What was your initial reaction to your diagnosis?

[LittleOwl]

Definitely shock and disbelief... And fear. My mom has been through this and I am now going through it too, just 30 years earlier than she did. When they found it at my annual cardiologist appointment (for a different condition) I was too distraught to drive all the way home so I went to my best friends house and I just sat there bawling on her couch. After I calmed down and told my mom (probably the hardest part because she feels so guilty that she has passed this on to me) I started researching like crazy.

Seeing how well my mother has done through her treatment and how well the members of this forum have done, it definitely puts me at ease. We found mine 6 months ago, and I have a second echo today to see if it's progressing. Like Bean Counter, I am an avid athlete. I run and bike, and have 3 century rides in the next 4 months. I just keep on keeping on as much as I can and try not to think about what could happen and when it will happen. I know in the grand scheme of things, I feel lucky to have a condition that can be "fixed" by surgery. Life is wonderful, and if I have to have a big old scar and pop a bunch of pills to be able to live it, I'm okay with that

Hang in there and this board is an amazing support system

 

[CanoeBob]

There wasn't a long time for me to get over feelings; you have a problem with your heart in August last year til surgery in late November. I had been told at 16 I had a heart murmmor but didn't think much of it then. There was periods of dumbfounded fear, feelings of overwellming what am I gonna do through that time. I was told to stop physical activity so my bicycle went to the garage, no heavy lifting 10 lb limit and stay calm (yah, right) during the waiting period. I think the thought that kept me going was I'm sick, if I stay the way I am I will die before I want to, If I go through the surgery, I will be well with a life change that I didn't know what would be. I went on an anti anxiety medication to keep me calmer and my heart rate down during the wait period. I too have a history of anxiety and depression. So far the life change has been awesome!

I didn't know about this site until a few weeks ago so I didn't have a place to share my feelings nor gain benifit from the people who had gone through this before me.

Currently I'm in Cardio Rehab which is giving me the supervised exercise to take the 20 lbs off that I gained in the layover. It also releases endorphines that make me feel better about myself. It's a slow recovery, my heart rate is restricted to 116 bpm to gradually strengthin the heart muscle. no marathons for me to overpush the recovery time. I am back to riding my bike with a wireless monitor and have lost a lb. a week since starting.

On an anti depressant/anxiety medication since post op depression was recognized. I was spending to much energy trying to cope withmy feelings post op and that has helped alot during the recovery.

The biggest thing I learned prior to surgery is how precious life is when its threatened and through all the wasted worry I found that life on the other side is much better than it was.

Bob

 

[paige]

Hi everyone,

This is my first post here. I'm scheduled for MV repair (perhaps replacement) on April 18th. I was diagnosed with MVP in 1979 at the age of 14. Through my twenties and thirties I had an echo about once every five years. Late in 2009, my primary care doctor said that it was time for me to see a cardiologist. At that appointment, the cardiologist said that I'm borderline, and since I'm asymptomatic, maybe in the next five years or so I'd need a repair or replacement. At this year's appointment In January, though still asympotmatic, he told me it would be prudent to have surgery in the next six months. I always thought I would be fine. Even when he told me last year that I was probably another five or so years out, I didn't think much of it. Hearing six months is a different story! As someone else said, I was all calm and cool in the doctor's office and then lost it as soon as I got out to my car.

 

[DeuxofUs]

Wow. Such a mixed bag of reactions. Thank you all so much for your posts. It makes me feel better knowing that I am not alone in my anxiety. There were several posts that really hit home and I could relate to...

I mean, what medical condition is out there where one has to wait around to get worse?!?! How can this not have an effect on your psychie???

It has really put a lot of things in perspective for me. I have always wanted to go to Bora Bora... never have seen water that color and my husband and I have decided to go in October. It's a trip that one can put off because of the expense but lately, I don't feel like waiting. It's not that I think I will die on the table, it's just the realization that life is so precious so why wait?

I am hoping to talk to my doc today about some anti-anxiety drugs as sometimes I just feel downright paralyzed from anxiety.

 

[LittleOwl]

My mother went on anti anxiety meds for the 3 months leading up to her surgery and they were very helpful for her. The waiting part was definitely the worst for her. It also wasn't fun for my stepdad and me. Now we're waiting for mine to require surgery as well. You're right that it totally sucks that we have to wait to get worse. When I first got the news, every time I'd feel a palpitation or I'd be short of breath I would over analzye the heck out of it. But over the last 6 months I think about it less and less and just keep track of any symptoms. I also wear a heart rate monitor when I work out so that I can give my doc all that data. I only started getting nervous last week when I realized my next echo was today. Now I am sitting at my desk very impatiently waiting!

