  Well, come on!  Some kids aren’t on track at all.  These grades gave parents a false sense of security.

Now think of this standard being applied for four or five years. Your kid is actually failing, unbeknownst to you and probably unbeknownst to your child. By the time the veil drops… well it’s too late, in most cases.  You kid will never catch up. This stuff makes me irate.

Then today’s client, who said I could use her as an example, said something horrifying.   She works with young children in a special group.  The children are varied, it’s the parents with the commonality. They work in a certain field. The rule at her school, is you may not tell the parent anything negative.  Anything. Ever! 

As an example, if a child sits in the corner all day, rocking back and forth, not interacting at all, the parent will not hear a word about it. Why? It might interfere with their job. Got that?  They want the parents WORKING.  Is it me or is this dark?

This is related:

Why Is Everyone So Messed Up?

Is your doctor honest with you? How about your kid’s caregiver or teacher?

Just as important, is it possible to be honest with you?

I’m sorry, but for many, that’s a hard no.

If you’re a doctor or an educator, so you give the patient or the parent, real information?  Please use a fake name and tell us what’s going on and why.

27 thoughts on “Don’t Say “Heart Failure” – Don’t Even Say “Fail”!”

  1. sorry about the diagnosis. thats rough. please look into taurine as safe supplementation for that condition. all the best

    1. Well, my point here, is if you want to know the truth, you better explicitly ask for it.

      Also, many or maybe, most doctors post their note on patient portals. If you look at yours, there it will be!

      Legions of people really can’t handle the truth (nod to Jack Nicholson). If you are someone who can, you better let your doctor know, directly… and also check the portal, because what I am saying here is REAL.

      1. Yes, but I’m saying that’s not how it should be. Posting something on the portal is not directly informing the patient. That’s negligence. I understand maybe someone doesn’t want to know, but they should at least ask the patient if that’s the case.

        1. We’re living in a world, where virtually nothing is “as it should be”. There is nothing promising on the horizon, that might change this, so I write about navigating this mess we’re in.

          Also, in defense of doctors, who may deserve it – if you want people to talk you like a grown-up (not you, specifically, this is general), then make sure your behavior and your communications, indicate your preference. Because the majority feels otherwise.

          1. No doubt. We have to live in the times we are alive, as you have said, this is the game board. I have Venus trine Jupiter in my chart, but mitigating factors have made it irrelevant virtually my entire life. The only gold is the gold we claim, wherever we are, whatever we choose to do.

  2. I went along living my life as though everyone was telling me the truth. I am a terrible liar and a pretty literal person but importantly, I try to be a good person, and I naively thought others operated the same way. I met my husband when I was 22, but we didn’t start dating for a couple of years. Somewhere in that time frame, he introduced me to different parts of the Internet where the recounting of historic events did not occur the way I was taught. Let me tell you, I was shocked. It had never occurred to me that my teachers weren’t relating the absolute truth. That was almost 20 years ago now, and it was like something clicked in me and my overturning of the way I understand basically everything has occurred in bits and pieces, with a big increase in speed in 2021. Basically if a thing is at all mainstream, it’s almost always not as it is represented, and for the most part the truth is the opposite of what is presented.

    I come from a dysfunctional family but it took me a long time to even see that (Pisces 4h). Finding out that what my parents told me was “in my best interest” was really in their best interest shook me pretty hard. However, the bandaid is off. If your own parents would do a thing at your expense, why would most people not hesitate to behave the same way? Especially when society is programming people to behave in that manner? That is why I can handle any kind of truth. I have already been cut me to my very core. I WANT to know the truth, no matter how brutal. It helps me to live an authentic life.

    Elsa I am sorry to hear about your husband’s heart failure. Mind the placebo effect by keeping a positive attitude and believe in the body’s amazing ability to heal.

