Scared

[shambles]

Hello everyone.
I was diagnosed with a Bicuspid Aorta yesterday during a TEE test. To say I'm scared is an understatement. My health history was great or so I thought untill July 03 when out of nowhere I suffered my first Heart Attack at age 43. I did NOT have high cholesterol, high blood pressure, diabetes or even a family history of heart disease but I was overweight. The LAD was stented the following day. Cardic rehab followed until one day I slipped in the lobby of the hosiptal tearing the ACL/LCL/PCL, breaking the fibula and tearing the peroneal nerve resulting in permanant foot drop. After a week in the hospital I returned home to a very limited lifestyle. On the morning of August 16, 05 I was awakened by familar chest pains and suffered my 2nd heart attack. A heart cath was done but the vessel was unable to be stented. Four days prior on August 12th I passed a nuclear stress test and stopped taking Toprol. Fast forward to May 19, 06 I was getting ready for work when it happened again. Off to the ER and my 3rd heart cath. Once again I had taken a nuclear stress test this time the day BEFORE on May 18th. (sadly, it will have to be a cold day in ____ before I'll want to have another stress test). I recently started losing vision (albeit a very small area) in my right eye. Immediately after the heart cath my Cardiologist said things looked good. Later he came into my room to say he found a blood clot in my heart and that was what caused this heart attack and possibly the vision loss. Earlier this week I saw a Hematologist who recommended the TEE test to look for a paradoxical embolism. I had the test yesterday. It turned out to be the Bicuspid Aorta... I was so groggy when he was telling me this, my husband was with me but isn't one to ask questions and I have so many. My Cardiologist did say he would talk with the surgeon and get back with me. I CAN'T WAIT. I'm so impatient.

Is this surgery something I will need immediately? Is it something that can wait a month or two? Will it be repaired? Replaced?

I'm sorry I'm rambling. I have two young daughters and am so frightened.
Thanks for listening.

Shambles
7/08/03 Heart Attack -Heart Cath 7/09/03 - Stent Placed
10/15/03 Dislocated Knee, tore ACL/LCL/PCL, broke fibula, tore peroneal nerve, Foot Drop
8/16/05 Heart Attack -Heart Cath 8/17/05 - Unable to Stent
5/19/06 Heart Attack -Heart Cath 5/19/06 - Blood Clot, no stent
5/25/06 Diagnosed Bicuspid Aorta

 

[Ross]

Hi Shambles and welcome to the forum

First off, take a big deep breath and exhale. Repeat a few times until your relaxed. Without knowing exactly what was found and said, I can only guess that your on your way to surgery. That is not an absolute certainty, so don't freak out.

As far as the surgery goes, try not to fear it. Many have gone before you, as you can see by the members here. Many of us have had 2 and 3 surgeries and some, more. It is not a death sentence, there is risk involved but it is very minimal. To do nothing would pretty much guarantee your early departure from this life. I think it's in your best interest to get fixed!

During my last surgery, they thought I had a clot in the apex of my heart. The surgeon went in to remove it and found that it wasn't a clot, but a cyst! Perhaps this will be the story for you also.

I'll let the others say what their thinking. Again, welcome to the club.

 

[Christine]

Hi Shambles and welcome..

I understand your concerns and how overwhelmed you must be feeling. I was born with a Bicuspid Aortic. Next week will be my 4 year anniversary since my valve replacement. You've come to the right place for support and information. Granted, none of us are Drs. but we've all been thru it, and as Ross stated, some more then others.

Feel free to surf the previous threads and ask any questions.. take a deep breath, (exhale), relax and know that you are a strong person who will get thru this.

Chris

 

[Cooker]

Hi Shambles and welcome!!

Great place for support and many shoulder to cry/lean on. As Ross said, try not to freak out... that won't help. You have been through a lot, you must be a strong person. If you need OHS then you have come to the right place.

Relax, take time to breath and try to think of something soothing like chocolate

Tom

 

[Superbob]

Hi Shambles, and welcome to the Forum.

The good news is that it sounds like the doctors may have pinpointed a cause for your health problems that began so unexpectedly July '03. If so, the next step is to get the problem corrected so you can have your life back to enjoy.

I know it's scary to contemplate the journey that might be ahead on the road to better health. Let me just say most of us here have been scared, too, but with the help of family, friends, and this wonderful place on the Internet, we have gotten through. Stick with us; you will, too.

