Yes, I am the new guy

[EasterRat]

Hey folks,

So, pneumonia in late October led to the detection of a heart murmur, which led to a heart echo, which led to the discovery of BAVD with a side of severe regurgitation. I am 41, male from Winnipeg (go Jets go) and had no inkling anything was wrong with my temple. Now, as I'm sure you are all familiar with, my surgery date looms, with a fun little prequel of a CT scan and Angio (looks like a bad time). So, I will be leafing through the pages here and hoping to glean as much good advice and support as I can, hey, maybe I'll even offer some support of my own. Today is pretty panicky - I woke up last night with the vivid image of being wheeled in, just prior to anesthesia and it dawned on me that it was super serious and super out of my hands...squirrely to say the least. Anyways, just wanted to say hi and that I am here...look forward to chatting!

Dylan

 

[neil]

welcome aboard dylan

 

[cldlhd]

Yup welcome aboard. I'm not going to say any of it is fun but in hindsight it's not as bad as you thought it would be. Go Flyers !!!

 

[dick0236]

Welcome Dylan. You're gonna fit right in. We are a positive bunch that look at this as only a temporary blip in the grand scheme of life.

 

[EasterRat]

Thanks guys, ye olde flyers are on quite a streak! Anyone go through an aortic valve repair, I'm told that's option 1.

 

[Ryanvs]

Welcome Dylan!! No repair for me, just a brand new mechanical valve. I actually don't think I've spoken to anyone here who had just a repair - could be wrong however.

 

[jwinter]

Dylan welcome to this great group! Ask questions and use that search field. I just got my second valve November 1 at the young age of 60. 3 children, 8 Grands, and met the love of my life and married him 9 years ago. Life is good!

 

[cldlhd]

Thanks guys, ye olde flyers are on quite a streak! Anyone go through an aortic valve repair, I'm told that's option 1.

I had repair in February 2015. My valve wasn't leaking much and importantly I had no visible stenosis. My main cause for surgery was the aneurysm that often goes with BAV. There are a lot of great surgeons out there but repair is considered a bit more of a specialty. I feel very lucky, when I had my my one year follow up my valve showed no leakage.

 

[Seaton]

Greetings Dylan!
There be wise and generous voices here. The best to you from London.

 

[AZ Don]

Hi,
Welcome to the group. I didn't have my BAV valve repaired so much as spared when I had surgery for an aortic aneurysm of the root and ascending aorta. Some similarities. Although there is a chance of needing another surgery it is much less than that with a tissue valve (roughly 100%), but much higher than that with a mechanical valve (very low, perhaps 1%). I don't know the specific odds for a repair, my chance of re-op was estimated at 50% but that has gone up as the valve started leaking after the surgery. My understanding of valve repair is that the prognosis can be very good as long as you have the repair done at a high volume, high quality surgical center by a surgeon experienced in valve repair. Even if you have a repair scheduled, there is a not insignificant chance the surgeon will opt to replace it if he doesn't feel that he can make a lasting repair.

The way I looked at the decision is that I avoided the use of coumadin (though many on here will tell you it is no big deal) and I had a fair chance for never needing another surgery. Even if I do require another surgery, if I can put it off long enough perhaps one of the many new options being researched will become available for me (mechanical valves that don't require coumadin, valves grown from your own stem cells, etc). Although the surgery is major, the pain is not so bad (for most) and the recovery goes by quickly (for most). .

 

[cldlhd]

I'd like to echo a lot of what AZdon wrote . I had my repair done at a high volume center and I was fortunate enough to have a surgeon considered one of the best at aortic valve repair in the U.S. I told my surgeon I only wanted a repair if he thought it would be a durable one, if not then I was going to get a mechanical valve. He said it "went perfect and put me in his top 5 all time" so I'll take it.

 

[EasterRat]

Thanks for the thoughts folks, I'm trying to get up to speed on all this. 3 months ago I was just suffering from middle age dom. I am told there is no stenosis which seems good. I have no idea how to even find out how active of a surgical center I am in, though being in Winnipeg logically infers it is not high volume. I wonder how many procedures would satisfy the minuimum bar to be considered good. At any rate, I will be hoping for a successful repair, so as to avoid anti-coagulants for as long as possible...also, Jets win!

 

[pellicle]

Hi and welcome EasterRat I just wanted to add to AZ's point

..
Although there is a chance of needing another surgery it is much less than that with a tissue valve (roughly 100%), but much higher than that with a mechanical valve (very low, perhaps 1%).
... I avoided the use of coumadin (though many on here will tell you it is no big deal) and I had a fair chance for never needing another surgery.

