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

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.

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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.

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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.