Hi All, I'm Alex

[Alexthegolfer]

Hello Everyone, first post here so I'll tell you my story.

As the username would tell you, my name is Alex. 27 Year old Male, from the Suburbs of Chicago and I absolutely love(d) golf.. Rewind to July 21 of this year I was out golfing on a hot day after imbibing many beverages the night before at a friends wedding. I ended up collapsing in the clubhouse of the course I was at after quitting after the 13th hole. I was feeling extremely hot and exhausted and started to feel like I was losing my strength.

An ambulance was called and I spent about 3 hours in the hospital for dehydration and exhaustion. I also suffered my first "Real" panic attack while this was all happening, heart rate was over 180, I was sure I was going to die. I had a 12 lead EKG done in the hospital and tests done, everything said I was fine, it even said on the report no heart murmur.

Fast forward too about two weeks ago. After feeling sick and tired, and having many months of daily anxiety about my health, fear of collapsing, fear of being dehydrated and some more panic attacks I finally went to talk to my general practitioner Doctor. He did some blood tests that showed no problems, can't recall what those tests were. But he did tell me I had a heart murmur. *Cue the anxiety bells* I didn't even know what a heart murmur was but my fathers father had passed away when my dad was only 13 from a heart attack, and my grandmother had to have a heart valve replacement at age 80. I am not sure why she did.

Anyways he sent me for a echo-scan which I had done on Friday the 18th. Later that day I got a call from my Doctor who told me I have a bicuspid aortic valve. With moderate to severe damage or leakage. I don't remember, it was a 10 minute call that scared the bejeezus out of me as soon as he said, "So Alex, most people are born with three cusps on their aortic valve, you only have two. After that I think I said "OK" to the next 30 things he said, without really being able to process any of it. He told me to make an appointment with a cardiologist, which I did. That appointment is tomorrow at 4:15.

Ever since the 18th everyday has been tough. I feel like I can feel my heart all the time. If my leg gets sore I assume it is not getting enough blood, a headache, heads not getting enough blood.

The night after I found out this news I laid in bed for about 3 hours unable to sleep, with a re-occurring thought being that, while I don't want to die, maybe the best result of all this would be if I had the surgery and died during it. I know it sounds crazy to any of you that have gone through this and celebrated your anniversary. But I'd be surprised if none of you in "the waiting room" didn't think the same thing. I have a fear that I will not be able to have a good normal life, without fear again.

I hope I can change my pattern of thinking. My hope for this Cardiologist appointment tomorrow (Tuesday) is that they tell me that while my heart has not had any real damage to it due to what has been happening, the best course of action would be to do the surgery immediately. I just want this done, I want to start to recover. I feel like my life is on hold for at least the next 6 months.

It's amazing. Since getting the "news" that I have this bi-cuspid aortic valve, I can go from normal, to absolute breakdown in 30 seconds. Going to sleep every night is tough. I haven't felt normal for more than a couple hours a time since July 21st. I just want to feel normal again.

Thanks everybody. I hope this community can help me, and maybe someday I'll be posting about my valvesaries, and helping out others who were in the same spot I'm in now.

Thank you all. Hope to get to know some of you and learn your stories, and hopefully absorb some of your wisdom and courage. I feel like I don't have any yet.

 

[dick0236]

Hi Alex. After you have spent a little time reviewing other threads on this forum, you will find lots and lots of folks who have been where you are.....and you may be surprised to find that many young people have faced OHS.....and continued on with their lives afterwards. I also enjoy golf......played today and plan on playing tomorrow. There is no reason that your life will substantially change after you get fixed.

 

[T in YVR]

Hang in there Alex. I had most of the same feelings, as I am sure many people here did. I too had a bicuspid valve, severe leakage, etc etc. I just had it replaced Oct. 1. The best thing you can do is face this head on as you have started to do, learn as much as you can (or are comfortable learning) about your condition and ensure you have the right medical people looking after you. The waiting is the hardest part - especially the first month or two - while you wait to get all the test results, come to grips with the situation, get test dates and the surgery date set, and decisions made etc. After that it gets a bit more manageable once your plan is in place. Most people can resume a full, normal, active life once its fixed. Read the posts/threads on these boards and it'll be one of the best investments of time you will make during your time in the Waiting Room....

