Diagnosed with BAV two weeks ago

[ajc1991]

Hi, my name is Alex and I'm 23 years old. Two weeks ago I had a physical, the first one in a long whole. My doctor checked my heartbeat and said I had a heart murmur. He said it was probably nothing, that maybe because I was a thin guy he might just be hearing my heartbeat at a louder level. He said he wanted to send me to a cardiologist just to rule out anything serious. I went to the cardiologist and had an echocardiogram done. The next day I got a call from my Dr. and he stated the cardiologist was concerned, that one of my valves was not functioning properly. I immediately was scared. I went online and spent a whole lot of time looking up things like "heart valve not functioning properly" and read a lot of articles saying that a lot require surgery. I was prepared to hear this, knowing you can't really change the structure of the heart with a pill, that someone would have to go in there and fix it. The next day I met with the cardiologist and he told me I had a bicuspid aortic valve, and that one of my valves was leaky. He had stated it would not be able to be repaired, but replaced. And this, of course, required surgery. The two options he gave me obviously were a tissue valve or mechanical. I learned that the tissue valves only last 10-15 years and since I'm young, there's no doubt it'll have to be replaced in the future. And that the surgery required to do so when you've already had a valve repaired is quite risky. The mechanical one can last a lifetime but I would have to be on blood thinners for the rest of my life, but still, this would be the best option. He stated he wants me to have surgery within a month. I was shaking with fear when he was telling me all of this. Thinking why me? Open heart surgery is THE LAST THING I ever thought I'd have to deal with. It's been a little over a week and I am happy to say that I've done LOADS of research on the mechanical valve, and that it is a pretty routine procedure, as well as research on what to expect before, during, and after surgery. I've also done tons of research on blood thinners, the consistency with Vitamin K, as well as watching out for foods that contain a lot of Vitamin E (which thins your blood.) I am, for some weird a** reason, actually looking forward to the surgery. I'm calm, ready for it, knowing what is coming, and how to take care of it, and glad they caught it before it was too late. I live with family that will support me through this journey, and am blessed to have access to so many good surgeons. My cardiologist referred me to see Dr. Shemin at Ronald Reagan UCLA. He was the president of the American heart association and is the chief of the Division of Cardiothoracic Surgery at UCLA and has done plenty of surgeries with valve replacement and tons of research on the mechanical heart valve. I have an appointment to see Dr.Shemin in 3 days and am really looking forward to it. That morning I have an appointment to get a CT scan, since I have a bicuspid aortic valve and they want to make sure nothing else needs to be done to my heart at the time of surgery. My mother has talked to plenty of her Dr friends and they have given her names of good cardiovascular surgeons. My mother thinks it'd be a good idea to seek a second opinion, not on the procedure, since I know i have to have it done, but to see if I like any of the other surgeons. And I agree. I'm glad to have discovered this forum to read up on many peoples stories before and after surgery. Sorry for the long post lol

 

[pellicle]

Hijust a quick post to say that in the main there is huge amounts of misinformation written on warfarin and the effects on your diet and lifestyle. Mostly its from the experiences of the elderley and those without experience.Being competent to self test and being assisted with dosing until you are comfortable there too further simplifies the warfarin / coumadin thing.Personally I have been on it for about 3 years and travel frequently, eat without consideration and my INR is well within safe zones. Rather than type ad nauseum here I'm very happy to chat with you about my experiences and what I know. I had my BAV first repaired at 9, replaced at 28 with a homograft and then a mechanical at 48PM me and I will happily arrange time to chat over skype if you wish best wishes

 

[Agian]

Good for you! I wish I had your stoicism when I was 23. We're all sure you'll do just fine.

 

[Odie]

Talking to several surgeons is a wise thing to do. Some heart patients don't have that luxury because they discover they need a surgeon's help after it is too late. As long as your doctor thinks you have time to interview several surgeons then I'd make the most of that opportunity. I interviewed several surgeons in two different cities. I found all of them to be extremely competent and experienced. I'm sure I would have been in excellent hands with any of them. However, I also found differences that seemed significant. I ended up selecting the only surgeon who even entertained the possibility that my AV issue could be addressed by a repair, instead of a replacement. While he put the odds of a repair as being very low. At least he left that option on the table until he could get inside and look around.

With that great attitude of yours and your youthfulness you'll make OHS look easy!

 

[knotguilty]

I think you are brave and have the right attitude. Imagine how worried your parents are so it is good you have a positive outlook. It is a shame that you have to have this at such a young age, but you will be fine. Keep us posted because we all really do care and want to hear how it goes for you. You will also be helping many people coming in behind you.

