Fragility and vulnerability after the stent

Woman looking up at tall grey wall; Text: I sed to be me. Alicia Butcher Ehrhardt

WHEN ISN’T IT WORTH IT BECAUSE YOU’RE NOT YOU?

The more things that happen to you, one after another, which you have no control over, the more stressed out you’re going to be.

Some people, with an invincible attitude, do well under stress – they aren’t going to let it bother them.

Others learn with yoga and breathing techniques, to manage the unmanageable somewhat, and have something they can do when they feel stressed – which makes the stress bearable.

I’m running scared.

I’m not going to claim PTSD – the disorder part in particular – but I can see a bit of how people get to that point.

And when the solutions don’t work, when the medications given to alleviate the ‘problems’ don’t work, and instead have side effects as bad as, or worse than, the problems themselves, one starts to feel fragile and vulnerable – and scared.

I can no longer count on myself

I drove myself to church Sunday, finally getting back to my little choir at the Princeton U. chapel I love singing with, and things were going about as normal as you could expect. I left home having both eaten something and had a nap, and was even on the road a bit early, a good start. The substitute choir leader was kind and gentle and treated us as professionals. I brought a few people quickly up to date as to why I hadn’t been there since Feb. 4, and the singing went well.

Even climbing the steps from the crypt – which had become a problem I didn’t realize is called ‘shortness of breath,’ and which I mistakenly assigned to CFS or to simply getting older – was more doable than it had been – I took it slow from caution, not necessity.

Afterward, I chatted a few minutes, hit the bathroom (halfway down to the crypt), and set out for home after peeling an Atkins bar so I wouldn’t be empty, and starting to munch it in the car.

Getting home was the problem

Mind you, I’ve been driving myself just fine for at LEAST four years, maybe longer. I drove myself home the night of Feb. 4, when I ended up in the hospital the first time for chest pain the next morning. This is something I do: I am – I was – an independent adult.

I was about halfway home, when I had an episode of feeling extremely sleepy, and then having the sensation of being scared, and a rapid heart rate, not a good situation when you’re driving.

I got into the right-hand lane, which helped some, and pulled off into a mall parking lot soon after that. I wanted to call home – but my cell had no service. I walked around a bit, photographed (maybe – don’t really know how to use the camera on the phone) some WILD TURKEYS – or escapees from the turkey farm.

Back on the road (it’s a total drive of 20-25 minutes, no biggie), the feelings persisted, and I pulled into a strip mall further down the road – to find that every store was closed (Sunday after 6PM), and there were no other people, and the cell STILL had no service. I couldn’t call home to tell my husband I would take a nap in the car and would be a while.

After a bit, a pickup truck pulled in. I asked the other driver if I could use his phone – and he said it was not charge. He asked if there was anything I needed. I told him I’d be fine – and headed for home again.

It was a very uncomfortable drive the rest of the way, because there are no places such as stores to stop at, and I didn’t think I was so far gone as to need emergency services, but I can tell you I took it really slow, stayed in the right lane, made the easiest choices for streets, and was prepared to pull over at any moment.

I considered stopping at a house, preferably one with a lot of cars, and I’m sure one of my neighbors would have listened – but I was closer and closer to home, and just didn’t want the fuss that would have to ensue.

I made it, obviously, but I really needed that outing to be one which took me back to the tiny bit of normal I have, and it ALMOST did, but didn’t.

Side effects, stress, post-trauma reactions, anxiety?

I don’t know whether to blame some of these things – which came out of the blue without warning – on the same drugs I’m taking which have confusion, dizziness, lightheadedness, palpitations, and other such listed as side effects.

That night, and every night since, I take those drugs again – and it’s become a Scylla and Charybdis: there is no certainty close to either side.

I don’t dare stop the calcium channel blocker (amlodipine) which I was told to take after the previous Sunday resulted in an ER visit in the middle of the night because of really high blood pressures, but I don’t know if that drug is CAUSING the problems with its side effects. This week has been getting off one drug (Effient) that sent me to the hospital that last Sunday, and getting on two others (clopidogrel – Plavix-clone plus the amlodipine which barely brought the high BP down from the Effient).

