Mid-Twenties Aortic Valve Replacement

[carolinemc]

A total of two months off is not bad at all, including before surgery and during and after. Just be sure to do as the doctors tell you if you must take it slow at first. You have to give the sternum a chance to recover from the trauma of being cut open if you are having the traditional bypass. Your wife will only have take enough time for perhaps the first two to three weeks to make sure you behave and not overdo anything. Take time doing whatever after you get home to recover. You will recover, just do not rush it. Just be sure to post when you are going in and after you get home. Hugs for today.

 

[BostonJohn]

Well, it looks like it is back to the waiting room for me. After reviewing the MRI results, my surgeon decided that while I do have both regurgitation (moderate) and an ascending aortic aneurysm (4.3 cm on MRI), neither is at the point where he would find it necessary to operate. I will need the surgery at some point, and both will have to be fixed, but he decided to have me get another MRI in about a year.

 

[Scott]

I am glad to hear that things are still good. Although I don't think I would want to wait a year for another check up. When things start to go bad they tend to speed up. You want to catch things before they go to far. If you decide to wait a year before your next check up then be on the look out for symptoms.

 

[nngbwh]

That is great news ! See ya next year !

 

[ChicagoMammy]

I was 28 when I had my mitral replaced 6 years ago. I opted for a tissue valve because I am female and wanted more kids. Little did I know I'd end back on coumadin anyway because of A-Fib and have a successful pregnancy on blood thinners (Lovenox). They recommend not getting pregnant on coumadin (oops). So here I am with a tissue valve, 3 kids and knowing I need re-operation at some stage. If I'd known now etc. etc. I would have chosen a mechanical valve. With you being male it comes down to what you want to be able to do afterwards I suppose. Do you want to be able to tackle football etc.

 

[clay_from_nj]

Wow, way to burst my bubble (this thread, that is). Throughout my dealing with my aortic valve issues, up through surgery (6 weeks ago) and beyond, I keep getting told how incredibly young I am. After reading this thread, apparently 46 is not so young after all. My re-do sternotomy and AVR took all of 3-1/2 hours, out of ICU the next day, and home a couple of days later, walked an hour and a half today, using disco-type music (LMFAO, etc.) for cadence, and looking to be back driving and to work next week; all of you kids should have it easy.

Clay in Colorado, ATS Open Pivot AP AVR, St. Joseph's in Denver, Dr. Mark Ammons, 9/21/12

 

[pgammo]

I had an AVR 5 months ago, at the age of 25. I chose the On-X mechanical valve, because of the possibility of avoiding another OHS. Let me tell you this:

-I went back to work at 4 weeks.
-Played QB for my flag football team at 5 weeks.
-I started driving at 4 weeks.
-I slept on my sides at 2 weeks.
-I slept on a bed the same day I was discharged (never had to sleep upright).
-I play football, basketball, frisbee, bicycle, offroad, and I have my kids jumping on my chest frequently.
-I take 6mg of Coumadin, which gets me to my therapeutic level, and it only took TWO WEEKS to get there!

Yes, I take a pill every day, but it's no big deal, as you will notice for the first three months after getting your tissue valve (you will be temporarily placed on coumadin). And yes, I do hear the ticking, but only when I think about it (sometimes I count ticks to go to sleep lol). But honestly, I could do without the ticks, but you can't have the best of both worlds!

That's been my experience with my OHS and my On-X mechanical valve--everyone is different.

God bless you and your decision, brother. I hope you find what you are looking for!

 

[TheGymGuy]

We all recover differently, I also got mechanical valve which coincides better with my lifestyle, etc. Had surgery when I was 33, though, I am probably one of the fitter 30-some folks you would meet. I like Peter's summary, so I will provide same, it's pretty concise and I hear imitation is the best kind of flattery

- went back to work at 2 weeks.
- went back to gym at 5 weeks or sooner.
- started driving at 3 weeks (shhhhh, don't tell anyone)
- slept on my bed on day 4 which was right after hospital
- was in the hospital for 3 days.
- took at least 3 month to stabilize my INR, but I was testing at home weekly with my own equipment and my INR was right under 2.0 or 2.1 and then back to 1.8 until at 10mg it stabilized at 2.4.
- eat plenty of veggies and take supps with Vit. K, etc.
- currently, 7 month post-op, powerlift and exercise for 2 hours x 5 days per week and train as hard as before.
- have a sexy scar on my chest and hear soft clicking here and there which is not that big of a deal.
- most importantly, enjoy my life to the fullest and give thanks daily.