I would be one of the "being on warfarin is no big deal" group, but it does bring complications, SO I agree with AZ's point: if you are a fair candidate for a repair which gives you a much better chance of never needing a reoperation then I would take that with both hands.

My stance after that option no longer exists would be similar to cldlhd who picked a mechanical as the "second bet" option.

I'd query your surgeon and see what he / she thinks is the chances, but if they're good then you'd be mad not to. I don't know your age, but a second surgery (that is a repair now and then a replacement possibly some 20 years down the track) is a lot different an equation to signing up to serial tissue valve replacements starting at age 30. That is signing up for 3+ operations ... To my mind if you're looking at a fair chance of just 1 operation, and trading off potential hassles (and most will come from dick head medicos) VS being surgery clear for decades or even life then that's a good plan.

PS: an excellent example of mediodickeadedness is found here: http://www.valvereplacement.org/foru...now-your-stuff

Lots of medicos aren't sure of the difference between "Know your **** VS Know you're ****" ... mostly they just don't know ****

 

[Freddie]

Just wanted to say Hi and Welcome a fellow Canuck from Saskatoon.
You got questions and you found the right place.

 

[Superman]

Welcome aboard! Open season here. No question or fear is too big or too small. If we don't have an answer, we'll make one up!

But seriously, it is a good group and quite a few who really do great research and back up answers with sources. Hope a repair is an option for you. Best to keep what you're born with if it can be made to work correctly.

 

[LondonAndy]

Welcome, and can't add much to what others have already said, but just wanted to say I find it best to take one step at a time - there's no point in worrying about steps 3, 4 and 5 now - you've dealt with step 1 now see what step 2 finds. As regards the angiogram, I am probably a little weird as i enjoyed mine! Not sure if the procedure varies much around the world, but here in London they insert a probe into an artery (in my case in my groin) to feed the probe up to the heart, with you having had a local anesthetic for that, and then you are lying on a trolley beside a huge plasma screen (100" at least) watching the x-rays firing as the probe moves through the key bits. For me it was completely painless and fascinating, and I suspect i was the first person to say "I enjoyed that - same time next week?" at the end of it. So relax, some big decisions to take but better the problems have been identified and are being dealt with than a big surprise later.

 

[Zoltania]

Today is pretty panicky - I woke up last night with the vivid image of being wheeled in, just prior to anesthesia and it dawned on me that it was super serious and super out of my hands...squirrely to say the least.

Maybe you can direct the visualization a little... imagine yourself being wheeled in and met by a team of kind and caring professionals who are there to help you and heal you, with a virtual band of your allies (friends, family, loved ones, us from the forum) looking down from above and sending you good wishes.

And the angiogram probably won't be as bad as you fear. I don't even remember mine. The Versed and fentanyl combo they used on me worked like a charm.

 

[EasterRat]

Holy smokes guys, a busy day before I remembered to look back here. So many comforting thoughts! Thanks so much. Looking forward to chatting more. Today was a good day. CT next week!

 

[EasterRat]

soooo....is double posting a no-no here too? I hope an admin doesn't come sweeping in with vengeful wrath! I have not had the detailed meeting with the Surgeon yet as he has to jet to Cancun or wherever Surgeons go for the holiday season. I will have that meeting on January 10th. I have been wondering what my outlook would be without surgery...not that I am planning to go into hiding, more as a way to balance the emotions of impending OHS in my fragile little mind. Again, I have BAV w severe regurgitation but no stenosis. What would have happened if this was not detected? I am assuming either aneurism or other heart issues that would not be as readily repaired and/or more sudden onset and fatal...

It's been great to read some of the pages and discussion here and begin thinking about activity levels after OHS...it's super good to see that lots of people have been through the other side of this.

Thanks Zoltania for the help in remembering that visualizing a positive outcome is equally likely and much more helpful in balancing the brain and outloook...that post made me happy!

Today is a good day - my son's 7th birthday!

 

[dick0236]

Nothing wrong with double posting here........when you got something to say, say it. If in doubt get a second opinion.....but once you get to a point where you accept their recommendation, don't put it off.....'cause it won't get better. If you have "severe regurgitation your heart will have to work harder to supply blood to your body. Your heart will then "enlarge" and lead to future issues. My docs put it to me in a simple, direct way......get it fixed or you have a "one in four chance of dropping dead" and they, pretty much, assured me I "wouldn't live ten more years" and that's something a 30 year old man doesn't want to hear.