Side effects are common when getting on new drugs.

Side effects take a while to fade when you stop taking a drug.

Meanwhile, my system feels like a funhouse.

The whole week has been fraught – high blood pressure spikes (not high enough for the ER, but much higher than I’m used to) – with a host of minor symptoms – enough of a daily variation that it seriously worried me, but knowing that they would tell me to just keep taking the drugs).

I want somebody to KNOW, to fix things, to tell me it’s okay. I want to be able to get through a weekend without monitoring every time I feel shaky or the heart is racing. I’ll see the doctor – April 20th. That seems awfully far away.

It’s not any individual thing; it’s the accumulation, the unpredictability, and the fact that I have demonstrated paradoxical responses to everything they’ve given me so far.

I want to be stable. I don’t want to take ANY drugs that are not strictly necessary – I worry that they will accumulate like the Effient and cause problems simply because I’m not clearing them out properly.

And I worry about the stents, stent blockage, and the bleeding risks of taking drugs which keep you from clotting.

I do not believe in taking one drug to counteract the side effects of another. The principle is wrong. And I don’t react well to it anyway – plus it leaves me in a position of not knowing which to stop.

I guess I can say I’ve had every side effect in the book; well, about 50% of them – so far.

I am not happy.

And I’m scared.

And I keep remembering that I did NOT have a blood pressure problem even when one of my arteries was getting quite blocked! So I don’t understand why I have one now – it must be their drugs.

It’s getting worse by the day.

In a week, nothing has changed – except that I can’t write. No brain kicking on, not for even an hour to write with.

And I’m not myself.

And I can’t function this way.

I didn’t have much, but now it’s gone.

I have a sing tonight.

I will have to drive myself home around 11PM. My husband (who isn’t even awake at that time) has offered to drop me off and pick me up – the very last thing I want.

I’m already a significant burden, since there are so few things I can do for us.

I don’t know if I’m going.

If I have another reaction like last Sunday, this time at night…


 

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29 thoughts on “Fragility and vulnerability after the stent

  1. naleta

    I am sorry that you have to deal with those side effects on top of recovery. My mother was extremely sensitive to side effects of medications and usually only took half doses, and she was otherwise normal, not dealing with CFS as you are.

    All I can do is send my sympathy. Know that I’m thinking of you.
    {{{HUG}}}

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    1. Alicia Butcher Ehrhardt Post author

      Thank you – hugs appreciated.

      I tried to tell them about the sensitivity, and maybe those WERE smaller doses, but it has still been too much.

      I’m off all but the plavix-clone now; hope I can maintain my BP as before, and I’m puzzled why better blood flow doesn’t result in this automatically. We’ll see.

      I feel Ihave a probation officer I have to go see, and to do what they tell me. I’m not sure I’m happy in that role. I need to do some mental readjustments before I see the cardiologist again.

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  2. Janna G. Noelle

    I’m sorry that you’re going through such a tough time. I don’t want to offer you empty platitudes, but your body has been through a major ordeal – an entire system has been compromised. It might be a considerable amount of time before you start feeling closer to normal (or otherwise a new normal), be that with or without the new drugs. You know what’s best for you, but just remember to be gentle on yourself and forgive your body for however long it takes to bounce back.

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    1. Alicia Butcher Ehrhardt Post author

      Did he have the heart attack, or did they get stents in before it turned into one?

      I’m thinking the second (which I had) should have a shorter recovery. Most of my problems after getting out of the hospital have been the drug side effects, not, I believe, the aftermath of the procedures (except for it taking them over two weeks).

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        1. Alicia Butcher Ehrhardt Post author

          Thanks, Mary – maybe I’m expecting too much, too soon. I just didn’t expect to have to fight for recovery so hard!

          My husband had a quadruple bypass 18 years ago, and has three additional stents. He’s never had a side effect, or complained about anything – so I didn’t expect this.