Definitely take that trip Even without the added issue of congenital heart defects or faulty valves, none of us are guaranteed any amount of time. Life is precious and you should enjoy every moment!

Something else that helps with anxiety is a massage - I got my mom and I both a membership to Massage Envy 2 years ago for Christmas and it really helps. I actually had a 2 hour one yesterday and I think that's the only way I am getting through today!

You've come to the right place though - these folks are a godsend. They were phenomenal when my mom had her surgery and really helped my entire family handle it.

 

[DeuxofUs]

LittleOwl,

Please let me know how it goes today with your echo.

I already do get massages and it helps but I wish I could get them every day!!!

 

[Nupur]

Take the anti anxiety drugs : )

Take the anti anxiety drugs : )

Good thread thanks for starting it! I spent all my 20's and 30's trying to exercise and be fit, and then right after I turn 40.. and living an incredibly busy life with a small child and aging parents with no time for any kind of sickness.. SLAM!! was given this news that "something is seriously wrong with my heart" and I will "need OHS in the next 10 years, for sure!".. it was too much to take, really! I was having anxiety attacks ending up in the ER.. my cardio gave me Xanax and asked me to go back to work to keep my mind engaged.. I did both.. and slowly in sunk in that it won't be the end of the world, I am not dying, I will have to face a very difficult thing like OHS, BUT look at all the positive things, hearts can be fixed (unlike livers or pancreas ; ), diagnosis means now there will be monitoring and chances of dropping dead is very low if someone is looking at your heart every six months.. and so on and so forth... I think after about six months I calmed down a little.. still freaked out after 3 years, but not take Xanax rarely..

Bottom line, you'd not be human if you were not freaked out. This is all ok.. seek help as you need it. The VR community has helped me personally immensely, to cope with my diagnosis as well as feel a sense of community with every one else going through the same thing... stick around.. and feel better

 

[kfay]

Wow. Such a mixed bag of reactions. Thank you all so much for your posts. It makes me feel better knowing that I am not alone in my anxiety. There were several posts that really hit home and I could relate to...

I mean, what medical condition is out there where one has to wait around to get worse?!?! How can this not have an effect on your psychie???

It has really put a lot of things in perspective for me. I have always wanted to go to Bora Bora... never have seen water that color and my husband and I have decided to go in October. It's a trip that one can put off because of the expense but lately, I don't feel like waiting. It's not that I think I will die on the table, it's just the realization that life is so precious so why wait?

I am hoping to talk to my doc today about some anti-anxiety drugs as sometimes I just feel downright paralyzed from anxiety.

I can't wait to hear about your trip to Bora Bora. Next year is our 25th wedding anniversary and that is where we have been planning on going. But I have been worried about traveling that far away from medical care and am thinking about changing our plans to travel around Europe instead. That is one part about all of this that I hate, I wouldn't have given it a second thought 3 years ago!

 

[DeuxofUs]

I can't wait to hear about your trip to Bora Bora. Next year is our 25th wedding anniversary and that is where we have been planning on going. But I have been worried about traveling that far away from medical care and am thinking about changing our plans to travel around Europe instead. That is one part about all of this that I hate, I wouldn't have given it a second thought 3 years ago!

Going this remote has also made me think twice but I figure since the rest of my heart is in very good shape and I am at 1.0 that I should do it. It's only for a week and I won't do any strenuous hiking (I can't take humidity anyway). My next echo is in August and I suppose if I really slip backwards then I will not go....

fkay, I take it you already have had surgery right? Are you afraid that something might happen if you go to Bora Bora? I would be more nervous before surgery than after it.

 

[kfay]

Going this remote has also made me think twice but I figure since the rest of my heart is in very good shape and I am at 1.0 that I should do it. It's only for a week and I won't do any strenuous hiking (I can't take humidity anyway). My next echo is in August and I suppose if I really slip backwards then I will not go....

fkay, I take it you already have had surgery right? Are you afraid that something might happen if you go to Bora Bora? I would be more nervous before surgery than after it.

I have already had my surgery, but I still have rhythm issues that cause me problems and I'm sure, if it weren't for this, I wouldn't have any leftover anxiety about this last surgery. I also just got back from a terrible trip to the Dominican Republic where I got food poisoning that required me to seek medical care which is what made me start second guessing our plans to travel to Bora Bora.

