Newbie looking for advice

[CrazyRabbit]

Hi, I found this site when looking up my conditions. I'm a 24 year old female, I found out in August of this year that I had 3 heart conditions; congenital heart disease, aortic aneurysm and aortic valve disease . None of which I had any idea of, and even to this point I'm still not 100% accepting what I was told as I found out this late on. Just wondered if anyone had any tips on how to cope with the news or be able to try and live a normal life. I found that after being diagnosed that my life has now become very restricted and I'm finding it difficult to cope with the huge change.

[Calliope153]

I had a heart attack in December and found out I had five conditions as a result. It takes a while to get your mind to even think about it. Like you I had no idea anything wasn;t right. Change your diet, do the exercise and take your meds regularly. I can thoroughly recommend the book by Carolyn Thomas "A Woman;s Guide to Living with Heart Disease" and her Heart Sisters blog. I found it a very lonely time but it will get better. easy to say, hard to believe but true.

[jimmyq]

If your exercise is restricted you could also try Shibashi or Chi Kung or Tai Chi. Videos for the first 2 are available on YouTube, Netflix and Amazon, etc. Tai Chi is best done in a class. Shibashi is very gentle and was recently shown on "Trust Me I'm A Doctor" as effective as Zumba, without the exertion.

[jimmyq]

Thinking about this: the aortic aneurysm and aortic valve disease might be fixable by surgery. Has your doctor mentioned this?

The congenital heart disease might be improved with lifestyle changes, depending on what form it takes. Can you elaborate?

[CrazyRabbit in reply to jimmyq]

Hi, sorry I have coactation of the aorta. After j found out i had to have a sent fitted not two weeks later because it had narrowed too much. I have to go back for another fitting and after that surgery for the aneurysm.

[Philippa_BHF]

Hi CrazyRabbit,

I'm sorry you are having these worries. It is completely normal to worry when given any kind of diagnosis of a heart condition,especially if you were feeling well!

A congenital heart disease is one people are born with, of which there are many and are generally to do with the structures of the heart such as the valves or heart chambers. Depending on the reason for finding the diagnoses of the aortic aneurysm and aortic valve disease and what led you to having the investigations, it might be worth seeing if you can be referred to a cardiologist for further management. For many heart conditions, people are monitored over time without necessarily needing any further intervention,so please try to live your life the same way you were before being told.

If you want to talk things through further with a cardiac nurse,please feel free to ring the Heart Helpline on 0300-330-3311. There is someone to talk to Monday- Friday from 9-5.

I hope I've helped.

Take Care,

Philippa

[sandybrown in reply to Philippa_BHF]

Good advice. GP should have done a referral by now?

What tests are available for these two conditions "Aortic aneurysm and aortic valve disease"?

When I lifted heavy weight to put into a recycling bin, I felt some thing expanded and my heart moved.!, I do not like to ignore this.

Since then I have been reading about Thoracic aortic aneurysm, I had AAA checked three years ago, all OK. When I asked my GP for TAA check, her response was see the people who did the AAA!!!

could you please tell me and others how one goes about checking TAA.

By the way I am doing a free learn course given by BHF.

Thanks.

[CrazyRabbit in reply to sandybrown]

Hi, when they were checking everything I had numerous heart scans, MRI's and a CT scan with dye. But it wasn't until I was referred to a specialist hospital that they picked up on those.

[sandybrown]

Hello,

Please ask your GP for a referral for more tests with a cardiologist. TAA and valve needs checking. My brother had valve replacement aged 80.

What tests have had done so far?

If things get bad dial 999 or go to A&E.

[CrazyRabbit in reply to sandybrown]

Hi, I have already had surgery to have a stent fitted, and been told that I'll need another fitted. Along with surgery for the valve. It's just coming to terms with everything that's the troubling thing.

[jimmyq in reply to CrazyRabbit]

Coming to terms with it all is a biggy for us hearties but we all have to go through it. This website has helped me a lot, people with the same conditions talking about them. Try not to worry. It has been caught before you have had a heart attack. You are in good hands. Once you get your surgery over and medication sorted out you can start putting your life back together. It's all done one step at a time and we are here to help.

[clarehealsworldwide]

Best of luck. In haste,.Clare

[Rugbymad]

Hi CrazyRabbit

Although a lot older I am 13 days post op New ATV aortic arch and a bypass before op gone from fit firefighter 4 years ago to cant walk 10 metres up hill.

Had to accept born with bicupsid valve and that surgury was inevitable feeling good at moment walking locally when previously couldn't it's a mind thing I know your young but stay positive! !

