Getting CRT implanted soon & so many questions

My regular cardiologist sent me to an EP who reviews all of the tests and he recommended that I have a CRT-D device implanted.

When I first was diagnosed with CHF, it was in an ER and while in the hospital the first ECHO showed an EF of 15. It has now been 2 years, and I am still very weak. My EF has only come up to 25. I'm on carvedilol, lisinopril, furosemide, spironolactone & Eliquis. I've been diagnosed with CHF, CAD, A-Fib. I have responded well to these meds & my bp is always low & I never gain any weight (I'm underweigh).

I just joined this wonderful group. I have so many questions, and I'll post a couple of them now.

The EP who did the diagnosis sent me to a cardiologist who has done thousands of pacing devices. I met with him, and it was like talking to someone who doesn't want to be bothered by questions. Anyway:

--I asked if the CRT device could be place on the Right side, since I do everything with my left arm...including cell phone with left ear, etc. His response...**I put all devices in on the left side.**

--I asked if he thought a CRT-D device would give me some improved energy, improved symptoms, etc. He said... **I have reviewed your file, and I don't agree with the EP and I don't think you'll get much improvement...but let's try it and you might feel better.**

--I am slim in the chest area, and I asked if there was any way that he could place the "device" further under the skin or somewhere else, anything to make it not bulge out very much or at all & not show. He responded... **I place devices in a pocket right behind the skin.**

--I've talked with my regular doctor & also my regular cardiologist about my worries about inappropriate shocks, and frankly, I don't want a CRT-D. I want a CRT-P (a CRT device that has a built in pacemaker, but without a Defibrillator). I know the pros & cons... but the surgeon who I've talked about above said.. "Yes, we could do that, but I want you to have a CRT-D ... kind of like, "if you insist...but I don't like you asking all of these questions & demands."

--Should I get a second opinion...I am hesitant to ask for one, since my regular cardiologist and the EP both think the world of the guy (the guy who never answered any question I asked him other than saying ... "my way, take it or leave it" (or so it seems to me).

--I am a lap swimmer. I'm age 69, and I've been swimming laps 3 to 4 days a week since age 6. Actually, I swam twice a day 7 days a week as a youth through high school and college.
**Will I be able to swim after about 4 to 6 weeks?? Will I be able to do breaststroke & backstroke. My worrying mind is concerned with movement of arms over my head, will this cause any problems with the device or the leads?

Sorry, I've asked too many questions for one posting. But any feedback or thoughts would be appreciated very much!

Best to all!

Ron..

9 Comments

questions

by Tracey_E - 2015-08-27 01:08:14

I'd get another surgeon! No matter how great he is, this guy has no bedside manner and is inflexible. I had one like that. My cardio's office loved him, I met him and did not get along at all. I explained my reasons and asked for someone else. It's our bodies, our choice who operates on us.

1. Left side is easiest because that's where the heart is. Once you heal, it doesn't matter if it's on the left or right.

2. I can see why he'd say that. There are never guarantees. If your hopes aren't up, you won't be mad at him if you don't come out of it feeling better, you won't be mad at him later.

3. They can definitely do it lower/deeper, sounds like he just doesn't want to. It can and should be placed lower if you are a swimmer.

4. If they all want you to have a defib, get the defib. Hopefully you'll never need that function, but if they're right and you do need it one day, it can save your life. Inappropriate shocks are very rare.

5. I'm surprised they didn't suggest getting the CRT sooner, when your EF was first found to be so low. I don't think you need a second opinion to tell you if you need it or not, but I do think you'd be happier with someone else doing the surgery, someone willing to place it lower.

6. You can swim again after 4-6 weeks. Some drs prefer we wait 10-12 weeks for full strokes, but once fully healed there's no reason you can't do what you want.

It all depends

by Theknotguy - 2015-08-27 01:08:15

Per DonR, when you ask questions you may not like the answers.

In the US we have mickey D's. You walk in, order what you want, tap your foot three times, then walk out with what you ordered. For some strange reason, Americans seem to think they can do this for anything. Not so. I get the feeling you'd like your heart device to be the same thing - the way you want it. Maybe it's a need for control? I can tell you from personal experience, sometimes you have to go along for the ride. What you get is what you get.

--I asked if the CRT device could be place on the Right side

I'm ambidextrous. Was in a coma when they put the PM in so didn't get any say in where the PM went. After the first few weeks, I haven't had any problems with the device being on the left side. The warning about using the cell phone on the left side is just lawyer talk to ward off any potential lawsuits. Biggest problem I've had is trying to sleep on the left side. But if the device was on the right, I'd have the same problem.

