New here, getting Ross procedure

[Superman]

I have added a lot of gray hair since taking warfarin. It’s a bit thinner too. I’ve gained a few lbs since I started taking it. Seems to cause wrinkles around the eyes as well. And yes, I fathered five kids since being on warfarin.

Although one was legit because of warfarin. My INR wasn’t in a range the Dr was comfortable with for a certain procedure, so I had to reschedule . But he’s an awesome kid and was supposed to be here. So yay Warfarin!

But, when I started I couldn’t run a 1/2 mile without being totally gassed. Planning on 5 this morning!

 

[AZATADINE]

Thomas67, Im pretty much identical to you....I always knew I had a bicuspid aortic valve and although asymptomatic, I had mine replaced 11 months ago at age 52.

I researched everything prior to making my decision and I also took my lifestyle and activities into account (horse riding being one of them). I was concerned about valve noise and having to take anticoagulants for the rest of my life. I was concerned about horse riding in particular in terms of anticoagulants.

I asked about the Ross procedure but my surgeon did reference the fact that two valves are involved rather than just the one (aortic). It was enough to put me off. Dealing with one valve is enough for me rather than thinking about two.

Ultimately, I chose the Carpentier-Edwards Magna-Ease bovine valve. I'm very happy with my decision (understanding that I'll ultimately require another intervention at some stage).

I was on warfarin for three months post op and it wasn't as bad as I'd feared. Getting it dialled in post op was a real PITA bit it wasn't so bad after that. I'm glad to be off it but if I ever need to go on it again, I won't be too concerned as it was OK when settled down.

The most important thing is that you make a well informed decision. My biggest fear beforehand was that I'd look back after the operation and regret my decision. I don't.

 

[Chuck C]

And yes, I fathered five kids since being on warfarin.

So, there also appears to be a Viagra effect of sorts.

 

[ValveAdmin]

Welcome to the forum Tom. Wishing you all the best and good luck!

 

[Chuck C]

The most important thing is that you make a well informed decision

I totally agree. I was your age when I had my surgery 18 months ago and I chose mechanical. It sounds like we both did our due diligence, and made different choices. I consider both of our choices good ones, as we knew going in the trade offs that we were getting. To me, the thing which is unfortunate is that many make the decision uninformed, largely guided by myth. For example, people will often say things like: "Being a runner and having an active life, I chose a tissue valve." I am not saying that such individuals should feel bad at this point, no point in looking back, just live life to the fullest. But, a decision like that is based on the myth that a person can't be physically active on warfarin. As such, when we hear such sentiment here, it is important to educate about what life is really like on warfarin, to assist in the accuracy of their due diligence. I run, bike, hike mountains and do a martial arts which involves intense grappling, all on warfarin.

 

[Thomas67]

I haven't had it yet and may change my mind after reading everything here.
It's not just about the warfarin to me, there's something about having a mechanical device in my body also. It just seems so unnatural. I'll admit I'm still grappling with all of this.
Okay go ahead and flame away on me again, this time about mechanical valves.

 

[Chuck C]

Okay go ahead and flame away on me again, this time about mechanical valves.

I hope that you mean that tongue in cheek. No one here wants to flame. But, if you want to truly know what life is like with a mechanical valve, rather than speculate, there are dozens of people here who can share with you what life is like living with one.

 

[Chuck C]

I haven't had it yet and may change my mind after reading everything here.
It's not just about the warfarin to me, there's something about having a mechanical device in my body also. It just seems so unnatural. I'll admit I'm still grappling with all of this.
Okay go ahead and flame away on me again, this time about mechanical valves.

I would encourage you to communicate directly with other individuals who have had a Ross Procedure, as well. There are several members here who have had one. @spartangator just celebrated his 15th anniversary, following his Ross. He is a critical thinker and I would encourage you to reach out to him privately, as he could provide you some excellent information about life with the Ross and whether he would opt for a Ross if he had it to do all over again.

