Considering the Ross procedure

[pellicle]

Hi

things are often easier when you have the decision taken away from you and not the option of choice!

another person you may want to reach out to is this lady; she's had a different history (so not the Ross) but you may find it beneficial to read some of her story

https://www.valvereplacement.org/threads/its-done-and-im-home.889785/

and earlier posts

https://www.valvereplacement.org/th...tion-of-heart-valve.889401/page-3#post-929978

While she's a fellow Australian and her history is (on the surface of things) she covers things which are distinctly female issue and nothing I suffered; it makes interesting reading if nothing else.

Best Wishes

 

[ARossGuy]

Hi daVinci
As a Ross Procedure (RP) recipient, I'd figure I'll share my experience with the Ross. Please keep in mind that my experience is just one data point in the thousands of RPs performed to date.

Although I had a heart murmur all my life, it eventually proved to be due to a bicuspid aortic valve which progressed to aortic stenosis and regurgitation. I progressed to severe at which time I was referred to a thoracic surgeon who specialized in Ross Procedures as well as traditional AVRs. At the time, I was 42 (in 2004) and the Ross Procedure was becoming a popular option in addition to Mechanical or Bioprosthetic valve replacements. My surgeon recommended the Ross since I was deemed a good fit. At the time, the Ross community thinking was that the replaced pulmonary valve would last between 25 and 30 years, and that a transcatheter valve (TPVR) might be used as an option for future PV dysfunction/ replacement although TAVR and TPVR were relatively new technologies in 2004.

I had considered going mechanical but did not know much about ACT at the time, so I went with the Ross as my surgeon had done many RPs, with great success. The surgery was uneventful and recovery was fast. I continued to have my yearly echos but my autograph aortic valve began to leak due to the dilation of the aortic root (due to possible connective tissue dissorder in BAV patients???). After 7 years (2011), I was referred back to my surgeon who told me he can repair the root to reduce/eliminate the regurgitation, however, I did not want to have to risk another future OHS, so I elected to get an ON-X mechanical valve with a dacron graft ( due to the dilation of the root and ascending aorta). I chose the ON-X, but not for the lower ACT recommendation since the results of that study were not published before 2011.

To this date, I have had no issues with my ON-X mechanical valve. It is very quiet and I self manage my ACT. I maintain a 2.0 to 3.0 INR range and believe that the advertised ON-X lower ACT regimen is way too risky. At 20 years now, my pulmonary homograph (which was a cryopreserved cadaver homograph when implanted) is moderately stenotic and regurgitant and will need intervention within the next 2 to 7 years. My current thorasic surgeon has been using Edwards TPVRs in her RP patients that have PV dysfunction and are suitable candidates. So, 20 years down the road from the RP, I have to consider what my best course of action will be to fix the PV issue. There is scant data on the long term outcomes of TPVRs and valve-in-valve TPVRs, although there is some data on VIV aortic valve redos that isn't particulary great in my opinion.

So, in summary, any necessary valve replacement is better than not doing anything. I still stand by decision to do the Ross at the time, but knowing now what I did not know back then, I would have just gone with the "one and done" OHS using a mechanical valve at age 42.
Again, this is just my story and there are many RP patients that have had no issues with their transplanted aortic valves, but will eventually have to face the PV issue later on. The use of TPVR is not a guarantee since you be sure that the coronary arteries are not susceptable to compression during the valve inflation/ expansion process. Just somethings to consider if you are leaning to the Ross. Best of luck on your decision!

 

[tommyboy14]

I would just like to add something that @ARossGuy said about TPVR.

TPVR has very high endocarditis rates.

This recent study shows and after 10 years, 20% of patients had endocarditis. That is incredibly high relative to all other valve replacements.
https://www.jacc.org/doi/10.1016/j.jacc.2021.05.044

For this reasons, apparently many ross surgeons prefer to change the pulmonary homograft surgically.

 

[-andrew-]

Hi, I'm another person that had the Ross procedure - also in the UK (Freeman). I lose track of the dates, but first op (the Ross) was in 2002, second was about 13 years later (to attempt an aortic valve repair and put a graft on the root), third was just over a year after that to replace the AV with a bovine value. I've had a couple of bouts of endocarditis. I'm now about 9/10? years down the line from the 3rd surgery and likely gearing up for another to replace one or both valves.

