Pacemaker/dICD vs ICD

[Laoshur Member of 1000 Post Club! Find all posts View Profile Close Laoshur]

I saw an electrophysiologist this past week. He wants to do an EP study in two weeks. If he concludes I need it (I have fainted twice and have sudden death, but at middle ages, in the family), he said they would implant a combination pacemaker/defibrillator two days later. Since reading several posts on this site, I see that many people are unhappy with pacemakers. I also saw that someone mentioned that ICD's now have a pacemaker function. Is this true for all of them, thus explaining the doc's combination? Or should I consider requesting just an ICD? This all seems pretty amazing, and a bit overwhelming, since I plan to fly to China 10 days after the implantation if they do it, move to a new apartment the day after we get there (jet lag and all), and start teaching again a week later. Since I have no elevators and lots of stairs and a laptop, projector, boombox, speakers, etc. to get to each class, I cannot imagine having a pacemaker that made me feel worse, as some people have described. Can anyone enlighten me on the options?

Thanks!
Rhoda

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: Pacemaker/dICD vs ICD

Dear Rhoda,

First of all, I need to point out that since you have fainted twice and have sudden death in your family it seems redundant and silly to have an electrophysiological study (EPS). HCM specialists are not usually doing these anymore since they don't really tell us anything about HCMers. The risk factor decision tree is how ICDs are decided upon.

If you have 2 or more of the sudden death risk factors, then you "win" an ICD: fainting/incorrect blood pressure response to stress test, ventricular tachycardia, a septum over 3cm, history of cardiac arrest, family history of sudden death. So getting an ICD in your case seems superfluous.

Second of all, you CAN'T lift your arms above your head for at least three and more like six WEEKS after your implant (regardless of type of device). If you are going to China soon, you need to get that ICD NOW so you have time to recover before you go. There is no way you are going to be able to do all of that alone, in that time frame.

Third, pacemakers have guidelines, too. There needs to be a reason why your doctor wants to pace you. Pacemakers where thought to be helpful for HCMers in the early 90s, but that has found to not be true for most.

So unless there is some profound reason for pacing, you probably don't need it. ICDs come with and without pacing. ICDs also need to be programmed and adjusted. You will need regular checkups of the device (especially in the early days) to make sure it is set right. Will you be able to do this in China?

Where are you getting the device implanted? what is their track record? How many do they do every year? It isn't as risky as open heart surgery, but it is still a serious procedure and you are entitled to know how qualified they are to do them.

If I were you, I would be asking my doctor what benefit pacing would have, why aren't they using the risk factor guide instead of the medical equivalent of "poking your heart with a stick to see if it stops," and how are you going to get your ICD follow-ups in China.

I'm sorry if this sounds really harsh, but I'm really shocked at your doctor's treatment plan and hope that you have time to see an HCM specialist before you go. From what you say, you need an ICD and you need it now. End of story.

take care,

S

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Re: Pacemaker/dICD vs ICD

We were living at an American Air Force Base in Japan when they decided that my husband needed an ICD. We flew to the States and they implanted one. He went back to Japan in just 2 weeks. He didn't have to move when he got there, but the flight was just fine and he was able to drive with no problem. The biggest problem he had was finding someone to interrogate the ICD while there since we lived in a rural area. They had to bring someone in from a bigger city.

As far as pacers/ICD's go: Hubby has a combo unit. The way his is set up is that if his heart rate falls below a certain preset beat-per-minute setting it will pace him. Also, if his heart starts to race it will attempt to pace him back into a normal rhythm. If the pacing doesn't work it will charge and shock him. He's never fainted and he's never had the ICD record anything unusual.

I agree that you probably don't need to have an EP study. Have you seen or spoken to a specialist?

Reenie

[Cynaburst Senior Member Find all posts View Profile Close Cynaburst]

Re: Pacemaker/dICD vs ICD

I have a Medronic Marquis DR, which is a pacemaker and ICD in one. I believe that just about all of the ICDs implanted today also have a pacing function, which can be turned on or off, depending on your circumstances.

I am demand paced at 60 bpm, which means that if my natural heartrate falls lower, the pacer kicks in. There is no difference in the implantation procedure, so you might as well get one that performs both functions.

As to the EP study, my former EP was recommending one for me too, before I got the ICD. I decided against it, because after doing LOTS of research, I found that EP studies have not really been found to be meaningful in HCM patients. They should decide whether you need an ICD or not from the identified risk factors. I think what Sarah was saying above is that you DO have a few of these factors, i.e. a history of syncope, and sudden death in your family. Therefore, these should be the basis for the decision...not the EP study.

As I remember, Lisa had hooked you up with a Doc to see. Did this person recommend the E.P. Study? You should see what they say about whether you should have the ICD or not.

