Bicuspid Aortic Valve and some.

[Mary_Janet]

Hi All,

I joined this forum yesterday and am finding it so useful to read all your experiences. Thank you.

My story is that I thought I was fit and healthy but a bit breathless going up hills , then in May I developed flu like symptoms which I treated at home with paracetamol, fluids and rest, the usual. After two weeks of no improvement I was told by my family to see the GP , luckily she examined me carefully and heard a heart murmur and sent me to hospital (I drove myself) and I was admitted to hospital on 12th May this year. On the Saturday I was diagnosed with endocarditis with a calcified aortic valve due to a congenital condition - a bicuspid valve.

I was told I would need a six weeks course of anti biotics and a valve replacement in ten years. On Sunday I was told that the surgery would be within a year and by Monday I would not be discharged without surgery. It was like being hit by several ten ton trucks!

So I then settled into a routine of Intravenous antibiotics being administered every four hours for one and twelve hourly for another including through the night.

After a trans oesophageal endocardiogram then an angiography and a few other tests it was decided to perform surgery after two weeks of antibiotics. I was transferred to the teaching hospital and on 31st May I had a mechanical aortic valve replacement. I choose a mechanical valve as I am 56 and do not fancy having to renew the valve. I am now on life time warfarin which is a nuisance but ok.

My recovery was slow but steady with some complications but nothing the team could not deal with. My recovery was much slower due to the endocarditis. Two weeks post op, I was transferred back to my local hospital to complete my intravenous antibiotics. The initial six weeks being increased to 8weeks.

I was eventually discharged on 14th July after a lengthy nine weeks. On discharge I was very weak and tired easily. I had lost over a stone in weight and my muscles had disappeared. I was also sleep deprived as I had had interrupted sleep for nine weeks. Since July I have been working very hard at my recovery. I have completed the cardiac rehab course and have been referred to the local gym to build up my muscles. I am getting there.

It has been a tough few months for my family , my husband, My 17 yr old son and15 yr old daughter have been so supportive. I feel very grateful to be feeling so much better. If I had not had endocarditis I would probably getting ill now as my valve was found to be in a very poor state. But also feel unlucky to have gone through so much.

[Sina-6491]

Hi Mary-Janet

Welcome to the group honey.

You poor thing I am so sorry to hear of yours and your families tough few months.

Hopefully you are through the worst of it now. It sounds like you are working hard at recovery, good for you girl.

It does get better you know. Yes you'll probs have your down days like the rest of us. But as long as you stay on the side of positivity you'll improve faster than you realise.

The way I always look at it is, (well it happened) SO WHAT! that was then, this is now.

You see when you think about it. Anyone, anyone around you. At work, home, the park, shopping centre, the street outside your door.

Anyone, anyone at all, could quite frankly drop down dead in front of you.

It's a fact we are all going to die at some time and none of us know when.

Now I know I probs sound harsh and abrupt. But really please don't waste presious life on evan giving negative thoughts any time at all.

We are the lucky ones as we are now on the radar and generally being looked after.

So as difficult as our heart issues are and how tough our recovery is for us, our family and friends. We gave to be possitive it's the only way.

After all, we made it girl. We are alive and ready to rock and roll. Well soon as we are strong enough that is lol!!!!!!

So Mary, as I said, glad you are over the worst. And I'll see you on the dance floor.

Sending hugs to you and your lovely supportive family.

Take care now, Jo :)))))

[Mary_Janet in reply to Sina-6491]

Thank you so much for your great reply Jo, really helpful. Luckily I am generally a positive person. I am so aware that I have been very lucky and have a good future ahead. Reading people's stories on here is very helpful and makes me very grateful. Thank you

[Sina-6491 in reply to Mary_Janet]

Go girl 😊

[Fredders]

Hi glad to hear you are on the road to recovery. I didn't have the massive shock of being told I needed an AVR when I was 52 as I had known since I was 16 that I would eventually need one. I had a tissue valve as was told they would last about 15-20 years, so it was a bit of a shock to find out that 6 years later I need it replaced. I am having a mechanical one this time, although not looking forward to the warfarin. Should of had my op by now but have had it cancelled twice, both times on the day I was due to go in. Third time lucky next Tuesday! Hope your recovery continues well.

Wendy

[Mary_Janet in reply to Fredders]

Thank you Wendy for your reply. Good luck with your op on Tuesday. I hope and pray all goes well for you. Tough luck having to have repeat surgery. I am on warfarin for life too, I am still on regular blood test which is more of a nuisance.

Good luck on Tuesday and thanks

Mary

[kefalonia1]

Hi Mary-Jane, poor you l also had a mechanical AVR in Feb brought on by sepsis and infective endocarditis. The first operation failed after 5 weeks and just as l thought l was better l had to have a redo to save my life and my odds of survival were extremely slim l learned afterwards from my Husband. You will always get people saying how lucky you are and at the time l felt decidedly bl**dy unlucky! so l know exactly how you feel but its early days for you it just takes time and small steps along the way, now l am much better. l spent 92 days in hospital , all but 14 of those on a antibiotic drip. When l came home l took antibiotic tablets for 6 months and am now finally off them and just have to put up with lifelong warfarin which is ok compared to everything else. My muscles were like those of some old biddy and l was constantly tired so l do understand, l built them up using our Son`s exercise bike and cleaning windows slowly with both hands at the same time so as not to put a strain on one side of my heart or the other. lts a long road but you will get there, they also gave me a pacemaker so l think that helps. l think the main thing is not to expect too much too soon. There are lovely people on this site who gave me much needed support and optimism. Keep in touch with us all. Take care, Sue.

[Mary_Janet]

Wow Sue, what a story and what a journey you have been through.It sounds grim . So glad to hear that you are recovering so well. You sound like an awesome and determined woman. You are very generous with your advice. I am taking lots of exercise mainly walking and a wee bit of swimming. I have started at the gym (under supervision). Never used a gym before but want to both build up my limb muscle and cardiac muscles . Actually enjoying in more than I thought. Want to end up fitter than I was before all this happened. I certainly will keep in touch . Keep cycling Sue and was king those Windows ! Thank you.

[kefalonia1]

Cheers Mary J, my next hurdle is finding travel insurance that doesn`t involve selling my house or body(people would ask for a refund with all my scars!!!) to pay for it. Take care Suex