[dunestar]

Hello CrazyRabbit. Yes, it's really difficult coming to terms with your diagnosis. Suddenly everything changes from one day to the next. You've become a member of a club you didn't ask to join. My experience is that at first it can be overwhelming and you spend all your day googling your condition. I think Calliope153 is right, it's a question of time. Try not to define yourself totally as your heart condition but as the person you were before who happens to have a heart condition. Focus on what you can do and build on that, rather than on what you can't do. I wish you all the very best.

[JohnCyclist]

Hi, 6 months ago I completed a pretty tough aerobics class, then-two days later-hospitalised for 4 nights with “heart failure”. Suddenly feeling a very frail 70+. Now virtually resumed my former physically- and mentally-active life, albeit with some continuing meds I’ll probably need for life. My advice is to badger your doctor (or whoever) for lifestyle guidance; stay as active as you can, taking life one day at a time. Try to be philosophical about the meds.(unwanted but essential). Very best of luck, I’m sure things will look better for you before too long

[Mirtle]

Hi. I was diagnosed with severe congenital heart failure in May. I had got through 67 years without knowing. It was only discovered during a pre op for a bladder op! I was devastated and found life very difficult for several months. I am lucky to be treated by a super team of NHS staff and I have discovered just how wonderful some of my friends are. I have ended up on a lot of medication including antidepressents but quality of life is improving again. The non medical things that have helped me include going to meditation classes every week and doing some at home too. I go for a short walk every day to get the paper. When I feel tired I have some interesting knitting or sewing to keep me busy. Every evening I write a list of at least 3 things that have been good about the day. Yes life has changed and some of the meds take a bit of getting used to and make me feel very tired but by swapping activities I am starting to feel a bit more positive and happier. I felt I needed to concentrate on quality rather than quantity of life. I don't know if any of that helps and I wish you all the best.

P s. Don't forget about the BHF nurses on the helpline. I have found them very good listeners.

[werd]

Reading your post took me back to when i was 24 .i got the same news as you.after tests 2 years later i had an aortic valve replacment i was 26 with a wife and 2 boys under4 years old my condition came to light the day the youngest was born.in the delivery room in fact.well i will be 71 next month my 2 sons are past mid fortys my valve is still as good as the day it went in and so am i

Ps if they do valve replacment on you go for the mechanical valve as you are young and they last.i am living proof

PPS GOOD LUCK

[Gav_UK in reply to werd]

I'm new to forums but fun your post really reassuring! I'm 33 and two months post-op (mitral valve repair) an always seem to be worry about the what ifs and my future but to hear that you had your valve replaced at 26 and are now in your early 70s and still going strong is something positive to hear

[Gundoglady]

Hi I'm 52, was born with a bicuspid aortic valve, so for me it's something I've grown up with and have challenged drs every step of the way! Was told I shouldn't/couldn't/ not allowed to do so many thing growing up!

But, everything they told not to do, I decided I would do them X

And that includes having two children, who are both now in their 30's X

I had surgery 6 years ago to fit a mechanical heart valve, and repair an aneurysm, can't say it was the best time in my life, but, I'm still here, and generally it has been a good thing X

I have been fit and healthy since, until recently, when I discovered that I now need a pacemaker.

My advice for what it's worth, is question everything, trust your body to tell you when it's time to stop and rest ( make sure you listen X)

But don't give up, change what you have to,if you have to X

Accept help when it's offered, there are no prizes for being too proud to accept help x

Ask for help if you need it X

Don't suffer in silence, speak to the helpline, speak to family and friends, I have a few Facebook friends that I've never met, but, we have some health issues in common, and we are there to support each other, just like this page x

Good luck with everything x

[Nic25]

Hi CrazyRabbit. Snap! Only difference with me is I found out in my teens so it has pretty much been with me all my life. I turned 50 this year and having gone from yearly for many years to then six-monthly checks I'm now due AVR (aortic valve replacement) and aneurysm repair, probably next month some point. So scary but getting my head round it. But the point I want to make is, depending on your severity and whether it worsens or stays stable of course, you may yet have many years before anything actually needs to be done. Also, as these conditions are often symptomless I actually feel lucky to have been diagnosed and closely monitored pretty much my whole life (for free - wonderful NHS) rather than suddenly finding out in A&E. None of this is to say you shouldn't be feeling scared, bereft (for not being 'normal' anymore), angry etc. You're life has been turned upside down, so only normal to feel that way. But just to highlight - and to emphasise this does depend on your specific diagnosis - you ain't done yet! And hopefully not for a long time to come. Good luck with everything Nic xxx