15 Pacers over 40 years

Hello my name is Mary-Lynn I was born in 1963 with Complete Heart Block my heart rate was 30 BPM at birth. My parents were told I would not survive 3 days. In 2009 I had my 15th pacer upgrade/replacement. Now I actually have defibrillator/ pacer, I am the oldest of 3 children with identical condition born into our family. My first pacemaker was implanted at University of Chicago Wyler's Children's Hospital in 1973- it was a very big deal! I have had a very interesting life, including wire breaks, recalls, electric shock during surgery while awake, and blood clots in my heart chamber. I would change absolutely Nothing about my journey!
If anyone who reads this needs any insights on life with a pacemaker, defibrillator, experiences as a hospitalized child, giving birth as life long heart patient, I feel I could possibly be helpful- I would be more than happy to be helpful!

11 Comments

welcome!

by Tracey_E - 2013-07-22 10:07:52

So very glad to meet you! Wow, what a great story, you are truly a miracle. I was born in 1966 with the same thing, but my hr was in the low 40's so I got by without the pm until I was an adult. Gotta love technology :o)

Does your mom have Lupus? Wondering how 3 siblings got the same thing. How are your siblings doing?

Mary-Lynn

by jeanlancour - 2013-07-22 11:07:30

What wondweful spirit you have, thank you for sharing. And thank you for the offer to help anyone that needs it.I'm sure there are any number of us could use your experince. Ther are so many younger people that come on here with queations, Tracey is all giving, and she like you has a wealth of experince, both of you sharing is super for this forum. Thank you both from an old lady with no experince. Jean-----with pacemakers that is.

Yes Mom has Lupus

by mls1963 - 2013-07-22 11:07:34

THANKS-When I was born, we did not know my mom had Lupus. It was such an unknown connection at the time, they told my parents I would die and they would never have another child with this "Heart Block" well 3 out of 5 of us had identical problem. It wasn't until my youngest brother was 10 until my mom was diagnosed and all connections to our completely rare family situation were made! So did you have to avoid swings roller coasters all that as a child?

Im Excited!

by mls1963 - 2013-07-23 01:07:29

Thanks Jean, I've gone through this site and responded to over half a dozen posts already! I'm holding back I don't want to be a know it all or something, but my Dr.s at University of Chicago say I'm medical Urban Legend LOL! One of a very small circle of first children to have PM implanted, my first surgery was hours long, sewn on leads to outside of heart and leads going down and connected to 1lbs of metal in my abdomin. Went from IN of 25 to 72 in a day, grew 6" in 3 mos. My brother also got his it was 1973 so the kids at our school called us the Bionic women and Million dollar man we were even featured on tv news. NOW getting a PM is like an oil change ( to the Dr.) I don't think however easy it is for the Doctors. It is our body, our side-effects & adjustments, our fear, our questions that matter-we are own best advocates and with a club like I can see already how impractical we can be!

Amazing Mary-Lynn

by Duke999 - 2013-07-23 01:07:31

Wow! You are quite something. Thanks for being part of this site as I am a fairly new member myself (since March this year when I had my first PM). I just want to applaud you for your incredible journey. I have many things to learn from you. It's nice knowing you and welcome !

Welcome, Mary-Lynn

by Hope - 2013-07-23 03:07:45

Hi! You have been through so much, and your strength comes shining through. Your experience and desire to help others is inspiring and will encourage others. Membe rs are here anytime for you, also. Take care. Hopeful Heart

Hi!

by Shell - 2013-07-23 07:07:25

I was born with the condition in 1971 but didn't get a pm until I was in my 30's. (after I had sons) My mom also has lupus but they didn't figure that out until I was 10 and it was a few years later they connected my heart block to it. (I now joke with her that it's all her fault) I had no restrictions as a child, when on all rides. (then I liked roller coasters) I was a cheerleader in high school, had 2 kids. I do remember in biology class we were doing some thing and the teacher said if your heart rate is below 50 you shouldn't be here. Mine was in the 40's.
Glad that your so positive with everything.

childhood

by Tracey_E - 2013-07-23 08:07:03

They watched my rate to make sure it didn't get lower, and didn't allow me to do anything that would get the hr up (since it didn't go up anyway). That meant no sports, being the scorekeeper in gym class, no crazy rides at the parks. I've been a bit of a kid in a candy store since I got fixed.

