I have finished reading all of the introductions and learned a lot about everyone and decided it's my turn to share. I have had my ICD for three years now, wow, can't believe it's been that long! Like some of you I was in denial about my heart failure, and I somewhat still am. I have been totally healthy my whole life, my parents still are, my dad is 72 and bike rides and only takes vitamins. I developed heart failure during the end of my pregnancy with my fifth child, I thought I had the flu for two months. I couldn't breathe or sleep and attributed it to being sick and unable to recuperate due to the pregnancy. After my little son was born and I went home, I could not even carry him up the stairs without sitting on the edge of the bed gasping for breath. My legs and feet were tremendously swollen, and it was getting worse not better which didn't make sense since I already had the baby. I was at home with 5 kids for 5 days unable to breathe or sleep and finally told my sister I could not take another night of not sleeping and would she please return me to the hospital. I thought I was going crazy. When I found out I had CHF I thought I was going to die. I lost 30 lbs. in the next three days in the hospital, between urinating, bleeding still from the baby, losing my breastmilk which was heartbreaking, and bawling my eyes out! My EF was 15, and last year I had a MUGA and it went up to 38. They didn't tell me that with much excitement however so I am wondering what that means. When the baby was 1, my echos were still awful and I had no choice but to get the ICD. (My cardiologist hoped I only had the CHF that comes with pregnancy and goes away completely but I didn't) I work part-time as a caregiver for the elderly with Alzheimer's and am attending college to become an RN. My kids are Luke 18, Carly 16, Carolyn 13, Gia 7, and Nino is now 4. I am too busy to have any hobbies, between school and my kids and my job, but I do like to swim in my pool, go shopping, and be with people who make me laugh. Oh since everyone seems to discuss their shocks, I haven't had one yet, although at my pacer ck they did say I had an episode in November but by then I could not remember that day of course. I am really scared of what I will be doing when I have one. I will attach a picture when my teenagers are home to help me, they are way more computer savvy than me. I would love to make new friends on this forum and hear about other people's ups and downs, feelings, etc. My name is Michele I live in Plainfield, Illinois and I don't know if my name will automatically pop up when i submit this or not.

Hello Folks,

I'm a 57-year-old father/husband/etc. By profession I am a saxophonist (second syllable stressed for the English). I live in Austin, Texas.

I returned from 6 months on the QE2's last World Cruise on March 30, 2008. I flew to Atlantic City for a short job, then came back home sick. I went out on QE2 with a clean bill of health after an exhaustive physical, including an EKG. But soon after coming back from New Jersey my wife and I flew to New Mexico for a vacation, and when I climbed up the jetway, I was totally winded and unable to walk more than a shuffle. I called my doctor in Austin, who told me to head over to the nearest hospital and have a chest x-ray. The next morning I called back and he told me that I'd better check in to the hospital because the x-ray showed an infection in my heart. Up to that point, I'd thought that the problem was an upper respiratory infection, something easy to catch in the confines of a cruise ship. The doctors in Santa Fe found that I was in Vtac, but chose to stabilize the situation so we could fly home to Austin. So off we went, with the cardiologist's name back home, courtesy of a wonderful dr in Santa Fe who used to live in Austin.

Long story short, I had a ICD put in on June 30. They opened me up again to fix the leads the following day. I've gone from a person who takes one vitamin a day to one who takes 20 pills a day. I do like the dr says. I'm wondering if I'll ever go back on cruise ships, but I have enough gigs here to keep me busy. I'm in cardiac rehab--they were kind enough to let me bring in my horn so I could prove to the dr that a saxophone is about as easy as level 2 on the treadmill. I'm keeping down to one wedding a week.

I discovered this board a couple weeks into "the new me" and you've been very helpful while I was recovering and lurking.

Throughout this ordeal my wife has been my rock of strength, and I'm hoping to benefit from your experiences, as I already have been. Nobody gets through this thing alone, at least as far as I can tell.

So that's my story, and I'm sticking to it.

