u/Spiritual-Spell1797

Just got back home! Phew! What a tricky 10 days it's been. I had open heart surgery to replace my aortic root, ascending aorta and a mechanical valve (43F). Sometimes called Bentall procedure (although not in the UK it seems).

This was after a nasty endocarditis bout in March that caused an abscess near my root.

I had a stroke during surgery but that has resolved. It just affected my vision for a few days.

The first few days were very tough indeed. The drains coming out were unpleasant but not as bad I'd worried. I'd argue the pacing wires coming out were worse!

Each day I got stronger. It was noticeable. And once I was off the opiates then the weird visions and hallucinations went. Just on paracetamol now for pain relief. And some tablets for my heart (beta blockers) as well as the Warfarin, obviously.

My warfarin took about 6 days to get into INR range of 2-3. As soon as it got over 2 I was discharged, and will join the outpatient anticoagulation clinic here in Sheffield, UK for the next few months. Long term I hope to manage it myself.

Just got back home! Phew! What a tricky 10 days it's been. I had open heart surgery to replace my aortic root, ascending aorta and a mechanical valve (43F). Sometimes called Bentall procedure (although not in the UK it seems).

I had a stroke but that has resolved. It just affected my vision for a few days.

The first few days were very tough indeed. The drains coming out were unpleasant but not as bad I'd worried. I'd argue the pacing wires coming out were worse!

Each day I got stronger. It was noticeable. And once I was off the opiates then the weird visions and hallucinations went. Just on paracetamol now for pain relief. And some tablets for my heart (beta blockers) as well as the Warfarin, obviously.

My warfarin took about 6 days to get into INR range of 2-3. As soon as it got over 2 I was discharged, and will join the outpatient anticoagulation clinic here in Sheffield, UK for the next few months. Long term I hope to manage it myself.

Hi all,

Looking for reassurance in a scary time

I've just had OHS (day 5) and got a shiny new OnX aortic valve.

I had a mini stroke on the day of surgery and the doctors had to decide on a short term tweak to my meds.

That's settled now and I'm starting warfarin properly now. Symptoms of stroke have mostly gone

But it's made me realise how vulnerable I feel. I've never ever had to take a medicine before.

Now I'm on warfarin and bisopropol (to slow my fast heart rate post surgery) and I'm also wondering about future complications.

Does being on warfarin make taking other drugs more complicated?

I'm only 43 and feel like maybe I didn't appreciate the long term nature of a mechanical valve needing medication.

Will things settle? Does having had the stroke affect anything?

I'm going into surgery tomorrow and I wanted to focus on all the benefits and life-affirming changes there might be.

How has it improved your body? Your mind? Your relationships with others?

Do you feel stronger? Physically? Mentally?

Has your experience inspired or improved the lives of others?

What do you do now, after surgery, that you never did or never thought possible before?

Looking forward to hearing from you! Grateful for positive messages only please

I've seen that a few of us are waiting for surgery! I thought it might be fun and helpful to have a post for us! So we can wish each other good luck, commiserate and then check in as each surgery day passes (fingers crossed for no delays!)

Do anyone want to contribute?

Me, 43F, UK, having aortic root and valve replacement on 5 or 6 August

Hi all,

Just updating you so I can continue to get your excellent support and pep talks!

I'm 43F with a BAV and endocarditis twice now. The second time was Staph aureus (nasty) and gave me an abscess near my valve. I'm now at home, mostly feeling fine and no real symptoms (apart from paranoia and worry!).

The plan is (UK NHS, just for context)

- replace aortic root with a 'tube with a valve in'

- On-X mechanical valve

- 5 week wait as the surgeon is on holiday for 2 weeks and then so am I!

- surgery first week of August

I have already had great help from those suggesting meditation and wine.

The surgeon also said I was fine to go to France on holiday (about a 6 hour drive plus ferry). I just need to 'take it easy'.

Any other messages of support? Please be kind. I have a wonderful life with two young boys, a lovely husband and enjoyable office job. I love gardening and nature.

Thanks so much

How do/did you cope with it?

I (43F) know I've got a damaged heart after a second bout of endocarditis two months ago. I now know I've got a dilated aortic root (48mm) and a sterile, partially healed aortic abscess from a recent CT gated aortogram, on top of my long time moderately leaking bicuspid aortic valve.

I am waiting to meet my surgeon to discuss what to do about it. But I just keep thinking, what if I don't make it to surgery day? What if something bad happens to me? (Stroke, burst aorta etc etc.)

Did anyone have a similar feeling? How do you get through your days not questioning every chest sensation, every deep breath and heart flutter?

I'm sure it'll help to speak to the surgeon but just for the next couple of days, any tips?

Yours gratefully...

How do/did you cope with it?

I (43F) know I've got a damaged heart after a second bout of endocarditis two months ago. I now know I've got a dilated aortic root (48mm) and a sterile, partially healed aortic abscess from a recent CT gated aortogram, on top of my long time moderately leaking bicuspid aortic valve.

I am waiting to meet my surgeon to discuss what to do about it. But I just keep thinking, what if I don't make it to surgery day? What if something bad happens to me? (Stroke, burst aorta etc etc.)

Did anyone have a similar feeling? How do you get through your days not questioning every chest sensation, every deep breath and heart flutter?

I'm sure it'll help to speak to the surgeon but just for the next couple of days, any tips?

Yours gratefully...

In March I had got my ferritin levels up to 48 - the highest in over a decade. I felt great! So much energy! Then I had a nasty stay in hospital due to a bad illness. I couldn't take my iron pills. Then I got out of the habit during my recovery. Now it's June and I got tested and my ferritin is 21. Not as bad as it had been (in the single digits) but still, I'm so gutted.

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I'm not menstruating (coil) and it's only been 3 months so I'm sad it's dropped that much. I am vegetarian.

I do feel tired again so at least this explains it!

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Can anyone cheer me up and motivate me to get back on the iron pills?