How to cope with the emotional side of an aortic valve replacement.

Recovering in ‘stages’ after aortic valve replacement

“Life can be good again,” says Ruth, a critical care nurse who learned about the far-reaching impact of heart surgery, first-hand.

Ruth started out running around the park with her daughter and her friends when they were young, and from there kept on exercising in one form or another. The first indication that something was wrong with her heart was when she was living in Manly (Australia) and running up North Head became more challenging.

“I started to get really really puffed and couldn’t understand why my chest was getting really tight.”

She’d known since her 40s that she had an “aortic murmur” – an issue picked up by her GP during a routine check-up. It possibly stemmed from childhood, she says.

“Nobody really knows whether I had rheumatic fever or not. I remember as a kid having lots and lots of really bad sore throats but we were tough little kids and we were healthy kids, and I used to jump out of my bedroom window and run out with the other kids up the farm and play in the creeks with these dreadful dreadful sore throats. But I wasn’t going to miss out, you know.”

Though normally optimistic, Ruth struggled with depression following the second surgery and “had to fight against it”.

As well as knowing her aortic valve was slightly compromised, ECG tests over the years showed some calcification in her arteries. Taking statins and watching her cholesterol kept that under control while Ruth got on with life, continuing to run, travel and work in parts of New Zealand, and the world, as a critical care nurse.

On returning home to Taranaki however, she learnt that her aortic valve had started to close and that she’d need an aortic valve replacement. At first, Ruth was on the fence about having surgery: “Should I get this done or shouldn’t I? Because apart from when I was pushing myself in exercise, I felt pretty good.”

But taking into account the accompanying occlusion in her coronary arteries, she decided it was time. In 2013, she went to Waikato Hospital and had an aortic valve replacement and had a single bypass to that artery.

Breezed through surgery

Surgery for Ruth was straightforward – “I breezed through it. I felt fine. I was home within five days of surgery.”

The night she arrived home, however, she had “the most horrific pain” in her sternum so she ended up going back to Taranaki Base Hospital to get on top of the pain. “And then I came home and I was alright. I was back at work in five weeks...”

Her background in nursing had its positives and negatives, she says. “My background was in ICU (Intensive Care Unit) and when I was in Australia I worked in the cardiac ICU so we got lots of patients that had bypass surgery. Part of my training had been to go into theatre and observe a full bypass so I knew exactly what was going to happen, I wasn’t frightened of it.

“I’ve got to be honest and say as a strong, believing Christian, I know that my faith in God and dependence on Him got me through. That sort of held me there and gave me a peace – I just kind of knew. And I had a great anaesthetist and the staff were great. It was fine. I got through that really well and came home.”

Ruth returned to work and starting building up her fitness again, but by the height of summer she was starting to feel off.

“I went to my GP two or three times and said I was really feeling very unwell and I couldn’t put my finger on what it was. I was starting to feel really very tired and lethargic, I was cold a lot. Nobody could pick it up.

“One day I was sitting at work in late February and I was shivering. And it was a boiling hot day and I had a jacket on, so I just packed up and went up to hospital.

“They did bloods and everything else and it came back that I had a staph epidermis (infection) in my blood. So I ended up back in hospital with sub-acute bacterial endocarditis. Three weeks of IV antibiotics and back into theatre again for another valve operation.”

Ruth doesn’t know where she picked up the infection. “But it was the staph epidermis so it was off somebody’s skin. It could have happened anywhere along the pathway, I mean it’s no blame, it’s just one of those things.” She was frustrated to be back in hospital though and determined to get back to regular life.

This time around it took Ruth six or seven weeks to get back to work. “The second (cardiac operation) was much more difficult to come through.”

The emotional toll

Though normally optimistic, Ruth struggled with depression following the second surgery and “had to fight against it”.

“Because my darling (husband) is deceased, my Ian is dead, I missed him dreadfully. So even though I’ve got the most wonderful family and friends and a great supportive church... in the middle of the night when you’re feeling hopeless, you still have to find a way through yourself.

“I didn’t feel like going out half the time, I felt tired and didn’t really want to do it.” But Ruth was of the mind she would not give in, and says her faith helped in that tremendously.

“I think recovery from anything, a lot of it lies in your own desire to get better and to get up on your feet. You don’t have to push yourself that hard…. you have to have an attitude that you’re going to overcome this – that you’re going to get through. It’s kind of about how you think.

“My doctor suggested at one stage that I did go on antidepressants because I felt quite down and quite weepy and I said, ‘No I’ll get through it.’ And I did.”

