New member

Hello, Pacemaker Club community. I am a new member. I decided to join because what I really am looking for is support and I suppose communicating with others who I can relate to.

In 2009, I was told that I had just survived what was believed to be viral myocarditis. It involves a virus attacking the heart. I was only 19 at the time and had just had a baby about three months before. I thought I had a bad case of the flu, but it turned out to be more. My sickness became worse and I had to be rushed to the emergency room one day where I nearly passed away more than once. Miraculously, I pulled through, but I later had a pacemaker implanted because my heart's function was pretty damaged.

Today, I do normal activities, but I find that I don't have that much energy as I used to. I think that this experience has affected me quite emotionally and mentally. Physically, obviously, but a lot of it is mental and emotional. I do not quite understand what happened to me or why it happened, but almost 4 years later I find that I still am having a difficult time accepting my condition. I also get scared and ashamed about having a pacemaker because I am young, but I know I shouldn't because it helps me.

Just wondering if anyone can relate to my experience or anyone who is young like me (I am turning 23) and how has having a pacemaker been like for them?

5 Comments

coping

by Tracey_E - 2013-03-06 08:03:44

First of all, know that what you are describing is not uncommon! It's a big blow to learn your heart is not the same as everyone else, and the emotional healing can take a long time, much longer than the physical, esp when you aren't feeling 100%.

I was born with my condition and got my first pm when I was in my 20's. I'm 46 now so I've had a lot of years to think about it and deal with it. I have been treated for clinical depression. It is a disease and does not go away on its own. Carrying around the stress and depression is exhausting. I got help and it was like a miracle how much better I felt. Now? I rarely give the pm a thought, and when I do I'm just grateful to have it. I know I would not have seen my 30th birthday without it. Instead, I'm blessed with kids and a full life.

Scared is normal. We can't let it rule our lives but the fear is always there to some extent. The challenge is to put a lid on it, don't let the pot boil over and suck the joy from life.

Pardon me for being blunt, but ashamed is irrational. You didn't ask for it, you didn't do anything wrong, why the shame?? Do you think a diabetic needs to hide the fact they use insulin, does it make them less of a person? My guess is you don't think that way, so why would you expect anyone to think that of you? If you see someone young who has fought cancer and won, I can't speak for you but I feel thrilled for them that they've conquered a challenge, imo a challenge way worse than my own. So have you, don't let the fact you fought a battle get you down. You are stronger than you think. We have a problem, we carry around a little computer that fixes it, end of story.

Unfortunately there aren't enough of us out there to have many support groups IRL. If you want to chat further, there are a lot of us here who have been there- my age, older than me, younger and closer to your age, teens still in high school- we run the gamut! Look into finding a counselor to talk to, tho, even if you only go a few times. It can really help put things in perspective and allow us to move on .

you are still you

by Hope - 2013-03-07 03:03:58

Hi! Sherg, You seem to be feeling stuck right now. I am a surprise survivor of a 2004 virus. Have had an ICD since then. We can't go back, but we are survivors. Are you ashamed or is actually fear of the unknown and being accepted? A device is NOT a sentence but a backup for living. You are young, a positive. Grab hold of LIFE and don't let go. Don't let fear or anyone define who you are. I wish you happiness. Hopeful Heart

Hi Sherg

by fishfighter - 2013-03-07 06:03:05

My heart failure came from the same thing as you. I'm a bit older, now 54, but the viro infection hit me about 3 years ago that damage my left LV real bad.

Before that, at my age, I was a very healthy person. Great blood pressure no blockage and wasn't on any meds. I was very active person even for my age.

For me, I was just getting to the prime of my life and job. Thinking of early retirement and making it happen. Once I got sick, my world was turn upside down. I had always planed for the future and all at once, that was taken away from me.

How I cope with it, well lets just say, I try my best. On my "good" days, I try to do as much as I can, knowing I will pay for it the next few days.

You have to lisen to your body and go from there. It is hard to live from day to day, but it is like walking, one step in front of the next, and so on.

If you have family, you need there support. You must talk to them about how you feel. This will help you cope from day to day. Also talk to your doctor about how you feel. There are meds they can put you on to help take the edge off every day.

Over all, you are still the same person you were before you got sick.

God bless,
Paul

Sherg

by scrappy12 - 2013-03-07 12:03:44

While I have not had a similar experience, I am close to you in age. I am 24 and got my pacemaker on January 31st of this year. Since then as I have tried to get back in the gym I have found it takes a little while to get my energy back to where it was. Our bodies adjust to how we are feeling especially if you had been feeling that way a while. I have found that every day I work out and push myself one more block or mile than the day before I feel so much better. To echo what Tracey said, you most definitely should not feel ashamed of having a pacemaker. There have been a lot of posts from younger people who feel that it is "an old person thing" however that could not be further from the truth. That little piece of equipment is what keeps you around for your child! Celebrate that fact. Things will get better! If you need anything feel free to message me.

sherg

by jillee - 2013-03-09 08:03:22

Hi Sherg let me tell you something i am 50, but i was 9 years old when they gave me my first pacemaker, i was born with a congenital heart block, my doctors said it could go either way you could grow out of it, or you can get a virus to really bring the true symptoms on, at 8 i got the flu and all i did after i got rid of the flu was pass out, become dizzy for many years. when i would get a cold or fever i would pass out a lot, i never felt really good, but in the 60's they didnt come up with a real answer for me, till i was 9 and they let me try a pacemaker to see if it would work in my body and i am so glad it did, like i said i am 50 now, but still till this day it is very emotional for me when i have to get it changed, i used to be so embarrassed to tell anyone, and always made sure my scar was covered, it was draining, i am finally able to say i have a pacemaker, like asking for a glass of water, it took a lot of therapy, and i am still going, i feel good, i accept it, but the therapy always helps, it is a very emotional and draing on the body till you get used to all the new feelings you may have and a lot of questions. I really believe we all understand that anything that has to do with heart, is very scary, and i am dependent on it for life. I felt everything you felt ashamed scared, especially when i was a child of 9, i felt a lot better emotionally once i decided this is your life you have to accepted what you have, and feel lucky you had something to save your life, i wouldnt be here without it, you will slowly feel better even if it takes a few years to be able to say the word pacemaker to someone, last advice it really helps to find a therapist to talk to about these issues i mean it, you need to have someone to let your feeling and emotions out, feel proud and happy you are alive, message me anytime, i hope it helps a little! Jillee

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