RF

Hello, My name is KevinI am 53 yrs old. First heart attack on Feb 27, 08. ICD implant yesterday 7/17/08 because the EF was below the marker that the doctor wanted it at. Married for 30 yrs, have 2 granddaughters, 1 son (only child). Great wife who has been at my side ever since this started. Not sure what to expect, just taking it one day a a time.

Hello.

My name is Bill, and I received a Medtronic Virtuoso DR on June 30, 2008.

Why? Principally because my ejection fraction is 25% and I have been plagued with atrial fibrillation.

This story begins in 1974. I was travelling to England, Norway and to North Sea drilling and production platforms while managing development of computer programs to be used in oil and gas production. Came home from one trip and proceeded to have a rather massive MI, total blockage of the LAD. This did a fair amount of damage to my ticker. It had been prone to PVC's since I was 25 years old, but never anything particularly alarming.

In 1981 I had 6 bypasses. Marvellous! I was restored to non-anginal status. After surgery, I did whatever I wanted and walked 5 miles nearly every day for years.

But in 1995 I started having episodes of afib and was twice electrocardioverted to little effect. My low ejection fraction (about 40% at that time) combined with very rapid afib heartbeat insured that there was not sufficient blood circulated, and I had severe angina with each afib episode. I was put in the hospital and started on Sotalol and warfarin. Sotalol steadied my heart rhythm and held things down for more than 5 years.

Then afib fired up again with a vengeance. Echocardiograms showed that my EF was in the range of 20 - 25%. My EP put me in the hospital and started me on Tikosyn which has done a good job to this point.

My cardiologist and my EP both strongly advised me to have an ICD; they both warned me about the possibility of SCD. So, on June 30, after rather lengthy consideration, I had a defibrillator implanted. So far no jolts; the implantation site is healing very nicely, and I'm glad to have it.

Since my cardiac difficulties date back 34 years, and my 6 bypasses are on their 27th year, I have no emotional distress about the ICD. That might change if I get inappropriately jolted, but not likely.

How old am I? Well, let me put it this way: I was in the US Navy in World War 2.

I have been quite fascinated reading about others experiences.

This is a long discourse. Now I'll shut up.

Hi!

My name is Trish. I'm 35, and received my first ICD 2 days ago (07/25/2008). It's a Boston Scientific Confient E030. I have severe HOCM, with VT that I just found out about in May. I also have ITP (idiotpathic thrombocytopenia purpura), which is an autoimmune disorder that attacks platelets.

My resting (can't remember the word) ratio is 80mmHg...but I don't know my EF. Hopefully the ratio will be improved with the ICD... I am on Toprol XL.

I'm in the Chicago area, work full time...have 2 cats and a wonderful boyfriend. Actually, one of my cats has HCM as well, and he's been doing well for over 2 years only on beta blockers.

I don't really know what else to tell you...I'm new at this, and don't really get all of it yet...and am very overwhelmed! I'm glad to have found a support forum specifically for ICDs.

Hello, My name is Mark, and I'm 45 years old from Oklahoma City. I had a Medtronic Virtuoso DR implanted on May 9, 2008. I'm married with two Daughters 14 and 6 years old. Nobody is quite sure what's wrong with me yet, but I'm hopefully going to be checked for LQ soon. To make a very long story short, I went to church to watch my youngest Daughter receive an award on the evening of May 7th and felt just fine. Had worked out in the yard that day, and will admit that it was one of those very stressful days for some reason, but still, felt just fine and was excited about my Daughter getting her award.

As I sat down in the church I had just seen several people get their awards along with my Daughter, then my vision became very blurry for just a few seconds. That's the last thing I remember. The rest has been told to me by my Wife and other people that were present at the church. I was told that I did die and was pronounced dead, but was apparently shocked three times and brought back. Other than the typical things that all of you have heard from people that have died, my story would be the same as theirs or very similar, but I don't have any clear memories of what happened until about two days later. I do however remember dying. My life has already been saved one time, one month to the day after my transplant when I was shocked. Now I have managed about six weeks and no further shocks. So far it seems that the problem was very low magnesium and potassium, but unsure of the reason why they were low both times. I now take supplements and so far so good. I won't have my first interrogation until 8/19, so I'll hope for the best at that time.