Ruth made herself fresh juices from her garden and would go for good walks to feel better. “In the summer months it’s beautiful so I got out on the beach, and I did a lot with my family and I did a lot with my friends. And one day I was fine, it was all gone.”

Be prepared for the stages of recovery

Ruth knew from her own nursing training that was she was experiencing was “part and parcel” of the journey. “And I decided I wasn’t going to let it throw me, I was going to try and accept it and just get through it.”

“The funny thing is that in some way, I know this sounds crazy, but you feel like you’ve lost something, you feel like part of you is gone. I know that there’s a prosthetic valve in my heart now, and it’s kind of like I know that it has its lifespan limitation. But I think ‘just get on and live each day and enjoy it’. I could get hit by a bus and it’d have nothing to do with my heart!”

She thinks patients do get a comprehensive explanation of what might happen with surgery and beyond, but “none of it really takes until you actually walk through it yourself”.

“You can explain and describe something to someone about the potential of what could happen, but it doesn’t mean anything until you’re in it...”

For anyone struggling with recovery, she’d advise them to get support from people that have come through it and are living their life to the fullest now. “That’s what they need to see. They need to see that this is a journey that you can make now, wonderfully.

“A lot of their recovery is in their own hands. They can do these things but there are stages you go through, and if they can be accepting of those stages, knowing that they can come through them and they will come through them, then life can be good again.”

 

Shared January 2017

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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40 Comments

  • Tom 12 May 2024

    Had mechanical valve put in at age 71. Out now 5 weeks and walking and trying to maintain some level of exercise. No pain except where they tossed in a pace maker. Glad I was still in icu. Been an interesting ride.

  • Garfield 10 May 2024

    I had AVR with machenical valve on the 29 April. I am in the recovery. My problems now are very sensitive to Warfarin 3 mg can go up to 3.9. Still working on it.
    Hope everyone here is well.

  • dewayne.adamson@gmail.com 1 January 2024

    I suggest signing up on http://www.heart-valve-surgery.com
    A lot of information as well as a social network to ask and share experiences.

  • Michael 14 January 2023

    Hi everybody.  I’m 56, had an aortic valve replacement (biophrosthetic-0pen heart) 6 months ago.  I had Afib immediatley after ICU ( about 1 day after the operation) lasted for some hours. 

    I haven’t experienced AFib since (knock wood), all is well with recovery (good EKG’s.  I am still on blood thinners (warfarin).  My question is:  Will I be able to stop the blood thinners eventually?  One of the determining factors for getting a bioprosthetic valve instead of mechanical was so I wouldnt have to take blood thinners for the rest of my life.  Now, because of the Afib I am told- I have been on them for 6 months.  Has anyone who had just one post op incident of AFib been told they can get off of these blood thinners eventually?  Many thanks.

  • Mathilde 30 November 2022

    I had valve replacement (OnX mechanical) and aortic aneurysm repair on Nov.4.  I was sick from anesthesia for 2 days post op. Puking hurt.  Then I developed Heparin Induced Thrombocytopenia which wiped out my platelets and RBC’s.  Spent a total of 19 days in the hospital.  I’m nervous about having to take Warfarin for the rest of my life.  But I’m happy to be alive and consider myself lucky to be “fixed”. My surgeon is the sweetest man on earth and amazing at what he does .  I’ve had a few Afib episodes, but they have stopped.  The sporadic palpitations are normal as the heart heals I am told.  So I’m three and a half weeks post op and very sore, with lots of clicking in my chest…but I’m getting my energy back.  I’ve had a few good cries but I’m loving and thanking my body through this.  I recommend to everyone to manage your pain, rest and love love love yourself for being brave.  Everything will smooth out and life will get back on track soon.  Listen to your body and for once put yourself first.  xoxo

  • Lotty 21 May 2022

    I am 62 years of age and had my aortic heart valve replaced in 2015 with an Onyx Valve.  The surgeon felt that I would do well with one an did an excellent job.  Initially, I had no clue what I was to go through, testing blood to keep within my INR desired window, and having to give myself shots to thin my bloods if too thick. 

    I remember the initial days, scared and confused.  I could hear the valve, and the weight of my breast gave me a sensation that it all would fall out.  He cut me in a way that my scar would not show, with most blouses, across the breast a bit instead of the typical zipper line.

    I did physical therapy, went to my chiropractor, and slowly I became confident of my new found life.  Surgeries are a pain, having to go on shots, but over all, there is not much I cannot do today.  Sometimes I forget I have it.  Other times, it scares me and sometimes it saddens me, knowing I now have to live a disciplined life.