Tony

 

[knotguilty]

Alex, I am sorry you have to go through this. You will be in my prayers tonight. You are not alone, we all understand your stress. There have been many people before you that have gone through this. And many even younger than you. There are no words to make you feel better, but try to understand that you will get through this fine. If you do in fact have severe stenosis, it is very good they found this now. Without doing anything, your prognosis would not be good. Stay on the positive side. I believe in fate and God has a special purpose for you, you are meant to be around for a long time. I personally look forward to hearing your journey. The people here are very inspiring and helpful. Read their stories and posts. We are all on the same journey in life. Good luck to you.

 

[pellicle]

Hi

welcome aboard.

first few things (which may or may not help), this is not as 'uncommon' as you may think, something like 1~2% of the population. So in the USA alone you guys have between 3 and 6 million people with quite the same situation. Some are worse off some better off.

as a result of this (and its not a new thing either, people have had this as part of the genetic basis of our species for many many thousands of years) the medical science has really become good at handling it. I had my first operation as a kid because my bicuspid valve caused issues from when I was 7 or so.

Ever since the 18th everyday has been tough. I feel like I can feel my heart all the time. If my leg gets sore I assume it is not getting enough blood, a headache, heads not getting enough blood.

well, knowledge is your ally and all that will happen to you over the course of this is that you will get well.

simple.

I just want to feel normal again.

well I would say that "normal" is a loaded term. Yes you will be able to do things as you did before, and people who don't know you will not give you a second thought. You will appear normal to them. They won't think "oh wow, poor guy" ... but there will be changes, perhaps small ones, perhaps some confronting situations.

but "normal" in the sence you were blissfully ignorant of your situation ... well that part won't happen. But that's a good thing.

Hope to get to know some of you and learn your stories, and hopefully absorb some of your wisdom and courage. I feel like I don't have any yet.

Wisdom comes with experience and the desire to learn and understand it. Some bits of Philosophy help too. The way I think of the difference between knowledge and wisdom is this:
you can know that something is bad for you but you keep doing it (smoking for instance) but when you stop doing it because you know its bad for you, that's wise.
However if you never smoked and think that its stupid then that does not necessarily show wisdom.

Right now (because all this is new) I think that the most wise thing you can do is to try to calm yourself and stop panicking about it. That path will lead you towards hypochondria:

The persistent conviction that one is or is likely to become ill, often involving symptoms when illness is neither present nor likely, and persisting despite reassurance and medical evidence to the contrary. Also called hypochondriasis.

Many things happen in life that change the directions from what you had expected them to be. It is how you handle these that is a measure of wisdom and strength. Strength comes from training and repetition (ask anybody at the gym), and so by facing your situation with resolve bit by bit you become stronger. I am quite certain that my own experiences with surgery and the choices we make has made me stronger, and has helped me to deal with other crises in my life.

welcome to soul gym

 

[Agian]

Alex, it sounds like you got the first panic attack before you found out you have a bicuspid valve. The 'worst case scenario' is that you'll need a valve replacement. I'm in the same boat as you are, like many others here.

Anxiety problems in bicuspid people, even before they find out about their valve, seems to be a recurring theme.

 

[epstns]

Hi, Alex, and welcome to The Waiting Room, the virtual room where many folks await their own turns at valve surgery. Congratulations on your bicuspid valve diagnosis. I say this only half in jest, as in, I am not congratulating you on having the bicuspid valve, but on having it diagnosed. Now, even if you do not need immediate surgery, you will be monitored and surgery will be suggested before any real damage is done. This is what I experienced -- having a bicuspid valve (but it sounds like yours leaks. . . mine didn't open fully) and watching it for over 9 years in The Waiting Room while it slowly progressed until "ripe" for surgery. During the waiting time, I learned to compartmentalize things so that I had a very normal life. I worked (50-60 hours a week), ran, rode a bike, went to the gym, raised a family -- you get the picture. As long as the annual exams were OK, I just went on with life. Then things began to slow down drastically. I finally told my cardio that I was tired of being tired. We scheduled surgery for a couple of months to the future.

