Surgery Scheduled for 3-26-15

[PSUMatt]

Hello everyone.

This is my first post and I am so happy that I found this forum and its wealth of information. A little background on me. I am currently 29 yo and was born with a coarctation of my aortic artery and aortic stenosis. I had surgery a few days after I was born to fix the coarctation and have had two valvioplasties to help with the aortic stenosis when I was age 6 and 8. It looks like now it is finally time to fix the valve. I was originally told that it would have to be done by the time I turned 12 but have been lucky and followed doctors orders not to do any strenuous activities to get to where I am at now. I guess after so many years of hearing "you are good for another year" I almost forgot that I needed to have the valve replaced.

I currently have surgery scheduled for 3-26-15 with Dr. Chen at Emory St. Josephs. He has given me three different replacement options for surgery and is willing to do any of them. I am really only considering the Ross procedure or Mechanical, but am leaning heavily to mechanical as Dr. Chen only does about 7-10 Ross procedures a year and has only been doing them for 5 years or so. He has not had any redo's with the Ross but I am still not sure that I want to take the risk as I have a 10 month old son at home. Dr. Chen also told me that I will need to have the root replaced as it is narrow and he was concerned that if he just replaced the valve that I would still show symptoms of being short of breath.

I guess I am just looking for reassurances that I am making the right decision for both me and my young family in going with the Mechanical valve. I can not find much information on life expectancy for someone having a mechanical valve and being on coumadin at my age. I know many people are fine with coumadin but I can't help but be scared about the possibility of bleeding issues.

Dr. Chen said he can use either the St. Jude or On-X valve but he would choose the St. Jude.

Any advice would be greatly appreciated. I am so stressed out and want to make the best decision.

Matt

 

[IronmaninTraining]

First off I'm sorry Matt about your PSU issue. I am a PITT grad and fan.

I was in a similar situation as you. At a young age they noticed a heart murmur and I had annual checkups until 28 where it was finally time for surgery. I actually turned 29 14 days after surgery and I almost had my bday at the hospital when i was readmitted for pleural effusion. Valve choice was tough for me. Tissue was out of the question due to my age and I hate needles so the thought of managing INR put me on the fence for mechanical. After discussing with my surgeon and cardiologist I was a good fit for the Ross. Some of the reasons I was more comfortable with the Ross were the changes they have made to prevent previous ross issues such as a gore tax pulmonary valve and wrapping the aortic root. Being an engineer I understand the stats on the Ross procedure and am confident the recent changes will help improve them overall. Not only that the medical advancements in the future may reduce the overall impact of surgery. Many on here will state coumadin and INR is not a problem, but to me it was not something I want to deal with until an older age.

Valve choice is a personal decision you need to make. Evaluate if you are willing to take a slight chance on re-operation or are comfortable with blood tests and INR control. No matter what your decision is this will be a minor road bump and you'll look back on this as an achievement (at least I did).

As a side note I don't have kids at this time (in the foreseeable future), but I doubt that would change my decision as both mechanical and ross have great life expectancy.

 

[DachsieMom]

I am 41, and will be having a mechanical valve - surgery in April. I believe mechanical is recommended, due to my young age, and the Ross was not discussed with me so must not be an option. I, too, am concerned about being in Coumadin for the next 60 years (I'm optimistic about my life span!). I also have young children. I would be interested to hear what others tell you.

 

[river-wear]

Matt, I hope our "senior statesman" chimes in to reassure you. He was about 30 when he got a mechanical valve in 1967 (!) and obviously has been on coumadin ever since. Do your homework if you're going to pursue the Ross Procedure - it seems they're wonderful with just the right surgeon and the road to a redo with many others.

Best of luck on the 26th!

