Do right for your heart but be prepared for an awful ride

Sunset at sea. Text: There is only HOPE WHILE there's Life. Alicia Butcher Ehrhardt

I HAVE DODGED A NUMBER OF BULLETS

I will be terrified for a while.

I will have to deal with emotions both new and accumulated, and emotions are very hard to deal with if you have CFS, partly because the adrenaline which is the aftermath of much emotion takes forever to process out of my body, and so makes me ill for far longer than it is usually worth the original emotional outburst.

I have to deal with new medications I didn’t ever want to take, and which fight with CFS (potentially). I may have to deal with both more pain and with the cardiologists being unhappy I’m taking even the amount of pain meds I was taking before.

And I will have to learn to be more grateful for and more gracious about what may be the most important outcome: that, even in a reduced capacity, I’m still alive. Funny that, right?

I process things by writing about them (the brain doesn’t like to do internal processing, even when it can, any more).

The whole subject is incredibly boring.

And I have some obligation, willingly assumed, to share.

As part of a community, I value my online friends

Enormously. Probably more than most people.

I have a loving family – I am immensely grateful for them. And for the space they give me. They’d rather have me live in Mexico City with the rest of my sisters, live that lifestyle with help, and socialize more. I’ve had a limited capacity for that my whole life, but it doesn’t mean I don’t value it and feel wistful about it. I hope this post will clear up some of the details of the past three weeks for them, too.

But I’m trying to make sense of it AND bring my online friends up to date simultaneously, because there is no energy to do this for each of you (I will probably be sparser in replying to comments for quite a while), and the main lesson is easy and the personal details pretty obvious if you understand limited energy.

I don’t like it when my friends disappear from the blogosphere – but if we knew each other better we probably would be communicating by phone or email more. Even very good friends, family, people I’ve known for decades will have to be content with this for a while. I start from no energy when I’m my most ‘normal’ – and this ‘event’ (as the cardiologist calls it) has taken, and will take for a while, everything I have.

I OWE EVERYONE MORE. REALLY.

THE SHORT(EST) version

I had chest pains Superbowl Sunday after the game (no, I don’t care at ALL about sports, didn’t watch any of it). Kick in the chest by a mule.

Because it was Superbowl Sunday, I didn’t immediately go to the ER or call 911. This was my ONLY mistake, and it could have been fatal, but the chest pains subsided, I felt like I had avoided looking like an idiot, and I went to sleep. (Note: I had had a cold protein shake. This is relevant.)

The next morning (Monday) I called the cardiologist’s office, while drinking my (cold again) morning protein shake. They moved my appointment from later in the month forward to Wednesday, two days away. The nurse told me that if I had chest pains, I should call 911. I hung up – and a mule kick hit. Husband prepared to DRIVE me to the ER (we would have gotten there sooner, it turned out, but don’t do that unless you are VERY sure – another kick, and I lay down in the living room and TOLD him to call 911.)

Uneventful ride to local hospital (feeling like idiot already).

Absolutely horrible and boring day in ER being screamed at by an ER nurse who didn’t want me out of bed (long story – ignore – EVERYONE else was wonderful).

They take blood (3 sets of cardiac enzymes which tell them, over a long period, whether you have HAD a heart attack). Cardiologist who visits insists my symptoms go with a 90-95% blockage. Scares the heck out of me. They keep me overnight, send me from this hospital in NJ to PA one by ambulance in the morning, DO a cardiac catheterization – and RELEASE me because there is a ‘lesion’ but it doesn’t meet the guidelines for stenting (70% blockage). Surgeon does a flow test around it – blood flowing. Cardiac enzymes NEGATIVE.

Next day (Wed.), MY cardiologist goes over the results, tells me surgeon has not found anything stentable.