I had my valve replaced at age 63. I had been going to the gym right until the last month or so, so I was in reasonably good shape. I hit many of the speed bumps on the road to recovery. I won't burden you with which ones they were, as I do not want to alarm you. My problems were my problems - there is no reason that you should expect any of them for yourself. What you should expect for yourself, as I have experienced, is the return to a normal life that is more full than the one I left behind. Now, 2 1/2 years after surgery, I can do more at the gym and working around the house than I could do for several years before surgery. I feel so much better, it makes me wish I could have been "ready" sooner.

You said you are in the Chicago area. So am I. In fact, there are quite a number of us around Chicago who try to get together a couple of times a year for dinner, lunch or just a chat. Also, depending upon where in the area you are, I may be able to help with suggestions about docs and hospitals. PM me (private message) if you want to discuss these things. That way we don't have to censor our conversation to keep it fit for public consumption.

 

[Rachel]

Oh I can relate to your situation!!!!

I had pretty much all those thoughts and fears when I first found out about my bicuspid and aortic aneurysm as well as panic attacks (before and after I found out) that came from out of nowhere…..

I have to tell you that it’s been about 2 years and some months since my surgery and I’m doing REALLY well!!! I’m a runner and I still run, I’ve got energy that I never had before and I’m really grateful for my life.

I think that this news can be such a blow – but there’s lots of life left after OHS

So glad that you found this site – the people on here are amazing and supportive and we’re all here for you.

Rachel

 

[mcsf]

Let's face it. You played a bad round of golf and now you are looking for an excuse. You'll be fine and you will be back shanking your drives soon enough.

 

[neil]

well come alex

 

[pellicle]

Let's face it. You played a bad round of golf and now you are looking for an excuse. You'll be fine and you will be back shanking your drives soon enough.

now under normal circumstances this is exactly what I'd have said ... man I've become so PC here...

 

[Alexthegolfer]

Thank you all for the replies, support, encouraging words, and INCORRECT interpretations of my golf game! LOL. I stopped playing a lot of golf because of the anxiety after that first incident on the course, but I did play 4 or 5 more rounds between then and the 2nd week of October, and a week before my bicuspid aortic valve diagnosis, I was still shooting low 80s and pounding the drive 300 yards! Putting this in words makes me laugh because, even though my condition hasn't changed since that last round of golf, due to the diagnosis I am scared to even swing a club.

The welcome, the kind words, and reassurance of life after OHS means a lot to me. I have always been one to enjoy more serious conversations that most of the time people aren't comfortable with having with their casual friends. Thats why I have always responded well to therapy. Ironically I went to a therapist to talk about the anxiety issues THE DAY BEFORE MY ECHOSCAN AND DIAGNOSIS... I have another appointment set up with the therapist for mid-november, and it looks like we have a whole new bag off issues to work on lol.

Something I read on this site last night that helped me over the last 15 hours or so is the reminder that my condition did not get to be this way overnight, and it is not drastically changing day by day. Since getting the diagnosis, I feel like I could walk up a staircase and kiel over, but thats not true at all. I could probably still be out there banging balls at the driving range 3 or 4 times a week like I was up until July.

Steve, I have seen some of your other posts on site and based on your post count you are clearly a regular member here and to me that means you would be a great person to chat with. I will certainly send you a PM after my appointment with the cardiologist. (Only a couple more hours!)

I am happy to hear that some of the Chicago locals get together sometimes for lunch dinner, to chat and catch up. There is not enough positive things to be said about being able to talk to people that know what you are going through, what you are about, have things in common, etc. I have always enjoyed internet forums, I am a member of many, some related to fishing, some related to golfing, and other things, this forum will definitely become a fixture in my "Bookmarks" and my regular internet travels. The more I know, the more time that passes, the more I will feel confident about my ability to contribute, instead of just be a sponge and soak up everyone elses information and positive vibes.

 

[mcsf]

Alex,

I had a AVR when I was 22. A few years later I tore my ACL skiing. I had surgery to repair my torn ACL. What does this have to do with heart surgery? For me, heart surgery was easier than knee surgery. Heart surgery sounds more terrifying than it turns out to be.

