Inherited heart problems
- by Malya
- 2023-01-28 15:58:10
- Conditions, Meds & Tests
- 299 views
- 7 comments
Hello everyone and hope you are all as well as can be.
This is my second post. I received a pacemaker in November 2022 and had a complicated recovery because of pacemaker site issues such as haematomas and a related skin tear to the original incision. Have to say follow ups have been very positive in terms of resolving those early problems, and all this in the U.K!
My cardiac consultant has even said he will resite my pacemaker if I’m still unhappy with its position. One side does stick out a lot and the skin has healed over, although wafer thin. I’m most worried if it gets a knock or too much pressure. So, for example, I’m very careful about giving my little two year old grandson ‘big hugs’ ( always used to before pacemaker op) and do miss them and with all other family members. However, not sure if I could go through the same procedure just yet.
Haven’t forgotten the original operation though which I described in my first post and which was awful.
Positive news now. I’ve started running again and all seems OK. Bit slow but not an effort. Most positive is that my breathing is fantastic, despite severe asthma controlled with monoclonal antibody omalizumab.
I can’t believe how much of a difference my pacemaker has made in terms of no more lightheadedness, fainting, low heart beat, - resting pulse is now 60bpm instead of around 38bpm during the day- and not feeling so incredibly tired and weak.
And, I’m still getting my head around all the technical stuff posted by all you well informed and intelligent people which I’ve been avidly reading on this wonderful site.
So, my big question is, can certain heart conditions be inherited? I’ve been told I have a ‘sick sinus’ and questioned my cardiologist about a familial link. He was very vague. (Pobably thought he’d answered enough questions).
( For information; my Mother literally dropped dead when aged 80. She had no ‘underlying health conditions’- no impaired mobility, no cancer, no nothing and did not believe in doctors which meant she never visited one during her adult life. My brother and I were born at home with a midwife in attendance.)
There had to be a post mortem which showed she had problems with her heart but no mention of sick sinus syndrome.
My questions are:
Can an electrical problem be inherited?
Could my children and grandchildren have inherited my problem?
Thank you so much for reading my post.
Sick Sinus Syndrome and Bradycardia
by Gemita - 2023-01-29 02:44:15
Malya, Thank you for your kind words. We all try to help each other in whatever way we can.
I see you are in the UK like me. Although I note you have had problems with your implant procedure, I am glad your care has been a positive experience generally. You sound as though you are getting back to normal activities and that is good to hear.
Bradycardia causes? A genetic link? You ask an interesting question and I find myself asking why do you want to know? Is it because you are still looking for a reason for your electrical disturbances, like so many of us, or are you mainly concerned about your children suffering from this condition in the future?
The simple answer is I really don’t know what caused my sudden electrical disturbances. I have Sick Sinus Syndrome (tachycardia and bradycardia syndrome) and bundle branch conduction blocks and although I have had numerous tests carried out looking for a single cause, my doctors often found none. Electrical disturbances by their very nature can be unreliable and may not always be present, occurring sometimes only intermittently which can be baffling. My autonomic nervous system is clearly at play here too and triggers some of my electrical disturbances, so a really complex picture.
It seems that a number of genes are involved in inherited bradycardias and I attach a link in case this is of interest. You will need to copy and paste the link into your main browser to open it.
What to do about your theory that you may have a genetic basis for your disease? Genetic testing? Here in the UK I believe we qualify for genetic testing free on the NHS if referred for it by a hospital specialist. You will generally only be referred for testing if you have a suspected genetic health condition or if you have a particular type of cancer, but if you are really concerned for the well being of your family, then you could always ask your doctors if, for peace of mind, you could be referred for genetic testing and see what they say? Alternatively, you can ask for a private referral.
However, there are a large number of patients suffering from bradyarrhythmia, the causes of which remain unknown. Sometimes it can be exhausting to continue to search for a cause or to worry that you may have inherited a condition that you can pass on to your family. I accept though that many of us do this (me included at times) and will continue to do this until we receive satisfactory answers.