I PREPARE TO FIND A DIFFERENT REASON FOR THE PAIN, SINCE THE CARDIOLOGISTS HAVE ‘CLEARED ME.’ If you’ve seen my recent posts, the best candidate seemed to be an esophageal spasm. My assumption was that the months of coughing which had recently stopped had left things tetchy and easily triggered. The next morning, I dutifully call my primary doctor’s office, feeling like an idiot. They fit me in at 10. I drive myself.

I get there. BEFORE discussing my question with me (how do I figure out what this CERTIFIED NON-CARDIAC PAIN means and how to fix it), she has the nurse do an EKG, CALLS the paramedics immediately because of ‘changes’ happening right then during the EKG, and I end up in the SAME ER, and the whole process – boredom, cardiac bloodwork  – REPEATS. Cardiologist insists, keeps me overnight and does a stress test the next day – and he says he sees ‘something worrisome.’ I DON’T believe him, think he’s making a big deal out of my small reported comment of some chest pain FROM THE NUCLEAR CHEMICALS. Really, it was NOT a big deal. I want out.

Another overnight observation, and trip by ambulance to PA for a catheterization. This time, because there has been another chest pain event, and there are changes in the EKG from the stress test, the surgeon stents that lesion he’d seen before.

They stupidly tell me that IF the catheterization doesn’t stop the pain, they will be SURE it is non-cardiac, and I will be free to leave the hospital and go do what I was pursuing when I landed in the ER the SECOND time: a non-cardiac reason for the chest pain (about half of chest pain IS non-cardiac – I actually had a consult with a GI doctor who agrees an esophageal spasm is a possible explanation – triggered by cold food).

Imagine how pissed I am the NEXT morning when the mule kicks my chest and THEY WON’T LET ME LEAVE. This is Friday. They can’t force me, of course, so they overwhelm me with talk (I’m exhausted from days of this and hospitals and too many people and NO energy to start with – thank God husband was there and more coherent than me). I agree to let them look into it more. The next morning a different surgeon comes in, looks in more detail at the films ALREADY taken at the first two catheterizations and first stent (I’m a conundrum to them and they’re getting VERY concerned), DOESN’T come talk to me in person (it’s a Saturday – and he sends the cardiologist, another of the overwhelming talk-too-much knowitalls), and he somehow persuades husband and me that I need ANOTHER catheterization (third), that they are pretty sure they know what’s going on, that it NEEDS fixing. He also persuade me to wait for Monday staying flat in bed so the procedure won’t be an emergency weekend one.

It was a horrible weekend. For me. I’m pretty sure I was a hyper-controlled super-stressed trying-to-be-polite sure-I-was-right-and-they-were-wrong-again pain. Bedpans and being interrupted every 10 seconds and ‘cardiac’ tasteless diet will do that to an introvert, especially since we’re now at the two-week mark of this nonsense.

Finally, Monday the second surgeon, knowing I was refusing to go in until I had talked to him, stopped by (I haven’t eaten or had water since midnight and it’s past 11 am), came in, gave me a short and DATA-FILLED explanation, SAID personally (I think) he KNEW what the problem was. And I agree, if nothing more than to get out of there!

Why? Because the other alternative is to leave against medical advice – and I CAN’T DO THAT TO MY POOR HUSBAND. No matter HOW pissed I am, they may be right, and husband should not have to pay for my fit of pique, etc., etc.

They finally take me in for the procedure around 5PM. Cruel.

Surgeon talks to husband after procedure – he not only fixed the very complicated bifurcation lesion he had seen on the films, but found and fixed a 95% blockage lower on the same artery which was actually closer to the region the stress test had indicated was a problem, and which is an odd feature of my anatomy variation. This part is a little fuzzy, because husband thought he told me the details – he may have – but I was still under hypnotics and have odd and possibly false memories of some of it.

So I’m alive. The blockage which probably would have caused an actual heart attack at an inconvenient time has been stented. I have three stents, and the bifurcation got a balloon angioplasty in the other branch, because you can’t stent both branches, and I am on all the meds I didn’t want to even consider because of potential side effects for CFS folk.

