I’m lost. I had bypass surgery in January at 34 yrs old, healthy BMI, exercise, non-smoker. Originally they thought that my stenosis was caused by a nasty virus that I had when I was 19 but now it’s looking more and more likely that it is actually a type of arteriosclerosis.
When I thought it was damage caused from a one off infection it was much more comforting because it didn’t raise any lifestyle questions and it was much less likely to be degenerative, causing potential issues in the future. A single simple fix. Now, it’s less likely to be the case.
Before this all got diagnosed we had just got married and were planning on starting a family but obviously this has been put on hold. My biggest fear is that I go ahead with having kids and then have a heart attack in my 50s leaving my husband alone raising them.
I know that no one can say for sure that this will/won’t happen but I’m lost. I spoke to my cardiologist yesterday and he said that my condition shouldn’t be a reason to not have children but I’m so torn and worried about it. When I get given the all clear do I go for it? Is it selfish?
For the future, surely lifestyle factors only protect you so much and they haven’t protected me so far… :’( My cardiologist say that bypasses can work for 30-40 years but being so young it only just gets me to retirement, if I’m lucky.
Advise welcome, be kind…
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MarmiteB
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Such a tough decision and still so young!I've read your post 3 or 4 times, you come across as depressed, understandably. It's impossible to be positive under such circumstances but you've asked for advice, here we go then.
First, if you don't start now, what age do you think will still be acceptable to start? My one regret in life is not having children, always things to do, places to go. Then too late.
So, you're worried you "might" have a heart attack, but you might not, and procedures are getting better all the time, new ideas etc.
You're worried you might leave hubby looking after a young family?
Even you are talking about something that might happen in 20 years time, and would you rather leave hubby with a little piece of you if that were to happen?
I'm usually a very positive person, I'd have given this a lot of thought but decided yes, now is a good time.
I expect others to see it in a completely different light, but that's what makes us who we are. Good luck 👍
I understand your concerns, but in truth, no one knows what's gonna happen tomorrow, next week, next year or in the next few decades.
Another way of looking at it is like this:
I remember the worlds first heart transplant - it was a miracle of science and medical advancement. It was front page news and we were all amazed at how this had been achieved.
Just under 2 years ago I underwent a CABG x3 and a replacement of my Aorta with some repairs to my LV. There were no TV reporters, nothing in any of the newspapers - in fact, the only people who were interested were those performing the surgery & looking after me post op, friends and family.
I have been discharged from the surgical hospital and left to get on with my life.
It is a serious operation - but what is most amazing is how 'routine' they make it look.
And that's now.
What will be available in 20 years time? It will only get better - less intrusive & even more reliable - as if it is not reliable enough already.
Obviously, the choice is yours, but as the saying often goes:
You could get knocked over & killed crossing the road tomorrow.
Discussing lifestyle versus genetic causes is a difficult one. But as far as heart disease is concerned, in almost every case genetic and lifestyle factors overlap. What I mean is that even if you have a genetic disposition towards heart disease you can still mitigate the likelihood or severity with life style changes. However, the life style changes required can in some circumstances be relatively drastic.
For example, about 17% of the population carry the APO E3 gene, this gene gives you a significantly increased risk of heart disease and alzheimers, but by adopting a zero alcohol and virtually vegitarian diet you can manage your risk back down to the same level as the general population.
The view of the chief medical advisor to the BHF (who sponsor this forum) is that routine gene testing will be the next great frontier in the fight against heart disease. Unfortunately at the moment the NHS will only conduct DNA tests for heart related issues if they suspect you have familial hypercholesterolemia (which will require specialist medication as well as life style changes). But you could choose to have a private DNA test conducted, these normally test for about 50 heart related genes and cost around £500.
The results aren't exhaustive, in other words even after gene testing there still may not be a clear, causal explanation for your heart disease (for example some people have traced their heart disease back to relatively obscure causes such as gum disease or sleep apnea). But at the moment you're stuck, and feel unable to move on with your life. If I found myself in a similar situation I'd leave no stone unturned in an effort to work with health professionals in order to construct a working hypothesis that pointed towards a better life style/medication package, allowing me to live my life with confidence.
One final point. You're right that bypass surgery won't cure our underlying heart disease, and bypass benefits are not permanent. However, medical science keeps progressing every day. So it's still perfectly reasonable to expect materially better treatments to emerge over the next few decades.