 

[drivetopless]

One other memory I had of when I was first diagnosed with BAV popped in my head as I read everyone's posts. I was in my early thirties and single when diagnosed. Besides worrying about the "Sudden Death" risks, I remember being devastated at that time and thinking that no one would love me because I was "defective." I struggled with when to tell new boyfriends about my condition and worrying about rejection.

Now, it's not a big deal, because I met the love of my life when I was 40. He is a cancer survivor, so he gets it and has been nothing but supportive and non-judgemental. We are kindred spirits and enjoy living our lives together with that perspective that a medical near miss gives you.

 

[Bill B]

I understand your reaction. The diagnosis hit me like a ton of bricks, primarily because I had never been sick with anything significant in all my 60 years. I was a marathon runner in my 30s and never had an inkling that anything was wrong with my valve until my BAV was discovered literally by accident. Until then I had the illusion that my body was more or less invincible. This blew that all away. I may not have cried, but I spent a number of sleepless nights trying to adjust to what I had just learned. I immersed myself in learning about BAV and trying to get some idea of what to expect. So, I turned it into an intellectual exercise. Some of what I learned was very reassuring, such as how common BAV is and how effective and safe valve replacement is. Things progressed unusually rapidly in my case, and I soon spent time lining up a good surgeon. I had surgery only a year later. I never felt sick or weak, so the whole thing still felt rather surreal, right up until they wheeled me into the OR. But it all worked out very well. A week in the hospital, a few months getting all my strength back, and now, about 1.5 years out I just have monthly protime test for coumadin and I don't see the cardiologist again for a year.

So, keep working on absorbing this rude shock and know that you are going to be OK - the odds are overwhelmingly in favor of a good outcome. Don't get the Bucket List out just yet. You may be stable for years and years and not require surgery at all or it may progress more quickly like mine did, but regardless, know that you are going to be OK. It's not 100%, but it's very, very close to it unless something else is quite wrong with you. I'm back to running, something I stopped doing 20 years ago. That's right, the AVR and aorta repairs (if needed) are so good there are NO exercise restrictions after the first few months of recovery.

Now, to just balance things a little, I should say that in addition to my over all positive outlook on this, it did really readjust my attitude towards life and living. It hasn't been easy and worry-free. I am much more conscious of my pending mortaility than ever and that hasn't gone down comfortably. I have been more possessed by the notion that I could go any day, but that's just something everyone manages to deny for most of their lives, as if we are immortal. I am more concerned that I need to resolve some hanging issues sooner rather than later, not because my life is going to be short but simply because this brush with mortality impressed on me that every day is a blessing we need to appreciate.

 

[Cooker]

When diagnosed my surgery was not imminent ... it was a little over a year (I think) before the cardiologist said. "it's time" ...

It was a stun but not debilitating ... I gained much peace of mind from the folks here and the support I received was and is indispensable ... I was just kind of in a fog when I walked though the hospital doors ... concerned but confident all would be well ... wish I never had to have it done but glad I was able to be fixed ... today I'm healthy and happy and look forward to each new day and what it brings ... Good luck:thumbup:

 

[LeakyUK]

I was diagnosed with severe Aortic Regurgitation in January - I was very angry because my wife had 'tricked' me into a checkup when I was refusing to go because there was nothing wrong!. I was then angry because I felt 'sudden death' in ignorance was better than going through months of worry & then dying during surgery. My BP rose from about 130 to 180 after the diagnosis! I am now on anti-anxiety meds (which took weeks to work) and have first interview with surgeon next week. I have not slept well since the diagnosis and have been fortunate to have sympathetic work collegues who have reduced my workload, allowed me to change my hours to go in and leave extra early and not object to my dozing at my desk! I have also noted advice from this forum and purchased a VERY comfortable recliner & new Audio Equipment so I can comfortably sleep downstairs if needed post surgery. I was on a high after the cath test, because I quite enjoyed it, and none of the dire side effects came to pass.

 

[Rosebud54]

In 2002, I went to the doctor for a sinus infection and came out of the appointment with an appointment in cardiology. At first I thought no way. After numerous tests I was put on heart meds, told to follow up yearly and that in my 70s I would probably have OHS to replace BAV. I never really got upset about it. I'm one to tend to say "well this is the cards I've been drawn...I have to accept it".

Here we are in 2011, I'm 56 with a 5 cm aortic anyuresm and a BAV that works great. I was shocked but wasn't too concerned because in 2002 I was 48 and my 70s looked a long way off! However, 4 years ago that anyuresm started to grow like a weed! God willing, at this time next week, my surgery will be over.

 

[JulieS]

I was so relieved to be getting it fixed and to be able to return to normal. My husband thought I was nuts!