 

[cooperman]

I had the Ross at age 21 for the same reasons you mentioned. Did great for 20 years and then had to have both the aortic and pulmonary valves replaced again.

Have had a mechanical valve now for two years and being on warfarin is not as big of a deal as I thought it would be. I’m living life to the fullest. At times I think I would have been better off not having a two valve problem now due to the Ross. One mechanical valve one time and done. Surgery and recovery sucks and is very inconvenient. My pulmonary valve replacement has been tissue both times, and I hope the latest one lasts another 20 years and that tavr is as good as the doctors hope when then time comes for me to have another intervention for it so they won’t have to open me up again.

Warfarin is not a big deal, really. And my mechanical valve is very loud, but I am completely used to it and it does not bother me at all.

Wish you all the best whatever choice you make.

 

[pellicle]

No one here wants to flame.

flaming is what they do on Reddit ... what we do here (I'd like to think that this is the majority) is critical analysis and evaluation.

from: Critical analysis - University of Wollongong – UOW

What Is "Critical Analysis"?​

"Critical analysis" is a desirable skill in all aspects of your university work, but what actually is it? As Brown and Keely discuss, analysing critically is a process of deconstructing what you read, write and listen to in a rational and logical manner (2012). It requires you to move beyond describing and analysing to evaluating, criticisng and postulating on what you process.

However, while you are encouraged to critique, your response always has to be informed and well-grounded in research and wide reading. Critical analysis moves beyond simple description of a particular topic into the realms of analysis and evaluation, as visualised in the diagram below:

 

[pellicle]

If one happens to get a broken bone, its not uncommon to require parts to be placed (the picture below is a friend of mine)

frankly I'd rather have steel than something that will fail.
PS: I did tell him that scooter was a death trap (... bad steering geometery), I was wrong but yet I was right.

Sadly

 

[pellicle]

Surgery and recovery sucks and is very inconvenient.

this is a good point to raise as I know of one member here who in recovery basically lost his job and spiralled down into depression (he was a electronics engineer specialising in nuclear power plant installations. He's not messaged or emailed back to me in over 4 years now.

Of course there is absolutely no certainty that any operation will give you "one and done", there are however well known risks of outcomes involved and they can and should feature into decision making processes.

Aneurysm is one that's common later with BAV being the driver (as both Superman and I know well) so it is then a risk that the autograft valve will get pulled out and something else put in there in a subsequent surgery (meaning you'll have the bung pulmonary valve as a bonus).

In such a situation I'd say my surgeons steered me in a good direction having a homograft at 28yo.

For convenience this is the data from my institution from which decisions on potential longevity could be estimated:

Entrez PubMed

J Heart Valve Dis. 2001 May;10(3):334-44; discussion 335. Related Articles, Links The homograft aortic valve: a 29-year, 99.3% follow up of 1,022 valve replacements. O'Brien MF, Harrocks S, Stafford EG, Gardner MA, Pohlner PG, Tesar PJ, Stephens F. The Prince Charles Hospital and the St Andrew's Hospital, Brisbane, Queensland, Australia.

BACKGROUND AND AIM OF THE STUDY: The study aim was to elucidate the
advantages and limitations of the homograft aortic valve for aortic valve
replacement over a 29-year period.

RESULTS:
For all cryopreserved valves, at 15 years, the freedom was
* 47% (0-20-year-old patients at operation),
* 85% (21-40 years),
* 81% (41-60 years) and
* 94% (> 60 years).

So as it happened I was part of the 21-40 group at surgery in 1992

Thinking critically I would ask questions of that data on the reoperation of 41-60 year old patients how much of that was driven by late life aneurysm and how much was driven by Lp(a).

FWIW I got about 20 years on my homograft and was reoperated in late 2011 due primarily to aneurysm (but the valve was also failing, so I'd perhaps got 23 years from it??).

 

[rdweathers]

Hello and welcome to the forums!