 

[joanpieroni]

Hi AJC 1991, I had a bicuspid aortic valve too that needed to be replaced, I chose an organic valve because of blood thinners and being a cook I wouldn't want to worry about cutting myself while working. I am 49 and knew it would need to be replaced but my doctors said they have seen these valves last around 25 years, heck in 25 years the technology will be pretty advanced so I didn't give it a second thought. It is great you are getting so much info about what will be done it really helps before and after. I can't believe it is almost 6 months since my valve replacement, I went back to work full time after only 12 weeks off. The best part is I only have a small 3" horizontal scar above my right breast so it's not bad at all!!!! Good luck keep us posted- JP

 

[ajc1991]

Thank you everybody for all of the kind words and support, as well as information. My consultation with my surgeon is tomorrow and I'm looking VERY forward to it. I go in in the morning at a different office to get a CT scan done so the surgeon can review the results and make sure nothing else needs to be fixed regarding my heart at the time of surgery since I have a bicuspid aortic valve. I just hope they find no other problems, that's my only concern.

 

[mbeard]

Good luck to you tomorrow with your dr. appointment, ajc1991. I am thinking about you and I am sure all on this forum are as well. I was diagnosed with a bicuspid valve and aortic aneurysm a year ago, but am stable at this time. I hope you continue to post to keep people like me informed.

 

[ajc1991]

Hi everyone. I had my consultation with the surgeon yesterday and I'm glad to say it went well. I really like him. He had observed that I have severe leakage of my mitral valve. I had a CT scan earlier that morning so the surgeon would be able to see (since I have a BAV) if there was anything else wrong with my heart that needed to be done at the time of surgery. He said my aortic valve is slightly enlarged, he's not sure if he's going to have to repair it or if he's just going to leave it alone in hoping that the swelling will go down once my leaking mitral valve is fixed. He will know what happens once he gets a good look at me in surgery. I have chosen to go with a St. Jude mechanical valve, which he fully supports my decision. And agrees that the St. Jude valve is a better choice over the ON-X since the St. Jude valve has a successful and longer track history. After meeting with the surgeon I met with one of the doctors in the office and led me through what happens before, during, and after surgery and what would happen the week of my hospital stay. I must say I'm a little nervous about all the tubes that would be put in my body. She said one (possibly 2) chest tubes, a neck tube, and a catheter. But I do understand all of these tubes have a very important purpose to ensure a successful recovery to prevent infection. Other than that everything is fine, luckily I did heavy research before the consultation so a lot of the stuff I already knew. My surgery is scheduled for October 24th at Ronald Reagan UCLA and I'm looking forward to it. I'd do it in two weeks if I could, but the 24th of October is his earliest booking.

 

[river-wear]

Kudos to you for taking care of things quickly. I kind of feel like I "lost" the first half of the year with research (well worthwhile), planning and then waiting, waiting, waiting. Now it's a small in my rear view mirror. Good luck with your surgery! Don't sweat the small stuff like the tubes. They really aren't a big deal, and I had THREE chest tubes. I still don't know why a small-ish person needed so many, but hey, they're the experts.

 

[big_L]

Good luck. I chose the St. Jude valve for the same reason. I wanted something that had been implanted a LOT and for a long time. Proven track record as you say. I'm a thin guy also. I had the central line (neck), three chest tubes, pacing wires for external pacemaker. It's tougher on your family than you, as you won't be spending any time in front of the mirror. You'll be fine, you have a good support network.

 

[ajc1991]

Thanks everybody for all the kind words. I actually changed my surgery to October 30th instead of October 24th. My surgeon will be leaving the weekend of the 24th for a little vacation. I want him to be around the time of my surgery in case something happens so I chose the 30th.

 

[IronmaninTraining]

Alex...I'm 29 so still being in the 20s I can understand the shock although I knew about my BAV at a much younger age. Its good to know you've done your research and picked your valve type...it is a personal decision and only you can decide what is the best for your life. I went for the ross procedure with the understanding I'll be either good for the rest of my life or for at least 20 or more years. Having recently had the procedure less than 3 months ago I can it say overall it really isn't that bad. All the tubes and so on are there for a reason and removing them will be all over very quickly. Definitely take a look at the hospital stories to get a better idea as it helped me out alot. Good luck and I hope you have a speedy recovery (I just got back from cardiac rehab and am running 40 minutes at 5mph with no issues)

 

[tdaurio]

Hi Alex...Had emergency OHS AVR on 6/27/14 resulting from endocarditis, 44 years old. The endocarditis appears to be a result partly due to the fact that I also had a BAV. Also had a pacemaker installed and a couple of holes in my ventricles patched up. Bacteria really messed me up. Had my OHS at New York Presbyterian / Weill Cornell by Dr. Leonard Girardi. I did not have the opportunity to research prior to operation and relied wholly on the doctor's suggestion. Valve options were bovine, horse, pig, cadaver and of course mechanical. I chose a tissue valve (Edwards Lifesciences 27MM bovine) based on his suggestion. Bovine because of its longevity, 10-15 years.

I turned away from mechanical for three reasons: 1. Didn't want to be on blood thinners for the rest of my life. (INR testing and risks of bleeding) 2. Was told about new and upcoming technologies and procedures that are likely to eliminate the need for additional OHS's, mainly performing AVR via catheterization. Some of which are currently being performed. 3. Would still be 'young' enough at 54-59 to endure another surgery, if all else fails.

