My Experience with the Ross Procedure

[Tteale]

Hi. I am new to the forum. I wanted to chime in on the Ross. I had the Ross Procedure in 1996 when I was 22. I never regret the decision. I was and continue to be very active and at a young age I did not want to worry about taking medicine. It has been 17 years since my Ross procedure and I have had no issues in the past 17 years. For young, active people I think the Ross procedure is great.

Seventeen great years later I found out I need to replace my valve again. With my last check up in September 2013 I was told it is time to replace the valve. I will have surgery in the next few months at Stanford in California. The same surgeon that performed my Ross 17 years ago will perform my next surgery.

I am still deciding on what kind of valve replacement I will undergo. For me the Ross was the only way to go when I was 22.

M

Hi M!

Really curious to hear how you are going?

 

[pellicle]

Gosh I should have reached out a long time ago, I’ve always felt like I’ve been siloed from ‘normal’ people.

There is nobody I've met in my daily life (not at a clinic) who has had a valve replacement. I know one fellow (much older) who's the father of a friend who had CAB surgery but no other valvers except here.

Personally that's never bothered me and I just got on with doing things. Being here has helped me to see the journeys others have had and how its effected them.

I'm glad I've been able to help a few people along the way.

 

[Tteale]

I’ve not posted on this forum for a very long time, but like many others I've gained so much knowledge and confidence from reading the various discussions on here. Thanks everyone for that support!

I have seen various discussions relating to the Ross Procedure (RP) and know that people come to this forum when making the tough decision on valve type. Therefore, for young adults that are in a similar position to that which I was in 11 years ago, I’ve summarised my experience with the RP below.

In 2002 at the age of 26 I had a RP to correct a leaking, calcified bicuspid aortic valve. I had no outward symptoms before surgery other than a short TIA 2 years before the operation. The surgery was performed in the UK by a respected surgeon who had performed many RPs previously, albeit on mainly younger (as young as <1 month!) patients.

I chose the RP for a number of reasons:

1. My surgeon worked out of my local hospital (The Freeman in Newcastle, UK), only 30 miles from home, and his recommendation for me was a RP.

2. My cardiologist was also very positive and confident about the potential outcomes of RPs, to the extent that his view was that the RP could last a normal lifetime. Thanks to this forum and reviewing various online articles / papers I never allowed myself to buy into this positivity and always assumed that I would need at least 1, probably more, repeat surgeries in my lifetime. However, it was still encouraging to see a medical professional that held such a positive outlook.

3. At the time, I was not keen to take on the responsibility of managing my INR levels and taking Coumadin for life. I wanted to minimise (and ideally avoid) any type of on-going medication and the RP potentially enabled this.

4. The RP was still a relatively ‘new’ procedure and the techniques for performing it and so potentially its lifetime were still developing. I was encouraged by the potential this offered and was happy to take the associated risk of the uncertainty of a developing procedure.

5. I was (and still am) a very active person (swimming, triathlon, road & mountain biking and snowboarding). At the time I thought that choosing a mechanical valve could limit these activities. I see from various posts on this site that this would probably not have been the case.

My surgery was uneventful (as the docs say!) and I was back to cycling, running and swimming within 6 weeks. I also managed the Great North Run half marathon 6 months after my surgery (although just missed beating the 2 hour barrier, which still alludes me but mainly because I’m a poor runner – nothing to do with my heart!). I think going into the surgery in good shape really helped.

For 10 years, the RP gave me exactly what I’d hoped for and other than my 6 / 12 month check-ups, my lifestyle was completely unchanged from before surgery. For 99% of the time I gave absolutely no consideration to my heart condition and just lived a normal, healthy lifestyle. Unfortunately, as now seems to be a common outcome in some patients who’ve had the RP, my aortic root became dilated over a period of 1.5 years and a final size of 5.7 cm led to repeat surgery this year. I understand that after somewhere around 2003 – 05 (in the UK at least), this failure mechanism became more well-known and that current RPs involve supporting the root if appropriate at the time of the original surgery.

I agreed to have a valve-sparing aortic root replacement conducted by the same surgeon at the same hospital, which was conducted 3 weeks ago. Apparently, both the aortic and pulmonary valves were in good condition and the function of the aortic valve seen in the echo performed 1 week after the surgery was good. My surgeon (who admits to being an optimistic person), sees no reason why the repair will not provide me with 20-30 years of operation-free living. I’m sceptical of that but happy to try and prove him right! So far, my recovery has been easier / quicker if anything than the first surgery, but it’s still early days.