    All of my life, I was tired and it had not been until my early 40s’ I learned of my bicuspid heart.  Today, I marvel at the energy I have, rarely if ever napping!

    So to all of you going through this, know there is a light at the end of the tunnel!

  • Dennis 15 May 2022

    I had a AVR with a tissue valve on Feb. 22 2022, at the age of 60 years. I have been going to cardiac rehab and am half way through with 18 visits. I can only walk on the treadmill for about 5 minutes @ 2 mph before my legs feel like they are giving out. I walk around the track but can only tolerate 5 laps (2000 ft.) before my legs feel like giving out. I have had my leg vessels checked (Venus duplex) and the veins and arteries are fine with no noted problems. I can’t understand why my legs are so weak, I used to be able to walk miles with no pain or problems. The doctors are at a loss to explain my leg issues. Anyone else having these issues?

  • Mike 26 March 2022

    Thank you Ruth and everyone for posting your experiences having this procedure. I am 60 yo with bicuspid aortic stenosis. I hope to get back to hiking the White Mountains in NH USA after surgery this year. Hopefully TAVR. Brett, I hope you complete your quest for Everest base camp!

  • Brett 6 March 2022

    I was born with a bicuspid aortic valve. At age 52 I started having issues with heart palpitations. On 12th Jan 2022 I went into surgery for a tissue valve. I woke up 12 days later in ICU with a mechanical valve. The tissue valve had leaked and the surgeon redid the operation. When I woke up I was determined to get out of ICU and 6 days later I went to a recovery ward. 8 days in recovery ward I went home. I am determined to be back Golfing and Skiing this autumn / winter. After 4 weeks home I walk 45 minutes a day at a good pace. I eat lots of grains, fruit and dairy. My sternum is healing and I have abit of clicking lying down in bed and getting out of bed.
    I really believe recovery is about your mindset, determination and attitude. Staying positive, sharing your experience with friends and family, and looking forward to returning to do the activities you enjoy. My 28 days in hospital could of been a problem but I’ve turned it into a positive experience that my heart now finally works properly and I am looking forward to a bucket list activity of walking to Everest Base Camp.

  • Lorraine 12 January 2022

    I had my aortic valve replaced 2 1/2 months ago, via TAVR.  I’m 74 yr old female that has had a murmur all my life.  The valve stenosis got to the point where I was having shortness of breath almost all the time.  Procedure went well and I’m told valve is working very well.  But I have been having joint pains and overall aches almost constantly.  I’m on plavix and aspirin regimen for 3 months and then just aspirin after that for the rest of my life.  I think that the plavix is causing the joint pains, etc. Has anyone else experienced that?  Also, my BP was very high after the procedure.  I was told that was good because it meant the valve was working well.  They have adjusted my meds and BP is better, but I’m concerned it may have gone too low.  Can anyone tell me their experiences with TAVR.  It was done at one of the best heart hospital in my state and both my cardiologist and the surgeon have great reputations.

  • Rob 28 December 2021

    I had my aortic bicupsid valve replaced due to stenosis in May 2021. I definitely feel better; however I’ve recently (6 mths later) developed pain on my left side mostly near my armpit. More of a sharp pain when I use my arm opposed to an ache. I can’t tell if it’s nerve and/or muscle pain. I’m not sure what triggered it. I also worry that it might be a more serious concern to worry about. I don’t know if it even pays to call my family Doc or cardiologist. I’m 59, in pretty good health but starting to think about my morbidity following the surgery.

  • Frank 24 December 2021

    I am 74 years old, I had my aortic valve replaced in September 2020 and was feeling great. I was in hospital for (Mulgrave, great staff) 5 days and only 2 days in rehab, all this time I was feeling very cold and when I got home it was completely different. I would rug up, about 2 months ago I started having some pains in my chest. I saw cardiologist and never found anything that would do with the heart. Couple weeks ago I started having some pains around heart although can’t really say exactly where, and then this morning sitting at my desk top and reading news, I had some warm like plash going through around my heart and was wondering if anyone had similar experience?

  • Donna 14 December 2021

    Husband had open heart surgery for aortic value in 2014. Thought it would last longer but just now needed it to be replaced with TARV procedure. Was told the first one was too small. Best part of surgery was 1 hour versus 4 hours previously. He is 78. Scary that we had to go through this again and honestly not knowing how long this one would last and if there a “third” chance for surgery?  But, thankful and blessed that we had the talent of our surgeon and our faith that gave my husband a second chance. Plan to enjoy our years together and live each day to the fullest.