I am almost 3 months post and am feeling very good, back to physical activities and required to take 1 low dose aspirin per day for life. Betting on successful advancements in medical technology, hopefully made the right choice.

All the best for your upcoming OHS and quick recovery!
​Tom

 

[Lisa2]

Hi, Alex. It seems that you are in a good place. I remember feeling calm and ready before my surgery, much like you. I was very, very sick and really looked forward to having it all behind me. I wasn't scared. I had a checkup with my cardio in Dec. and I told my husband before going to the appt. that the doc was going to tell me it was time. I had surgery 3 months later. Keep up your positive mental outlook. It helps!!

 

[FlSteel]

Hey Alex. I'm 44 and just got diagnosed 3 weeks ago with BAVD. I go in this Friday for a TEE to get more in depth idea of where I stand. Like you I went in for a routine physical and this year I had to get an EKG with it (first one in three years). I leave the doctors office with a clean bill of health. Two days later my general practioner calls me back and says that my EKG was abnormal and it appears that I have an enlaraged left ventricle and that I need to go and see a cardiologist. Not thinking it was a big deal, went and had a stress test and an echo. A week after that I have the follow up thinking that there should be no issues, and that's when he tells me I have BAVD and he wants to run some more tests, but that I will probably have to have surgery in the future. Like you I have been doing my research on this. I wish you the best. Will be praying for the best outcome for you.

 

[Purdue]

I'm coming in late to this conversation but words if they help. BAV and aorta replaced in January 2012. Chose the mechanical valve due to the same reason other 44 year-olds do. Developed a rare strain of Endocarditis a couple of months later, a second open heart in June 2012 to fix everything the Endocarditis trashed. It attacked everything that was fixed and we don't know how I survived. My BAV developed basically a blood blister around the base and detached 30%. A bubble of blood / blister was all that held it on. Surgery at the Cleveland Clinic to rescue me. Eight weeks of antibiotics at home after the surgery as a precaution.

I left out a lot of details but my point in this post is be vigilant on antibiotics after a mechanical valve. Don't let doctors or other people push you away from follow up antibiotics because had we planned for this after my first mechanical valve surgery, we guess my second surgery may not have been needed. The problem is there is a high chance that you may not get it but if you do, you are in trouble. Weigh the risks of taking antibiotics via IV at home post surgery. Post surgery, watch for drenching night sweats, knee pain, fever, and don't forget to keep checking your fingernails. Splinter hemorrhages are a bad sign. My infection was so bad, I developed rigors and could not get warm no matter what.

 

[ajc1991]

I'm coming in late to this conversation but words if they help. BAV and aorta replaced in January 2012. Chose the mechanical valve due to the same reason other 44 year-olds do. Developed a rare strain of Endocarditis a couple of months later, a second open heart in June 2012 to fix everything the Endocarditis trashed. It attacked everything that was fixed and we don't know how I survived. My BAV developed basically a blood blister around the base and detached 30%. A bubble of blood / blister was all that held it on. Surgery at the Cleveland Clinic to rescue me. Eight weeks of antibiotics at home after the surgery as a precaution.

I left out a lot of details but my point in this post is be vigilant on antibiotics after a mechanical valve. Don't let doctors or other people push you away from follow up antibiotics because had we planned for this after my first mechanical valve surgery, we guess my second surgery may not have been needed. The problem is there is a high chance that you may not get it but if you do, you are in trouble. Weigh the risks of taking antibiotics via IV at home post surgery. Post surgery, watch for drenching night sweats, knee pain, fever, and don't forget to keep checking your fingernails. Splinter hemorrhages are a bad sign. My infection was so bad, I developed rigors and could not get warm no matter what.

Wow, so sorry to hear you had to through that. I'm glad you're ok now. I will definately watch out for those kind of symptoms post surgery. My surgery has been postponed to Jan 15th due to me having a pimple on the incision line, and to make sure I don't get an infection they wanted it to clear up so they gave me Doxycycline (200mg a day). I've been on the Doxycycline for about a month and a half. They want me to continue taking it post surgery as well.

 

[pellicle]

Hi

th due to me having a pimple on the incision line, and to make sure I don't get an infection they wanted it to clear up so they ...

Wow, now that was smart! My infection is Propionibacteria which is the bacteria from pimples, its also a common skin bacteria and is involved in a great number (if not most) prostheses surgical infections.

It is hard to get rid of, and in many cases even repeat debridement operations with prosthesis replacement will not die out. Amputations are often the end game, but are not a choice for those of us with prosthetic heart valves.

 

[ajc1991]

Hi



Wow, now that was smart! My infection is Propionibacteria which is the bacteria from pimples, its also a common skin bacteria and is involved in a great number (if not most) prostheses surgical infections.

It is hard to get rid of, and in many cases even repeat debridement operations with prosthesis replacement will not die out. Amputations are often the end game, but are not a choice for those of us with prosthetic heart valves.

I really hope I don't get an infection. I remember seeing your photos a while back