This forum was a game changer for me pre-op, so I'd like to give back by sharing my experience.
TLDR: I had a mechanical St Jude 8 weeks ago. Bentall Procedure. Recovery is going well but struggling to manage INR consistently.
36 y/o male
Born in Ireland, living in Australia
Diagnosis
In 2018, I was working on a vineyard in France and got a tick bite. When I returned home to Ireland, I broke out in a rash with high temp spikes so I presented to the ED. A young doctor who wanted to specialise in cardiology asked if he could practice a full assessment on me. Side note: I worked in this hospital for 3 years as a physiotherapist so was more than happy to facilitate any person's learning. After listening to my chest, he said "Has anyone ever told you that you have a heart murmer?". And so it began. I was sent for an echo which showed a bicuspid aortic valve with moderate - severe regurgitation. I was shocked tbh. The week before, I ran a 5k in under 20 minutes and had done marathons and triathlons in my teens and early twenties. I exercised 6 days a week and never noticed any symptoms.
Following this, I took a short term contract working on a cardiac surgery ward in Northern Ireland. I worked there for 10 weeks and learned everything I could about bicuspid valves. I even talked the surgeons into allowing me to watch an AVR which was good for learning but scared me a bit if I'm honest!
I saw my cardiologist every 6 months for an echo. He initially advised that I would need surgery in my 60s but each time I went, that number was reduced. As the regurgitation moved to severe, the echo results also started to show mild -mod stenosis. I was on no medication. I was advised to keep my HR below 150 but continued running up to 8k (slowly with a HR monitor), gym x 2/week, yoga, pilates, surfing, ocean swimming. I did whatever I felt like tbh. The only thing that seemed to change was my tolerance for hiking was massively reduced. For some reason, I could run 5-8k no problem and completed the stress echo tests but if I hiked more than 2 hours, I was wiped! I still don't know the reasoning behind this.
Although my echo results got worse, since it wasn't affecting my exercise tolerance, my cardiologist advised to hold off on the surgery until I really needed it. This was because he assumed I would want a tissue valve and a year or two extra before insertion would give me an additional year or two longer before the first valve would wear out and need to be replaced. I had an echo in April 2024 that showed my left ventricle was mildly dilated and the ventricle wall was mildly thickened. I decided to contact a couple of surgeons to discuss my options as I wanted to give my heart the best chance of remodelling post op and didn't want to wait for further changes.
Valve Selection
I found this part difficult and can't express enough gratitude for the people on this forum. Before speaking with surgeons and finding this forum, I was 100% sure I wanted a Ross procedure. The thought of warfarin for life scared me and I thought a tissue valve would wear out in under 10 years in someone with my activity levels. I spoke to two surgeons in Australia and one in Ireland.
Peter Skillington in Melbourne
As the Ross is the most difficult surgical option, I wanted someone who had done hundreds of them and could show me results. Peter has decades of experience doing the Ross. I had a consultation with him over Zoom. He discussed the 3 surgical options of tissue, mechanical and Ross and didnt push me toward any of them. After a CTCA, he felt I would be a good canditate for the Ross but that I should also consider a plan B which he felt a mechanical valve would be a good option at my age. He felt a tissue valve is almost contraindicated at my age because you are signing up for at least 2 more surgeries in the future. I hadn't really thought about mechanical because as soon as I heard warfarin, I disqualified it but Peter highlighted that the longevity of the valve is excellent and it could mean no further surgeries. This led me down the path of doing months of research and speaking with people who had gone through a Ross and then Mechanical or had a tissue followed by another tissue. Most said they would go mechanical in my position as going under the knife a second or third time is no fun. Thank you to everyone on this forum who helped me make this decision - Shoutout to - shoutout @pellicle @DJ-Rae09 @acki46 @ckeogh @Freek @-andrew- @Chuck C @vitdoc and anyone else who took the time to respond to my questions.
Paul Jansz in Sydney
At St Vincents in Sydney, they are experts in tissue valves. Paul was very genuine and similiar to Peter, he presented me with the 3 options and pros and cons of each rather than ushering me in any direction. At the end of the call, I decided a mechanical valve was what I wanted for the longevity.
Mark Redmond in Dublin
As my family is all in Ireland, I decided I wanted to have the surgery there in case anything went wrong. The thought of dying in Australia didn't sit well with me. Mark does Ross and Mechanical and took his time discussing the pros and cons of each. I decided I wanted mechanical and requested the St Jude. He also does Onx but after working in medical devices for 2 years, I feel that the product with the most compelling data is best. The St Jude has more long-term data and I felt the data supporting the lower INR for Onx was weak and more of a marketing effort to gain a competitive advantage. This is just my opinion which could be false.