  3. A friend of mine has had heart issues from birth and she’s been told off and on that she’s having heart failure, oh, never mind, she’s not. She needs a valve replacement, never mind! She needs a heart transplant, oh, never mind, we’re not going to do that. She has or has not what I call a case of “Schrodinger’s POTS” because whether or not she has that switches every few days to a week. Basically, they have no idea what’s wrong or how to deal with her and her heart goes into arrythmia with no rhyme or reason, she randomly passes out, ER’s refuse to help her because she’s too complicated….it’s a mess. I have learned that heart stuff confuses everyone, including The Experts At Stanford she deals with. She’s a professional patient at this point and she’s said they didn’t want to tell her openly she was having heart failure (or not) or needing a heart transplant (or not) and she figured it out on her own through years of experience, reading her own charts, everything she’s educated herself on, like “oh, they’re making me see a therapist, that’s part of heart transplant protocols.”

    I’m sorry to hear the soldier has this going on, and I hope they can figure out what to do about it.

  4. I could be written off…but it is from a good place (my heart).

    It is not up to doctors or caregivers or who ever else…it is always up to US.

    What does that mean, dig to the deepest levels for the truth (medically on the body), get 5 opinions from who ever (in their field) and more importantly never put your trust in someone else paid to give you the supposed ‘truth’ on your body and where it is at.

    Most of all – DO NOT INTERNALIZE THE DIAGNOSIS YOU HAVE BEEN GIVEN (heart emoji with gentle love)….the body will fail at that point. OPen yourself to original out of the box thought and action.

  5. Sorry to hear that Elsa, my best wishes and prayers for you…My MIL had “congestive heart failure”, drank one shot of whiskey every night after dinner, and lived to 93, but that’s probably not the kind of heart failure your husband was diagnosed with…..

  6. I am sorry about your husband, hope that he is well treated and is as healthy as he can be with that condition. I understand not wanting to know. My uncle found out last autumn that he has had many minor strokes. They can operate on him, however it might not work, and if they do and it is a success he will have a temporary paralysis on half of his body. He says all the time, that he wishes he did not know, he is afraid of doing the wrong thing, and suffering the stroke that might kill him, it will happen regardless( but the worry stresses him out). I am the same, I have some things I have to convince myself off, that might be purposefully ignorant, but if I take it away, the brutality of the hopelessness is overwhelming.

    1. Thanks for posting this testimony. I know there are people like your uncle and this is part of why I wrote this. Many would assume they would be given information in plain language – it’s not the case. I think consideration for people like your uncle is the norm at this point. If you want clarity or details, you’re going to have to be very clear with your doctor.

      Additionally, if you want to know how your child is doing in school…well, it may not even be possible.

      I’ll add, people like your uncle (or you), can and do say, “Don’t tell me…” I was just arguing this a few days ago. I feel your wishes should be respected, as you know what you can and can’t handle.

      Personally, I would feel duped if a doctor did not inform me. It’s like a friend who knew something about some guy I was dating. “WHY DIDN’T YOU TELL ME?”

      We weren’t friends after that. Different people have different ways. I identify myself as someone who wants to know, which is fine. Others do the opposite – also fine.

      1. Absolutely. Also, it is highly unethical to withhold information that can enable anyone to make different choices or have time to maybe change an outcome. I want to know most things, however those I don’t is my responsibility to express to others ( it can’t always be a choice) With kids it is very disturbing to think of withholding info, one could really uplift someone’s future by just informing of things that might be important to know. At the same time , I find it difficult to “pass” judgement, I don’t know if it’s just me , but it is harder and harder trusting my own competence and I see this in others too. So if I see someone’s kid and there is something unusual, it would take a lot for me to say something, not just to protect parents, but on the chance I was wrong. Sorry for the long reply🙈. Really hope your husband takes care of his heart and gets well💕

  7. Let me give you an example of the opposite kind of doctor.

    Me: Doc, my friend needs a liver transplant and I’m a match. Do you think I could be a living donor?
    Doc: What do you want to do that for?
    Me: Seriously? My friend needs a liver to survive. He has cancer (not liver cancer)
    Doc: No, they’d never take you. You’re missing a kidney, you just had a parathyroid removed, you have Hashimoto’s…
    Me: Are you sure I can’t donate?
    Doc: I doubt it. They want healthy people for something like that.

