Newbie with Bicuspid Aortic Valve

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globug0407

New member
Joined
Jan 14, 2013
Messages
2
Location
Michigan
Hello All! I am a 42 year old female with a bicuspid aortic valve that I was told needs to be replaced as soon as possible with a mechanical valve. I had been having issues for about a year with the pain, shortness of breath and the dizziness coming more frequent over the last 7 months. I want to know the details about this horrific situation from the depression and pain to life after the replacement. I have full knowledge medically (procedure, tests, medications) from the doctors but I really need to hear from people who have experience this actually event. As a person who understands that I am doing this to save my life, the thought of having a procedure MUCH younger than I was prepared for is over-whelming.
 
globug0407 said:
As a person who understands that I am doing this save my life, the thought of having a procedure MUCH younger than I was prepared for is over-whelming.
Click to expand...

The good news is there IS a procedure that will save your life. Back in 1967 my docs told me there was a new procedure available that probably would extend my life. After 45+ years....so far so good. This is a good website for info that will help you put this surgery into perspective. You will find that most of us go on with our lives without missing a beat.
 
I totally agree with Dick - "the good news is there IS a procedure that will save your life."

I found out about my bicuspid aortic valve by complete surprise and I also had an aortic aneurysm as well. I was 45.

I didn't have any symptoms, so for me the prospect of someone cutting into my chest to fix something that I didn't even feel just seemed unthinkable. I don't ever thought my needing OHS was horrible, but I do know that I was in shock.

I was also aware that depression/anxiety is common for those of us who have to go through this, I dealt with that by being pro-active. I focused on my recovery well before I went into surgery and I set up my house and my support group well in advance. I also had to learn to trust and to let go. I thought about death too and I made plans in case the worst happened (death/stroke). But mostly I tried to turn every moment into a positive and I can honestly say that my experience has left me with a greater appreciation for life.

Seriously, you're young - be thankful for that. I think it gives you an advantage on recovery. This OHS stuff has been around for a long time and doctors/nurses/staff are the experts - they know what they are doing, you don't have to do anything but show up and try to make the best of it.

As far as my life now, my OHS was 18 months ago and I'm running about 20 miles per week - and I'm going to train for a half marathon that I plan on running in April. I'd say my quality of life is pretty good.

So glad you found this group - the people here are amazing and can help you with any questions you have.

Please keep us posted!

Rachel
 
Hey there, I'm only 27 and will have to have mine replaced soon too. I'm also pregnant so I first have to get through that first. But from what I've heard, valve replacement surgery is usually very successful. I know all this is scary though. :(
What part of Michigan are you from?
 
My 45 year old daughter had an emergecy avr in February. She found out after passing out ,that she had a unicuspid valve that closed like a toilet seat.She came thru it great. A few bumps but by 2 months post op she was back to better than normal.Good luck to you and be happy theuy found it.
 
Hi

globug0407 said:
Hello All! I am a 42 year old female with a bicuspid aortic valve that I was told needs to be replaced as soon as possible with a mechanical valve....
...
As a person who understands that I am doing this save my life, the thought of having a procedure MUCH younger than I was prepared for is over-whelming.
Click to expand...

I'm sorry to hear you are part of our group. However the good news is you will be around to be part of our group in years to come.

The surgery will save your life.

I am 48, and compared to just a few short decades ago (like when I was kid having my first surgery) such things are possible. If my mother had required such surgery when I was a toddler then I would never have had her in my life for as long as I did.

Take comfort that you are having this surgery at the earliest time, for that will make the recovery easier and more likely to be strong. Having this surgery at an older time will make things tougher. While I was in hospital with my recent post surgical issue I spoke with the father of a close friend of mine. He came to the hospital to visit me to discuss how his life went when he had OHS and got a staph infection. He took 10 years to recover and now has no sternum bone.

So be sure that earlier is better.

Also, mechanical has many advantages over tissue, not the least of which is longevity of the valve, meaning you will not need re-operation. This forum is filled with people who seem to consider re-operation as straight forward, because the operations are so successful. This is most unwise, as every operation brings with it additional risks. To be sure in all likelihood you will not be in the undesirable set of stats, but if you are you will have to live with that.

I was given a homograph on my second surgery, and a mechanical on my third. I was pathologically afraid of warfarin before my surgery and felt quite depressed after the operation.
However my mind was changed when:
  • I learned how easy it was to deal with
  • I learned how debilitating post surgical complications can be

I can't imagine how over-whelming it must be for you, as I have had this problem since I was a youth. I have had 3 surgeries in all and am often a bit bemused by the reactions of those around me to the surgeries.

They say "what would you do to stay alive", often we never know the answers to these questions, but I put it to you that you have a wonderful opportunity before you.

You now have the chance to experience things which the masses will never undergo. You will have the opportunity to enhance your spirit and discover your inner strengths.

It will not be an easy road, but you will be stronger on the other side. Take it from one who has been through a lot.

all the best, and don't be afraid to ask (as long as you are willing to listen to the answers).
 
Globug:

I am 56...will turn 57 in April. I learned in October that I was born with a BAV. Like Rachel I will need my ascending aorta repaired. This is a quite common effect of a BAV. I will most likely also be having a Pacemaker implanted to resolve my left bundle branch block. I am blessed with a great cardio and will be seeing my world-class surgeon on Feb. 5th. So my surgery is right around the corner. As they say on this site..."the other side of the mountain" .....I look forward to getting on "the other side of the mountain"...post-surgery! I started out thinking tissue..now I am leaning heavily toward mechanical...my surgeon does the ON-X with Aortic Graft attached.....my research has told me I feel positive about that as my choice. There are members on this site who have had this done. It is great to hear of their steady recovery. I have begun what I call "cardiac prehab" I am walking 2 miles almost every day and I am also working on mental health prep pre-surgery and will continue see a therapist post surgery. Best of Luck! Heart of the Sunrise
 
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Welcome to the group. The thought of having this surgery too young doesn't scare me as much as not having it at all. I don't think anyone really wants this condition, but it's a reality. I have know of my BAV since I was 18 years old, always hoped it would last forever. This Sept I had a case of Afib that lead to the decision that it was time. I too was in a state of shock, even tho I knew this could be in my cards one day.

