u/Spiritual-Spell1797

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.

​

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!

​

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