  • SANDRA 9 December 2021

    My 82 yr old husband had a valve replacement on Nov. 5th. He was doing OK but the was seeping from the groin wound where the catheter was placed. It finally stopped and now he has a solid lump at the sight. Dr is treating with antibiotics. Anyone else getting this situation?

  • Susan 22 October 2021

    Hi all. Really interesting reading other’s comments. I’m a 59yo registered nurse. My aortic valve stenosis was found incidentally when I was getting put to sleep for an unrelated operation. I have been on meds for 8 months now, and the cardiologist told me today that my condition is worse than it was. So I’ll need a valve replacement and possible coronary artery bypass at the same time - open heart surgery. All pretty frightening!

  • Jim 4 October 2021

    At 63 I had my bicuspid aortic valve replaced at Morristown hospital by Dr John Brown. I was in very good shape before and great now. It was done March 2021 and no problems.

  • james 1 October 2021

    Hi everyone, I have just been informed that I will need to have open heart surgery to replace my aortic valve. Looking over and reading some of your comments has helped me a lot. Think I’m more concerned about the recovery time, how long it would be to get back to normal etc, worried more about taking time off work and paying bills than I should be. But still looking forward to getting back to my old self. Again thank you all. From Bristol UK

  • ruth 10 September 2021

    Just a brief update on where I’m at after 7 and 8 ys of having two aortic valve ops to replace my malfunctioning valve. Im doing really well, power walking up to 2 hrs day, enjoying life, keeping very well. Its a tough time post -op, so be kind to you and take it easy. Looking back now I can see I went back to work to soon (6 weeks afta my ops !!) was stupid of me really, but apart from feeling depressed, I was great. Take as long as you need post-op !! Kia Kaha fellow zipper club members

  • Dorothy 4 September 2021

    Had aortic valve replacement 5 weeks ago.
    Have been getting head aches & dizziness
    for a couple of weeks. Has anyone experienced
    these symptoms.

  • Craig 8 August 2021

    Leigh. I had a mechanical aortic valve replacement done nearly 4 weeks ago. Yes you can hear it tick. Sounds kind of like a watch ticking. It’s not annoying at all. I find peace in it knowing that my valve is doing exactly what it’s stopped to, keep me alive. I’m 44 years old and I’m looking forward to many years of ticking along.

  • Leigh 28 July 2021

    Hi due for valve replacement mid August and choice is mechanical valve or tissue valve. I was leaning towards mechanical but have since been told that I may hear a ticking sound. Has anyone experienced a “tick” and if so how annoying is it?

  • Tyson 26 July 2021

    Hello all, I had a bicuspid aortic valve that they found at the start of June and operated on, replaced, and did a double bypass at the same time about 6 weeks ago. I go for my first cardiologist this week coming up, but am having a couple concerns so I thought I would ask on a couple forums. I was told that my surgery couldn’t have gone any better. I have had some issues with swelling and incision pain, and gained a fair amount of weight in a day so I called my family physician and she said that it was somewhat normal. At 6 weeks I am still dealing with my chest swelling after I go for a walk and then end up having to rest a day just to get the fluid to go down. Anyone else have any issues like this?

  • Sharon 5 June 2021

    I had aortic valve replacement and aortic aneurysm/graft repair for second time…20hours of surgery! I was sixty years old, recovery was very long & I feel that nothing is quite the same anymore after 8 years post op, I am barely functioning!  Life is hard now so wonder what will happen in the future…but know that I won’t be having anymore surgeries…

  • Jules 24 May 2021

    I am 59yo, 7 months post open heart surgery to replace a bicuspid valve and repair an aortic aneurysm. I feel better now than before surgery, but its not quite perfect. A walk of about 3000 steps leaves me somewhat fatigued and feeling heavy in my chest. Does anyone else feel the same way? Does it get better or is this how it will always be?

  • Chris 17 May 2021

    Had my bicuspid aortic valve replaced in March 2021. I am 74, have enjoyed an active healthy lifestyle. Was told when a teenager that I had a ‘murmur’ but was never discussed again until my GP sent me to a cardiologist 2 years ago as “it is very noisy in there”. Operation went well although concerns with consequent AF meant a 2 week stay in hospital. Surgeon, and all medical support outstanding. It is now 11 weeks since op and have been steadily but slowly regaining physical strength… spend 40 min a day on spin bike and hoping to get nod for real cycling this week! The follow-up heart foundation group talks offered locally have been brilliant…dietician, pharmacist, psychologist, cardiac nurses, exercise specialist. Having to work on my attitude to stay positive and fight cabin fever. I think it is important for me to set some goals, projects I can look forward to. Thank you for sharing your story Ruth.

