The Power of Positive Thinking and the Severe Limitations Thereof. . .

[elf]

Well, I suppose I called it upon myself. Never again shall I utter (or type) the words "His heart has been treating him well" consecutively and in that order. I swear I curse him just as soon as I do.

I'm not looking for advice; I'm confidant I know what we've got to do (after all, I've been through this before, and it took manymany attempts to find the right approach, so I've had my fair amount of practice..). I'm not really looking for sympathy (well, maybe a little)... I guess I just need to ramble on a bit and jump up and down and cry at how it's just not fair. I know I've put little snippets of this up here and there, some of it recently... so please bear with my redundancy.

Some bunch of years ago, my husband started to notice that his heart would *kick* him every now and then. He was in his early twenties when he first noticed it, and then he was about... oh, 24 when we found the pattern: if he was tired and stressed, he could count on his heart kicking him a few times over the next day or so. I told him, “I wouldn’t have married you if I knew you were defective!”

Soon after that (1994), he started having regular "bad heart days". Once we realized that it was more often than once every two months, we figured he better get it checked out. This started the seemingly endless line of doctors who would tell him, "You're fine. Stop doing cocaine." (Yes, I'm exaggerating - none of them *actually* accused him of doing drugs, they would just ask him three or four times during a single visit) No, he didn't do any drugs. Not even pot. They couldn't find a problem. By the time we got to the doctor's office, his heart rate would be perfectly normal.

<b>Diagnosis</b> (1998)
So one day, he calls out sick having another bad heart day, and I leave for work. Around ten in the morning, he calls me up, literally in tears because he broke his tooth. Befuddled, I ask him, "you broke your tooth?" He replied, "Yeah. I blacked out in the kitchen, I fell and I broke my fucking tooth out of my head". Ohhh, he didn't slip. Nonono, he Blacked Out.

Off to the hospital we go. I drop him off at the ER entrance, and go park the car. When I walk in, I see him sitting there holding a paper towel to his face.

"What the hell are you sitting *there* for?" He should have been brought right in. His heart was racing and arrhythmic. He was as white as a sheet.

He says, "I told the nurse I fell. She took my name, and told me to sit down." Exasperated, I head over to the nurse. "Uhm.. Excuse me?" I gesture back at him, "He's having some heart problems. That's why he fell." Oooh, the nurse looks back at him and nods. Next thing we know, there's a wheelchair and he's being pushed over to the admitting area. The nurse over there asks him, "So what brings you to the hospital today?"

He rolls his eyes, “I was born here, I figured I would come here to die."

At which point I smacked him, and I'm sure the nurse would have as well if it weren't against policy. She hooked him up to the blood pressure thing as I started explaining the situation, and takes his pulse. She then picks up the phone and gets a gurney on it's way and an IV in him ASAP.

After that, it's all a blur. His heart rate reached higher than 300 bpm, at which point, it's not pumping blood anymore, it's frothing it. Doctors and nurses in the emergency room are supposed to be chatty people. I like it when they're chatty. I really really don't like it when they are all focused. That means that I could be a widow within a few moments' time. Nono, I like it much better when they're chatty. I can remember holding onto his toe because that was the only part of him I could reach as the doctors and nurses all buzzed around him.

So after a little while, they got his heart rate back down to 'reasonable' and they stuck him on medications. 'Well, at least now they know there is an actual problem,' I told him. And that was true. Finally, we had a diagnosis. Atrial Fibrillation. Usually happens in older people, and apparently according to the doctors he had seen already, it never occurs in younger people. Or something.

The condition is relatively simple. There’s extra electrical connections going on in the heart, where the regular impulses that cause your heart to pump are kind of lead astray by that extra connection (which really is just healthy bits of tissue in there that conduct the electricity in unexpected directions), and then your heart starts going into overdrive just trying to keep up with itself. At this point, his rhythm was never normal. He called his heart "The rabid gerbil in the ivory cage".

So he started seeing a new doctor. A specialist. Actually, it was a team of doctors, and he would never get to see the same one from one visit to the next, which was a frustration in itself - especially since he wouldn’t just TELL them that he wanted to only see one doctor. (That’s a whole nother issue, though – getting him to simply ask for what he wants - he never does it)

<b>The Procedure</b> (2000)
So we went on the roller-coaster ride of finding possible cures, some as simple as taking a pill every day for the rest of his life. We were afraid of the possibility of a pacemaker and the endless need for medications, when finally they came up with <I>the procedure</I><small>TM</small>.