    So tact is definitely not one of his virtues but I never worry about him sugar coating anything. I seeked him out after years of telling my endocrinologist that I was beyond exhausted and I knew something wasn’t quite right. I thought my thyroid meds needed adjusting. She just kept telling me to go get some exercise, because, you know, nothing cures complete exhaustion like exercise. My blood work came back high for calcium a few years back and I told her I thought my parathyroids should be checked as I had one removed in 2011 and I know high calcium on a blood test is almost always hyperparathyroidism. She wouldn’t even run a PTH. As soon as I saw the new, tactless doctor, he immediately thought I had a parathyroid tumor so he ordered all the blood work (under the sun, I swear. It was like 13 vials of blood for a complete workup). Sure enough, Calcium was 11.8 and PTH was over 100. After years of suffering because my endocrinologist ignored me, I had my diagnosis and I scheduled surgery at the most experienced facility in the world because I know how tricky this surgery can be, having gone through it once before.

    Moral of the story – if you find a good doctor, even a tactless doctor, keep him/her.

    Second moral of the story – if you have high blood calcium (over 9.9), demand the doctor run a PTH (parathyroid hormone) test and if it is over 30, call the Norman Endocrine Center in Tampa because most doctors do not know how to check all 4 parathyroids to verify how many need to be removed. Never accept the excuse from any doctor “we’ll watch the calcium level” because there is no reason for it to be high. Also, calcium levels fluctuate. It might be normal the next time but it will go back up, so don’t let that fool you. Most doctors just don’t know how to diagnose this and that’s why so many people suffer with it until they die. It won’t kill you directly, but it will cause other things that will kill you, or make you absolutely miserable (hello kidney stones). To see a list of symptoms:

    Elsa, if you don’t allow links, please feel free to delete. It’s just that I know how under diagnosed this is (mostly because women suffer from it more than men, so of course) and if I can help someone who is suffering, this is a great way to spread the word. This falls under endocrinology but as you can see from my story, even the “specialist” didn’t diagnose it, in spite of my past history and all the symptoms I had (sudden onset kidney stones is a huge red flag that she ignored).

    1. Sandy, you are right, this place is the best. I have two friends who have had this condition and went to the Tampa clinic for treatment.

    2. Avatar
      the laughing goat

      Thank you for this information! I have Hashimoto’s and am experiencing at least 5 of the listed symptoms just by quickly scanning the list. 😯 I need to find a new endocrinologist anyway; the NP I have been seeing is not really that thorough.

    3. My gram had this but the parathyroids were spread throughout her body couldn’t locate them. She went to a hospital in Bethesda Maryland. Calcium was through the roof up and down most of her life. Lived to her 90’s tho.

  8. (short notice, I live in a small european country so my experience might differ to that of the current situation in the US but I think some things apply regardless)

    It is dark, that’s for sure.. on the one hand, as far as education goes, it’s a very thin line one has to walk, between slapping a category on a still evolving person and ignoring hard facts.
    Take for example the difference research has shown between students with fixed vs growth mindset (this has a been a rather recent discovery).. that’s not to say one shouldn’t be precise with their students’ progress but maybe the use of non-conclusive terms doesn’t feel clear enough to those outside of the schooling system – or it might even allow for lazy teaching, which is an issue .. obviously this is vastly different to medical situations where clarity might be a life-or-death matter

    Adding to the above, it’s sad to see how many parents are advised to look more into issues their kids might be having (in terms of learning or emotional difficulties) and flat out choose to refuse the advice.. sometimes it’s just easier to blame the schooling system but teachers can only do so much (btw the teaching profession is one with some of the highest rates of burnout and that’s no coincidence).. Do the parents in that facility take a moment to spend time and observe their kids themselves or are they so wrapped up in their professional achievement they just transfer the responsibility to someone else? That is dark as well, if you ask me, but happens a lot

    One of the questions that such discussions bring up for me has to do with the structure and goals of education nowadays.. what type of future adults is our society creating, who decides on the directions taken and what do people demand or accept as a given minimum? Education is easily turned into a scapegoat but do people really notice when deep structural changes with real consequences down the line, occur?

