Help with symptoms in my 30s

[Zaj23]

Hi, so this is my first post so please bare with me, I was born with coarctation of aorta, multiples holes and ventricular septal defect. I had 2 open heart surgeries to repair the holes and coarctation of aorta by the time I was 3 months old.

I have since been seen yearly by a cardiologist for Echocardiograms etc.

Was diagnosed with high blood pressure at 13 and put on atenolol and amplodopine but gp stopped medication around 2019 and said my blood pressure had stabilised.

Around 15 I had tests to find out why I was getting daily palpitations, it was discovered I also have a bicuspid aortic valve.

Since then I've been in ok health and continued to live a normal life however have always struggled alot with getting out of breath in exercise.

Lately I've been getting some more worring symptoms, more palpitations, I get out of breath walking up the stairs and when I lay in bed there is a heaviness on my chest, I also notice I can hear my heart beat loudly in my ears and get a headache, I've been getting swollen ankles and feet and frequent pins and needles in my arms and hands. Also I've had a few occasions where my hands having started burning/itching and the veins were bulging.

Sorry for such a long post and I hope it makes sense. Can anyone shed some light on my new symptoms, cardiology dept all but shrugged it off when I phoned, but I believe I only spoke with a receptionist.

Thanks

[Yumz199725]

So glad your post finally came through! As you already know we're quite similar I won't repeat myself 😅. Hope your echo goes well and keep us updated on how you get on talking with your cardiologist about your new symptoms x

[BeKind28-]

Hello

You have been through an awful lot from a young age and I am sorry the receptionist shrugged your new symptoms of it was not her place to do so

None of us are medically trained and I really think you need to contact the Cardiology department again and say you wish to speak with someone as these are new symptoms

Also try talking with your Doctor they may be able to get you an appointment

I hope others will read your post and have some more suggestions

Let us know how you get on x

[Zaj23 in reply to BeKind28-]

Thank you!

I do luckily have a routine echo booked for this Sunday, but been told I won't be able to actually discuss any results or symptoms with a cardiologist after as I normally do, instead I'll have to just wait for the results.

I will keep you updated thanks 😊 x

[BeKind28- in reply to Zaj23]

Hello

That is a positive you have a echo this Sunday and I know they will not be able to discuss your results but I wonder if they would be able to give you some advice how to get a message to your Cardiologist it could be worth asking

Will look for your next update and hope everything goes well x

[Paula233]

These are all new symptons that need to be taken seriously. Please contact your consultant and press for a appointment. Also speak to your GP as he might help by writing to your consultant and might run some blood tests.

[Carercmb]

First so sorry you’re going through this without the support you need. Book GP appointment .

Any further symptoms ring 999 as this has been the best route for my husband .

[LadyZ13]

One other suggestion, if it helps - my hospital's adult congential heart unit has a team of nurses (well, two specialist nurses!) and they have an email address for non-urgent queries and I have found them super helpful. For example, when my Fitbit flagged that I was showing episodes of AFib after my heart surgery, I emailed them and they organised a holter monitor to take a look. If you can get hold of that kind of information then it can be a very useful point of contact without needing a constant appointment every time. Good luck getting this looked at and sorted, I hope you get answers and feel better very soon. I'm also in my 30s and brand new to this heart business having been diagnosed with a congential heart defect 9 months ago. Happy to chat 😊

[Yumz199725 in reply to LadyZ13]

Hi I have that option aswell it's great that's how I had a holter and echo organised and I have an emergency number to call if I'm having symptoms. GUCH nurse helpline x

[Zaj23]

Thank you all for your support and advice will update if I get any results following tomorrow's Echocardiogram! Thank you it's really nice to know I'm not alone and also that the symptoms aren't just in my head if that makes sense. X

[Yumz199725 in reply to Zaj23]

Wish you all the best with your echo today 😉☺️x

[Noodlesalad]

You have been through so much! You're amazing.I can only say I always feel that you know your own body best, and if you are concerned and I feel you rightly are you should and have sort help from your cardiology team. I have had occasions when especially recently I have had really bad heavy palpitations I hope that describes my feelings. Some times the palpitations are so strong I get a pain in one side of my head at the same time, sometimes they make me feel really dizzy. On no occasion have I contact my GP because like many others I read my GP only allows you to see them with one problem and if the reception staff think it's not urgent they say so or advise you to go to A+E.

All I can say is keep a record of what is happening to you and after a couple of weeks either make an appointment to see you're GP or your cardiologist.

Good luck.

[Deejay62]

Welcome to the group. You’ve already been given some good advise. Please keep us posted on how you’re getting on. All the best.

[Hidden]

Hi, Sorry to read about your symptoms, so it's good that you have an Echo on Sunday.

You've been in the system for some time, and given your history and current symptoms I suspect you'll hear back sooner rather than later.

With regard to the symptoms, I do recognise much of them leading up to valve surgeries, getting out of breath, heaviness on the chest, and particularly hearing the heart beating and headaches come to mind.

[Sheffield55]

Sorry about your struggles. However it gets better with time. Speak with your doctor about your meds cos your symptoms may be side effect of medications and also watch your diet. Try reducing your salt intake. You will be fine in no time.

[Pefki]

Had similar symptoms from late last year and luckily the GUCH team at Barts really took them seriously and rushed my case through with a surgical date in weeks. You definitely need to contact your GUCH team and as has been said, the specialist nurses are great in my experience.

[Zaj23 in reply to Pefki]

What symptoms did you have? Do you mind me asking what the cause was? Glad you got the help you needed in time

[Pefki in reply to Zaj23]

From the latter part of last year, I started to feel more tired, slower I would say, heart thumping when I had to take the stairs. This gradually got worse and more noticeable. After going up alot of stairs at a monument in Paris in January, I felt faint and it took several days to recover with a trip to emergency to see why I felt so bad. The xray showed an enlarged heart and cardiologist appointment scheduled

[Zaj23]

Hi so I have had my Echocardiogram results and while I have good results, no significant regurgitation or stenosis in my BAV, it says I have some basal right ventricular dilation? Does anyone have any more info on what this means exactly?

To add since Saturday on and off I have have episodes of feeling light headed, dizzy and tingling, I was driving on one occasion and could luckily pull over, but It was a scary experience, I have had it most of this morning, its not the heat as its not hot here today.

I notice on a previous echo results letter it said I had right sided pressure when I googled this it said something to do with pulmonary hypertension?

I don't have a follow up appointment with my cardiologist, so just a little concerned and confused with my symptoms/results.

Any help greatly appreciated.