A bit more to tell you.

Following on from my post 1965/2023 which I posted a few days back now.  
I explained that I've had a pacemaker from the age of 8.  Nearly 67 now😱  

What I also want to let you know, my granddaughter Moneè also has a pacemaker. Unlike myself, Moneè did not present at birth with heart block. But at the age of 3 she was rushed to hospital with influenza A. To the shock of the doctor examining her Moneè's pulse was only 40 beats per minute.  After a few days in hospital she was released as her heart rate went back to 70.  
However, after being monitored for a few months she finally received her first pacer. She was eventually went into 2nd degree heartblock. 

Monèe is now 19 and last week received her 3rd pacer.  Just like her Nan, she leads a completely normal life.  She played school sport and also played netball.  She works full time and never lets her pacer hold her back from doing anything.....just like me!   

I was told when I was young that my condition (3rd degree block)  was NOT hereditary. 
All my 4 children have no heart problems. So you could imagine how shocked I was when Moneè was diagnosed at 3. At first doctors thought it may not be hereditary. But now her cardiologist and paediatrician agree it is.   Her siblings have no heart defects.  All my other grandchildren and I have 11 have all had their hearts checked and are fine. 

I hope my post helps all the parents out there with children being paced.  
We are so, so fortunate to have this amazing device to save our lives.

 

Stay well and strong. 
 

 

4 Comments

Interesting

by Penguin - 2023-08-23 07:11:15

Thank you for your post Denise. Your grand daughter sounds inspiring.  That's a post to share with other young people / parents and incredibly helpful.  

I'm sure that it's helped your grandaughter to have a nan who can support and reassure her about her pacemaker too.  How did her parents (your own children) react? Hereditary conditions raise all kinds of issues within families.  Did they any of you receive any counselling or was it too late by the time that the hereditary aspect was discovered?  It's interesting that all of the other grand children haven't inherited the condition.  How did they determine that it was hereditary and does the condition have a name? 

 

 

19 devices

by piglet22 - 2023-08-23 07:16:46

You need a medal.

Makes the rest of us seem very ordinary.

Good luck.

Hereditary

by AgentX86 - 2023-08-23 11:09:14

I'm guessing that this sort of thing accounts for a significant number of SIDS cases.  Your granddaughter was lucky she had the flu, though this can cause heart block, too.  It's normally Mobitz-1 (second degree type 1) and clears when the illness does.  It could be a combination, resulting in Mobitx-2 (sedonc degree type-2. Mobitz-1 generally doesn't progress any further and isn't a cause for a pacemaker, where Mobitz-2 does indicate a pacemaker because it will become a third degree eventually.

Of course we know a lot more about hereditary conditions now, which likely accounts for the difference in the doctors information.

My granddaughter had "transposition of great arteries-cyanotic" at birth, so had heart surgery at two days. It should have been caught in utero but the OB missed it.  She was transported to Boston Children's Hospital immediately, where the surgery was done.  Even though she should have died, she's "normal" now. The only issue is that he has ADHD which is correlated with congenital heart defects.

Leads

by Cam - 2023-09-08 14:09:27

God Bless you Denise and your grand daughter Moneè..that you are both living healthy normal lives.

I have a question, have you or your grand daughter had a lead extraction.

I am also living a full life with a pacemaker for the last 38 years and now they are suggesting a lead extraction.  I am kind of worried about this procedure due to scar tissue buildup.  I have 2 years left on my pulse generator so I am gathering as much information that I can.  Thank you for any input you may have.

Regards

Cam

You know you're wired when...

You have a dymo-powered bike.

Member Quotes

Try to concentrate on how you’re able to be active again and feel normal, rather than on having a machine stuck in your body.