Some aftermath, still iffy

The next morning, just for the heck of it, I blow the gasket in the groin, go through unbelievable pain (more than the mule kick – and lasts much longer!) while a burly male and female nurse ‘reduce’ it, and I spend ANOTHER lovely day in the hospital repeating the entire hole-closing procedure (a rate complication, they assure me).

We finally go home on Wed. (two days ago), after the most horribly protracted release process I could have imagined, with a bag of the new pills I have agreed to take until I see the cardiologist for the hospital followup visit I’m supposed to make within the week.

You cannot imagine – and I can’t describe – emotions and exhaustion.

That Wed. night, when I can’t get to sleep, I do a lot of thinking, internet research, and processing of implications. Rather incoherently, but I have to make at least a bit of sense of it.

Thursday morning I dutifully call in to make the cardiologist (mine) followup appointment, asking them to call me back in the afternoon and give me one, if possible, for Monday or Tuesday after the weekend (so I have a chance to rest, recover, and possibly become coherent again).

They drag me in that afternoon. Husband graciously cancels his appointment at the exact same time to take me. I really shouldn’t be driving. Damn. I thought I was going to have a break.

The followup cardiologist visit – too soon?

  • This is where we sorted some of the above stuff out. It was probably good that the bits and pieces were still clear, and necessary for husband to be there.
  • The odd sequence of THREE catheterizations, stress test results, EKGs both with and without problems, ending in the hardware I now own for life, is worked out. My cardiologist is amazed I’m coherent and functional (short periods between naps – I can work this), happy to explain ANYTHING I ask, amazed I’m willing to take their meds, agreeing I am special (that was funny) and that I need to be treated as such (here ‘special’ means ‘different from most other people because of ANATOMY and the CFS,’ but I still liked getting her to say it – whadda you want? I’m human).
  • The anatomy is special enough that it literally made it hard to figure out exactly what was going on. I am grateful that my big mouth didn’t cause them to give up on me – I assume I also worried the heck out of them. I am pretty sure, from her demeanor, she was prepared for anything when I came in.
  • Doing the research and thinking I did the night before was CRUCIAL for putting me in the right mental place to deal with her, the whole ‘story,’ anger, etc., etc., etc. I’m still amazed at that one myself. Though, remember, I’m still alive. All bets would have been off otherwise.
  • Because I’m special, the cardiac rehab will be special. And she is fully prepared to have to do a lot of work on meds if necessary. And isn’t demanding I give up my necessary CFS pain meds (which I finally got back to taking, defiantly, the last day in the hospital). There will be work on those – from a cooperative place.

So what next?

Anyone who cares is now up to date.

I’m exhausted, taking my meds, keeping VERY extensive journals of ALL details – there will be many days of this so I neither exaggerate nor minimize problems.

What do I want?

To get back to a place, mentally, where I can write fiction. Today has not been that place, and the aftereffects recorded in the journal are already at 3000 words, just for these three days so far. The crash is already ferocious; I don’t know how long it will last or how bad it will get, but am not sanguine about what this has done to me.

(Buy the first book if you haven’t and the Look Inside satisfies you in any way.)

I want to update anyone who cares – and then do the smallest amount of focusing on illness/disease/being a cardiac patient when I was no such thing less than a month ago – as possible. Consider this it. Be prepared for at least a couple of weeks of rather minimum interaction from me – not personal, as I love you all and wouldn’t have put myself through this post if I didn’t think it was important in some small way to get most of the chronology in writing and a first cut at accuracy.


I WANT ALL OF YOU TO LISTEN TO THE LESSON:

You MUST rule out cardiac causes of heart pain properly, because my cardiologist said I did EVERYTHING right (one of the reasons she agreed I’m special) and most people don’t, and many don’t make it (I didn’t tell her the one little bit of not going to the ER on Superbowl Sunday night, and going to bed – I am acutely conscious that night might have been my last – that 95% blockage bit).

