I may be getting and ICD.. would like input.

[Darren1]

Hello, I've been on the forums here for a long time, but have been inactive for quite a while. I'm a husband, father and athlete. I have never had any symptoms, have never had any "incidents" and my septum measurement is about double that of a "normal" heart. I currently do not have an ICD. I have had stress echos about once ever 2 years and wear a halter for a couple days every couple years (I request these from my doctors as a means of ensuring things are ok, especially since I live an active lifestyle).

This past month they saw abnormal activity when they reviewed my halter monitor readings (increase in heart rate to 170bpm for about 7 seconds while I was at rest at night and a couple times during the night where I stopped breathing). They suspect the breathing thing is sleep apnea and may be unrelated but we are going to follow up. The interesting thing is that I run 3-5 days a week during lunch and was wearing the halter monitor the same day and no events occurred during the run.

My doctor here in San Diego is suggesting the possibility of implanting an ICD since we have finally seen some abnormal activity. My youngest son has an ICD and I think it's a great "insurance" plan. HOWEVER, I am hesitant to have a medical procedure done unless it is really necessary (My youngest has a much thicker gradient than I do and does show abnormal activity more frequently with regard to monitoring). I'm going to email some of the HCM specialists at UCLA (and Doctor Maron if he replies to emails) to get their input. In general, I'd like the extra reassurance of having an ICD.. but am VERY cautious and believe that any medical surgery is generally a bad idea unless there is no other option. I also want to live a long happy life (and continue my active lifestyle).

Fellow HCM'ers, I'd love to hear you thoughts! I'd also be interested in hearing about how an ICD would affect my ability to run, ski, surf and other activities. Also, if I get an ICD, will I need to start taking meds (I currently take no meds).

Thanks!

-Darren

[mbcube]

Re: I may be getting and ICD.. would like input.

Darren - Have you been seen at a COE? UCLA is not one, though they do have some good interventional cardiologist. I was seen there initially. I doubt any doctor would give you anything but general advice given our litigious environment. Props on maintaining an active lifestyle but know that just about everything you listed is considered high risk for an HCMr. An ICD would not hinder any of them once your healed. You will not need to take any medications for an ICD, other than antibiotics prior to dental or other light surgical treatments.
Frankly - given that your 1) a father, 2) a husband 3) have a septal measurement twice normal, 4) are not on any medication, and your involved in highly risky activities for an HCMr, yes - I'd get an ICD. Tomorrow if possible. Thats my opinion. Yours may differ. but I strongly suggest investing in your future by visiting a COE and getting a care plan in place. Keep us posted on what happens.

[LooNTooNs]

Re: I may be getting and ICD.. would like input.

Darren, I can only reply with my thoughts and not any medical advice. Like mbcube, I suggest you contact and visit a HCM Center of Excellence. My story......I was diagnosed with HCM at 21 and was followed by my regular cardiologist until he retired. I also live a very active lifestyle, I played competitive ice hockey for years (goalie) as well as went to the gym 3-4 times a week and lifted weights (not crazy). My new cardiologist was adamant that I get an ICD. Being the father of 2 young girls my wife and I decided it was a good idea, so I was implanted. I stopped playing hockey and moved to officiating, and still live a very active lifestyle. Now to the whole point of my story, last Christmas during a JV High School game I went into cardiac arrest on the ice. No warning, no signs, just standing one second laying down out cold the next. My device fired and a few minutes later I was skating off the ice! Without that insurance policy I would not be here today and my children would be fatherless. To my family this was one of the most important decisions we have ever made. Please take the time and effort to fully research and make a truly informed decision.

[Darren1]

Re: I may be getting and ICD.. would like input.

Thanks all. I am wondering who/where the "centers of excellence" for HCM are in the San Diego area?

[mbcube]

Re: I may be getting and ICD.. would like input.

Darren1, COE's are few and far between! The only one in CA is Stanford. Most of us travel to one and have a good local doctor who works and communicates with the COE's. Most interested local Cardiologist do this (if their ego's allow it). In reality, most cards do not see many of us so it helps if they have an interest in us and learning more about HCM from the COE. Some of us visit a COE as needed - me? every 2 or 3 years. Some go yearly. I will say that when I travel to Mayo, stay 2 days, have tests for 2 days its cheaper than a single visit with my local HCM doctor in LA. You can find these centers here: https://www.4hcm.org/wp/hcma-resources/hcm-centers/

[Angelos_May]

Re: I may be getting and ICD.. would like input.

Well i was told the same.. That my hcm is caused due to some virus..

[mbcube]

Re: I may be getting and ICD.. would like input.

Angelos_may - Welcome to the HCMA Forum. HCM is NOT due to a virus, but is genetic. Often mutated genes have not been Identified so these are considered spontaneous cases. Cardiomypathy itself (a different disease) can be attributed to many things, including a virus.
Please consider introducing yourself in the "Hello, my name is. . . . Section of the forum.

[gfox42]

Re: I may be getting and ICD.. would like input.

Hi Darren1,
I agree with Marc. You've got really strong reasons to get an ICD.

I also agree with him that a visit to a COE is an excellent idea. Yes, doing so involves the expense and inconvenience of travel. But (a) for at least some centers, the net cost turns out to be less than visiting local docs; (b) it's your heart - spend the time and money; and (c) there is an enormous difference between the advice and treatment you can expect from a COE, and that from a good local cardio.