Another '63 baby

by ohiolaura - 2013-07-23 08:07:16

I too was born in 63,and am I guess happy to say I am 50? Well, I am,that means Im here.
I was born outside of Cleveland,Ohio,and days after birth it was found I had a hole in the wall of my heart.
2 years later,my brother showed up,with a different heart problem,a valve that didn't close before birth.
Dr's said after my issue,it was so unlikely another would be born with a problem,my parents wanted another child(after me,why would you want another? Just kidding!).
So,when I was 4,and my bro was 2,we had surgery at same place and pretty much same time,in Cleveland.
Risky in '67 on kids,but done.I had Teflon put into the hole,since then,pretty much normal life,few bumps along the way,but no restrictions or meds.Got married,have 2 wonderful 20 something girls.Great life.
Last June,out of the blue,WHAM! Problem,and withing 3 weeks top from first odd feeling,I have a pacer,never imagined that one.
EP said he thought maybe in '67 the Dr (who saved my life) may have nicked my wiring,and therefore put in the steps for 2nd degree HB.
Well, like you,nothing I could have done to see this coming,or avoid it.
Sadly its nice to know were not alone,nice though we have each other to talk to,and learn about and from.
Sounds like we all are the lucky ones!
Cheers to us all!!
Too bad we cant have a big party to celebrate!
Laura

welcome Mary-Lynn

by lubro - 2013-07-23 10:07:07

WOW... what an amazing story. one of the amazing things about this forum, for me anyway, is discovering that my problems are miniscule in comparison to so many others here. You have endured soo much in your lifetime, and you still have such a positive, robust attitude about life. Kudos to you for remaining so positive and for taking time to share your story with all of us.
take care, and stay happy :)

Lubro

I couldn't sleep...

by mls1963 - 2013-07-23 12:07:41

I cannot believe it's taken 40 years for me to share like this! I couldn't sleep last night, I just kept thinking of all the little things I've been through, but as many of you have said- we are not alone, we can help each other! With 2 brothers with identical issues we had each other to talk to. Although my youngest brother died at 32 from sudden death! Well kind of sudden death, he was resuscitated into coma. This is what finally allowed our insurance to approve defibrillator in my other brother and myself! For years prior to that our Dr.s were trying to get us defibs, but it was only when there was a sudden death of our brother did they agree. We are forever grateful to Kurt saving our lives. Unfortunately he had to loose his life for this to happen. BIG Lesson that also came out of this was that after 7 days of brain death status our family with Kurt's wife decided to "pull the plug" (This was Florida 2002- Kurt was on vacation with his wife 4 year old daughter & 3 month old son in Naples) The horrifying reality of this was that once that decision was made, of course we expected our brother to die... But, they did not turn off PM, when we realized this my father asked the Doctor why his heart was still beating, they said my brother had never specifically requested the discontinuation of PM in his living will- We were truly confused and horrified, it took 3 more days and a legal order to actually give my brother peace!
PLEASE make sure you have a living will and that is actually states Discontinue Pacemaker- as we all know our pacemakers are our "Life Support" we just assumed as I'm sure my brother did- that Disconnect "Life Support" means our pacemakers as well! But legally even today it is best to include that PM in your living will!...

Always a rainbow- Kurt's heart was donated to University of Chicago as he requested in Living Will, and has been used for many studies and is reason they have been able to discover several DNA markers for Dilated Cardiomyopathy- eventually all of our hearts will be together again, it's such important work, and the doctors are so grateful for these organ donations for science(I suppose none of us on this site has a heart on the top of the list for live organ donation LOL!) But the good we can do with our hearts in hospitals all over the world, all of us with these not so perfect battery operated hearts, should at least consider how we feel about donation, and get it put on paper!!! So others know, in the medical world our imperfect hearts are "Absolutely Perfect" for helping the medical community help others long after we are gone. No wonder I couldn't sleep, I guess I had a lot on my mind! :)

You know you're wired when...

You run like the bionic woman.

Member Quotes

Yesterday was my first day mountain biking after my implant. I wiped out several times and everything is fine. There are sports after pacemakers!