So overall, although my RP failed after only 11 years, personally I am still happy with the decision I made and even with hindsight, would make the same call now. I’m now older, more responsible (slightly) and would be happy to take on the responsibility that comes with a mechanical valve and Coumadin if / when the time comes to replace one or more of my heart valves.

For me I found it so important to do my own research and to read the negative as well as positive aspects of the various options. After discussing my thoughts with my cardiologist and surgeon, I had confidence in their recommendation and my decision and went into both surgeries with a very positive outlook.

I wish everyone the best of luck in making their decisions and hope the above has helped at least a little bit.

Best wishes,

Andrew

Hi Andrew! - thank you for sharing

Would love to hear how you are going now that we are in 2021!

 

[pellicle]

Really curious to hear how you are going?

just be aware that mcsf posted that in 2013 ... and was last seen Nov 12, 2014
https://www.valvereplacement.org/members/mcsf.14778/

 

[Tteale]

just be aware that mcsf posted that in 2013 ... and was last seen Nov 12, 2014
https://www.valvereplacement.org/members/mcsf.14778/

Totally understand, gosh there’s some sadness in a few of these threads.

 

[pellicle]

Totally understand, gosh there’s some sadness in a few of these threads.

Yep
I hope you're ok
Goodnight

 

[Meanjellybean]

@Tteale

Thanks for sharing your story. I asked about a Ross for my case. The cardiologist and surgeon said no - i would be too high of a risk as i have had 3 OHS (plus one on the side) and 1 more on the way - going mechanical now.

 

[MdaPA]

On a side note, is ‘valuereplacement.org’ the best forum space for connecting with others that have had the Ross Procedure?

Tteale,
There are folks here that have had ROSS procedures. There are also folks who come here prior to their surgeries to get information regarding the various procedures and valve options, including the ROSS. As you have had a ROSS procedure, I'm sure you can provide your experiences and knowledge for the benefit of others as well!

My wife had a ROSS procedure along with a MV repair in 1997. Her AV and PV lasted 20 years and even though they were stenotic/leaking and could have last longer, they both were replaced in 2017 when her MV was severe and needed to be replaced (i.e. she got a complete over-hall).

Hoping you get another decade or 2 before your AV and/or PV's need attention and when/if they do, you can come here to see what new options and devices will be available then.

 

[Tteale]

For those that are interested, I’ve got my annual checkup next month so will share the results.

Apart from some anxiety caused by the initial event (cardiac arrest) / surgery, my life had been completely uninterrupted by my heart post surgery. I surf 3-4 times per week (hard), I’m talking 3hr sessions with my heart rate ranging between 150 - 180.

I think it’s important to do everything you can so that if you do one day cark it, or the valves start deteriorating, I know it was out of my control and I did all I can. A few examples are:
- monitoring my bloodpressure
- clean, healthy eating (take out once a week)
- low sodium (under 1,500mg / day)
- try to manage stress levels (meditate etc..) but work pressure is demanding (Corporate Sales)
- reduced alcohol intake (light beer where I can) and only a few full blow out sessions a year
- no smoking / drugs etc (I did smoke a lot of cigarettes and weed for a few years after my surgery though, as I was young and needed to get it out of my system)

I want to have kids with my GF in the next 5 yrs and will be pissed if I don’t get to see them grow up! Haha

happy to be helpful and answer anyone’s questions

 

[pellicle]

...I want to have kids with my GF in the next 5 yrs and will be pissed if I don’t get to see them grow up! Haha

That's great to hear

Best Wishes

 

[ARossGuy]

Welcome. I had my Ross done in 2004. Unfortunately I had to get an AVR redo done in 2011 since the aortic valve (originally pulmonic) started to become regurgitant since the aortic root dilated. I think it had to do the fact that my original aortic valve was bicuspid in which there may be an associative connective tissue phenomena which caused the tissue to become "stretchy" - who knows? Was offered a repair, but decided to go mechanical. Now sporting an On-X and still have the homograph on the right side that is still performing well.

Happy to hear you are doing well with your Ross!