After reviewing my scans, Mark highlighted that my aortic root was on the verge of mild dilation (40mm). He suggested doing a Bentall procedure to reduce my risk of reoperation. I wasn't happy at first because the thought of cutting out more of my aorta didn't appeal to me and the other surgeons hadn't mentioned it. After reading many research papers, I understood his reasoning and agreed this was a good call to reduce the risk of a future aneurysm.
Inpatient Stay
I had my surgery at the Mater Public Hospital in Dublin. The first few days were rough. The morphine-based drugs made me nauseous and I seemed to shake when I took them. After 3 days I decided to go off them and stayed on regular paracetamol and Ibuprofen. I also needed difene a couple of times. I had 3 drains which were removed on day 3 - This was scary but the nurse was excellent. I had 3 temp spikes and coughed some green sputum so they put me on a weeks course of IV Taz (antibiotic). I also had a mild pericardial effusion post op and my INR took 2 weeks to get to above 2. Managing my emotions and sleeping were the hardest things in hospital. I was discharged 14 days post op and things got a lot better from there.
Recovery
I'm almost 9 weeks post op. I started with short walks slowly building up to 5km at around the 4 week mark.
I flew back from Dublin - Sydney at 7 weeks post op after I was discharged from the surgical team
I started cardiac rehab this week at Prince of Wales.
I did my first run/walk yesterday keeping my HR below 150. I ran for 1km and walked for 30 seconds x 5. I was on a runner's high for the rest of the day!
I've been told no swimming, surfing or heavy upper limb weights until at least 12 weeks
The only thing I'm struggling with it my INR. It was fine for 6 weeks in Ireland (between 2-3). Since returning to Australia, it's been 1.4 and 1.5. I'm taking clexane injections twice per day and warfarin has been increased from 9 to 12. If anyone has experience with warfarin management, I would really appreciate your input.
Things I learned/wish I knew
There is no one size fits all when it comes to valve selection. Evaluate the options, speak with surgeons, and decide what option is best for you and your lifestyle.
Ticking / thudding sound is louder than expected. It took me 6 weeks to get into a good sleep routine. Thankfully I'm sleeping great since returning to Australia.
Warfarin is not as scary as I thought. Most people are suitable for home testing and dont need to adjust their diet. I'm aware I've only been on this drug 8 weeks so there may be complications to come but hopefully not.
Hospital food sucks haha. Thankfully my partner brought in food for lunch and dinner. I would recommend planning for this.
If anyone has questions, just reach out. I'm happy to repay the support I received from members of this forum.
TLDR: I had a mechanical St Jude 8 weeks ago. Bentall Procedure. Recovery is going well but struggling to manage INR consistently.
36 y/o male
Born in Ireland, living in Australia
Diagnosis
In 2018, I was working on a vineyard in France and got a tick bite. When I returned home to Ireland, I broke out in a rash with high temp spikes so I presented to the ED. A young doctor who wanted to specialise in cardiology asked if he could practice a full assessment on me. Side note: I worked in this hospital for 3 years as a physiotherapist so was more than happy to facilitate any person's learning. After listening to my chest, he said "Has anyone ever told you that you have a heart murmer?". And so it began. I was sent for an echo which showed a bicuspid aortic valve with moderate - severe regurgitation. I was shocked tbh. The week before, I ran a 5k in under 20 minutes and had done marathons and triathlons in my teens and early twenties. I exercised 6 days a week and never noticed any symptoms.
Following this, I took a short term contract working on a cardiac surgery ward in Northern Ireland. I worked there for 10 weeks and learned everything I could about bicuspid valves. I even talked the surgeons into allowing me to watch an AVR which was good for learning but scared me a bit if I'm honest!
I saw my cardiologist every 6 months for an echo. He initially advised that I would need surgery in my 60s but each time I went, that number was reduced. As the regurgitation moved to severe, the echo results also started to show mild -mod stenosis. I was on no medication. I was advised to keep my HR below 150 but continued running up to 8k (slowly with a HR monitor), gym x 2/week, yoga, pilates, surfing, ocean swimming. I did whatever I felt like tbh. The only thing that seemed to change was my tolerance for hiking was massively reduced. For some reason, I could run 5-8k no problem and completed the stress echo tests but if I hiked more than 2 hours, I was wiped! I still don't know the reasoning behind this.
Although my echo results got worse, since it wasn't affecting my exercise tolerance, my cardiologist advised to hold off on the surgery until I really needed it. This was because he assumed I would want a tissue valve and a year or two extra before insertion would give me an additional year or two longer before the first valve would wear out and need to be replaced. I had an echo in April 2024 that showed my left ventricle was mildly dilated and the ventricle wall was mildly thickened. I decided to contact a couple of surgeons to discuss my options as I wanted to give my heart the best chance of remodelling post op and didn't want to wait for further changes.