My advice in the meantime is to live the best life you possibly can while you still have it and to sometimes forget about your difficulties, since worry and stress can be so harmful. Whatever caused your bradycardia, the condition is now being treated effectively with your pacemaker, so you can get on and live your life without fear. I hope it will be a long and very happy life for you and your family.
by Good Dog - 2023-01-29 09:16:00
As Gemita indicated, I think that we all would like to understand more about our genetic links. Certainly it would be great if we could anticipate or more importantly; avoid passing along defects to the next generation. My grandfather was a very early pacemaker patient back in the early 60's and recevied his pacemaker from the Cleveland Clinic. He suffered with bradycardia/complete heart block in the 1950's and often when we visited him he would be sick in bed. It was a relief when he was finally able to get his PM. My Dad and other family members would take him for a battery change about once a year.
I was born with a heart problem where I would occasionally pass-out as a child. However, the problem went undiagnosed through my childhood. I was eventually diagnosed in my 20's with a 1st degree AV Block/bradycardia. It progressed to a complete heart block and I received my pacemaker two weeks after turning 38. So my first thought, OMG this was inherited. I lived in NJ at the time and about 6 weeks earlier had a tick bite that left me with the exact symptoms of Lyme Disease that some Docs attributed to my heart block. Some Docs said, we just don't know.
Here is the thing: my suspicions based upon my grandfather having the same condition were strong. Thing is, that when I thought about it; he had 12 children (my aunts and uncles) and they had lots of children (my cousins). It was a huge italian family. So you can imagine how many family members we have in total. I never counted, but it is a lot! I also have one child and 2 grandchildren that are healthy. So here is the bottom-line: I am the only family member in the four generations following my grandfather to develop the same condition as him. So as others here have indicated, we don't know for sure if there is a link, but it sure looks doubtful. I always try to find the cause and effect in suspicious stuff like this. In this case, my case, I could not.
So I think it is best that you just live and enjoy your life without worrying about something you cannot control. Based on my experience, it is doubtful you have anything at all to worry about. I apologize for the length of this post, but I wanted to try to give you a full picture.
I wish you the very best!
by Lavender - 2023-01-29 10:44:45
My grandmother died of sudden cardiac arrest. My brother had a pacemaker and died of heart disease at age 60. My other five siblings have had no heart disease.
My first son was born with congenital heart disease and died before turning three. My cardiologist said he may have inherited his heart issues from me. I'm glad I didn't know that at the time, because I went on to have two more healthy sons.
We may never know the root of our heart disease. We can't live in fear.
Age is the known factor
by Gotrhythm - 2023-01-31 14:54:24
Many, maybe most of us here have wondered about the familial origins of electrical issues. Your doctor wasn't dodging your questions. The simple answer is no. Sick sinus is considered idiopathic, in other words having no known cause.
The more complete answer is maybe, maybe not, and possibly (in a way.) While no specific cause has been identified, the largest risk factor for sick sinus syndrome isn't diet, or lifestyle, or family history. It's age. While it can happen at any age, the average age for getting a pacemaker is 68.
As our understanding of genetics increases, I'm sure we will come to understand more and more the role our genes play in how we age. Maybe we'll find out that in some families there is a tendency to develop arrythmias wth age. Right now, the data isn't there. All we can say is statistically, the older you get, the more likely you are to have sick sinus.
by Old male - 2023-01-31 21:57:58
Long ago, I once asked my Cardiologist what can be done to prevent heart issues. His response was "if we could choose our parents". Guess he was right as both of mine had bypass surgery before I and a brother had same.
Thank you for your support and feedback
by Malya - 2023-02-03 16:33:13
Than you for the link. I agree with what you say.
Thank you for your comprehensive support, kind words and link. I'm not frightened about anything although probably am, an Angry Bird. Why me? Heck, why not me. Hmmm.
You've done so much research and have the family history as well. Thank you for replying and sharing your knowledge. You give me confidence!
Like you our firstborn didn't live long, but we were so young, naive and full of hope. Our subsequent three, now grown up children and now parents themselves, are equally gungho about everything. I think why I worry about what might or might not have been inherited is because I'm getting older and have more experience of life.
I love the word idiopathic. Covers a multitude of sins. But seriously, I truly hope it is all about the randomness of what happens in life and the ageing process.
Old male- you can't be that old with a 'name' like that!
Nature/nurture? Chicken or egg?
Still not sure. But just going to keep putting one foot in front of the other.
You know you're wired when...
You participate in the Pacer Olympics.
Stay positive and remember that your device is your new best friend.
by Tracey_E - 2023-01-28 17:42:57
While some conditions are genetic, most of us born with electrical problems are just random and nothing we can pass on. You can read up on it here