Mark

Hi my name is Judy. I'm 51 years old. I had 2 cardiac arrests 6-22-08 and a Virtuoso DR implanted on 7-25-08. Honestly, I am quite frustrated. My cardiologist can’t explain "why" they happened. The first heart cath showed 10% heart function and an aneurysm. One week later after 5 days in ICU, intubated (SP) and also on a heart pump the 2nd heart cath showed there was total heart function and no aneurysm. No heart damage, no evidence of having a heart attack (never any signs of blood clots) and totally unclogged arteries. The EPS also came back with no problems and that doctor felt that physical stress, not an electrical problem or any VT had brought on the arrests. (I asked my cardiologist if he believed in divine intervention and he does.) However, the cardiologist side of him believes that it probably was a VT that caused the arrests and that it could happen again since there was no evidence otherwise. He said that if it did happen again and I didn’t have the ICD I would only have a 2% chance of survival. He convinced me that it was good insurance to have it.

I am very depressed at times because I have this new addition to my body and don’t know if I agree that I really needed it. I feel like my life will never be the same and have many unanswered questions. I read the book that came with the devise, have spent countless hours searching the web and have asked my doctor many questions. But questions like, will I ever get the ability to take my left hand and touch my right shoulder ever come back? Will my strength in my left arm come back? I can hardly lie on my side when trying to sleep because my chest feels like it is being pulled out. Will I always feel like I have a rock on my chest or will it one day just feel like a part of me? On my temporary ID card the tag that has "St. Jude Medical" with a serial number, and the name Durata has a "Use before" date of 2011/06/30. Does this mean that it is going to expire in less than 3 years and I'll go through this implant again then? The doctor said that he would be checking my ICD every 4 months. Is this what is referred to as an interrogation? Does it hurt? I do know that he set it to pace a 55 and defib at 188.

I read in an earlier post from someone that this is a great forum because people don’t whine here. Well, I guess that’s exactly what I am doing. I have read several posts and understand so little.

I guess I’m looking for some reassurance from someone out there that maybe has had the same experience as I have.

So sorry that this has been so long and that I’ve whined so much! I’ll try and do better the next time! Thanks for anyone's input!

Judy

Hi Judy,

My experience may have been similar as far as they have no idea why it happened. I didn't have a heart attack, I had no blockage, and then they tell me that my heart is very healthy. Of course since i've gone into cardiac arrest twice now, I don't know that I would agree on the healthy heart, but that's what they say. Right now the belief is possible lack of Magnesium and Potassium, so I have been taking those supplements since my first and only shock on 6/7/2008. Not long to know if it's working for sure, but so far so good. Problem is what has caused the levels to be low? Nobody seems to know.

I thought possibly Kidney disease, but they say no. We just have to hope for the best and take it one day at a time I think.

Mark,

Thanks for the reply. I did see that your experience was similar to mine. I don't know if my Magnesium and Potassium levels were off but they took enough blood that if it was then I'm sure the doctor would have said something. Guess I can ask about it when they call the first of the week with my nuclear stress test results. The actual stress test on the treadmill went great and I expect the pictures will be fine too. It's a mystery to me. I guess with it being 2 weeks tomorrow that I had my surgery I'm still having difficulty wrapping my mind around everything. I can tell you that I am scared silly to experience a shock and only pray that it never comes! See, I was actually sent home without the ICD. Then 2 weeks after being home I had some chest tightness (could have been indigestion) but frightened I went to the emergency room. Once again it was not a heart attack but that was when my doctor said that he felt that I should get the ICD. If I had not gone back to the hospital I would not have it today...

I do believe that it was not my time to die like everyone else wasn't theirs either in this forum. I also believe in my heart God healed me from whatever happened. He must have a plan for all of us to still be here huh?

I wonder if there is anyone else like me here that wonders if it was the correct move to get the ICD, and do you wonder if you will someday have it removed? Or is this just something everyone wonders as they are accepting their new way of life??