M

 

[maisiejane]

Hi Alex and welcome
Hope you find some comfort in your exploration of this forum x

 

[Azzurri]

I'm a 47 year old male in the Western Suburbs of Chicago and I've been lurking on this site for about 3 years. In late 2010, I was diagnosed with BAV and a dilated aortic root and had many of the same feelings you describe. For the six month period from my initial diagnosis until my next echo and MRI, I was essentially in a state of shock. I thought about it constantly, always felt like I was having chest pains and constantly kept checking my pulse. It was a difficult time. Since then, I have been tested annually, am taking medication, and have essentially been stable with no significant changes to my condition. I am in the "waiting room" as they say. I've been able to put the worry aside and continue on with my life, with the knowledge that at some point, this will have to be corrected. The support I've received just from periodically looking at this website has been tremendous. In addition to reading about Steve who was successfully treated (with some road bumps) at the same facility I am treating at (Northwestern) there are countless others with similar experiences described here who lead me to believe that while we've had some misfortune in being dealt this hand, there are certainly a lot of worse things that could happen to one.

Hang in there. Like pretty much everyone else who has come before us, we will get through this. And if you'd like to get together with other BAV patients, I see that there is a BAV seminar on Nov. 12 where local cardiologists will be discussing issues of concern to people like us. $15 and they are providing refreshments!! I may try to head into the city for that one. Here's a link with the info. https://www.luriechildrens.org/en-u.../fellowships-education/Pages/abcs-of-bav.aspx

 

[Alexthegolfer]

Azzurri! I am a York High School Graduate! Born and Raised in Elmhurst. I did move out of Elmhurst this summer though, I bought a house approximately 2 months before finding out about my BAV. Talk about added stress, I have a fear of having my "position eliminated" while I am out of work recovering. Probably not a rational fear.

 

[annaaurora]

Hey there, I'm Anna, of course you knew that. You have much to process and I gotta say you'll be on all kinds of roller coasters. I had a valve repair which I guess I was lucky because it was going to be a replacement. Anywho I spent the last couple of years denying all the symptoms. Really kind of screwed my heart up. So the good news for you is that you found out what maybe the matter early. It took the Cardiologist a week to find out what was really going on. I was in hospital while they were figured it out.
So it may take a bit for them to figure out what's really up. So as much as you can try keep one day at a time as your theme. Some of the tests are uncomfortable that's all. Let us know. Especially the old timers.

 

[big_L]

I knew I had a murmur for years, but it didn't 'help' any when 'all of a sudden' earlier this year, I'm told that I need valve replacement surgery. It's tough to hear and most of us have been there with the same emotions as you.

It WILL get better and you will come out on the other side. We all have. Hang in there, you'll be fine.

 

[Azzurri]

Alex,

Great to hear that you are a York grad! My son will be going there next year. I think I've seen posts on here from someone else from Elmhurst as well, which simply supports that we have a fairly common ailment. I think the estimates are that 1 to 2 percent of the population has a BAV, which means that you probably weren't the only one in your graduating class at York that had one!! I have moderate to severe leakage and have had it for at least three years. I go back and forth on whether it would be best to just have the procedure now and get it over with or whether it's better that it happen later. But the reality is that our thoughts on it don't matter much. Once you've found a cardiologist that you trust and respect (and perhaps a second opinion), we should follow their expert advice and let it play out. Worrying about it isn't going to help much. I've worried about it plenty and it still stresses me out from time to time but I know my doctors know what they're doing and when the time is right, they will do what needs to be done. Hang in there and get some sleep!!

 

[AZ Don]

I can remember when I first learned I needed open heart surgery. It is very scary news, but the reality is that your problem can be fixed. You will find the experience and information on this forum to be of great help, I know I did.

I had a AVR when I was 22. A few years later I tore my ACL skiing. I had surgery to repair my torn ACL. What does this have to do with heart surgery? For me, heart surgery was easier than knee surgery. Heart surgery sounds more terrifying than it turns out to be.

I had knee surgery as well and agree completely. Knee surgery was much more painful. It was almost a week before I was up and hobbling around. I was walking the day after open heart surgery.

And if you'd like to get together with other BAV patients, I see that there is a BAV seminar on Nov. 12 where local cardiologists will be discussing issues of concern to people like us. $15 and they are providing refreshments!! I may try to head into the city for that one. Here's a link with the info. https://www.luriechildrens.org/en-us...cs-of-bav.aspx

Lucky. I am across the country but would love to hear about what they have to say if there is anything new or of note.