The procedure was called Catheter Ablation. They go in through the major veins at the groin (fun!) with a tube that’s got a teensy camera with a laser beam attached to it. They feed it all the way up and into the heart, find the bits of tissue and zap them with the laser. Scar tissue doesn’t conduct electricity, and therefore those extra connections are no longer made.

Yay, a cure! Easy. Cakewalk.

Of course not. The doctor that the hubby liked, the one he had confidence in, the one he truly trusted, was out of town (we find this out on the morning of the procedure), and it was another one of the doctors scheduled. Ok. Whatever. Just get it done.

So he lays on the table, they stick tubes in him. With just a local anesthetic, he’s fully conscious and aware for this. He’s fully conscious and aware as the <I>doctor</I> asks the <I>nurse</I> some critical question in midst of poking around inside of his heart. Hubby started having what was later diagnosed as an anxiety attack, and told the doctor that he was experiencing pain. She couldn’t figure out how to overcome it, and actually wasn’t sure it was an anxiety attack, and so aborted the procedure.

More doctors, more tests, theories, medications & an attempt at electro-conversion (clear!) which only put him in a normal rhythm for a few days… onward with the rollercoaster effects of emotions going from elation and then falling back down to rock bottom despair. Over. And. Over. Again.

We gave up for awhile. He went on the medication that brought his heart rate down to ... oh, 40 or some ridiculously low rate. He lived in a fog, but at least his heart rate wouldn't go over eighty. At least it wasn't going to kill him.

(2002)Finally, he couldn’t take it anymore. We found <I>another </I>doctor. Dr. Goran at New York Presbyterian Hospital in Manhattan. He actually knew what he was talking about. He outright said, "Wow, you’re awfully young for this sort of thing." And then he shrugged it off, commenting, "I bet you don’t want to be on medications forever, hmm? We’re going to try this <I>procedure</I>…" and we very nearly panicked. But he did things differently. HE would be the one to do the procedure. No one but him. And he’s done it hundreds of times. He spoke in Plain English to us, and treated us like actual human beings and only asked about cocaine the two times. We were impressed.

Another battery of tests, and there we were. I think it was in the spring of 2003. They made him loopy so that he didn’t care about anything… He remembers asking (during the procedure), ‘How’s it going, Doc?” and the doctor would nod at the anesthesiologist, and he would gray out again - only to wake up awhile later and ask, “Hey, doc. What’s THAT?” as he peered up at the monitor screen… and the doctor would nod at the anesthesiologist...

So, to make an already too-long story come to brief end: it was a success.

…

<b>Until now.</b> Here we go again. We're back at square one: He's got that occasional kick and it's showing itself when he's both tired and stressed. I suppose it's the healthy tissue growing around the scars and beginning to make those connections again. Why this happens when he's tired and stressed, I don't know, but this is the way it started in the beginning.

I keep hoping that once we move and settle in our OWN place again, and money should be a little of a stress-inducer in the very near future. . . ... Maybe once the stress levels are more manageable, it’ll just fade.

But... there's only so far that positive thinking can take you.

<small> I don't WANT to do this again. I don't I don't I DON'T! Goddamn it, it's supposed to be <b>FIXED</b>. </small>


*<b>Reality check:</b>*
You know... I typed all this out and got all choked up, and I'm stressed and wretched and I'm teary-eyed and pathetic... but .... wait. This procedure, it's still a success in my book. It worked for over a year. Maybe he needs just a touchup? Maybe I'm actually right, and it's just the healthy tissue making a little too much of an effort at healing inside there, and it needs to be discouraged. Maybe we won't have to go on another quest for another way to solve this. Maybe when we call the doctor (after we move, because A: honestly, it's not all that BAD right now, and B: maybe it WILL calm down afterward, and we'll have more time to deal with it, rather than panic now when we're already stressed beyond necessarily reasonable levels...) - when we call the doctor he'll say, "Oh, this does happen sometimes, just come back and we'll fix it up..."

Think positive for me?

...please?
Thanks.

[Beestie]

Positive thoughts on the way. I hope (and am sure) that everything is going to turn out just fine. Enjoy today for what it is and don't worry about a tomorrow that may never come.

[Clodfobble]

At the very least, you now know exactly which doctor to go to. Dr. Goran not only knows his shit, he's actually the one who worked on your husband's heart the first (successful) time.

How soon are you moving?

[elf]

Thanks, Beestie. . . and Clodfobble, you're right.