As for resuming life after the implant, you are not supposed to do any heavy lifting for a few weeks, nor are you supposed to lift your arm over your shoulder. The pain is minimal, and climbing stairs and stuff should be ok, but careful about how much you lift and waving your arm. In my case, I began to lift my 28 lb. son again after about 2 - 3 weeks, albeit carefully. Had I not had him, I would have waited longer.

Please write if you have any more questions, but do look into avoiding the E.P. study.

Best,

Cynthia

[Chris Brown Shy Heart Find all posts View Profile Close Chris Brown]

Re: Pacemaker/dICD vs ICD

Hey Sarah,
Am I considered to be in the "most" group, since I have a pacemaker and I am being paced over 90% of the time. Since I had my dual mode Pacer put in 1999, My symptoms have greatly reduced. I can walk up stairs with little or no problem.
I should be getting a new pacer in a 12-18 months. Why should I change what is working?
Chris

[Reenie Super Moderator Find all posts View Profile Close Reenie]

Re: Pacemaker/dICD vs ICD

Chris, if your pacer makes you feel better, then you may need to continue to use it. The no-pacer theory, if I remember correctly, is because some doctors a while back thought that if they paced the heart the thickening might reduce. That didn't turn out to be the case. I think that's the group Sarah was referring to.

Reenie

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Pacemaker/dICD vs ICD

let me add my 2 cents...
EP study had been used to detrimine who is at risk for SD -- Please note the word HAD... We have learned that in those with HCM EP studies have proved to provide minimal information to help detirmine risk. So much so that in 1999 the fed government (HICFA - those who manage medicare) said that those with HCM were approved fro ICD's - when the old standard was to have a positive EP study before they would pay... this should give you a big clue as to the thoughts on the matter.

Now regarding pacing - it is now thought that due to technology that the pacer/icd units are prefered. You may never need the pacing feature...but you may so if your going to have the ICD in ...then yeh go ahead with the dual chamber pacer/ICD such as noted above.


Sooner than later would be my thoughts... so you can get to work once back in China!

Be well,
Lisa

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: Pacemaker/dICD vs ICD

Dear C,

I never suggested removing pacers from people who need them. All I said was that the doctor, in this case, needs to explain why a pacer is needed now (if it is) and whether the doctor may have been acting on old info suggesting that all HCMers should get paced needed to be ruled out.

Dear L,

You can certainly get a dual pacer/ICD unit and have them NOT turn on the pacer, but have that function available if you ever need it down the line. But make sure that they don't turn it on just because it is there unless you really, really need it.

take care and good luck,

S

[Laoshur Member of 1000 Post Club! Find all posts View Profile Close Laoshur]

Re: Pacemaker/dICD vs ICD

Thanks all,

Actually it was the doc that Lisa hooked me up with who wants to do the EP study. I felt that he was rushed and, to further complicate the situation, the test results I brought from the cardiologist to him did not mention HCM, even though the cardiologist had told me I had it. So, the doc that Lisa recommended had me do another echo, which showed a septal thickness of only 1.4, instead of the 1.9 the cardiologist had told me. All in all, it was a frustrating day - this past Friday. It made me wonder whether the Reader's Digest article might be somewhat of a disadvantage to those of us who have been recently diagnosed. I have not seen this article, but as an acadamician I can tell you that docs and scientists are very skeptical of people who develop diseases when they appear in the RD. The doc made the comment, "So, is this what you expected me to do?" I assured him, honestly, that I had no particular expectations, as it had been Lisa's idea for me to see him. (I almost added that, I had not seen the RD article, so if that was what he thought was driving this, he was wrong. But, I did not want to put him on the defensive, even though I was, so I kept my mouth shut.) I guess what I am trying to say is that I felt on the defensive all day, as though I had to prove that I was not making this all up, so when he told me to do the EP study, I had no idea whether this was or was not standard procedure, so I agreed.

For those worried about my lifting when we move, thanks, but I have a wonderful husband who will do any heavy lifting. I was more concerned about the pacemaker making me more tired and then the lifting that will be necessary to get to class. Ed, the above mentioned wonderful husband, says we will figure out a way to get stuff to class.

So, what do you suggest? Should I call the doc and demand an ICD without the EP test? I am not in the habit of doing such things and the thought daunts me, but I am open to suggestions.

Thanks again,
Rhoda

[Reinhard Junior Contributor Find all posts View Profile Close Reinhard]

Re: Pacemaker/dICD vs ICD

Dear Rhoda

As far as EP study, I'didn't have one done. I had several risk factors like a short episode of v-tach, ( 24h halter ) high septum measurement and the sudden death in the family of my fathers sister ( questionable for HCM ). Also 2 out of the 3 specialists I saw suggested an ICD. No brainer here!!
I've had an ICD/Pacer since march. My normal heart beat at rest was usualy aroung 60 and I'm not the athletic type. With HCM the doc put me on meds to "relax" the heart muscle which caused bradycardia while I was resting, therefore the doc set my pacer to pace my ticker at 60 bpm when it drops to 60 or below. I recently had it interrogated and it showed that I was being paced 20% of the time, probably when I'm sleeping.