          But he was relatively healthy and much younger – and just went ahead and did the rehab with no trouble. I have had CFS for almost 30 years. It was bound to be different.

          I’m afraid of getting stuck on something which makes me sub-optimal. I’m afraid of trying other drugs (so far, no good experiences with them). And now I’m afraid of being unsafe on the road without lots of precautions. And these are real fears, not things I’m imagining.

          I’ll give it more time, keep documenting, and keep complaining when I have something that needs it. Nicely, of course.

          Liked by 1 person

        2. Mary Brearley

          I think that’s the best way: track the changes. I suppose physiologically we are all different so effects are bound to be varied: it doesn’t make it any easier though!! Take very good care, I’m sure all will be well in the end!

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        3. Alicia Butcher Ehrhardt Post author

          I’m hoping for the same!

          But I have to be able to write. Which means I have to have at least the same amount of good time as I was managing with before, and preferably more (as I can improve fitness and oxygen delivery to the brain).

          Not less. When you’re as low in functionality as I am, you’ll try almost anything to improve that – if it has a decent track record for people like you.

          My online support group has women with similar problems, and they’ve been invaluable as sources of information, even though we’re each different!

          Liked by 2 people

  3. J.M. Ney-Grimm

    Really, really sorry to hear that have had such a tough week. It sounds like you need to come off those meds, and that the research you’ve done indicates that it may be possible to do so safely. I’m not giving advice when I say that, nor do I even have an opinion. I can’t because I don’t even begin to have the knowledge that you’ve been gathering through all this. I’m just telling you what I’m hearing you say, as you process and blog about all this. I continue to pray for you.

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    1. Alicia Butcher Ehrhardt Post author

      You’re hearing exactly what I want to say – it’s going to freak them out, but that’s what I want.

      We’ll see how today goes: Palm Sunday, and we have special music to sing, and I will be there. And then I’ll take a nap in the car before leaving, and drink at least half a Diet Coke!

      I’ve started my at-home rehab – maybe that will help. I can do it just fine in my basement with my Total Bodyworks gym and other machines. I did it twice yesterday! Piece of cake. And it took me two 15-min. segments.

      I just started wondering this morning if these meds are making it impossible to lose the weight I should be losing – I’m eating far less. At first, because it would set off the impressive abdominal cramps; then because I’d like to be lighter – which isn’t working.

      Fun problem solving – not!

      Safety, yes, but they cannot guarantee absolute safety ON or OFF the drugs – so I’m taking the risk either way.

      My BIGGEST worry is being so much of an uncooperative patient that they ask me to find another cardiologist group (there aren’t that many). I’ve been ‘fired’ by one or two doctors in a long life, and it leaves you hanging. I think husband is afraid of the same thing!

      Plus, how do you tell the new ones are any better? Which is why the careful documentation. You can’t argue with data. They didn’t argue when effient sent me to the ER, and I said I wouldn’t take it any more. Data – confirmed by ER staff – and while on only ONE drug.

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  4. Jennifer

    This must be so scary for you. And scary increases stress levels, which tends to increase heart rate and blood pressure. The world of chronic illness can be such a minefield: very few (if any) text book answers, so many unknowns and such a huge impact on your life.
    Do any other members of your choir live close by, and could perhaps give you a lift to and from? (((hugs)))

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  5. joey

    First off, let me say I am SO SORRY you had this experience.
    I don’t know what caused your episode, but that is frequently the sorta thing I experience when my anxiety is high. There was a time in my life that it was so high, I couldn’t drive without having a panic attack :/ I hardly drove. Any length of distance, I would ask a neighbor or friend to drive. My driving anxiety is PTSD, and I am better, but not like how I was before.
    Your story really does remind me of panic. 😦
    I went the way of therapy, benzos (never full doses) and well, every lifestyle change that everyone ever suggested — everything.
    There are so many possible causes for your terrible feelings on the road that day, but most important is to not be afraid of it. Don’t let the fear take your independence. You have to fight so hard for what you have already. ❤

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    1. Alicia Butcher Ehrhardt Post author

      Thanks, Joey. I am fighting. It’s just that I start so low, and there so little to fight with.

