Doctor visit and a defibrillator question

[tbarton]

I saw the cardiologist this week. I'm 2 1/2 years out from diagnosis. About 5 months ago, she took me off of all meds. I wasn't on any meds except for lasix when I started seeing her about a year or so after being diagnosed. My EF was 35% or so. Stable since the time I left the hospital. I was back to feeling normal by the time the postpartum stuff went away. For the past year, she's been trying to get me going on meds -- ACE inhibitors, ARB's and Beta Blockers. I always have had a really strong reaction and had to stop taking them. With the ACE I had horrible pains in my hands to where I couldn't use them. With the ARB I'd pass out, even on the initial dose. With the Beta Blockers I gained about 10 pounds, started swelling, had huge fatigue, sob, couldn't sleep at night, couldn't excercise, didn't have the energy to cook proper meals. Even walking to the mailbox required me to lie down and rest. Anyway, when I saw her before Christmas, we decided to stop the meds and see how I did. We did a one of those radioactive scan things (I forget what they are called) and said we'd retest in a couple of months. If still stable I could stay no meds. If my EF decreased I go on meds and stop complaining. ;)

As soon as I stopped the meds, all the symptoms went away. I feel better than I've felt in years. I can jog a mile (slowly). I can run up and down the stairs. Carry my 2 yo. Work in the garden. I even went hiking last weekend. All stuff I haven't been able to do since I got sick.

First thing into the appointment she starts talking about implanting a defibrillator. Huh???? I have never had an arrythmia or anything. Not even any heart related symptoms that weren't related to the medicines since I got out of the hosptital. She said that's the new treatment for cardiomyopathy and she wouldn't be being a good advocate for me if she didn't recommend it. That the studies showed it was beneficial even in patients who hadn't had any signs of arrythmias, etc. I said I'd think about it but that I needed to research before coming to any decisions.

The good news: the new radioactive scan showed that my EF increased to 43% from 35%. The first increase since I got sick. Yippee! :)

My question is, do most of you have defibrillators? If this is a new treatment, does anyone have the studies to back it up? What are the odds that I'm going to have an event that a defibrillator would be needed? I'm confused about the terminology too. I thought cardiomyopathy meant an enlarged heart. Now that my heart is back to normal size am I still considered to have cardiomyopathy? I usually just tell people I had congestive heart failure since it's easier for them to understand. After the last visit when she told me that people with a low EF can still live a long life, I'm a little shell-shocked by this.

Teresa
PPCM since July 2002

[SusanD]

Without looking at your chart and specifics,etc, I can't give you specific advice, but I can relay the recent research on AICD's and guidelines for heart patients. These guidelines state that patients with an EF of <30% (regardless of etiology i.e. ischemic, viral,etc.) have an increased of sudden death d/t dysrhythmias and AICD can decrease this risk.

I guess the big puzzle with her recommendation is your EF is now in the 40's, which places you outside those recommendations. Do a net search on AICD's and EF" to get more info. I would type more, but I need to pick up my daughter from school.

And in the case of the problems with the meds, other paths to explore would have been slower titration of dose (the symptoms you described are somewhat common in initial beta blocker therapy) AND/OR switching to another beta blocker.

[marissar]

I don't have one and it was only suggested to me to get one if no improvement and that was when my ef was in the 20's. It is now 65 and no mention of one yet. My doc is very therough so if it was reccomended I am sure he would have said so. My ef at dx was 15-20.

[tbarton]

Thanks Susan. :) With the meds, we tried for over a year. The problems showed up on the initial doses. I'm very sensitive to meds. I can't even take Tylenol. :( We tried several different types of ACE and BB but I had trouble with them all. Even when I stayed on that dose for more than a month if anything the symptoms just got worse. I'm okay with the idea of no meds. I was just freaking out as to why suddenly I "need" an ICD when my EF is up and I'm doing so well when it was never an issue before.

Teresa
PPCM since July 2002

[SusanD]

Teresa....I would have similar hesitancies about the AICD, especially in consideration of your EF > 40% now and no history of dysrhythmias. Do you feel like you are able to discuss the recent research with her or are you more comfortable seeking a 2nd opinion ?

[Maggie Roaten]

My Cardiologist mentioned this to me also. He did a TWave alternan test. Ask you md about this test. It shows your likely hood of cardiac standstill. Not very pleasant to think of!! My TWave test was normal so I don't have to have one at this time. Hope this helps maggie

[tbarton]

Do you feel like you are able to discuss the recent research with her or are you more comfortable seeking a 2nd opinion ?

Susan,

I'm sure I can discuss it with her. I just hate discussing things and making decisions without knowing what I'm talking about. :) They study she was referring to is relatively recent. My doctor's group was in on the earlier study that has since been replicated by several others. Apparently it was found that even in people without arrythmias, etc. that the ICD saved lives. Enough so that medicare has even agreed to pay for it. :eek:

I'd like to read the study though, instead of just going by what I hear but I haven't found it yet. Apparently the EF cutoff is (was) 35% but she said lots of people who have EF's a little higher *want* an ICD for their peace of mind. I'm not in that group. ;-) I trust my doctor. I sought her out after I was diagnosed. She has experience with PPCM. In fact, someone from the original ppcm board goes to her too. :-) Though if I thought I might go for the ICD, I'd probably get a second opinion just because.

Teresa
PPCM since July 2002

[JAMESFETT]

Your cardiologist has all the information about you, and therefore is the best person to give the best advice. If she is recommending an ICD at this time (well past the greatest crisis point) there must be some reason--is it because you are not able to tolerate the ACE-inhibitors and beta blockers? Because those are the medications that protect against these undesirable rhythms, and if I had to choose one over the other to continue long-term, it would be the beta-blocker, among those it would be carvedilol (Coreg), even if it meant starting extremely low (such as one half of 3.25 twice a day) and titrating up if and as tolerated. Given current understandings it is not at all unreasonable to continue carvedilol up to 2 years or more post-diagnosis, even in the presence of normal echocardiography. So give great heed to your cardiologist and/or your "second-opinion" cardiologist, whoever that may be, advises.

James