Whether I need a pacemaker or not

Hello all

i am a 15 year old boy , i live in chennai india ,

when i was 2 years old i was found that i had tacecardia and it was serious , my heart rate used to be 240 bpm .

i came to chennai for treatment from Dubai , the doctors told to abliate

i underwent abliation but at that time they said the actual signal producing node also got damaged and my heart rate was too low . so they fixed with a pacemaker , in the year 2004 .

then in 2013 i had to change my battery and i got an upgradation to dual chamber .

then in 2017 jan month i suddenly started to have a paplpatation in my pacemaker area and i felt it serious .

the intorogation was not ok .

the doctor said one of my leads were not working so we need to put another lead

and again i went on that .

so tottaly i had 4 leads .

but, after that my wound in the site was not healing

i went through exploration in ot .

in the year 2017 i went to OT 12 time for site exploration

in mid 2017 june the surgeon said that it is infection and i went through a open heart surgery .

but even after that wound did not heal .

and after OHS i did not have a pacemaker .

and yes, I used to, I am facing a lot of probs with this low heart rate .

my heart rate goes max 58 or 57 not more than that , so when i climb steps i get coughs and get exausted very soon .

echo was normal as per doctor said .

My LVEF got improved to 70 % in last months echo .

but, today i got a call from my juniour doctor, who is a very caring and lovely person, he said that we doctors have decided to fix a pacemaker on you again , he asked me how do u feel , it is u who shud tell whether you need a pacemaker or not , it is based on ur symptoms , then  i asked him why is my heart rate not increasing , he told it was due to COMPLETE HEART BLOCK and ur atriums and not working with a sync which was there from starting , then i asked him whether i can stay like for a longer period with CHB and no pacemaker , he replied , no at any point of time u will have to fix a pacemaker , but after some time u may tend to show symptoms of heart faliur or ur pulmonary pressure will increase with is already present from the start , i got worried , but seniour docs are not saying that it is cumpulsory to fix a PM , as of last visit , he says the seniurs has told to fix , so when r u coming for a checkup .

last visit my cardiologist told me that they wanted to do a treadmill test , but nothing was told after that , i was not called and said later .

my questions are .

- can i live for a long time with COMPLETE HEART BLOCK and no PM ?

- will i face any issues in my later stages ?

- r there any complications of staying like this with CHB and NO PM

- do i need a pacemaker ASAP ?

- now after one year of no PM will fixing a PM work . because i remember my doc saying this to himself while talking to us and when i asked he said nothing

at present my symptoms are

coughs and gudiness while climbing steps

gudiness while sitting simply too ONLY IN A WHILE

inner slow palpations afer a stress job like climbing steps . it is like my heart is punching me

pls give me suggestions

myself and my parents are worried

and i am in class 10 CBSE

pls suggest....

regards


4 Comments

Need for a pacemaker.

by Selwyn - 2018-08-11 13:49:11

Hi, Ash02, welcome to the club.

Yes you do need a pacemaker. Complete heart block carries a high risk of sudden death due to the heart stopping ( see  https://www.ncbi.nlm.nih.gov/pubmed/1015354)   There is no warning!  Get a PM asap. Forget about any other risk, you need a pacemaker. I was lucky to get mine within 2 days of a diagnosis. 

The indications for pacing are quite clear cut. You could look up NICE guidelines ( NICE is the British National Institute for Clinical Excellence) with regards to this, however it is as I say above. 

As you have symptoms associated with exercise, a rate response pacemaker ( that is one that increases your heart rate with exercise/movement)  will give you the best  quality of life for your condition. 

There are many in this club that have had numerous pacemakers since there were small children and are now adults.  You get plenty of warning with regular check ups when you need new batteries.  I swim a mile regularly. People are always suprised that the pacemaker makes no difference to the swimming. I hear that they are just starting, like electric cars, to manufacture battery powered speed boats.  I have been a step ahead of that for years!

Kind regards,

Selwyn 

Wow, you have been through a lot

by LondonAndy - 2018-08-12 00:18:46

So I can understand your reluctance to go through yet more surgery. But it really does seem a pacemaker is the right solution. You are already suffering, restricted in what you can do, and running a risk of a dangerous event  A pacemaker will help you back to a more normal life . 

Infection can come from the operation if they do not take every precaution, but also afterwards if hygiene is not 100%, so do your bit as well: do not share your towel for at least the six weeks of healing, and have a fresh towel every 2 to 3 days. Don't touch the wound, or let friends and family touch It. Good luck!

will it be a danger

by Strange - 2018-08-12 05:13:14

hi all .

will it become a danger to my life .

i remember my doctor saying 6 months ago that dont worry ur heart wont stop all of a sudden .

and i am now without PM for a year and half

so will my life be in danger ?

Hi Ash02

by Macabr - 2018-08-12 23:01:24

You don't want to chance it.  Having to change pacemaker is a pain but you are better off with it.  I barely notice I have one most of the time.  Be well.

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