      Iknow what causes all of these thing – I can’t tolerate the drugs. They are powerful, and my system is weak – has been weak for so many years.

      I’m fighting: I’ve been doing my exercises at home – with big rests in between. As much exercise as I got at the hospital, but in a much tinier time frame without all the gobbledegook. No heart monitor, but I have my chest strap heart rate monitor on, and I know to keep the heart rate under my aerobic limit (CFS people can’t produce energy aerobically; trying to causes crashes).

      I got as much exercise, TWICE, as at the hospital last Wed. – took me 15 min. or less each time. MUCH more efficient use of my energy.

      Pray that it will slowly increase my fitness level anaerobically, and since that was all they were going to do at the hospital gym, I’m definitely right to take matters into my own hands. Instead of twice a week, I can do 2-3 times a day, which is more, even if I don’t do every day. I am determined to do this.

      I’m also determined to get off the stupid meds – asap. Cross fingers on that one. I can’t regulate with breathing right now – and I need to be able to do that.

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  6. Widdershins

    Let hubs help. You enjoy the singing. Go do something you enjoy. You not doing something you enjoy may be a greater heart-hurt for him than him driving you there and home.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks – probably good advice, but it came from a tired man.

      I decided against it – last night was bad. Today was a bit better, and I hope to drive myself to church tomorrow – and try again. I will take Diet Coke WITH caffeine – and drink it before I head home (after a nap in the car if that seems necessary).

      I am not giving in to these things – if I can manage them, I will; if not, I will get off them asap.

      I can’t lose my independence – I’m 67, not 97.

      And will let him drive me when it makes sense (which I already do – I tire easily).

      But I’m going to beat this, not give in to it.

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  7. marianallen

    I’m so sorry you’re going through this! I wish I had some advice to offer, but I just don’t. My impulse is always to try to fix a problem, but sometimes I have to realize the difficulties and circumstances are just too far outside my experience for me to be helpful. My only thought here is: Maybe you need to rest more profoundly for longer than you think you should. Maybe — just maybe — you NEED to set aside some length to days to NOT try to do what you normally do, what you would love to do, but just to let your body use its energy to adjust to the meds. Maybe you’ve already done that, and I’m being irritating by suggesting something you’ve already done. If so, all I have to offer is my sympathy and good intentions.

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    1. Alicia Butcher Ehrhardt Post author

      Thanks. It’s a good suggestion, and one I give other people a lot.

      But if I rest any more I will go mad.

      And there’s always the chance today will be the day I succeed.

      What I have to do is give it, the trying, until a certain time every day – say 2 or 3PM – and then go ahead and do something that is necessary, like a little bit of exercise, or weeding a few square feet. It won’t give me the satisfaction I crave, but it would be something.

      Meanwhile, the days accumulate on which I was ready, willing – and not able – to write.

      I don’t know what the solution is, but I would like to TRY functioning with no meds. Whether ‘they’ like it or not. I hate to think that this is my best current state.

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  8. Catana

    Scary stuff. I’m beginning to have some idea of what you’re going through. Bouncing between doctors, blood tests, med adjustments, etc. I have a feeling they’re trying to achieve a state of normality that may be impossible for my body to achieve this late in life.

    Hang in there. Your careful record-keeping may make the necessary sense for your medicos one of these days.

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    1. Alicia Butcher Ehrhardt Post author

      I hope you’re feeling less exhausted.

      Having no energy, and then getting demands on that non-existent resource, is hard to deal with.

      When I suspect there’s an unmedicated state I could be in that might be almost as good as the medicated one, but without the side effects, I want to get there.

      I don’t think the medicated state is as safe as they want you to believe it is, either. The twinges, nosebleeds, etc., make you wonder if you’re supposed to do something – and bring up the dual fears: going to the ER when you don’t need to, and having something be going wrong. How are you supposed to distinguish normal twinges from chest pains, etc.?