Perhaps you’ve been reading here for a while? I suspect if you took a poll around here about the Ross procedure, views would generally be less than favorable (although there are fans). You take one bad valve and put the patient in the position that both the aortic and pulmonary valves will potentially need to be replaced down the road.

The pulmonary valve isn’t made for the aortic pressures and won’t last as long as it does in the pulmonary position. Then you put a tissue valve in the pulmonary position, and they don’t last forever either. Ross was a good idea, but I think that was back when they maybe didn’t consider that there would be a meaningful difference in durability between native aortic and native pulmonary valves.

If I wanted to avoid ACT (anti-coagulation therapy), I would get the best tissue valve on the market and put it in the aortic position. When that wears out, hope for the possibility of a TAVR but mentally prepare for another replacement.

As far as ACT, it’s really all I know. I’m not yet 50 and have been taking warfarin for almost 32 years. I can answer questions about that as well.

Thanks for the info on Ross procedure. My husband has a bicuspid aortic valve with severe stenosis. He is 53. He does alot of yard work and works on cars and gets cut alot. His surgeon wants him to get a mechanical because of his age. How has the ACT affected you? We are meeting with the surgeon again to ask if he can use the Inspris Resilia tissue valve that hopefully would last long enough hopefully. He also tends to drink alot on the weekends and I am worried about that too. Any advice would be appreciated.

 

[Superman]

Thanks for the info on Ross procedure. My husband has a bicuspid aortic valve with severe stenosis. He is 53. He does alot of yard work and works on cars and gets cut alot. His surgeon wants him to get a mechanical because of his age. How has the ACT affected you? We are meeting with the surgeon again to ask if he can use the Inspris Resilia tissue valve that hopefully would last long enough hopefully. He also tends to drink alot on the weekends and I am worried about that too. Any advice would be appreciated.

I can’t think of a thing in life that I’ve deliberately done or not done because of warfarin. Aside from taking as prescribed and testing periodically.

I’m guessing I do all the stuff your husband does. I’ve built a deck, assembled playground equipment, volunteered for Habitat for Humanity helping to build single family homes (complete with sawing and nail guns), finished a couple basements into living spaces in our own homes. I’ve replaced brake pads on our cars. I mow my own lawn (unless I can get the kids to do it). I even carve the Thanksgiving Turkey.

As I understand things, the occasional cut might clot slower, but that’s not the main issue. Possible internal hemorrhaging due to severe injury can be a problem. For example, if your husbands weekend consumption involves getting fall down drunk and hitting his head, that would be a concern. But I’d have to think that’s a concern for anyone.

I still run (covered almost six miles yesterday!) and bike. My wife and I hiked the Grand Canyon from the south rim to the north rim this August. I just packed my meds with me. We actually do a lot of our family trips in National Parks and state parks doing day hikes and such.

I generally eat and drink what I want trying to be somewhat healthy but also enjoy myself. I don’t spend much thought as to how things might interact with warfarin. I’ll adjust my dose after my next test if needed. You can see from my profile, I don’t have an issue with the occasional adult beverage. My wife and I went out for our anniversary dinner yesterday and I had a couple with that.

Aside from ticking and taking medication, I don’t think anyone would look and me and think, “There’s a heart patient!” Especially with the big red “S” on my shirt and this silly cape.

I guess the only thing I actively avoid are anti-inflammatory meds due to interaction. For some, Tylenol only might seem like a deal breaker. I have resorted to them if needed for short duration (threw my back out), but I test more frequently and adjust my dose as needed. Otherwise for headaches or fever, I just use Tylenol.

Hope some that sheds a little light. Feel free to ask me (or anyone else for that matter) any other questions you might have.

 

[rdweathers]

I can’t think of a thing in life that I’ve deliberately done or not done because of warfarin. Aside from taking as prescribed and testing periodically.