As you may have guessed, I wasn't keen on the idea of a mechanical and was keen to see if the Ross could provide me with many years of surgery free life. 13 years wasn't too bad! I have read the wise words of others on hear and will probably soon find out for myself what a mechanical valve and anticoagulants are like to live with, but I wanted to avoid that personally. Various reasons for that relating to my lifestyle, job and character but none that are probably worth listing on here because their validity can be challenged and I think often the reasons come down to a very personal choice.

I still don't regret the decision to have a Ross and have really enjoyed the time I've had between surgeries and the lack of having to take medication daily and really give a second thought to my heart condition. Also, I personally haven't found the operations too challenging but I've always gone into them very fit and healthy and have been lucky enough to not have had any complications. I suspect I have some tougher times to come now I'm facing a 4th surgery.

If the main driver for considering a Ross is related to the option of having kids in the future, could an option not be to have a 'straightforward' tissue AV replacement which would hopefully provide enough time for kids and then go for a mechanical after that? That way it's only 1 valve affected and hopefully just 2 ops. I haven't got the experience of others on here so please take that with a pinch of salt!

Whatever you choose, I hope all goes well. The NHS has it's brilliant bits and for me at least, cardiac care has certainly been one of those.

 

[daVinci]

Thanks @pellicle . Just such a hard choice to make... I have a young baby and being there for the long term is the most important thing

Hi daVinci
As a Ross Procedure (RP) recipient, I'd figure I'll share my experience with the Ross. Please keep in mind that my experience is just one data point in the thousands of RPs performed to date.

Although I had a heart murmur all my life, it eventually proved to be due to a bicuspid aortic valve which progressed to aortic stenosis and regurgitation. I progressed to severe at which time I was referred to a thoracic surgeon who specialized in Ross Procedures as well as traditional AVRs. At the time, I was 42 (in 2004) and the Ross Procedure was becoming a popular option in addition to Mechanical or Bioprosthetic valve replacements. My surgeon recommended the Ross since I was deemed a good fit. At the time, the Ross community thinking was that the replaced pulmonary valve would last between 25 and 30 years, and that a transcatheter valve (TPVR) might be used as an option for future PV dysfunction/ replacement although TAVR and TPVR were relatively new technologies in 2004.

I had considered going mechanical but did not know much about ACT at the time, so I went with the Ross as my surgeon had done many RPs, with great success. The surgery was uneventful and recovery was fast. I continued to have my yearly echos but my autograph aortic valve began to leak due to the dilation of the aortic root (due to possible connective tissue dissorder in BAV patients???). After 7 years (2011), I was referred back to my surgeon who told me he can repair the root to reduce/eliminate the regurgitation, however, I did not want to have to risk another future OHS, so I elected to get an ON-X mechanical valve with a dacron graft ( due to the dilation of the root and ascending aorta). I chose the ON-X, but not for the lower ACT recommendation since the results of that study were not published before 2011.

To this date, I have had no issues with my ON-X mechanical valve. It is very quiet and I self manage my ACT. I maintain a 2.0 to 3.0 INR range and believe that the advertised ON-X lower ACT regimen is way too risky. At 20 years now, my pulmonary homograph (which was a cryopreserved cadaver homograph when implanted) is moderately stenotic and regurgitant and will need intervention within the next 2 to 7 years. My current thorasic surgeon has been using Edwards TPVRs in her RP patients that have PV dysfunction and are suitable candidates. So, 20 years down the road from the RP, I have to consider what my best course of action will be to fix the PV issue. There is scant data on the long term outcomes of TPVRs and valve-in-valve TPVRs, although there is some data on VIV aortic valve redos that isn't particulary great in my opinion.

So, in summary, any necessary valve replacement is better than not doing anything. I still stand by decision to do the Ross at the time, but knowing now what I did not know back then, I would have just gone with the "one and done" OHS using a mechanical valve at age 42.
Again, this is just my story and there are many RP patients that have had no issues with their transplanted aortic valves, but will eventually have to face the PV issue later on. The use of TPVR is not a guarantee since you be sure that the coronary arteries are not susceptable to compression during the valve inflation/ expansion process. Just somethings to consider if you are leaning to the Ross. Best of luck on your decision!