--I asked if he thought a CRT-D device would give me some improved energy....

No one can predict how you feel with the device. The majority of people have an improvement. How much? No one can predict.

--I am slim in the chest area, and I asked if there was any way that he could place the "device" further under the skin or somewhere else....

I don't understand why people are so vain about the bulge. I see people walking around with an inner tube of fat around their middle and don't think a think about it. But when they think there might be a little bulge from the device they get all hot and bothered. Yes, mine has a little bulge. If you know where to look when I don't have my shirt on, you can see it - if you know where to look. When I have a T-shirt on, you can't see it. People don't know I have a PM unless I tell them. You're making a mountain out of less than a mole hill.

We have another member on the forum who had the deep implant because she is very athletic. It took longer to heal and caused a lot more pain. Her comment is it probably isn't worth it unless you're into extreme sports. I go down to the woodshop. Move all sorts of weight in the form of wood. Some of it is awkward to move. Absolutely no problem with my PM being in the way. And I have the under-the-skin implant location.

--I've talked with my regular doctor & also my regular cardiologist about my worries about inappropriate shocks, and frankly, I don't want a CRT-D.

You're qualified as a heart doctor??? You're so good you can diagnose yourself and know exactly what is best for yourself??? Don't think so. In your case, I'd find the best doctor I could and go with his opinion. You may not like his decision, but he has a vested interest in keeping you alive.

--Should I get a second opinion...I am hesitant to ask for one, since my regular cardiologist and the EP both think the world of the guy ....

Yeah, I've had the "greatest doctor in the world" spiel too. Get the second opinion. But don't get your boxers in a bunch if they come up with the same answers.

--I am a lap swimmer. I'm age 69, and I've been swimming laps 3 to 4 days a week since age 6. **Will I be able to swim after about 4 to 6 weeks??

You gotta let the scar heal. Then go easy until the scar tissue is stretched out and the nerves have healed too. You may get sore spots from pulling the scar tissue and you may have to wait for that to heal. You may also get pinpricks, "ant bites", and other feelings from the healing nerves. But you will be able to go back to swimming. How long depends upon how your body heals.

I do hope everything goes well for you.

None of us wanted a device

by Grateful Heart - 2015-08-27 02:08:39


But we've all been there. A 2nd opinion is sound advice. Many of us have had Docs who did not listen. Write your questions down and then find a Doc who will answer your questions and take your concerns seriously.

It sounds like the meds have helped you some, but you still need more help by way of a CRT-D. Another opinion would help ease your mind.

My EF was 24% in the beginning and only came up to 30% with the meds. After the CRT-D, it is now 50% and has remained there for the past 6 years. I have never been shocked. My device sticks out and I am not thin.

There are no guarantees in life but most people do see some improvement after the implant. Learn all you can about it and put things into perspective. These devices are lifesaving. You can get back to swimming after the healing process.

Grateful Heart

Interestingly

by IAN MC - 2015-08-27 03:08:02

I had a "cardiologist ", who is mainly a plumber , do my PM implant . He loves fitting them ( whether you need them or not I wondered ? ) and he is VERY good at it . When I needed an ablation I was referred to an EP.

I must say if I had to choose between bedside manner and implant skills I would go for the guy with the skills every time.

I once had a shoulder op done by an orthopaedic surgeon who treated all nurses and patients as a lesser form of life but he is the top guy . I told him that I wanted some bedside-manner and he grunted " You won't get it from me ! "

He did a brilliant job on my shoulder and didn't even have the inter-personal skills to accept my thanks with any grace.

I say this because, having read this site for a few years now I get the impression that some Drs are simply not very good at doing implants. I'm sure they're charming though when they tell you what went wrong !

Good luck Ron whatever you decide.

Ian

Response to the sword

by oldearthworm - 2015-08-27 03:08:36

A must read ... stated so eloquently .. Some doctors do have an ego problem ..DO ask questions and demand answers ! also , fire that egotist doctor ..
First .. seek second opinions and consider what opinions are ...
The device "lump" , which must be on your selected side, is a "badge of courage" , wear it proudly ..

ok, Ron...

by knb123 - 2015-08-27 07:08:01

...I will add my voice to those who tell you to get a second opinion. From your bio I see you are in the San Francisco area. It should not be too difficult to find an excellent doc who implants the device you need, and who will have a more diplomatic way of handling patients' questions (I, too, would fire a specialist who treated me with such utter disregard).