Here's a link to Dick's 47th anniversary post: http://www.valvereplacement.org/for...ries/845442-47-years-aug-16-1967-and-counting

 

[pellicle]

Hi

This is my first post and I am so happy that I found this forum and its wealth of information. A little background on me. I am currently 29 yo and was born with a coarctation of my aortic artery and aortic stenosis. I had surgery a few days after I was born to fix the coarctation and have had two valvioplasties to help with the aortic stenosis when I was age 6 and ... I almost forgot that I needed to have the valve replaced.

wow ... sounds rather like me back in 1992 (I was about 28) when it was time for my replacement. Back then things were technologically different to now, and I received a homograft. That lasted me for about 20 years, which is outstanding for my age group (many my age getting less). In 2011 it was time for a redo and the surgeons advice to me was "you won't want a 4th, surgeons will not be "lining up" to do your 4th and your risk of death will be significantly increased"

Naturally I picked mechanical

I guess I am just looking for reassurances that I am making the right decision for both me and my young family in going with the Mechanical valve.

well I'll step up to the (potential) storm of complaints and say "yes, you are picking the right path"

I was recently married (about 2 years prior) when the facts emerged that I needed another valve and having been through the wringer a few times already did not want to subject my wife to more than one of these. She was freaked out enough at the time (but being the woman I married was also very good at remaining functional and keeping it controlled).

I can not find much information on life expectancy for someone having a mechanical valve and being on coumadin at my age. I know many people are fine with coumadin but I can't help but be scared about the possibility of bleeding issues.

ok, on my Blog (here) I have assembled a starter set of papers and a discussion of the analysis of a surgeon from the Mayo who is clear that there are survival advantages to the choice of a mechanical - especially when you look past ten years. The thing is most of the papers focus on "10 year survival" and not on what happens to you after that. There is probably a premise that most valve recipients are elderly and so 10 years is heaps. For me at 28 it wasn't

Dr. Chen said he can use either the St. Jude or On-X valve but he would choose the St. Jude.

your doctor sounds prudent and careful (marks of a good surgeon) and the St Jude is a known performer, the On-X is good and was what I initially was oriented towards (blog post) but ended up with an ATS (which is not called Medtronic) which I had never heard of. Subsequent searching has revealed to me that the two valves (On-X ATS) are neck and neck and are a generation up on the StJude when it comes to some things. Having said that the St Jude has been revised recently so you may wish to discuss these issues with your surgeon.

Any advice would be greatly appreciated. I am so stressed out and want to make the best decision.

Ok well firstly (if you haven't already) read this post from a recent discussion about anticoagulation where I'm actually citing findings from a comparison of Ross VS Mechanical. To me the idea of a Ross makes me shudder ... ruin a perfectly good valve to put it into place where it was not intended (but sorta fits) and then leave the patient needing a more complex surgery later in life with more scar tissue to deal with (for the surgeon) and potentially not get long out of it anyway (you can search here for stories on patients who have chosen Ross to have it fail in less than 3 years ... again as I mentioned earlier they will NOT show up on Late Death stats because they didn't die ... they were just "reoperated" ... no mention of stresses, no mention of what damage ... to wit in that paper discussed is this quote:

Of note, in the mechanical prosthesis group, none of the late
deaths were valve related, whereas 4 (2 valve related with acute
myocardial infarction and stroke, 2 unknown but attributed to
valve related according to the guidelines) of the 7 late deaths in
the Ross group were.

Last point ... with respect to AC therapy (warfarin / Coumadin) things have moved on in important areas since most of the opinions were formed. The new focus in pharmacology is the study of how to better target the drugs we have. So (again in that article mentioned about the Ross) we find that the use of Point of Care tools to more accurately hone the dose in direct response to the persons reactions to it gives excellent outcomes. I have some blog posts about managing INR too (here) and so I would leave you with the view that being on Warfarin is much better than it made out to be (you'll read that a lot here if you dig around, many people report its a zero issue, especially the younger).

As I have said before, if the monitoring tools available now were available in 1991 ... I'd have probably swung to a mechanical back then.

Which leads me into the next point : Aneurysm ... press your surgeon firmly about this ... for those of us with aortic issues (especially with congenital bicuspid valve) the possibility of Aneurysm is high. Indeed that was what was discovered at my checkup which caused my surgery ... the valve regurgitation may have been OK for another year or so (the homograft aortic valve was failing), but the Anuerysm would have to be done now. Press your surgeon with this point and ask about aneurysm in the future.