Well I had my valve and Aorta fixed 7 weeks ago. Things are getting better each week. For me the walking has been very good for my rebound. I also started to ride bike at home too. I started my Cardio rehab at week four. It's going Good, the classes are very helpful for me exercising on my own too. I will be seeing my surgeon tomorrow for a follow and probably a good bye. I will be doing a stress test next week and visit my cardio, hopefully things go well. Maybe I will return to work next month. All in all, I'm a grateful for the help and knowledge I received on VR, and the great medical care I received .

All the best in your journey going forward.
 
Welcome. you may need surgery, but I don't know why you would need a mechanical valve. That should be your choice after discussion with your surgeon. I'm 41 and just got a tissue valve two months ago. My surgeon told me that the life expectancy of two patients my age would be the same if one got a tissue valve and one got a mechanical. The tissue valve patient would have risks from re-operation; the mechanical valve patient would have risks from blood thinners and greater risk of stroke.
 
VegasBAV said:
. My surgeon told me that the life expectancy of two patients my age would be the same if one got a tissue valve and one got a mechanical. The tissue valve patient would have risks from re-operation; the mechanical valve patient would have risks from blood thinners and greater risk of stroke.
Click to expand...

Interesting stat. Will have to look that up.

What about non-mortality stats and just dreadful complications like sternotomy or long hospitalizations getting treatment from post operative infections? I suspect that is dusted under the statistical analysis carpet.

Personally I've had enough re-operations. But of course each makes their own decisions.
 
Horrific situation?? Certainly not! You have something wrong with you that surgeons have been fixing, successfully, for decades. If not for the offending organ being protected by your sternum OHS wouldn't be that big of a deal at all. So step one is to stop thinking you're in a 'horrific situation' because you're absolutely not!

People with incurable disease are in a horrific situation, you simply have to have one operation. Not that I'm minimising the 'bigness' of OHS - I'm 42 and I've been through it twice in the space of a year - so I'm qualified to say it's not horrific. :)

Everyone has a different recovery but very few of us have had lots of pain. Many of us get depression, but it helps to know that it's normal and not going to last forever, and that your doctor can help you through it. What you'll find from this site is that the great majority of people found the surgery much easier to get over than they originally thought - and not one of us will say 'gee I wish I didn't have that done'.

Be positive, eat well, take care of yourself, trust your doctors, and get excited about what your life will be like with a heart that works properly - cos that's what you'll get!

Good luck from down under.
 
I got my mechanical valve twelve years ago at age 47. I was first diagnosed at age five, but was asymptomatic until about a year prior to my surgery when I developed debilitating chronic fatigue and shortness of breath over the course of about 6 to 9 months.

Although I was "functional" within a couple of months after my surgery, It took me about nine months to a year to feel fully recovered.

I had been very active physically prior to my surgery and gradually started exercising again. Three years post-op I did my first beginner's triathlon and have continued to train and race in triathlons ever since. I ran my first half marathon at age 55, eight years after my surgery, and am currently training for another one on March 17th (my 3rd). I'm no speed demon, but am in the "slow & steady" range. I love exercising and the endorphin rush you get with endurance training.

I've been on Coumadin since my surgery and it has really been a non-issue. The biggest inconvenience has been having to do a Lovenox bridge prior to having colonsocopies, but believe me, the "prep" for the colonoscopy is much worse than the Lovenox.

One thing I need to mention it that cardiac surgery patients can be susceptible to depression. I was fortunate to be made aware of that beforehand by a hospital psychologist. It still affected me, but at least my family and I were somewhat prepared to deal with it. It's gotten better over the years, but I still can experience the "blues" on occasion. Don't know that it's ever going to go away completely.

Welcome and good luck to you.

Mark
 
Hello-
I’m a 38 yr old male that was diagnosed with a Bicuspid Valve a year ago. Had an ECHO and Stress Test done and said I had a 1.5 opening….I believe the norm is a 4.0. Doc told me nothing really to worry about probably about 10yrs till I need any kind of surgery. But when I do need surgery they said perhaps the ROSS Procedure.
Now just went for my annual ECHO and changed doctors and now it reads I have a 1.0 opening and now leaking. I read online that between .7 and 1.0 is severe?? I’m confused…
My Symptoms are:
Dizziness
Headaches
Heart Palpitations
Shortness of breath when I make sudden movements.
But all these systems I just realized when I was diagnosed and not really sure if it’s all in my head.
The Doc wants me to go back in November for yet another ECHO…and maybe tell me my options….Not sure. I’m hoping he clears me for surgery. I would like the ROSS. I just feel like I’m a ticking time bomb.
 
globug0407,
I think its a shock to all of us when we first get the news, but as my doctor told me: "things could be alot worse - I could be sitting here and telling you that you have extensive plaque on your arteries, high blood pressure etc...which can be tougher to treat. The good thing about AVR is that once they fix it you can pretty much get on with things (from what I have heard - I'm waiting too!). If you've ever had a friend or family member die of a terminal disease like cancer, it really puts AVR into perspective...its pretty major, but at least there is a fix/cure and a good prognosis for most people. I'm mostly asymptomatic, so maybe that makes it easier to handle both physically and mentally. If I was showing lots of symptoms, I imagine the stress could be much greater (but you'd get operated on sooner). Hang in there - things will get better.
 
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