 

[TomAlbers]

Peter, I have read that the on-x valve is supposed to be quieter, and possibly less Coumadin required. Or so that is what their website states. It sounds like noise wise maybe not the case?
Gym guy, I am curious that you said you chose a mechanical valve because you said it suited your lifestyle better. Would you be willing to say why you thought that to be the case. I had a homograft, it has gone well, but I am trying to get myself to at least consider a mechanical. I was 34 on my first surgery. Was out in 5 days, only took meds for about 10 days. Was sore, but started driving in 3 to 4 weeks because I got tired of bumming rides to cardiac rehab. My dad died the day I got home from surgery so I had some emotional stress going on, but was back at work in 4 weeks and coaching full boar in 6 weeks. I don't want to mess with Coumadin and expense of it, but at 46 if I could make this the last ohs that is worth considering too. I will continue praying for guidance but its getting to crunch time and have to decide. Also, thanks for the book recommendation coping with heart surgery.

 

[TheGymGuy]

Hey Tom,
It suited my lifestyle better because I decided that I would prefer if I did not have any more surgeries of such complexity if at all possible. Also, I take vitamins daily already so one more pill would not be a big deal. Lastly, even though I was in the hospital for a short time and recovery went well, it did take me 4 months to get to a reasonable strength level. I had to work so hard to get there that I would prefer to not have to repeat it. See my 6-month update post, I think the last sentence will make more sense give that post's context - http://www.valvereplacement.org/forums/showthread.php?40893-6-month-update

 

[Patrickh]

I had my Aortic valve replaced with mechanical 12 weeks ago today. Although I'm not so young (57), I still was unsure of what choice to take. This was especially so when the Chief Surgeon where I had my surgery had mentioned that with mechanical valve chances of death due to bleeding are considerably increased. (I'm not sure his maths was right.He said 1% a year, so over 10 years thats a 10% chance of bleed death!). Anyway, I went ahead with mechanical valve and now on Warfarin. My INR target is between 3.0 and 4.0, and after 10 weeks I was finally in range...but it did seem to take a lot of juggling. I've wounded myself several times, including a misused knife in the kitchen. I put pressure on it and it did not seem to take much longer to stop bleeding, which surprised me. The blood testing was a bit of a chore at first...I had had enough of all those needles in hospital...but then I found that my local Doctors Surgery used a pin-prick tester, very similar to those used for Diabetes, which is a massive improvement. I believe you can even get them for home use if you really feel the need. When I have the test, the bleeding stops pretty quickly. So, I would say that if you are reasonably sensible and take normal precautions...like letting people know where you are going for off-piste skiing, etc, then a mechanical valve is not such a big deal to handle. If you get hit by an avalanche, I don't think it will matter what valve you have!
WARNING!!! Post operative recovery will take much longer than you want it to...if you are sensible. I am not very patient, and have been wanting to run before I can walk. However, the onset of Atrial Fibrillation has slowed me up, and I've learned to be patient. Don't expect to be on the ski slopes 3 months after surgery...it takes longer to heal properly than that. Good Luck.

 

[Patrickh]

LOL.....I am 57 and everyone (doctors) kept telling me I was young to have surgery. Ever since I came out of hospital, I've found I'm not so young after all. BUT, I did see a lady of 82 in hospital who seemed fit-as-a-fiddle days after her surgery.

Wow, way to burst my bubble (this thread, that is). Throughout my dealing with my aortic valve issues, up through surgery (6 weeks ago) and beyond, I keep getting told how incredibly young I am. After reading this thread, apparently 46 is not so young after all. My re-do sternotomy and AVR took all of 3-1/2 hours, out of ICU the next day, and home a couple of days later, walked an hour and a half today, using disco-type music (LMFAO, etc.) for cadence, and looking to be back driving and to work next week; all of you kids should have it easy.

Clay in Colorado, ATS Open Pivot AP AVR, St. Joseph's in Denver, Dr. Mark Ammons, 9/21/12

 

[hannahsmom]

Hello John,

My now 12 year old daughter had valve replacement 2 years ago. Our original plan was the Ross Procedure, however she ended not being a good canidate for that and we had to go with plan b, a mechanical valve. This was very scary for her, myself and my husband and all because of our fears with anti-coagulant treatment, especially it wasn't until she was in surgery that it was determined that this would be the best route for her. She was able to get an adult sized valve (which you would obviously get), so if she is as blessed as many of the members on this site, she may never need surgery again.