 

[Chuck C]

@Tteale

Thanks for sharing your story. I asked about a Ross for my case. The cardiologist and surgeon said no - i would be too high of a risk as i have had 3 OHS (plus one on the side) and 1 more on the way - going mechanical now.

" i have had 3 OHS (plus one on the side) and 1 more on the way - going mechanical now. "

Does this mean that you have decided to go with "Option 1", per your Crossroads thread?

 

[Meanjellybean]

" i have had 3 OHS (plus one on the side) and 1 more on the way - going mechanical now. "

Does this mean that you have decided to go with "Option 1", per your Crossroads thread?

Yes that is correct. Saw my surgeon and confirmed.
Wafarin looks less scary in alot of ways after hearing peoples experiences.

 

[Chuck C]

Yes that is correct. Saw my surgeon and confirmed.
Wafarin looks less scary in alot of ways after hearing peoples experiences.

I believe you made the right decision. Best of luck!

 

[Chuck C]

Yes that is correct. Saw my surgeon and confirmed.
Wafarin looks less scary in alot of ways after hearing peoples experiences.

"Wafarin looks less scary in alot of ways after hearing peoples experiences."
I feel the same way. Like you, I am choosing mechanical. This board has been priceless for me. The real life experience shared by those on warfarin has really helped me understand that much of the fear of warfarin is not rational.

 

[pellicle]

has really helped me understand that much of the fear of warfarin is not rational.

yep ... mostly this:

 

[-andrew-]

Hi Tteale! I’m still lurking but not very frequently (as you can see!). I’m up to 3 ops now after having a RP when I was in my late 20s, nearly 20 years ago now, but still feeling good. Last two ops were linked to endocarditis. I’m still exercising lots although not as intensively as before (I was reasonably competitive in triathlon even after surgery #3). Recently I’ve been doing much more windsurfing. Still improving but I’ve been out on the North Sea off the north coast of the UK right through last winter in winds of up to 40mph and in snow and hail. Sensible - absolutely not, but great fun. I reckon you’ll be surfing for a looong time yet. Unless you discover a superior sport of course - like windsurfing!

 

[Tteale]

Hi Tteale! I’m still lurking but not very frequently (as you can see!). I’m up to 3 ops now after having a RP when I was in my late 20s, nearly 20 years ago now, but still feeling good. Last two ops were linked to endocarditis. I’m still exercising lots although not as intensively as before (I was reasonably competitive in triathlon even after surgery #3). Recently I’ve been doing much more windsurfing. Still improving but I’ve been out on the North Sea off the north coast of the UK right through last winter in winds of up to 40mph and in snow and hail. Sensible - absolutely not, but great fun. I reckon you’ll be surfing for a looong time yet. Unless you discover a superior sport of course - like windsurfing!

Great to hear from you Andrew! - Woah, that sounds a little more full on to what I’m doing surfing wise . Sounds like bloody great fun and I’m stoked to hear your keeping active.

Could you share a few details with your experience around Endocarditis pretty please?

- My Cardiologist is at me about skin/ oral infections, and I actually have a little oral infection now due to wisdom teeth not being out (taking Amoxicillin).

Appreciate you lurking from time to time! I try not to come on here too often as not to obsess and enjoy my life!

 

[-andrew-]

Hi! Of course. I’ve had two confirmed cases of endocarditis and a third suspected case. One doctor told me that once you’ve had it once you’re more likely to get it again. I’ve never been certain of the cause - I’ve suspected dental work and also minor open wounds so it’s right to be sensible about those without obsessing. One case which led to my second surgery came with obvious symptoms - I had a temperature, felt terrible and had lots of muscle pain. But the most recent case was subtle - no temp or significant illness but some unusual chest pain together with unexplained tiredness which luckily I got checked out. The infection settled on my pulmonary valve and did some damage but not enough to require more surgery. One tip for RP patients is to make sure the docs check the pulmonary valve too - all initial focus was on my aortic and the infection was missed initially. I was in the hospital for 6 weeks on an antibiotic drip and that got shut of it. I certainly try to be careful about keeping any wounds clean and keeping on top of teeth cleaning to minimise the need for any work. But that’s it, I’m not one to be overly cautious or worry about it - too much life to live and fun to have! 4 more hours on the water today with some big jumps landed and a new top speed! Hope the above is of some use. Take care