Judy

Well Judy I was afraid of my first shock too, but knew I wouldn't be able to relax if I never got it and I did get it a month after implant. I know everyone describes the shock differently, but I gotta tell you it was much worse in my mind than the actual shock was. It's really so fast that you don't even have time to wonder if it hurt or was just uncomfortable, at least for me. I personally wouldn't describe it as pain at all, but kind of like someone kicking you in the chest maybe from the inside. Hopefully like you said, you won't ever get shocked, but it would likely save your life if need be.

Also with the Magnesium and Potassium, had they been out of whack you would have known it, becuase they woud have given them to you via IV, and I found that those particular medicines hurt when they are going thur the IV.

brief intro...

3 X bypass '05, ICD implanted later '05 as EF was 35% at the time - Yea, there is damage from the heart attacks, but I think it was because I failed my stress test, I couldn't keep up on treadmill. I stepped off when they ignored me for the third time. Fired them several months later... Fired a few more since then.

Curmudgeon, Bad patient, Customer, doing pretty darn good I think.

Best of luck and better health to all!

geppetto

[quote="Hawkeye49"]Hi,
I live to ride my motorcycle and that is one of the questions that I have, when can I ride again?

Hawkeye49,

Well I received my ICD 2 weeks ago. I had my nuclear stress test this past Friday and afterward I asked my doctor if I could ride (with my husband) yet. He said yes. I would ask your doctor to make sure. I rode yesterday and it was great to be out. I felt almost normal again! Hope you soon have your face to the wind!

Judy

My husband had 4x bypass surgery June 5 after suffering a SCA June 1st in a neighboring state.
We were told he was doing very well...until a few days ago.
Now they want to rush us into an ICD decision--they want to do the EP test and have us agree that they can go ahead and insert an ICD right then, without discussing the results with us.
His EF is 57% and as I said, he's doing great--we're runners, and he was walking 5Ks in July at under 45 minutes.
I am dealing with a host of emotions right now: anger at the doctors, confusion and despair.

Here is part of a letter I wrote to his cardiologist:

First he has the SCA. The Colorado doctors told him he shouldn’t leave there due to the significance of his artery blockage. You wouldn’t even let him be at home Wednesday night before his bypass surgery. He has the surgery June 5th which we are told went very well. From then on, begins recovery, following all doctors’ orders. He is told he is improving. He is urged by you and staff at Cardiac Rehab to keep up his exercise and continue to increase it. We diligently follow that advice and keep a log of all workouts. We believe all is well and make future plans.

Clearly, you had doubts. Had you had the decency to share them with us, we could have started reading about the situation and gotten more up to speed. Instead, we learn about this and have to take a crash course to try and educate ourselves to understand the nature of his problem and the options.

In addition, he is now told not to exert himself. He is feeling as if he is walking on eggshells. To have to suffer that kind of a head-spinning change in what your doctor is telling you – from “push yourself” one day to “be very very careful” and “hurry and up and make a [life changing] decision” the next—is unnecessary and more distressing than you can begin to imagine.

If it were my body, I would take my chances--his arteries are clear, he is 52 and the EF is normal.
(I'm a breast cancer survivor and elected to forego chemo after a double mastectomy, so I have made tough AMA medical decisions in the past.)
Can anyone help me out here? I just can't get with the medical program here.

Thanks, and I apologize for posting in such a state--generally I'm a very affable, friendly person and patient, too--been a Red Sox fan since '68!
grins,
A

Aamos, I understand completely what you're saying, but remember this. I'm 45, my EF is normal and I also have clear ateries, but I still managed to have SCD on May 7th without an ICD and another on June 7th with an ICD and am still here to talk about it. The body does strange things, so no matter how health or unhealthy we think we are, we can all be hit by surprises, and not all so good possibly.

Thanks, Mark. I appreciate your understanding, more than you might imagine. Could you talk a little about your adjustment to the ICD? Also, does it concern you that the companies that make these things don't have a very stellar record in terms of disclosing defects? If that feels as if I'm prying, consider the ??? off the table with my apologies.

-Amy, but I answer to Aamos, especially when running.

PS: Does anyone know why they call them "interrogations?" I hate that term!