Her personal experience with warfarin has been good. Nothing has been taken out of her diet, we are just more consistent. After 6 weeks post op she returned to school, dance, gymnastics and is now a cheerleader. We have not noticed and side effects with the medication. Even bruising and bleeding - we have not noticed any significant difference. We can hear her valve but not all the time. We have an aquarium and fan on in her room at night so it doesn't keep her up, but she is not bothered by it.

Our main concern in the future would be the ability to have children. Thats a bridge we will cross when we get to it, but overall she is a happy and thriving young woman.

My best advise is educate yourself the best you can. Each person has there own physicial and mental capacity and with each valve type comes physicial and mental pros and cons. I wish you the best of luck in making this very vital decision. It is not an easy one. Try to stay positive and know that you can live a full and healthly life regardless of your choice.

Best wishes,

Kelly

 

[BostonJohn]

Well, it is a year later and here I am again. I had check-ups all year and recently had my MRI. I followed up with a couple more people at Brigham and Women's and we came to the conclusion that it is time for surgery (I am extremely thankful that I was able to wait a year, as it gave me time to finish my MBA and change jobs). I have not yet picked a date, but I am planning on some time in late February or March hopefully. I am still having a difficult time picking a valve. While the idea of avoiding another surgery with a mechanical valve is very enticing, I am still extremely worried about being on coumadin. I am still very active, particularly in the outdoors in some very remote places, and I am not yet willing to give that up. The idea of having an injury that would be exacerbated by coumadin is very frightening to me. This is especially true of skiing, even though I always wear a helmet. I have a friend who works in a neurological intensive care unit, and she says that tons of her patients are on coumadin, bump their heads, and slip into a coma. Considering my aggressive (and somewhat clumsy) nature, I wonder if there is more risk being on coumadin than having a second surgery when my life has calmed down a bit. I also do not want to be worried about everything I eat and drink, particularly since I have a number of close friends' bachelor parties and weddings in the next two years (and hopefully my own eventually). I might be over-thinking it, and I know that the "normal" choice for someone my age is a mechanical valve. I have discussed the options with my cardiologists and surgeons, and I know that the choice comes down to me. It is going to be a tough one, but I hope to make a decision soon and stick with it until surgery day.

It's good to be back (sort of),

-John

 

[pellicle]

Hi there

I guess I should start this with saying that most normal people think I'm an idiot, my friends on the other hand think I live life to the full and are all supportive of my way of living. I don't really fear anything (perhaps being incapacitated) but death has never fazed me. Perhaps its because I had my first OHS at 9, lost my best friend from Cancer at 21 and between the two times saw enough to let me know that life is about living and death is as far as we go here.

Consequentially I've lived my life doing stupid stuff (by the standards of others, as it happens I take safety seriously)

and

so that I can get to places like this:

so basically I'm completely unfamiliar with what people call anxiety attacks and I really just don't understand. I feel sympathetic, but I just don't understand. So with that in mind:

I am still having a difficult time picking a valve. While the idea of avoiding another surgery with a mechanical valve is very enticing, I am still extremely worried about being on coumadin.

to be frank, I think worry about coumadin is just something I can't understand at all. If you have heaps of co-morbidities (diabetes, obesiety, poor circulation ...) then I can see a case for it. But everything I've ever read as well as my personal experience is that its all hyped up by those who are afraid of it.

I would choose any of the pyrolytic carbon valves and ask about the likelyhood of needing an aortic strengthening to reduce the risk of aneurysm later (I mean, while they've got the hood off and the pipes undone).

The data suggests that well managed self testing (and preferably self managing) patients are frequently within their INR range (something greater than 80%) and that within the INR range your likelyhood of issues is very minor.

People here will boogey man the whole thing up but if you're young fit and active then really its not an issue. If you're old frail and with a long list of co-morbidities then perhaps coumadin is an issue ... but then perhaps its not.

My personal experience is that I've had a long and difficult recovery from an infection which was given to me in the surgery for my valve. As I did not die, I didn't fall into any statistical category of "post surgical issues" and so my operation contributes nothing to stats. Remember - they talk about reoperations or deaths.