Reinhard

[Sarah Brave Heart Find all posts View Profile Close Sarah]

Re: Pacemaker/dICD vs ICD

Dear Rhoda,

You can certainly go through with the EPS if you want to, but know why you are having it done and what it will accomplish.

You should also know that it is not a risk-free procedure and understand why -if you already have 2 sudden death risk factors- you need to prove you have more in order to get an ICD.

And why would you have to wait another two days; why not implant immediately after the EPS?

S

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Pacemaker/dICD vs ICD

You bring up a good point. It is very important to have your records with you when seeing a doctor. Docs work off of data not what someone says...but what they can show "proof" of. This sometimes leaves people with a feeling of having to "prove their point" to a new doctor. Having your records in hand at the apppintment will help.
If memory serves me correctly you have others in the family with HCM, did you explain this to the Dr?

It is not a simple issue - "to ICD or NOT?" If your diagnosis is not 100% clear - which a septal measurement of 1.4 can leave room for question - it is very hard for a doc to make the call.

Talk to the doctor more and make sure you are feeling comfortable with the conversation before you make any moves on treatment.

Be well,
Lisa

[kthanki Junior Contributor Find all posts View Profile Close kthanki]

Re: Pacemaker/dICD vs ICD

One more thing to keep in mind about going to China...
The first six weeks after the procedure, typically heart is supposed to be in an acute phase. Doesn't mean it is dangerous, but the response varies from person to person.
You may need frequent check ups and adjustments of your device during this time. Also, the threshold changes during this time to which should be adjusted if the pacer function is on. This is the minimum voltage needed to beat the heart.
Also, HCM meds affect the AV delay. To ensure they don't go out of hand, pacer is used as a back up which keeps watch, and kicks in if the AV delay is longer than the set no.
Also, AV delay affects the feeling of how soon or how late you feel out of breath. All these adjustements kind of settledown in the first 6 weeks.
From my experience, staying close to the home base was very helpful for the first 6weeks.
And also lifting the hand above your head... I have heard people giving time frame of 2 weeks to 6 weeks. Believe me.. stay closer to 6 weeks.

[Lisa Salberg HCMA CEO and Founder Find all posts View Profile Close Lisa Salberg]

Re: Pacemaker/dICD vs ICD

I was a bit tired when I posted my last comment on this topic and wanted to clear up a point.
In HCM EP tests are viewed to not have a great deal of value...however in other conditions they still have a great deal of value. If the diagnosis of HCM was not 100% clear to a doctor - which sound like may have been the case here...I am not surprised in the suggestion for an EPS.

Being awake makes a big difference in posting replys

Lisa

[Laoshur Member of 1000 Post Club! Find all posts View Profile Close Laoshur]

Re: Pacemaker/dICD vs ICD

Wow, there were so many questions asked here, that I had to take some time to stand back and think before answering. Let me try to see how many I can cover:

The reason for waiting two days to implant if they decide I need it after the EP study was simply that the doc wanted to do it the next day, but the surgical lab was not available for a long enough period.

Yes, since I was diagnosed, my sister has been diagnosed a few weeks ago. We also believe that my daughter has it, but she is in job transition right now, so we are waiting to have her tested. And yes, I told the doc that.

I did bring all my records, as I was given them, to the doctor. I think that the new law regarding patient access to records may be a problem here. The cardiologist I have been seeing clearly showed me the 1.9 cm thickening, but had to measure it himself as it was not on the record. This was in spite of the fact that the echo technician had clearly showed me the thickening and how it was hitting the valve. So, why did it not show in my records and why did they not say HCM as a diagnosis? I cannot be sure, but when I mentioned this to a friend and former student who is a nurse, she said she was not surprised because many records are vague now because that gets by the fact that patients can ask for their records.

I am still somewhat puzzled by the relationship between septal thickening and sudden death. As I understand it there are two camps: One would accept my having fainted twice and my family history of sudden heart failure as factors to be considered in whether I should receive an ICD. The other camp says that since my septum is not very thick, I am not a candidate. Is this correct? Does anyone have a reference to a tech paper on the two views and a comparison of their data? (I am a biologist.)

Also, the doctor told me to go off the beta and calcium channel blockers 48 hours before the EP study. He offered to have me hospitalized for 24 hours before the procedure, but I said I was not afraid, since as recently as April I was running around all over Beijing without them. He just said to watch for severe arrhythmias and come immediately to the ER if they occurred. Was I stupid?

Thanks for all your help!

Rhoda