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      1. Catana

        Have more energy, but it gets expended faster than normal. Losing weight (good because I need to get rid of 15 to 20 lbs), too fast (bad because I have no appetite), frustrated because results of meds changes are either too extreme or near zero. I suspect I’ll never be a zero meds person again, but maybe fewer as we figure things out. Fibro has so many of its own oddities that crop up without warning that, just as you said, how do you know what to pay attention to?

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        1. Alicia Butcher Ehrhardt Post author

          I’m fortunate not to have fibromyalgia on top of my other woes, but I have the same question: how do you know whether you’re becoming a hypochondriac – or noticing things which will save your life? ESPECIALLY when the meds are making you woozy and stupid and sleepy. How can you make good decisions when your mind is being attacked?

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        2. Catana

          “How can you make good decisions when your mind is being attacked?” It was useful to find out today that one of the meds is known for making you tired, so now I can factor that in when I can’t get myself together to think clearly. Stubborn me just keeps saying “That’s not me. That’s not me.” Doesn’t always improve matters, but at least I can tell myself I’m not suddenly getting senile.

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        3. Alicia Butcher Ehrhardt Post author

          You’re not suddenly getting senile. Trust me. And I refuse to do that, either.

          What I have lost is the ability to think – and that’s a well-documented drug side effect. And the reason many people just stop taking them, without even informing the doctors: they can’t stand not to be themselves.

          I’ve been on the last two (plus baby aspirin) meds for almost two weeks now, and whatever is going on is getting WORSE, not better.

          I’m not getting used to the stuff, I have the sneaking suspicion it’s doing the same thing as the last bunch, accumulating because the dose is too big (for me) and my system isn’t processing it out fast enough.

          I cancelled going out tonight, something I’ve been looking forward to for two months, because I don’t want to drive at night this unstable. There are other people out there, and I don’t want to run into any of them.

          If I can’t be independent, and go out alone at night – as I could two months ago – I’m screwed. Husband has his own problems (and still offered), and I have no desire to turn into a complete shut-in. I’m bad enough already. I told him that even though I’m not going out tonight, to not let it become a habit.

          One way or another, I’ll get out of this hole: get used to the stuff, or get rid of the stuff.

          It’s been over the month the anti-platelet people know perfectly well is enough; I’ve gone a couple more weeks after that.

          The risks are small – and widely exaggerated: they can’t stop all further cardiac events, so they make small relative differences appear as large absolute differences.

          I’ll know soon, but I warned them, over and over, I don’t tolerate most drugs – it’s not my fault I’m right about that, it just is.

          Liked by 2 people

  9. juliabarrett

    I suspect some medication made you sleepy, then your body overreacted and you experienced a panic attack. Pretty classic symptoms. You are in a support group, right? A cardiac support group? If not, you might want to consider joining one. After a cardiac episode it is normal to be afraid. Might last for a long time. And then it does get better. It’s common and it’s normal.

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    1. Alicia Butcher Ehrhardt Post author

      I do appreciate your good wishes, but you’re suggesting things for normal people.

      Support group? That’s the last thing my exposed nerve endings need, more people who don’t know what they’re talking about, but are going to do it anyway. To whom you have to be polite.

      I have no politeness left! It took everything I had to be polite when calling the rehab person this morning to cancel that ridiculous waste of time.

      I’m setting up to take my heart rate monitor and BP cuff to my basement, and do the same thing they did – except in a much more efficient way.

      I keep finding that people have no idea what it means that I ALREADY have CFS – and NO energy. No, I will not feel better soon. No, I will not be doing a lot more exercises soon – that would put me in a crash that would last days, months. Walking into the place was bad enough. I had to stop 6 times on the way to my car, and several times on the way home.

      I don’t talk about that much – what’s the point? – but it is very, very real. As is not being able to get my brain to click on for even 20 minutes to do REAL work.

      I have to just say ‘no’ more – educating medical people who should already know these things is too exhausting.

      I’m not normal.

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