bicuspid pre op advice

[Tigg57]

hi, I just wanted to ask if anyone who is waiting for a replacement aortic valve or who has already had one, ever worried that you might not be the same person after the surgery? I’m going through pre op at the mo, and I’m still trying to do all the things I love. My wife is worrying that I’m pushing to hard, and maybe doing too much. I’m trying my best to make sure my wife and kids are ok if anything goes pear shaped, but just worried that I won’t be the same afterwards (surgery) I’ve always been very active, working hard and having lots of fun too. I suppose I’m trying to fit in as much as possible now, cos I’m not sure how things are going to go. Did anyone else feel like this ?

[Yumz199725]

Hi Tigg57I understand what you mean I also have bicuspid aortic valve, it's severly leaky and slightly narrow, I am awaiting valve replacement surgery and I worry I won't be able to do all the things I do at the moment especially because I am a carer for my brother full time. Completely understandable you feel like this. I'm sure your op will go great. Wish you all the best with your pre op appointment and operation.

Take care 😉☺️

[BicuspidBloke in reply to Yumz199725]

I'm sure you have thought of this but you will need support for the caring responsibilities for up to three months. Even if just minimal (shopping, cleaning) but anything heavier like lifting or washing etc will be a no-no.

[Yumz199725 in reply to BicuspidBloke]

I have thought about it but haven't arranged anything yet as I don't have date for surgery yet. But thanks definitely will take into consideration. 😉😊👍

[Ageingfast]

I was bicuspid and had stenosis. I don’t think the bicuspid was a problem, it just meant the stenosis was a lot worse, i.e. it only had two propellers to block rather than three.

The final weeks before the op 1st May 2020 I was utterly exhausted, I could only stay awake for 2 hours a day. So no I didn’t worry about being different, I wanted to feel I could be active for more than two hours a day.. yes I worried a bit that my wife would not cope and I worried that my much loved cat might be sad.

After the op, the recovery was about three months. I felt a little stronger every two days and when the recovery was complete which was August 2020 it was just plain wonderful. I had my life back. So long term you should be good, but don’t underestimate the recovery time. It’s bound to be two months or more and that’s a long time to be out of action.

Sooty

[BicuspidBloke]

I was bicuspid, had the valve replacement last year. I'm still the same person on the inside. 100% no change (sadly, says the missus!). Although I do count myself as half cow now (mainly just for comic effect). In terms of doing the things I used to do - again, no change. Physical rehab is crucial. It takes a few months to build up the strength & fitness again but it all comes back if you work on it. Just prepare yourself to potter around for a few weeks (but get up and out EVERY day).

[road2ruin]

Hi Tigg,Post op patient here myself too. It's been four years for me.

I would day that mostly I am the same. With regards to physicality I am probably better, certainly more so than just before the op.

For me though, the big change has been my mental health. It's not something that people like to talk about and used to have such a stigma. It still is looked down upon by many, like an illness that doesn't really exist or 'you must be such a wimp'.

The op itself was no where near as bad as I had pictured. It was mainly the recovery after being quite slow, and I struggled to come to terms with my scar initially. I hated looking at it.

In the long run though I am glad I had it done. What else would the result be? I am extremely lucky to have a very good support network of family and friends.

Good luck

Pete

[Hanibil]

Hi yes I did to a degree, but there really wasn’t any need. I had a mechanical aortic valve back in 2005 at age 48 and it gave me my life back from struggling to walk far and almost unable to use stairs back to skiing mountain biking and basically doing exactly want I want, so try not to worry these surgeons are brilliant and know exactly what there doing. I will always remember mine saying to me when I was worried I have done this before you know.

[Pefki]

Hi. I was exactly in your position 6 weeks ago. I wanted to believe I would be back to 'normal'in 2 weeks. That is the time I gave myself because I have too much going on. My severe stenosis crept up on me over the last 6-9 months but I put it down to tiredness, overdoing things, not sleeping well. When I finally managed to get an appointment with the GUCH cardiologist at St. Barts, it was full speed ahead and surgery within 4 weeks. I did everything I could in those 4 weeks to make up for the 2 weeks I expected to be down. I could not be told that I would need minimum 4- 6 weeks but even at 26, and with a few minor complications like pneumonia in intensive care and fluid around the heart membrane, the first 4 weeks recovery was hard and painful. My parents flew in from Europe for my first cardiology appointment because they knew things were serious even though I was in denial, and are still doing most things, cooking, shopping, washing, accompanying me to clinics, until my 6 week post discharge check up scheduled in 2 weeks. I am back to being active and studying for my end of year masters exams, socialising, walking alot, no more pain killers, able to concentrate and pretty much do everything I want to do. I am still a little tired but I was a bit before surgery so I think I could say I'm even better than before. I even took an Uber bike for a short ride to the station to see if I could and it was fine. I do an average of about 12000 steps a day and I have stopped avoiding the stairs. I turned the corner at about 4½ weeks when I stopped feeling in pain all the time. The hassle is the warfarin and the INR blood tests. I suppose they will become second nature eventually and I havn't started cardiac rehab yet which I hope will help with confidence and strength. I'd like to be able to start back at the gym, start to build up muscle after the weight loss, work up to riding my bike again or playing some basketball with my friends. If you are string and active, you will be again. My last surgery was at birth so I was really naive. It is a big surgery so be prepared. Good luck.

[Yumz199725 in reply to Pefki]

Aw wow sounds like your stenosis really did creep up on you glad you had your surgery so quickly. I get seen at St barts aswell they said I will need surgery eventually. My aortic regurgitation is now classed as severe so probably will be soon. My first open heart surgery was to fix coarctation of the aorta at a day old so this surgery will be really scary for me. Hope your able to get back to doing everything you was able to do before surgery. Sorry to hear you had few complications though sounded like a major tough time. Im 25 will be 26 in October so similar age to you 😅☺️. Hope you can start your rehab soon take care. Sorry if this comment is confusing sorry 😅🙈

[Pefki in reply to Yumz199725]

Thanks and good luck.

[Gingeramber]

my husband is waiting to have the same replacement valve . He’s disappointed because he thought he’d have a date after the pre op but found out even though echo done at Bolton , Manchester insist on another . Initially told 6-12 weeks but looking going to after 12 . He has asked the doctor whether he will get up to the fitness he had , biking , and doctor was a definite yes , he just wants the surgery and then he can recover and get on with getting back to how he was

[Yorkshirehead]

Hi, This is a difficult one for me to answer as I had my valve replacement in 1982 when I was 29. If my memory serves me well, I would say yes I was concerned. I had a very young family, two boys under three. Looking back, I was hesitant to go for a run for several months after the op. My GP said that it was fine to run. He also told me that my problem was that I didn’t believe him, which was true at the time. When I finally picked up the courage to go out for a jog, a friend came with me because I thought I might not get back. I smile at the thought now but it was a real concern back then .

Yes, my life did change I could no longer play rugby but apart from that the only thing I have to keep an eye on is keeping my blood at the right level of coagulation as I take Warfarin. I cycle and walk a good deal and am enjoying retirement. My advice to you is to listen to your wife. Don’t push too hard before your op and look forward to a long and happy life. Very best wishes to you.