Personally I think you have plenty of reasons for optimism.
Good luck!
If your biggest single concern is that if you have children you might have a fatal heart attack at some time in the future and the outcome of that could be your husband may then have to look after them, then you need to discuss that with your husband and find out what he wants to do. He might be prepared to accept that risk, rather than be denied the opportunity to become a father. It's almost his decision. But you both need to consider how any as yet unborn children might feel if they lose you, their mother, perhaps early in their lives. Nonetheless life is full of risk, and we can never truly predict what is going to happen to us long term, so you can only assume that things are going to work out for the best outcome in situations like this, or else you start to get dragged down with it all.
You have had some really insightful and thoughtful comments from the other forum members.
I have one other suggestion for you.
Ask for you and your husband to be referred for prepreganacy counselling to discuss all your concerns about your future.
Here is an example of such a service. Many larger hospitals will provide this special support that you need at the moment to help you both decide what's is best for you.
When I read your post it made me feel so emotional
Now you have been told by those that know that they see no reason why you should not have any Children so with that said I would say you are not been selfish if you decide to have a family
You could live till you were 100 and regret not having a family who knows ?
If they had said it would not be a good idea to have a family and you still did then yes that could be seen as possibly been selfish
Healthy people with nothing wrong have Children and then something happens like illness at least you know you have a health problem and how to look after yourself so you can live a long and happy life in a way this gives you an advantage
If those professionals are saying yes and that is what you want then go for it and enjoy life as that is what it is all about x
Hi MarmiteB, live for now and let the future take care of itself.A former colleague (I’m now retired) had a liver transplant at 21. She met someone, they married, they have two boys who are now 12 and 10. The boys were both premature, she was very ill but they all survived! They set out to create great lives and great memories as a family as none of us know how long we have but can all grab life by the horns and make the most of now.
You can never live life regretting every decision made - life (and ongoing research) change daily. If we all did nothing to due to our unfortunate / hereditory conditions ... what would there be. Please for your own sanity (and happeness) and your families ralk to each other discuss whats right for you both - who knows what the future holds in terms of research - one thing I do know is you have to for the here and now ....if you dont you may regret things more than you will ever know. Family is a huge part of a happy life - dont rule it it fully - take time to deal with the news, keep yourself healthy, eat well exercise if you can - you can only control so many things in life - and being happy (with or without having chikdren - its both your choice) - talk to each other, speak to groups with same diagnosis - you may be surprised on some case studies - above all MarmiteB stay strong and do what is right for you and the one you love (whatever you both decide will never be selfish but it will be a controlled/well thought out process) - with an unexpected diagnosis we often feel we have no control of our lifes, taking back control can help with dealing ❤️
Really simple answer from me. Live for now do what you want to do now without worrying about what may happen. We life with risks all through our journey. None of us ever know when our last day will be. Live each day as if it were your last, have a family and love watching them grow.
Millions encounter adversity. Some cope , some don't. You and your husband need to have a serious and honest discussion about your ability to cope and the network of family and friends who would help. Bear in mind it could be you coping and not your husband. Nobody knows the future. If you decide to go ahead and start a family you'll be in a better position to manage if misfortune arrives. Certainly better than millions who never even consider it.
Having explored the negative, embrace the positive. All medical conditions are now problems waiting to be solved. Maybe tomorrow, perhaps 10 years or longer. But amazing advances are made all the time and heart issues are common and get a lot of research.
If you do start a family you won't have a lot of time to worry about the future. Your life will full of the joy in bringing up your children.
Most definitely speak to your husband about your concerns although it is very reassuring that the cardiologist has said not to let your condition stop you having children.
I am beyond childbearing age and don't have any children, so speak totally without bias or emotional pull.
Having children (or not) can be a choice, not always but some people choose not to have children for many reasons.
No-one knows what the future holds, many couples get together intending to start a family and then find themselves in a position where they either choose not to or can't.
Some couples are healthy, live healthy life styles have children then one of them develops cancer, a brain disease or other terminal illness or even gets knocked down and killed.
Life isn't always straightforward and like your heading, we play the cards we are dealt, who is to say it will be your husband that is left alone bringing up these future children of yours, it could be him that leaves you, whether through death or other reasons.