Note the cardiac enzymes – done several times – never showed a heart attack – I never had it.


I’m wiped and going to try Next Nap.

Stay well. Take care of yourselves. Drop a comment. My online community is as real to me as the RL one. I will take up my responsibilities in it as soon as I possibly can.

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46 thoughts on “Do right for your heart but be prepared for an awful ride

  1. Alice Audrey

    Sometimes I get the feeling doctors are just fumbling around, making random guesses about things. I’ve known several people who were released from the ER after thinking they had a heart attack. Several of them later died. It’s a real good thing you did everything right.

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    1. Alicia Butcher Ehrhardt Post author

      It could have happened to me – they released me with a confirmation it wasn’t cardiac after the first catheterization. I was lucky – and I kept trying to handle it myself after they told me it wasn’t cardiac. For 6 days.

      I need to send my doctor an update and a thank you. She was the one who sent me in the second time. Then it took them another week, and three more procedures.

      They’re not perfect.

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  2. clairechase51

    Dear Alicia, I read your most recent post and realized I had missed something and came back to this one. Whew!!! You have really been through a big ordeal!! I’m so sorry it was so hard…..I give you credit for not giving up and continuing to seek care, even when it seem futile. I’m grateful there was finally a cardiologist who was able to see the problem and do something about it! Hospitals are great to have when you need them, but they aren’t what they used to be….there are so many people involved in your care with so many things they each have to check off their list that I am amazed they have any quality time at all with the patient. I’m so glad this is behind you and now you can look forward and continue with your love of fiction. God bless you. All your family and friends are so happy you are better. Claire

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    1. Alicia Butcher Ehrhardt Post author

      Quality time with the patient? What the heck are you talking about. No one spent any time with me unless they were doing something to me. They had me hooked up to a monitor and they had an intercom – I spent the entire time very alone.

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  3. glynhockey

    What a nightmare! I can understand both your frustration, and concerns. A few years ago I had four stents inserted to widen failing arteries, and I take enough medication now to ensure I will never be hungry again!! I guess we have to listen to our bodies, and to our consultants. I hope you recover soon, and get back to doing what you love. Glyn

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    1. Alicia Butcher Ehrhardt Post author

      I’m fighting taking all but the most essential medications, because they’re making me sick. Have to take the stuff that keeps the stents open, but there are some options for the other meds, which the doctor has promised to discuss if necessary.

      Nice to have options.

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  4. Liz

    So happy to hear you’re back home and resting. Reading about all those medical visits and procedures sure tired me out! Take good care of yourself, Alicia!

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  5. J Reeve Fox

    I am so sorry to hear about your trials, and I’m shocked because I blow things off about the same as you, but a mule kick would surely get my attention. Hopefully your body will heal quickly and you will be back to writing fiction soon. Take good care!
    Sending my love, J

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    1. Alicia Butcher Ehrhardt Post author

      Thank you, J. If I didn’t have CFS, I could have kept myself in so much better shape with regular exercise; this might not have happened. I haven’t had that option – it caught up with me.

      Without fiction I’m miserable. That was all I had left, and I can’t get my head clear enough (the new meds?) to function. I couldn’t rest in the hospital, and I can’t do my meditation now. Some of it was tension – I get that – but now that I’m home, every rest has been horrid.

      Will talk to doc.

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  6. juliabarrett

    Wow! You have been through the mill! So sorry to hear this. I was hoping the pain was nothing. I have been out of the blogosphere. Sorry about that too. Get Better!!!