Thanks for sharing your Ross experience, I'm sorry you were unlucky with the dilation.. I know they have new techniques to prevent that now. Will check out the information on valve in valve replacements you've told me, haven't got around to reading the literature on that aspect of things yet so it's good to have a heads up. So much to weigh up.

I would just like to add something that @ARossGuy said about TPVR.

TPVR has very high endocarditis rates.

This recent study shows and after 10 years, 20% of patients had endocarditis. That is incredibly high relative to all other valve replacements.
https://www.jacc.org/doi/10.1016/j.jacc.2021.05.044

For this reasons, apparently many ross surgeons prefer to change the pulmonary homograft surgically.

Will definitely be speaking to the surgeon about this, thank you.

Hi, I'm another person that had the Ross procedure - also in the UK (Freeman). I lose track of the dates, but first op (the Ross) was in 2002, second was about 13 years later (to attempt an aortic valve repair and put a graft on the root), third was just over a year after that to replace the AV with a bovine value. I've had a couple of bouts of endocarditis. I'm now about 9/10? years down the line from the 3rd surgery and likely gearing up for another to replace one or both valves.


If the main driver for considering a Ross is related to the option of having kids in the future, could an option not be to have a 'straightforward' tissue AV replacement which would hopefully provide enough time for kids and then go for a mechanical after that? That way it's only 1 valve affected and hopefully just 2 ops. I haven't got the experience of others on here so please take that with a pinch of salt!

Whatever you choose, I hope all goes well. The NHS has it's brilliant bits and for me at least, cardiac care has certainly been one of those.

Thank you for sharing your experiences. I hope so regarding the NHS... cardiac care I'm really happy with, it's the waiting list that worries me. I know I'll likely get worse before it's time and I think I've been in poor health for longer than I'd admitted... was struggling during pregnancy and have felt better than I did then since, but life with a newborn just passes you by really and now I'm out of breath lifting up my baby, such is life.

 

[pellicle]

Just such a hard choice to make... I have a young baby and being there

I understand, ultimately only you can decide and only you bear the consequences (all decisions have them). There is no cure, no definitve perfect choice.

Knowing what I know and having been 28 and having made it to 48 (for my third) I can clearly say "I'm glad only one valve was stuffed with".

That's why I suggested cryopreserved homograft to get you by. I've presently got an arrhythmia (tachycardia) which I have no doubt stems from the iterative cycle of surgery healing, degrading and surgery... I'mok with that as right now it's well controlled with a small dose of metoprolol.

These "out of the 9 dot" solutions definitely require world class experts and continuous experience in that realm.

Best wishes

 

[Chuck C]

Hi daVinci
As a Ross Procedure (RP) recipient, I'd figure I'll share my experience with the Ross. Please keep in mind that my experience is just one data point in the thousands of RPs performed to date.

Although I had a heart murmur all my life, it eventually proved to be due to a bicuspid aortic valve which progressed to aortic stenosis and regurgitation. I progressed to severe at which time I was referred to a thoracic surgeon who specialized in Ross Procedures as well as traditional AVRs. At the time, I was 42 (in 2004) and the Ross Procedure was becoming a popular option in addition to Mechanical or Bioprosthetic valve replacements. My surgeon recommended the Ross since I was deemed a good fit. At the time, the Ross community thinking was that the replaced pulmonary valve would last between 25 and 30 years, and that a transcatheter valve (TPVR) might be used as an option for future PV dysfunction/ replacement although TAVR and TPVR were relatively new technologies in 2004.

I had considered going mechanical but did not know much about ACT at the time, so I went with the Ross as my surgeon had done many RPs, with great success. The surgery was uneventful and recovery was fast. I continued to have my yearly echos but my autograph aortic valve began to leak due to the dilation of the aortic root (due to possible connective tissue dissorder in BAV patients???). After 7 years (2011), I was referred back to my surgeon who told me he can repair the root to reduce/eliminate the regurgitation, however, I did not want to have to risk another future OHS, so I elected to get an ON-X mechanical valve with a dacron graft ( due to the dilation of the root and ascending aorta). I chose the ON-X, but not for the lower ACT recommendation since the results of that study were not published before 2011.

