New to group

Hello all,
I was recently diagnosed with diolated cardiomyopathy. After test after test, they decided I need an ICD. I have an ejection rate of about 25%. I had an electrophysiology study yesterday. They ended up shocking me after the heart went into ventricular fibrillation. They are also treating me with Coreg(beta blocker) and Lisop/Hctz for blood pressure, in hopes that the heart muscle will improve. I am still trying to reconcile all this in my head. I am 58 and in good health until this. (In my mind, I am still 29!!)

I am sure that there are lots of similar stories on this support group. Any thoughts, suggestions, etc would be helpful. Also, do any of you have any experience on these meds helping the heart get stronger?
Thanks for responding, Bill

8 Comments

Uhhh Yup

by gldoble - 2008-06-18 03:06:16

Hi there & 51 and I thought I was in good health until I had 3 heart attachs.

The docs have me on Coreg, Lisinopril, Asprin, Potasium, a form of Lasix , (Water Pills), & Lipator.

Do they work, to a point the BP meds keep my BP down, the Asprin ehhh, just makes minor cuts into larger ones. the Lasix, does a great job of keeping me near a toilet, and the lipator, ehhh.

However there is one evil side effect to the Beta Blockers. Ahhh hemmm, They tend to remove a lot of your libido. Making you pretty worthless no matter what. And at my age and having been clipped 4 years ago is not something I need or want. So once in a blue moon I get to take the little blue guy. And then things are normal for a couple of days.

But apart from that the pills do what they are supposed to without any other side effects.

As to your heart getting stronger; loose weight. I have lost 35lbs since last year and need to loose just 5 more. Walk, don't run cause your tinker toy may not let you, Eat healthy, not vegitarian style just right. By loosing weight you will help your heart deal with what is there as to your body, rather than stressing to compensate for the extra weight.

But other than that your heart strength will depend alot on how damaged it became. Me...haaaa when they were done with all of the tests prior to haveing this thing installed, I was @ 25% ejection rate, and the full lower 3rd of my heart was dead meat. So bad the docs said "yeah we can do a bypass, but becuase of the damage you have and what is left of your heart its better just to go with a 3 wire ICDPM". So here I am a year latter, feel about the same as before, excepting for the guy stuff and still kicking a screaming on a daily basis. And I guess thats the fun part cause I'm still able to do the things I always have been.

So enjoy and don't fret, the meds they are telling you to take will help.

Greg

ICD

by LindaScarberry - 2008-06-18 03:06:55

Locobill

I too at 53 was diagnosed with what you have. I took the meds for one year; in the beginning my EF went from 27 to 44; then in April back down to 30. So I had an ICD put in and I feel so much better. The worst part was waiting one month for the surgery. Now I'm one month post implant and I'm doing great!

Keep talking with people on this site; they have been through what you are experiencing. Doctors can only tell us what they know from the books and from hearing what their patients tell them. Keep asking questions!

Don't hestiate to go to private messages if you want to ask me more questions.

We are all here for you!

Linda

misc

by thomast - 2008-06-18 04:06:14

My experience is about the same as Gregs, I got a 3 wire PM/ICD 3 years ago , I was 73 at the time. I get along pretty good, just not too much energy. I do try to walk a mile each morning when I first get up. I take the usual meds, coreg, accupril, lasix, coumadin and tikosyn. I lost 40 lbs when it first happened because they had me on a horrible med, called sotalol and I was so sick I could not eat for 3 months. When they replaced that with tikosyn I was OK as far as eating but I have tried not to gain back the 40 lbs. Hang in ther.

Thomas

hey bill

by coryi711 - 2008-06-18 04:06:33

Today is my 45th birthday, I also have LV <30% EF, with 100% blocked [R] and 40%[L] main coronary arteries.I died during my ep study 12/04/07, they zapped me back, and installed a dual pacemaker with defib. My resting heart rate prior to all this was 115 + bpm , and my blood pressure was about 140 over 90, they started me on coreg cr 5mg, then 10mg, then 20mg. now I'm on coreg cr 40mg and I take Altace 10mg for blood pressure, along with 3mg of xanax to slow down my hyperactivity. Now my resting heart rate is about 80 bpm and my blood pressure is about 115 over 75. My cardiologist pretty much said i'm too far gone for asparin to help, he said for me to save my money. I try to do a couple miles a day on the staionary bike.

Hang in there,
Zombie

Welcome to the club

by harley63 - 2008-06-18 06:06:44

Hi Bill~

Can't provide any personal experience on the ICD and medications... but will provide a lot of support, rah rah's and encouragement!! Hang tough my new friend! Welcome to this awesome group of folks. Wealth of knowledge, humor, experience and support is what you will find here.

Zoom, zoom
Harley63

lost my id

by locobill22 - 2008-06-18 11:06:11

Thanks everyone for your responses. When I tried to log back on today, for some reason, it didn't recognize me, so I had to re-register with a different ID.

I guess I am coming to the realization that getting an ICD will be a good thing. As far as the meds go, it's encouraging to know that they can help the heart get stronger. I have lost about 25 pounds in the past year and would like to lose another 25. With Tim Russert's passing, there is a lot of press on heart problems. One of the interesting things was Dr. Oz talking about the importance of losing the belly fat for good heart health. He said that your measurement around the belly should be 1/2 you height in inches. I have about 6 inches to get to that level.

I am not thrilled about Greg's side effects. Is impotency a problem with all males taking Coreg? The reason I ask, beyond the obvious, is that after losing my wife to cancer two years ago, I have finally started seeing a woman again. So you can see where this question is going.

I guess I am lucky in that I found this problem before having a heart attack. I volunteer in the Emergency Room of our local hospital, 3 hours, one night a week. Tonight they brought in a 64 yr old women, with an MI. I guess things could be worse....

Bill

Hello

by candi51 - 2008-06-19 03:06:34

Hi Bill-
I am on the same meds as you- Coreg, lisinopril, HCTZ and an aspirin. I take Potassium to supplement because of the HCTZ.
I am 31 and was diagnosed with a rare cardiomyopathy called Left Ventricular Non Compaction early this year. Long story short my EF has gone from >35 to 40 already and they really think the Lisinopril wil help regenerate the heart tissue. They are hoping I can get back up to even 50% and that after 4 or 5 yrs may not need the Lisinopril.

I am having a hard time with losing weight on the Coreg and at first I had a general "down" feeling but I am feeling better now after being on the Coreg for a while. I had a bad reaction to Toprol so that is why we tried the Coreg.

I had an ICD implanted on June 2nd and it has been fine. Not nearly as much trouble as I was worried about. Actually now that I think about the cath and EP studies were worse for me. Several people suggested icing the site after surgery and propping up with lots of pillows and that helped me ALOT! I only took a mild pain reliever once right after surgery and then no more.

It really helps ALOT to be able to talk to everyone on this site. Just holler if you want to talk!

Candi

Hey wild Bill

by fred in Seattle - 2008-06-19 12:06:58

Well you found another Hoosier. I now live in seattle and like it. I have the same meds that you have an they seem to be working pretty good for me. My Dr just upped th dose. I started at 3.23 milligrams and he said that they will double the dose until I reach 20 milligrams i think. But I am felling better. Taking the low dose asprin does make you bleed better. Feel free to talk to this bunch of wondeful people and any time because they (WE) UNDERSTAND!!!!!!

CRUSTY OLD F- - -.
FRED

You know you're wired when...

You have an excuse for being a couch potato.

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