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  7. Pamela Spichiger

    Alicia, I have been wondering how you have been. Now I know. Keep your chin up and just rest and rest some more. This past year I have dealt with my Pancreas Necrotyzing on me and miraculously making it out of emergency surgery alive. It has been very hard to deal with that on top of the ME/CFS. Mentally is the worse part I believe,the pain is something most of us are used to,but not the drastic ,glued to the bed time. Knowing that your life could have very easily been snuffed out is a real mind game changer. I will be thinking good thoughts for you daily as we both try to heal from these extra diseases. Bless you…Pamela

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Pamela. I’m sorry about your pancreas – and for you having to be in the hospital at all. They really don’t get anything except their medical stuff – and scare the heck out of you with half of that, and annoy the rest of you continuously.

      The studies showing rest, kindness, and relaxation help heal seem to happen in an alternate universe!

      I’m hoping there may be more energy IF the arteries clogging was part of the problem. One can hope!

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      1. Pamela Spichiger

        Alicia, I was in the hospital for 60 straight days starting on May16,2016. Came home still hooked up to feeding tubes and had in home health care. Since then have had a couple more surgeries on Pancreas. Total of about 80 days in hospital in 2016. The nurses and Doctors can get really frustrating at times. The main thing I learned after all that time is that they really do care and are trying their very best to help every patient. Many times they were just as frustrated and annoyed at the way some of the tests were being delayed or repeated.

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  8. stillsoulbird

    I am so so glad you made the right decisions & have made it through all of this. This would be difficult for someone without ME. Rest well. Sending healing thoughts, wishes, & prayers. With love, ellen

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  9. Pat Allen

    Oh Alicia – you have really been through the mill and some of what you have been through has been mirrored with my husbands problem – that reading the above was giving me strong feelings of deja vu. Ken has been in hospital with Cardiac, and GI problems that caused anaemia that caused an MI, for the last month and only came home yesterday. However, he only became aware that he had an MI from his Cardiac enzyme levels of Troponin. He had some odd feelings in his chest – but only like very mild indigestion – certainly no mule kicks!! For the GI problem, he was starved from dinnertime one day until 5pm the next day and then they didn’t do his colonoscopy and he had to go through the whole starvation and Picolax (very strong laxative) process all over again just over 24 hours later. He was much better off in the groin region than you with his angiogram though – his definitely didn’t blow a gasket!!! His leftover mark was barely visible. He too, had complications, inasmuch as the blood thinners he needed for his cardiac condition were the last thing he needed for whatever part of his gut that was bleeding and causing his anaemia! He was also a conundrum for the consultants to muse over. This has all been played out in our group – for which, like you, I was very grateful for our online community. You, understandably, have been otherwise engaged – so have missed all my whingeing about hospital parking fines etc – so consider yourself lucky – at least in being spared that. I wish you a speedy recovery and look forward to when you feel up to posting again – take care my friend xx Flo

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  10. marianallen

    You’re the second non-sportsy woman I know who had a heart attack on Superbowl Sunday! Just an odd coincidence. ANYWAY, I’m really glad you’re still alive. Take care. Lots of naps. Maybe you’ll be better able to write, once you rest up, now that the blockage is relieved. We can hope!

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Marian. One CAN hope. Not so far – just had huge BP spike – took special med for such – from the rehab guy calling. He doesn’t get ANY of it.

      Doc promised special treatment. I don’t think she meant BP spikes!

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        1. Alicia Butcher Ehrhardt Post author

          I’m not sure even how to approach it, since she seemed to understand – and then sent me to ‘the best.’

          I’m already dreading the intake appointment – will take husband. Maybe I’ll try to calm down and see if there is anything I can do of what he tries to shove down my throat, but it was NOT a good start.

          I do want the rehab if I can stand it – but not at such a cost.

          I will call the cardiologist’s office and ask if there something I can take prophylactically. Just to get through the intake and maybe a trial or two.

          SHE said and acted as if she got it; we CFS people are not in need of encouragement to try harder. We are in need of assistance to do what we can SAFELY.

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  11. jensaunt

    OMG, my friend, you have been through HELL! Glad they figured it out and you are on the mend. I have to read this again because I don’t really understand what all happened.