Gordon

[Darren1]

Re: I may be getting and ICD.. would like input.

Thanks guys/gals. I will check into a COE. It's sounds expensive, but then life is worth it . I will likely be getting the ICD. Another thing I need to consider is if I get one that has leads to the heard or the "new" one that is just under the skin. I know the one with leads can pace your heart out of trouble w/o a full shock sometimes and works for slowing heart rate, the one under the skin only works to shock you if things get too fast (of course, it's a lot less intrusive and has less possible complications because it's leads are not inserted into the heart). Tough choices. I lean toward the one with the leads because I am so active and I have slow heart rate at times (would rather have the device correct the problem gradually than "zap" me... also, I would rather not pass out while running/surfing/etc.. that alone could be deadly). Does anyone have thoughts on the types of ICD's?

[Colorado213]

Re: I may be getting and ICD.. would like input.

Hi Darren, my husband was diagnosed 6 months ago while visiting his grandfather in Poway. We went to the ER at Palmarado Hospital due to breathing difficulty. Turns out he was in Congestive Heart Failure due to HCM. We had no idea. He is 37 and played rec soccer two days a week, a snowboarder, and an avid hiker and biker. All that stopped. He was fitted with a St. Jude's ICD this past August, and underwent a septal myectomy at the Cleveland Clinic just over 3 weeks ago.
When we were at Palmarado the cardiologist there straight up told us to go see an HCM specialist. He said that they could not treat him in San Diego if we lived there. When we got to Denver we found an HCM specialist listed on the HCMA page, but even he had never seen a heart as enlarged as Justin's, so we went to the Cleveland Clinic, one of the Centers of Excellence. It was worth every penny. Dr. Lever is very knowledgable. Although do your research. HCM is still so unknown it is important to know what is the right option for you and your family.

We have three young sons, and me. We need him. Having that ICD has given us a huge Peace of Mind. I wish you the best of luck! Keep us posted.

[gfox42]

Re: I may be getting and ICD.. would like input.

COE's sound expensive. They aren't necessarily. I go to the Cleveland Clinic; my costs there are often less than for comparable local services, even after including the costs of buying a plane ticket and accommodations for a night or two. And my insurance covers it.

Of course I don't mean it's a bargain basement - just that it may not be as pricey as you'd guess.

By the way, the travel costs are generally tax-deductible.


Gordon

[mbcube]

Re: I may be getting and ICD.. would like input.

As to types of ICD's its really up to your doctor and you. Some are single lead, others are double and the new S-ICD leads don't actually enter the heart or go through arteries. I know the new S-ICD do not pace, so if your prone to go brady (slow) as I am, this may not be an option. Mine paces on average about 12% of the time I'm sleeping. Also, the new ones are quite large (think old version of the first iPod), and this may be an issue as well. I just had my second one implanted and while I wasn't happy initially with the placement, the swelling has gone down and the ridge & dimple are gone and its almost invisible.

[LooNTooNs]

Re: I may be getting and ICD.. would like input.

The COE is not expensive as most insurance will cover it. What gets costly is any travel associated with visiting one. For my family we went to Boston and made a short weekend getaway out of it.

[Jordan Z.]

Re: I may be getting and ICD.. would like input.

I am new to this forum....I have written an intro post...and expect that it will get through moderation at the beginning of the week. Having said that, I am amazed at the level of resources and information that has been accumulated in one place. I have spent a substantial portion of the last couple of months researching, reading the professional literature [consequence of growing up in a house with two medical professionals], etc.

The one item that struck me from this thread that I had really never considered is how fortunate I am to live where I do. I am twenty minutes and a subway fare away from Northwestern Memorial....everything in one place, close, and not having had to wait more than two or three days for an appointment to see whatever specialist was next on the list or get a test done.

It certainly makes me realize that I got lucky on that aspect of all of this. It also serves as a great reminder of the expression "there may be a better deal out there but, its the best one that you are going to get."

While I can't specifically comment on the ICD having not had the need up to this point, there is a quite similar point that does come to mind. I had an alcohol septal abalation attempted about a month ago, and had made an affirmative decision to decline the sedation for the procedure...though I did have the pain meds. Besides it being absolutely other worldly to watch the entire process, including the threading of the catheter through the arteries towards the heart, I observed them make four attempts at locating a suitable vessel unsuccessfully, and decide to terminate the procedure. The termination of the procedure carried the obvious meaning that the myectomy was going to be the next step. While it could be viewed as a huge disappointment not to have the ASA successfully completed, it certainly helps to understand exactly what is going on and how the process works. I certainly wouldn't recommend declining the sedation, just as I wouldn't suggest watching an actual myectomy surgery video if you are the slightest bit squeemish. However, it certainly has reenforced to me that whatever has to be done....its much better than the options available ten or twenty years ago...and certainly better than having to live untreated.

[mbcube]

Re: I may be getting and ICD.. would like input.

Jordan - The percentage of people who have the perfect anatomy for ASA is fairly small. Sadly, what we see on the board is people who didn't have "perfect" anatomy and the surgeon (typically an interventional cardiologist) with still attempt to go through with it. I'm guessing its a "close is better than nothing or as long as we are here lets. . ." attitude. Had this been the case with you, you might had had to become pacemaker dependent after a future myectomy. Glad they backed off and you are going the "gold standard" route.