This isn't only your decision but don't let your bypass at such a young age stop your dreams in their tracks, thankfully we don't know what the future holds so if the Cardiologist sees no reason not to continue with your plans then I would carry on regardless and leave things in the hands of fate!!
Live, Love and Laugh, this is not a dress rehearsal!
Technology is moving at a huge rate, new drugs are being developed all the time, as well as old drugs being used for heart therapy, like dapagliflozin which was used for diabetes and was found to help heart failure. So it’s a glass half full , don’t be defined by your diagnosis.
Hi MarmiteB
I'm truly sorry about your situation, But I think you're looking at this in the wrong light. If I have this right, You said you had plan's to Mary and have children some day? The big question is, does your partner still want to plan their life with You? I think you would be selfish to not share your love and gift of life with someone who wants you in their life.
In a mixed up way you have an opportunity here that most people Waste! You know your time is precious and you don't have to waste time being petty and angry about silly things that most people do everyday. You can have life the way you want it, You can love harder and Cherish everyone in your life, like a husband and children. If you would pass early in life at least you would have been able to give the Best of You to the one's you loved and they will grateful to have had you in their life. I'm Terminal and dealing with some of these feelings your having. But Im extremely lucky, I'm married to a Wonderful woman who loves me and wants me to stay with her as long as I can and I'm doing everything I can to stay longer.
So if You think about what I've said and look at what you want to leave as a legacy. You have the Ability to show a husband and children how much you loved them, which is a pretty Great Gift.
Oh my word, so young to be going through this but I don't read anything in your post that says your life will be shortened or a reason to avoid having children. You "Might" get ill; you "might" have problems later; You "might " get run over by a bus tomorrow. If we lived our lives wondering what might happen we'd never do anything. I didn't have my son until I was 40. How I wish it had been earlier so he wouldn't now have a disabled mum, one heart attack and unable to walk. When I reached 70 it hit me that my mum didn't and my dad was only 73. I might not have long to live. Medicine has changed so much since mum and dad died, with what we have now they would both be still alive. Live for today not what might or might not happen. What's better? Your having children who have loved you for 20+ years or not having any at all? Your consultant doesn't see a reason not to. "MIGHT" is no reason to stop living.
Gosh, you seem to have been dealt a crappy hand. I was 47, a single dad to 3 teenage boys (now in their 30s) when I had an unexpected urgent CABG×4. I was told that the op had a variable outcome, but the surgeon was going to do all he could to try to ensure no 're-do' was required for at least 35 years. This worked for me. I would be 82 and my kids definitely grown up.
In fact, post op, and learning all the rehab lessons, I made a number of 'policy' decisions:
1) I wasn't going to die
2) family (and friends) was (were) more important than work
3) live for today as much as for tomorrow (i.e., don't put everything off till tomorrow or for a rainy day).
15 years on: I have travelled the world a lot (including a circumnavigation in 2012); my 3 sons have done well at school and uni; they have good jobs; they have lovely partners; and, I have 4 grand children (and another on the way).
So in general: not bad! 😀.
Obvs you're younger than I was but having heart disease isn't the end of the world. If I was in your position, I would want to discuss your and your partner wishes, and any medical advice about pregnancy. I'd also try to look at the upside of any estimates - which gets you to 70+ before requiring a re-do. I'd also try to load any dice in your own favour, e.g., healthy eating, not letting the BMI slip etc.
Another thought I had, in relation to your own understanding of your heart condition, could it be worth asking your GP for genetic counselling, to see if there is a genetic reason for your heart condition?
Finally, I really think it could be worth finding out about Sally Bee (Google her). She's only 52 and has survived 5 heart attacks. Look at her website for starters, sally-bee.com/
Good luck with everything ... and I wish you and your hubby every happiness in the future.
It’s been just over a week since posting this and I have to say that all of your comments were extremely helpful and kind. I am feeling a hell of a lot better about it. My husband has been amazing and fully supports me/us/our future family plans.
I now have an appointment with a cardiologist who specialises in women that have heart disease who want to have children. I am looking forward to meeting her and discussing my options.
You guys are right, I need to just grab life by the horns and do it. I booked 3 holidays this weekend because I thought “f**k it, I’m going to have a great year before getting pregnant!!” I’ve booked a trip with my husband, with my friend and with my family. Get them all in before January 15th, my new hearts 1st birthday and when I can come off blood thinners and start trying for a family.
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