Valve Selection
I found this part difficult and can't express enough gratitude for the people on this forum. Before speaking with surgeons and finding this forum, I was 100% sure I wanted a Ross procedure. The thought of warfarin for life scared me and I thought a tissue valve would wear out in under 10 years in someone with my activity levels. I spoke to two surgeons in Australia and one in Ireland.
Peter Skillington in Melbourne
As the Ross is the most difficult surgical option, I wanted someone who had done hundreds of them and could show me results. Peter has decades of experience doing the Ross. I had a consultation with him over Zoom. He discussed the 3 surgical options of tissue, mechanical and Ross and didnt push me toward any of them. After a CTCA, he felt I would be a good canditate for the Ross but that I should also consider a plan B which he felt a mechanical valve would be a good option at my age. He felt a tissue valve is almost contraindicated at my age because you are signing up for at least 2 more surgeries in the future. I hadn't really thought about mechanical because as soon as I heard warfarin, I disqualified it but Peter highlighted that the longevity of the valve is excellent and it could mean no further surgeries. This led me down the path of doing months of research and speaking with people who had gone through a Ross and then Mechanical or had a tissue followed by another tissue. Most said they would go mechanical in my position as going under the knife a second or third time is no fun. Thank you to everyone on this forum who helped me make this decision - Shoutout to - shoutout @pellicle @DJ-Rae09 @acki46 @ckeogh @Freek @-andrew- @Chuck C @vitdoc and anyone else who took the time to respond to my questions.
Paul Jansz in Sydney
At St Vincents in Sydney, they are experts in tissue valves. Paul was very genuine and similiar to Peter, he presented me with the 3 options and pros and cons of each rather than ushering me in any direction. At the end of the call, I decided a mechanical valve was what I wanted for the longevity.
Mark Redmond in Dublin
As my family is all in Ireland, I decided I wanted to have the surgery there in case anything went wrong. The thought of dying in Australia didn't sit well with me. Mark does Ross and Mechanical and took his time discussing the pros and cons of each. I decided I wanted mechanical and requested the St Jude. He also does Onx but after working in medical devices for 2 years, I feel that the product with the most compelling data is best. The St Jude has more long-term data and I felt the data supporting the lower INR for Onx was weak and more of a marketing effort to gain a competitive advantage. This is just my opinion which could be false.
After reviewing my scans, Mark highlighted that my aortic root was on the verge of mild dilation (40mm). He suggested doing a Bentall procedure to reduce my risk of reoperation. I wasn't happy at first because the thought of cutting out more of my aorta didn't appeal to me and the other surgeons hadn't mentioned it. After reading many research papers, I understood his reasoning and agreed this was a good call to reduce the risk of a future aneurysm.
Inpatient Stay
I had my surgery at the Mater Public Hospital in Dublin. The first few days were rough. The morphine-based drugs made me nauseous and I seemed to shake when I took them. After 3 days I decided to go off them and stayed on regular paracetamol and Ibuprofen. I also needed difene a couple of times. I had 3 drains which were removed on day 3 - This was scary but the nurse was excellent. I had 3 temp spikes and coughed some green sputum so they put me on a weeks course of IV Taz (antibiotic). I also had a mild pericardial effusion post op and my INR took 2 weeks to get to above 2. Managing my emotions and sleeping were the hardest things in hospital. I was discharged 14 days post op and things got a lot better from there.
Recovery
I'm almost 9 weeks post op. I started with short walks slowly building up to 5km at around the 4 week mark.
I flew back from Dublin - Sydney at 7 weeks post op after I was discharged from the surgical team
I started cardiac rehab this week at Prince of Wales.
I did my first run/walk yesterday keeping my HR below 150. I ran for 1km and walked for 30 seconds x 5. I was on a runner's high for the rest of the day!
I've been told no swimming, surfing or heavy upper limb weights until at least 12 weeks
The only thing I'm struggling with it my INR. It was fine for 6 weeks in Ireland (between 2-3). Since returning to Australia, it's been 1.4 and 1.5. I'm taking clexane injections twice per day and warfarin has been increased from 9 to 12. If anyone has experience with warfarin management, I would really appreciate your input.
Things I learned/wish I knew
There is no one size fits all when it comes to valve selection. Evaluate the options, speak with surgeons, and decide what option is best for you and your lifestyle.
Ticking / thudding sound is louder than expected. It took me 6 weeks to get into a good sleep routine. Thankfully I'm sleeping great since returning to Australia.
Warfarin is not as scary as I thought. Most people are suitable for home testing and dont need to adjust their diet. I'm aware I've only been on this drug 8 weeks so there may be complications to come but hopefully not.
Hospital food sucks haha. Thankfully my partner brought in food for lunch and dinner. I would recommend planning for this.
If anyone has questions, just reach out. I'm happy to repay the support I received from members of this forum.