SF has numerous excellent medical centers that are also teaching hospitals. (I always recommend teaching hospitals because they see every kind of case imaginable; it increases your chances of the right diagnosis and technique in the event you have anything rare going on--as we are all uniquely constructed).

Once you find the doc you trust, you need to trust his or her judgment about your case. For example, the implant site: I too have a slender frame. After just a couple of months post-implant, there is no detectable "bulge" at my site. Yes, the scar is still somewhat visible, but the implant site is not at all raised. And, BTW, I'm left-handed so I do nearly everything with my left hand and arm. After a few weeks I learned to hold my phone with my left ear.

You're right: it's a big step you're undertaking. You need to find a doc who answers your questions without an attitude. But remember--a two-way street. Ya gotta trust your doc.

Good luck and let us know how things went.

Asking Questions is a...

by donr - 2015-08-27 12:08:41

...double edged sword. You may not like the answers!

1) Your potential implant Cardio is a loser. He has an ego big as the Queen Mary. He knows so much & is so brilliant that your questions are beneath him. He does NOT treat your head, which is actually a significant part of the job of any physician.

2) Napoleon Bonaparte said, way back in about 1806, that "In battle, the mental is to the physical as three is to one." Not even knowing he would state a maxim that applies to all things medical (especially to Pm issues).

3) Your potential cardio is not heeding that maxim. If he cannot convince you of the wisdom of his philosophy of practice, he is definitely not going to help you.

4) Go get a second opinion from someone a bit less arrogant who will take time to treat your head along w/ your heart.

5) Tell both the EP & your own cardio EXACTLY why you don't like the arrogant guy. No bones about it - plain, forthright & honest.

I had belly surgery by that cardio's "Joined at the brain" brother & unfortunately did not find out what he was like till post op. I had to tell his partner, who I dearly loved, what an arrogant dork I thought his partner was - then went out to find my own surgeon for all follow-up work. Sometimes you gotta do what you gotta do!

Now for the other edge of the sword:

6) You are being a bit stubborn in your approach to this. These guys know a lot more about this issue than you do. Listen a bit more patiently to their ideas; some may well be extremely important & "correct."

7) There are many options that should be open to you - like the side it is implanted on & how deeply it is implanted. They are NOT cast in concrete.

8) You have the right to refuse any treatment - it's YOUR body - but do not stick your spear in the ground on an issue like having it turned off in the future. You know no more about the future than they do.

9) From this vantage point, you are a case for a CRT-D. All CRT devices are first PM's, then Defib devices. Find a cardio who will listen & explain why to your satisfaction.

10) In your bio sketch you commented that they would not do what you want. Just remember that they have done a lot of these procedures & have a pretty decent idea what the future holds. But they are not God & have no certainty of knowledge.

11) Get a second opinion, by all means. BUT listen w/ an open mind to rational reasoning & a Dr who will treat your head. THEN make your decision.

Donr

dfib concerns.

by dhusemann - 2015-09-02 08:09:05

Since I am in waiting period before a final decision on an ICD.

I had an HF a little over 2 years ago. EF was less than 25%, most due to Very High Blood pressure. 6 months later my EF was back to 45% and talk of ICD stopped.

about 2 months ago, my HF got worse, EF has dropped down to mid 20's.

Now I do have the same concerns of getting inappropriate Shocks. But in my research less than 10% get those shocks and most of the time it can be programmed.

But here is the key. with an EF of less than 35% you statistically are 20% higher chance for a Sudden Cardiac Death.

Every year I have to get CPR classes for work. So I know
without cpr, a person that has a heart attack(MI) or a sudden cardiac arrest. without cpr has less than a 5% chance of survival.

With CPR that chance rises to only 20%, with an AED that chance rises to 80%.

A couple of other facts. While people do with Afib, without symptoms (there is a higher chance for a Stroke, and slightly higher chance for a SCA which can lead to SCD) the issue with an LOW EF is a higher chance of Vfib,

My understanding is that there is typically a Ventral Tachycardia before a Vfib. and that an ICD or a CRT D will attempt to do low level shocks to prevent the heart to go into VFib.

But if you do go into vfib, you won't be the one in control, typically within seconds you will be unconscious from lack of blood flow.

So given those statistics and that I am single and have no roommates. I have an option of a Zoll Life vest, which you have to wear all the time or an ICD possibly a crt-d.

additionally

by dhusemann - 2015-09-03 02:09:34

I should state my dad passed away 2 days after his 66th birthday last year. from sudden cardiac death so I may be a bit biased.

You know you're wired when...

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