The hubby and I talked a lot about it this weekend... he is sure that the doc is going to tell him to find someone local to take care of him. But I am absolutely adamant. There's no way we're putting ourselves through all that stress again of finding a competant doctor-- I don't doubt that there ARE some around here, but I'm not going to put him through the stress of wondering whether we've found the right one. I'll put him through the stress of finding the money to get him back to NY instead. Money-stress is something we're used to, at least.

We're moving this coming weekend. . . painting tomorrow, packing up the rest of our stuff during the week, and off we go on Saturday. By the end of the month, we should be settled enough to ease his stress a good bit. And we'll be online at home shortly after that. THAT ought to help is stress levels ease up.

I'm a bit less spastic now that we'd actually discussed stuff and I'd let him know that we're not starting at square one. He's a little bent about the whole <b>insisting</b>-on-going-back thing, as he usually will bow to the doctor's recommendations no matter what they say. But I'll be damned if we're gonna play that game again.

[LabRat]

Could you ask your current doc to recommend one in the new place? He may not know anyone, but i would think that a specialist would see other specialists at meetings and such. just a thought, never had experience with this type of thing (yet). My thoughts are with you, try to not get too frustrated, it's easy to do.

[mrnoodle]

many many positive thoughts and prayers

The bright side, if there is one, is that you are properly vigilant about the heart kicking thing and aren't apt to let it get to the point of blacking out again. The fix might be far easier this time around, more of a maintenance thing.

[elf]

Originally Posted by mrnoodle

...more of a maintenance thing.

Honestly, I'm hoping that this is just exactly what it will be like (sounds kind of funny though, doesn't it? I dunno, but I'm just a little amused. :p ) Just a little touchup and off we go. Logically thinking, since what the procedure did was add little bits of scar tissue here and there, perhaps some few parts of it ended up healing a little too well, allowing the electrical connections to start passing through again. Find those few spots, zap them again, and off we go. Done deal.

And thanks for the good thoughts, Labrat. . . The problem with recommendations is that you never REALLY know how good the doc is until you get there, and sometimes you don't even know until you're just about to head in to the procedure. I'm going to stick with Dr. Goran even if it puts me into fifty years of debt.

[lookout123]

something similar runs in my family. electrical problems, you say? mom's first heart attack dropped her at the ripe age of 29. she had 5 more over the next three years. they went the meds route, but she was doped beyond belief and then finally the new doc said that wasn't the way to go. a new procedure was around for this - install a defibrillator directly into the body - permanently. that way when the body starts to create a new and unique rhythm, the little gizmo will send out the shock and get things going right again. she has had that for about 20 years now. she was the first in illinois to have it, i believe. my grandfather was the 3rd, my uncle was the 15th or something like that. it has worked well for them all. my grandfather finally went due to cancer which had nothing to do with his heart. i have an aunt that refuses to do the surgery and has been on maintenance drugs for eons.

it is thought that i may have similar issues, but i have chosen the patented "fingers in the ears, lalalalala method" of dealing with it. fair diet, frequent exercise, and a lot of life insurance for the family, for me, yessiree.

[elf]

D00d.

If it is the same problem, this procedure (cathater ablation) truly rocks. One of the reasons that this whole thing wasn't smooth-sailing for my hubby is the fact that he's got gobs of those extra connections. (which also might be why he's having the issues now, maybe they missed a couple)

Anyway, if you've got the same thing, this can actually FIX the problem. No dohickies implanted, no life-long medications.... Permanently.

Your family wants <b>you </b>more'n money.

I heard a little bit about the defibrillators, but when we talked to the first set of doctors, it didn't sound like a truly viable option. (Though that could have been just the hubby not wanting a 'pacemaker' even though that wasn't what it was.) It was a few years ago, and I don't remember the reasoning. Does your mom have to take any medications with it?

[lookout123]

no medications that are for that medical issue. they just replace the battery (in patient) every 3-5 years. they are much more advanced than they were when she had hers initially installed. my grandfather's came in handy quite often.

[OnyxCougar]

The heart is a VERY strong muscle. My ex best friends husband has had lots of the those "caths" done, but they were the roto-rooter kind of caths, to clear the ateries of all the junk and build up. They put stints in to shore up the ateries and prevent collapse. And he was late 40's.

Being young is in your favor. Just get it seen by Dr. Goran as soon as you can. I don't recommend switching doctors. Dr. Goran has done well so far, don't fix it if it aint broke.