My Story ...living with a Pacer for nearly 54 years.

• by denise.theobald
• 2018-10-08 03:13:01
• Coping
• 1189 views
• 2 comments

Hello There,

After posting up a message a few days back I thought I would post up a bit of my story and hopefully I hope it can help some of you.

I was born in 1956 by caesarin to a mum who was 43 years old.  She had many complications getting pregnant and finally fell while going in to menopause.  Doctors had picked up on my heart condition while listening to my heartbeat with one of those little horn things they used years ago.

In my mothers words I was the talk of the hospital arriving in at 6lb 12oz ( a reasonable weight) and a pulse rate of 40 beats per minute.  I was put into a intensive baby care unit for 5 days until doctors tried to work out what was my problem.  

Mum was asked if she ever had rheumatic fever as a child and the usual family history questions but my Mum from her best knowledge had never had any heart problems nor anyone in her family. 

She was told  I had congenitial heart block and possibly a VSD.  They also told her I would not be able to live a normal life and could possibly die of heart failure before the age of 10. (keep in mind this was 1956)

Anyhow, I will try to cut this as short as possible.  I coped reasonably well up to the age of 8 years of age.  Although I remember being fatigued often and not able to keep up with other children, I think I felt like any other kid of 8 until 12th June 1965.  

While waving my mother goodbye when she went to work I suffered what we know now a Stokes Adams Attack.  I was unconcscious in the childrens hospital for 10 hours.  I remember waking up in an oxygen tent with this horrible ticking machine beside my bed (early ECG) and a dozen medical staff around me.  I was kept in hospital for 3 months with doctors wondering how they could help me.  While in there I suffered 2 more attacks with one of them almost killing me.  With no clue how to treat this because of my age,  I was sent  home on tablets for my heart rhythm when a wonderful surgeon had just came back from the America training and decided to try me on a pacemaker.  It was put in my abdomen and it looked like one massive box sticking out...but I was alive and feeling so much better.  

Then followed many years of leads breaking, batteries failing (sometimes 3 times in a year) and me not behaving myself because I just wanted to be a kid and do everything any other child did.

It really wasnt until I was around 14 of 15 that things started to improve with the battery life and the life of the leads and how the surgery was perfected. 

In my teens I hated having it! It was a girl thing.  I was embarrassed to get changed in the sport room with other girls because of my scars and this ugly box sticking out below my shoulder.  But as I mentioned, this changed as I got older and with the surgery today I can't even see my pacer as it sits below my right breast. Over the years I got over the hatred thing with the scars. You can imagine how many with so many frequent pacer replacements.   I was alive.  My final diagnoses today is 3rd degree heart block. I am fully paced and I have no VSD as earlier thought. 

Today, I turned 62 and I've had a pacemaker nearly 54 years...

I think myself so blessed and SO lucky  to have this miracle little device which has truly made me lead a fairly normal life.  I married a remarkable, understanding man, had 4 amazing children and life is good. I still work full time as a Teacher's assistant and keep very active.  

I also want to tell you, all my children were born with healthy hearts.  However, in 2006 my eldest granddaughter was diagnosed with near the same condition.  Unlike her grandmother, her heart block was not detected until she was 3. This came as a huge shock to us all.  She had a very serious influenza which doctors believe could have triggered the already weak heart.  She recieved her first pacemaker at the age of 6.  Let me tell you, she is doing remarkably. She is now 14...a very beautiful girl who leads a normal life.  She plays light sport, is a wonderful artist and is doing wonderfully at high school.   Her doctors are not convinced its hereditary, but I believe its too much of a coincodence not to be.  

Our other 3 grandchildren are fine.  Infact we are expecting a new bub in December.  

I could go on and on about some of my experiences over the years but I feel I may have may have bored some of you with my rambling.

Good luck to all with pacers...I wish you all well.

Remember, its a truly miracle device.