I guess that's a metric truck load to digest ... best wishes and feel free to email me or skype me (my email is my username at hotmail.com [and my username here is pellicle])

 

[big_L]

The St. Jude is a fine valve. It's been i use for many years and is implanted in many, many patients. I wanted it, because I wanted something well proven. I also wanted a valve that the surgeon felt comfortable with.

The coumadin hasn't been anywhere near as bad as I thought it might be. Yes, it's something else to manage and yes you are at higher risk for bleeding. Now, nearly 2 yrs after my surgery, I don't really think about it much.

You'll know in your gut what the right decision is. Think about it, sleep on it, do your research and you'll know what's right for you. It's a personal decision.

 

[camgough]

Hey Matt,

First of all, best of luck with everything! in 2010 at age 30 I had valve-sparing aortic root replacement surgery, where my bicuspid aortic valve was repaired and re-implanted into a Dacron graft that replaced my root and ascending aorta. I was told at the time my repaired valves last 10 years in 90% of cases. I also had an 8 month old son at the time.

Fast forward to 2014 and I find out that my repaired valve has deteriorated and requires a replacement. 3 weeks ago I had my aortic valve replaced. My surgeon and I discussed tissue, mechanical and Ross procedure. Since I was having my second surgery in under 5 years I wanted to reduce the chances of any further. I opted for the mechanical valve, and the surgeon and myself both agreed on the On-X valve.

So far no issues with coumadin, it's a pill at night and I feel no side effects at all. When I have my blood tested there is no additional bleeding, or other concerns at this point. I am hoping to be home tsting my INR soon, which is just a finger prick every few weeks.

I am happy with my decision so far, and there are no difference in life expectancy for mechanical valve patients or coumadin patients, when properly managed.

The choice is yours, I would really look into the On-X valve, I know my surgeon highly recommends it and has the option to use several valves.

Good luck!

 

[knotguilty]

Hi there PSUMatt, I can relate to needing reassurance. It is a tough decision especially when you have loved ones depending on you. I can tell you that there is no wrong choice except to do nothing. And I can say that you as a young man will have many more years ahead of you with a new found energy. Good luck to you.

 

[PSUMatt]

Thanks for all of the responses. It was just what I needed to feel confident in the decision I am making. Now if only I can get rid of this sinus infection so that they don't have to delay the surgery. The wait has already caused enough stress.

 

[cldlhd]

Those last few weeks were fast and stressful for me and I'm sure you've heard it out here before but it'll be over before you know it and you'll be on the road to recovery .

 

[dick0236]

I guess I am just looking for reassurances that I am making the right decision for both me and my young family in going with the Mechanical valve. I can not find much information on life expectancy for someone having a mechanical valve and being on coumadin at my age. I know many people are fine with coumadin but I can't help but be scared about the possibility of bleeding issues.

Any advice would be greatly appreciated. I am so stressed out and want to make the best decision.
Matt

Hi Matt. Glad you found this forum as it can give you a lot of info and support. There is no reason to believe that your life expectancy will be changed if you take care of yourself......although that may be hard to accept.....at least it was for me.......and now I have surpassed what normal life expectancy was(73) when I had the surgery at age 31.

The coumadin/warfarin thing, in my opinion, has been blown way out of proportion. Warfarin is NOT hard to deal with if you follow a few simple rules.....the most important rules are "take the warfarin as prescribed and test routinely". I have found that it seldom interferes with my life and lifestyle......altho I no longer can "play catch" with a running chain saw.

Good luck to you.

BTW, I also had young children at the time of my surgery. Now they are middle aged men who have had children that are having children.....I am a great grandpa 3X (LOL).....but I wouldn't have believed that possible in the beginning.

​

 

[PSUMatt]

Wow Dick, I hope to get as long out of my valve as you have.

I get to go in at 6:00 am tomorrow with the surgery scheduled for I believe 7:45. Thanks everyone for the advice and I hope to post my recovery progress in the post surgery section in a few days.

 

[cldlhd]

Just wanted to send you my best wishes and I'll be looking for your post surgery postings.