To this date, I have had no issues with my ON-X mechanical valve. It is very quiet and I self manage my ACT. I maintain a 2.0 to 3.0 INR range and believe that the advertised ON-X lower ACT regimen is way too risky. At 20 years now, my pulmonary homograph (which was a cryopreserved cadaver homograph when implanted) is moderately stenotic and regurgitant and will need intervention within the next 2 to 7 years. My current thorasic surgeon has been using Edwards TPVRs in her RP patients that have PV dysfunction and are suitable candidates. So, 20 years down the road from the RP, I have to consider what my best course of action will be to fix the PV issue. There is scant data on the long term outcomes of TPVRs and valve-in-valve TPVRs, although there is some data on VIV aortic valve redos that isn't particulary great in my opinion.

So, in summary, any necessary valve replacement is better than not doing anything. I still stand by decision to do the Ross at the time, but knowing now what I did not know back then, I would have just gone with the "one and done" OHS using a mechanical valve at age 42.
Again, this is just my story and there are many RP patients that have had no issues with their transplanted aortic valves, but will eventually have to face the PV issue later on. The use of TPVR is not a guarantee since you be sure that the coronary arteries are not susceptable to compression during the valve inflation/ expansion process. Just somethings to consider if you are leaning to the Ross. Best of luck on your decision!

Hi ARossGuy.
Some great info here. Thank you so much for shaing your story for the benefit of others.

I still stand by decision to do the Ross at the time, but knowing now what I did not know back then, I would have just gone with the "one and done" OHS using a mechanical valve at age 42.

I think that this is some really good feedback. I think that it is psychologically healthy to accept the choices that we have made, knowing that we made those choices using the best data that we had at the time. And, at the same time, you are acknowledging that you would have made a different choice, knowing what you know now. That second part is something that can benefit others, as they can have the benefit of knowing right now, what you didn't know back then.

Wishing you the best of luck in your pulmonary valve procedure 2 to 7 years from now. Hopefully it will be more towards the 7 year part of that spectrum.

 

[Chuck C]

Hi, I'm another person that had the Ross procedure - also in the UK (Freeman). I lose track of the dates, but first op (the Ross) was in 2002, second was about 13 years later (to attempt an aortic valve repair and put a graft on the root), third was just over a year after that to replace the AV with a bovine value. I've had a couple of bouts of endocarditis. I'm now about 9/10? years down the line from the 3rd surgery and likely gearing up for another to replace one or both valves.

As you may have guessed, I wasn't keen on the idea of a mechanical and was keen to see if the Ross could provide me with many years of surgery free life. 13 years wasn't too bad! I have read the wise words of others on hear and will probably soon find out for myself what a mechanical valve and anticoagulants are like to live with, but I wanted to avoid that personally. Various reasons for that relating to my lifestyle, job and character but none that are probably worth listing on here because their validity can be challenged and I think often the reasons come down to a very personal choice.

I still don't regret the decision to have a Ross and have really enjoyed the time I've had between surgeries and the lack of having to take medication daily and really give a second thought to my heart condition. Also, I personally haven't found the operations too challenging but I've always gone into them very fit and healthy and have been lucky enough to not have had any complications. I suspect I have some tougher times to come now I'm facing a 4th surgery.

If the main driver for considering a Ross is related to the option of having kids in the future, could an option not be to have a 'straightforward' tissue AV replacement which would hopefully provide enough time for kids and then go for a mechanical after that? That way it's only 1 valve affected and hopefully just 2 ops. I haven't got the experience of others on here so please take that with a pinch of salt!

Whatever you choose, I hope all goes well. The NHS has it's brilliant bits and for me at least, cardiac care has certainly been one of those.

Great info Andrew.
We don't have many Ross patients here on the forum, so it is really valuable that you and ARossGuy are willing to share your experience for the benefit of daVinci and others.

Sorry that things did not work out and that you will be facing OHS #4, but you have a great attitude about it. I think that it's great that you went into the first 3 fit and strong and hope that you do the same for #4.

If the main driver for considering a Ross is related to the option of having kids in the future, could an option not be to have a 'straightforward' tissue AV replacement which would hopefully provide enough time for kids and then go for a mechanical after that? That way it's only 1 valve affected and hopefully just 2 ops

I think that is very reasonable advice. The next best thing to being one and done, is to be two and done. Most people seem to be able to handle two OHS relatively well and this option would give a person the opportunity to have children without ACT complications. I think it can also be a good choice for professional athletes in contact sports who want to get a few more years in their career.