I’m guessing I do all the stuff your husband does. I’ve built a deck, assembled playground equipment, volunteered for Habitat for Humanity helping to build single family homes (complete with sawing and nail guns), finished a couple basements into living spaces in our own homes. I’ve replaced brake pads on our cars. I mow my own lawn (unless I can get the kids to do it). I even carve the Thanksgiving Turkey.

As I understand things, the occasional cut might clot slower, but that’s not the main issue. Possible internal hemorrhaging due to severe injury can be a problem. For example, if your husbands weekend consumption involves getting fall down drunk and hitting his head, that would be a concern. But I’d have to think that’s a concern for anyone.

I still run (covered almost six miles yesterday!) and bike. My wife and I hiked the Grand Canyon from the south rim to the north rim this August. I just packed my meds with me. We actually do a lot of our family trips in National Parks and state parks doing day hikes and such.

I generally eat and drink what I want trying to be somewhat healthy but also enjoy myself. I don’t spend much thought as to how things might interact with warfarin. I’ll adjust my dose after my next test if needed. You can see from my profile, I don’t have an issue with the occasional adult beverage. My wife and I went out for our anniversary dinner yesterday and I had a couple with that.

Aside from ticking and taking medication, I don’t think anyone would look and me and think, “There’s a heart patient!” Especially with the big red “S” on my shirt and this silly cape.

I guess the only thing I actively avoid are anti-inflammatory meds due to interaction. For some, Tylenol only might seem like a deal breaker. I have resorted to them if needed for short duration (threw my back out), but I test more frequently and adjust my dose as needed. Otherwise for headaches or fever, I just use Tylenol.

Hope some that sheds a little light. Feel free to ask me (or anyone else for that matter) any other questions you might have.

Thank you Superman, I almost typed Spiderman! That makes me feel much better. That is great that you are so active and you have such a good attitude.

 

[Thomas67]

OP here. Well after reading everything here and following good advice, I got my on-x valve last Tuesday. I got home yesterday afternoon. There were some complications though, when cutting out the old valve some of the calcification got into one of my coronary arteries. But they didn't realize this until I was out of surgery and there were some strange ekg readings. So they did an arthrogram and realized that this happened. So I got to have a second open heart surgery for a coronary artery bypass. Yay me! I never woke up from the anesthesia from the first operation before the second, so I didn't know anything until it was all said and done.
I have some upper back pain and clavicle pain otherwise nothing to bad. It's hard to sleep though because my heart rate is staying around 100. Hopefully this calms down with time.
Just wanted to give an update.

 

[DJ-Rae09]

Welcome to the other side

Take it easy through recovery and listen to your body. Walk as much as you can, take it day by day.

It's hard to sleep though because my heart rate is staying around 100

Your heart rate should calm down overtime. My HR was around the mid 80s following surgery (normally 60s pre surgery) and it came down after about 2 months. I was also on a beta blocker immediately after surgery but I'm now off it.

Are you going to manage your INR yourself at home?

 

[Thomas67]

I would like to eventually. I need to figure out if insurance will pay for the meter, but either way it looks like you can buy them fairly reasonably. Right now they want me at 2.0-3.0 and I got tested today and I was 2.5. So at least nothing is too out of whack.

 

[Chuck C]

Thanks for the update Thomas and welcome to the other side!

It's hard to sleep though because my heart rate is staying around 100.

It is normal for the heart rate to be on the high side right after surgery. They usually put you on beta blockers to slow it down and also to control blood pressure, at least for awhile after surgery. Are you on beta blockers and have you discussed upping your dose with your cardiologist, in order to bring your heart rate down?

Right now they want me at 2.0-3.0

That is the normal range for a mechanical valve in the aortic position. Hopefully they don't eventually try to push you under 2.0, becuase you have the On-x.

 

[PAN]

Hopefully they don't eventually try to push you under 2.0, becuase you have the On-x.

Just say No !

Wasn't that some 80s 90s anti drug campaign. who knew...