I see thread after thread here of young people who said "oh, I'm too active for this stuff, I'll have a tissue" and guess what ... we see them back here in (sadly) short times. Some have had less than 2 years.

http://www.valvereplacement.org/forums/showthread.php?42041-The-Surgeon-Choice&p=544427#post544427

I was age 41 when I received my bovine pericardial valve. My primary reason was to avoid the need for warfarin. I had good results with my first valve for 7 years. We replaced it last year because it had become severely calcified

http://www.valvereplacement.org/for...-needs-to-be-replaced-with-a-mechanical-valve

I just found out 2 weeks ago that I'm in severe stenosis again. Had a an echo and the result was critical - Dr asked me to come in urgently. He said the bovine/porcine valve did not take and since I'm young (52) I require more blood to pump and I need to replace with a mechanical valve.

http://www.valvereplacement.org/forums/showthread.php?39503-Tissue-valve-failing-after-6-months

I had OHS 6 months ago and received a St jude biocor 21 mm valve. It now seems that the valve is not working properly. It is still unclear what the exact problem is but my surgeon thought the leaflets of the valve appeared to be thickened which could be caused by calcification.

There are some more you can find ... and while many seem to take the 'replace it when its worn out' philosophy, that may work better when you're older and only ever need one replacement. Or it might not.

Another issues may be in difficulty in managing your INR (to put an argument for the opposite) I would suggest that you get blood tested for your CYP2C9 and VKORC1 alleles to see if you may have a genetic predisposition that makes management of warfarin difficult. You could also attempt to trial it for some time (although I'm told that its difficult to arrange ... beats me why surgeons would poohoo such a logical thing)

Anyway, I've had 3 surgeries now (9yo - repair, 28yo - homograft and 48yo - mechanical) and my surgeon was quite convinced of the issues of scar tissue in multiple surgeries. Here is another thread
http://www.valvereplacement.org/for...pped-night-before-surgery&p=541876#post541876

I was all set to have my 2nd AVR today when I met with my surgeon late yesterday afternoon and was told my CT scan showed MAJOR scar tissue covering all of the replaced aorta which was done during my 1st AVR for bicuspid 6.5 years ago.

Ultimately its your call.

Me, warfarin has done nothing to effect my lifestyle and right now I'm back in Finland and have just come in from skiing (cross country) as I'm back training (after the horrors of last year) so that I can keep living my crazy life.

Back in Australia I always play it safe in my life too, as my transport method is either my 4WD for camping, cycling around town or this:

live life ... don't fear it

Warfarin has enabled me to live my life and (God willing) never need another stupid surgery again!!

Oh ... and if you think nosocomial infections, I had propioni bacteria ... MSR would probably have put me onto the dead list ... and did you know that antiobiotics are becoming increasingly challenged these days?

Have a read of my personal experience with surgical infections and then let me know what is it about warfarin that's so bad for a healthy person?

http://www.valvereplacement.org/for...nd-feelings-(some-may-find-images-disturbing)

 

[dick0236]

John, it sounds as tho you have made your decision....and are ready to "git 'er dun" and go on with your life. However, for the record, I have found none of your "con arguments" to be true in my case and I wasn't much older than you when I had a mechanical valve implanted....and went on warfarin for life.

 

[pellicle]

oh, forgot to add ... I've been out of range on three measurements in over two years (and I test weekly)

 

[neil]

hi john, do your homework and make your choice, which ever valve you choose has no life time promise,but mech is the best choice on that score to last longer, there have been a few on here with mechs who have needed re ops,its a tough choice and remember there is no bad choice, personally i didnt want to be on warfarin and the problems that can occur with it, so i choose tissue and am very happy with that,but you are younger so you have got to put that into the mix, am sure you will make the right decision,

 

[Agian]

there have been a few on here with mechs who have needed re ops

Interesting point. Why do people with mechanicals need re-ops? I read somewhere that this was due to pannus.

 

[pellicle]

Interesting point. Why do people with mechanicals need re-ops? I read somewhere that this was due to pannus.

Can be pannus, there is a fellow here that has a pannus growth relatively quickly. Can also happen because of a developing aneurysm, not a failure of the valve per she, but none the less a reop needed. I've read of leaflet failure, but that is restricted of seems to one valve. The really old ball and cage mechanical valves had some trouble too.