  • Geraldine 6 April 2021

    My 74 year old husband had an aortic valve replacement in November 2019 at the Waikato Hospital. No symptoms before hand, but GP said he had a murmur. After lots of tests he had surgery. After five days in hospital, he came home and did everything they told him to do, exercise, etc. He’s managed to have his medication reduced and goes walking for an hour every day. He was anxious before the Op and feels fine now. Thank you Ruth for sharing your experience.

  • steve 31 March 2021

    Hello, I had Aortic Valve replaced March 9,2021 or 3 weeks ago. Everything went great, im healing perfect( im 62 ), I was very healthy and active before etc.. But last night I woke up to an AFIB type heart beat like 3 times. Each lasted around a minute and stopped. Not sure what that was all about and have called my Cardiologist. Anyone have any further issues right after surgery before???

  • Gerardo 8 February 2021

    Had aortic valve replaced 1/22. Feeling great. My arteries are squeaky clean! Dr Lamesla and his team did great! No pain whatsoever.

  • niall 21 January 2021

    Waiting here in the hospital to go down for my surgery for bicuspid Aortic Valve replacement.
    I’m 38 but was born with this so looking forward to getting it fixed.

  • Jerry 6 January 2021

    I just went to my cardiologist today and he says I need surgery aortic valve replacement, I’m 40 years old im really scared never went under the knife before hoping for good recovery.

  • Robert 6 December 2020

    6 months or more for me, open heart valve surgery. Do not rush it. Baby steps at 80% for now. Dealing with mild depression now. Day bye day during these uncertain times.

  • peterfi136 27 November 2020

    Thanks Ruth for sharing your story.
    I’m a 63 year old male with a tear in my aortic valve and I’m down for surgery to have an aortic valve replacement in January 2021. 
    My current condition is not “serious”, I have no artery issues or blood pressure issues only a small amount of breathlessness but ECGs show an EF less than 50%.
    The surgery is largely preventative but I’m concerned that I might be addressing the issue too early.
    The stories I hear about lasting tiredness, the rehabilitation, the risk of infection (seems to be all too frequent now) and the commitment to being on medication for the rest of your life makes the operation a daunting prospect.
    If I was 10 years older I woud have no hesitation but I’m seriously concerned about the quality of life afterwards while I’m still “young and active”.
    Any thoughts?

  • Gill 6 November 2020

    Hi I’m 4weeks post op from aortic valve replacement, and am slowly getting better.  Have had some tough days,but am slowly getting there.

  • Kathy 19 October 2020

    I had aortic valve replaced five weeks ago. I am doing well but restless.  I haven’t had restless legs syndrome but my body feels like it has restless body syndrome. Sleeping is difficult.

  • Julie 14 October 2020

    I also had heart valve surgery at Morriston hospital 2 weeks ago feeling lonely due to COVID restrictions.

  • Helen 24 September 2020

    I had a aortic valve replacement 5 weeks ago and I am feeling wonderful.  Had no pain whatsoever but I do get tired.  I walk every day for 1hour usually and feel good after that.  I would highly recommend the operation.

  • Ian 24 July 2020

    I had open heart aortic valve replacement op on the 30 January this year, i was out of hospital (morriston near Swansea in the U.K.) within four days, was a little sore for ten days and found i could move quite freely after that. Was sleeping on my side after six weeks. Now after six months im back to my old self with no breathing difficulties, the only noticable change is that i get tired for no reason and sleep a lot more, by the way im 64yrs old. I havnt been able to have any follow up consultations in this six months beause of the restrictions around covid19 so i havnt seen no health proffessional in this time so im not sure if feeling tired all the time is natural after such ops.

  • Priscilla 6 July 2020

    My 57 year old husband had open heart surgery to replace a congenitally defective aortic valve. He never knew he had a problem until he was in heart failure 1/29/2020 with his efp at 25%. Valve was replaced, his heart function is up to 40%. My question is how long should we expect the fatigue to stick around, considering all he’s been through and his efp only at 40 still? I’m starting to feel a little afraid because he seems so tired still. Thanks for any comments back.

  • Dave 20 June 2018

    I just had a bicuspid aortic valve replaced. I am one week past that. I was i great shape and great health. But this will clearly take 4-8 weeeks time..

  • Liz 30 September 2017

    Thank you Ruth
    From another registered nurse with heart valve defect from ?rheumatic fever now pondering valve surgery your story is very helpful.

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