  9. Hi Myrna,

    It is so worth the trip to Tampa. The first surgery wasn’t done in Tampa; they did not take the insurance I had in 2011. If I had gone to Tampa instead of getting the surgery at a local hospital, I wouldn’t have needed the second surgery because they check all four parathyroids in Tampa. I had two tumors but since the doctor didn’t check the other three, I didn’t know and suffered another 13 years besides the many years of suffering with the first one.

    It’s amazing how many people (women mostly. Men are always taken seriously when they complain) are never diagnosed. It will shorten your lifespan if not addressed. My memory was so bad I was convinced I was suffering from the early signs of dementia. Amazing what too much calcium in the blood will do to you. But tell a doctor you’re exhausted and your memory is bad and you forget what you’re talking about mid sentence, and they tell you something stupid, like welcome to getting old. I’m now post op 3 months and I can hold a conversation and remember what the heck I’m talking about.

    My kidney cancer may have been from the undiagnosed tumor; certain cancers are suspected to be caused by an undiagnosed parathyroid tumor so it is worth getting checked out if you recognize yourself in the list of symptoms (link in my first post above).

  10. I hope your husband finds the best care through all of this! lots of wishes for strength, clarity and courage to both of you <3

  11. Avatar

    I’ve spent most of my life recovering from an obscured pain. It consumed my entire body. It was to destroy me. I found a way out with help. I’ve worked with this person for 13 years now. It hasn’t been a walk in the park, more like a form of torture. These past few weeks I let go of so much pain in the form of thoughts and feelings. Healing is soul searching. I believe God reevaluated my life for me and has put me on a path for Divine Grace. I didn’t accept my condition as final and I’m coming out of poverty to fame. Blessings and Love to all.

  12. The babying. It’s so misleading and, frankly, disrespectful. At the end of daycare day, I always get “he had a great day!”. Every day… It’s just not realistic and I’m left guessing. At least I can casually chat with some staff directly and get a more realistic picture that way.

  13. I am Taurus like your husband and I have been going to heart dr the past year and they keep saying the tests are ok (ekg) but I still get chest pain at night…now I’m worried they aren’t telling me ..they did say I have an arrhythmia …we did just have this experience with my child he is seeing a neurologist for migraines and they mentioned his brain injury from birth and I was like WHaT brain injury ! Still trying to get information there…
    Also I worked at a school and there were certain parents we did not even give a failing grade to the child. They had to retake tests they failed to get a grade that made the parent happy. It wasn’t the parents job that was the reason it was how difficult they were to deal with calling every day etc. I am not a teacher but I worked along side these people who did these things. Other schools I worked at might have acted this way for the parents who were administers or principal.
    No wonder the world is so incompetent..passing failing kids not correcting behavior they prob grow up to be dr who don’t tell you that you have heart failure!

  14. Gosh sorry to hear this about your husband. I’ve had the grade example – was a colour system, my kid went from red to yellow, so I thought, at least there’s some progress … some hope … get in there to find out they only want blue or green … red and yellow better think about their next destination … except they didn’t say it that blatantly and when I pretty much asked what this meant for next year the teacher said ‘I just teach who they send me’ (which she later denied saying- no bedside manner at all)… I knew there and then we were on the hit list … even though they didn’t have the balls to say it … after my outburst the sh*t colour system at least got some words attached to it! Lol!! Well I can laugh now, I was fuming… that place should never even have taken my kid in the first place, but that’s a whole other story full of the same sh*tty dynamics!

  15. @elsa …per Google…”Groundbreaking research shows that a plant-based diet doesn’t just prevent heart disease but that it can manage and sometimes even reverse it. ” I feel you are a healer with your garden. All the best to your soldier and your family.

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