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  12. Catana

    I’m amazed you survived the stress, much less all the rest of it. I don’t think I would have. Let the comments pile up and do one inclusive one when you can. I’m sure no one expects personal responses at this point. Rest! Chronic pain is a terrible stressor so I hope you’ll find a balance with the meds.

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  13. Holly Jahangiri

    I am SO glad you’re still with us! That’s quite the exhausting escapade, and you’ve managed it well. I had a taste of it, years ago (my problem WAS “esophageal spasms,” and I told them that when I went into the ER, but of course the symptoms are so similar they ran all the cardiac tests they could think of over the next 2 days before finally agreeing – and giving me nitro pills, anyway, because hey, who knew, the same thing that works for angina works on the esophagus). And they were right to test for heart issues, I was just so tired and cranky and sure of my own symptoms I was a bit testy with them the whole time. But I’m glad you and they persisted to find answers and proper treatment for you. And I’m glad you’re a good, compliant patient. I’m sure your family is relieved; they want to keep you around a good while longer, too.

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        1. Alicia Butcher Ehrhardt Post author

          But you didn’t have EKG changes. I think that’s the key. They kept insisting my EKG changes were happening (even though they almost missed the first bunch – only my primary doctor and the ambulance crew to the second ER visit saw those), but that made the cardiologist insist on a stress test.

          That they then misinterpreted WHERE the stress test was telling them the problem was… until the third catheterization…

          And you can’t do the EKG properly yourself unless you really know what you’re doing?

          Liked by 1 person

        2. Holly Jahangiri

          Oh, I’m not saying they weren’t right to be cautious and run the tests (although I did miss a grade school awards program at my son’s school, and was very upset about THAT – and it was an extremely EXPENSIVE couple of days in the hospital). I do wish they’d been more gracious about finally admitting I was right in the first place. I mean, it FELT more like hiccups behind my sternum than PAIN. Like rhythmic cramps in the esophagus. It wasn’t “crushing” or “burning” or anything like “heartburn” or an “elephant on my chest.” I was just getting worn out – mentally and physically – and exceedingly uncomfortable (having put up with it for about 24 hours already – I mean, seriously, with that CONSTANTLY GOING ON, I’d have been dead if it was a “heart attack,” I’m sure). But whatever.

          Another fun one that really does feel like a heart attack is bronchial spasms. Holy crap those hurt! Fortunately for me, my doc at the time correctly diagnosed them over the phone and saved us all a major hassle. (Brave of him, too, since I was pregnant at the time!) I later correctly diagnosed them over the phone in my grandmother (of course she went to the hospital and had all the tests confirming – I didn’t even tell her what I thought it was before she came home!)

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        3. Alicia Butcher Ehrhardt Post author

          Another difference (which might be significant for anyone reading this discussion) – mine felt like a mule kick in the chest after it got significant. Never hiccups. And in retrospect, I might have been going down the path of occlusion slowly before, as it got more difficult to do steps.

          Honestly, though, with the extreme lack of energy due to CFS, that slow start was easy to miss. And I was still managing to get down to the crypt for practice and up to the Princeton chapel to sing. I never got a mule kick there.

          I don’t know what this whole thing will cost – it took them THREE catheterizations to find the real problem and fix it – I may reconsider a bunch of things if it is going to cost us a huge amount, them being rather slow to find the problem.

          Liked by 1 person

        4. Holly Jahangiri

          Without insurance, my two day stay would’ve been about $35K, if I recall, and they did nothing surgical at all. Fortunately, I had insurance. But that was also more than 10 years ago.

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        5. Alicia Butcher Ehrhardt Post author

          We are waiting in dread for the bills which may roll in – even though it should be easier, given that the procedure eventually found and fixed the source of the chest pain!

          Insurance companies are notorious – but we have Princeton U backing on the secondary insurance, and that may provide us some sanity and an ombudsperson, etc.

          Liked by 1 person

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