Cheers,

Bob

 

[dj/utvolsfan]

Hey Shambles,
You've come to the right place. Gosh, you have really been through it. I don't know that I would have been as strong as you have apparently been. I wish only the best for you. I agree with the others that it looks like surgery is in your future. If I was in your shoes, I would go with it, accept it and look forward to it as huge, huge step in the right direction.
Think about how much more you will be able to enjoy life...not having to worry all the time about your heart health and really getting to dig in and enjoying this fantastic life you have been given.
Keep us posted, will ya? Thinking positive thoughts for you!
Debbi

 

[Georgia]

Welcome to the site, Shambles.

There isn't a single person here who hasn't had the scared-to-death-willies. But you know, it's a matter of inevitability. No one here wants to die from a bad valve; so we did what we had to do and got on with our lives. Just as you will.

It seems to me that with your history at such a young age I'd be looking to get myself to a top-notch cardio facility; like Mayo or Cleveland Clinic. Sounds like you need specialty management.

Take some time & read through various threads (for starters, you might want to start with "bicuspid aorta." There'll be lots of folks along to wish you the best.

I'm sorry you have to deal with this, but the good thing is that you have a mechanical problem that can be fixed by a good mechanic. And we've all learned to thank God for small favors!

 

[tommy]

Shambles,

I'm glad that you found this forum. I responded to your post on another board. That board is very restrictive about posting URLs to other boards. One poster has gotten away with referring to this site - but perhaps not for long. I've seen such posts disappear - I digress. Not to knock them, but this board focuses on heart valves.

You have come to a great place for support and information. These are wonderful, caring people that will stick with you. Glad to see you here.

I find it helpful to write down my concerns and questions. Then bring the list and your husband to each doctor visit. Take your time to be sure that all questions and issues are addressed. No questions are bad questions. Have your husband take notes. After each visit, compare notes with your husband.

No one can predict outcomes, and medicine is not an exact science. But we try as hard as we can to know the alternatives, know the risks, bounce them off each other, and make the best decisions possible for ourselves. That process will help you make good decisions and also feel good about yourself.

Wishing you the best!

 

[gadgetman]

Welcome Shambles,

It sounds like you've already been thru enough. Your new family here will be available to help you with this next walk. We can provide guidance, advice, "been there-done that", a shoulder to lean on or just an "eye" to listen.

May God Bless,

Danny

 

[PJmomrunner]

Welcome Shambles. I guess I can understand why you chose the username you did! I can also understand why you must have a million questions.

I know very little about heart attacks, but I know a fair bit about BAV and I'm not aware of any relationship between bicuspid aortic valves and blood clots or heart attacks. (I trust someone will refute this if I am incorrect)
Simply having a bicuspid aortic valve does not mean one will ever need surgery; many people live long healthy lives with well-functioning bicuspid aortic valves.

My biggest question about your situation is: where are the blood clots coming from? Apparently, your hematologist is asking this question because he ordered a TEE to look for a hole (a Patent Foramen Ovale) between your heart's atriums, where small clots or particles in "unclean" blood bound for filtering in your lungs can be passed from the right atrium to the left atrium and then into the left ventricle and on out to your heart or brain. I gather they did not find a PFO, which is good news.

I hope your medical team aggressively investigates the origin of these dangerous clots and takes appropriate precautions to protect you. It sounds like obesity is your only risk factor, so they may need to step "outside the box" and consider more obscure possibilities. You have every reason to be impatient. You should feel free to push hard for answers and enlist the help of family members to push hard for answers for you, if you are not up to it emotionally. This forum is a fabulous resource for bolstering one's ability to assert oneself as well as for offering all other types of support. You can rely on us and I hope you do!

Wishing you all the best.

 

[marky]

Welcome..
You will find great advice and support here.
I don't really have any medical advice for you..but want to welcome you and give you a hug.. sounds like you have been through a lot already!

I just had OHS 3 weeks ago today..and I too have children.. I will say the first 2 weeks were the hardest..but I have been 'alone' with them for the past week..and it is ok..
As most will tell you the thought and anticipation of surgery is much worse than the actual process.

I hope that you will stay for awhile..and ask away..there are some very knowledgeable folks here

 

[xbxb]

Bicuspid Valve

Bicuspid Valve

I can give you a little of the information I learned on the BAV. I was diagnosed at 19 years of age and last August at age 42 had it repaired along with an aortic root replacement.
Being diagnosed is no reason to panic - 1-2% of the population has a BAV.
Many, many, people live their lives - in the words of my cardiologist- "to a ripe old age w/ a bicuspid valve" and NEVER need surgery. So the odds are if you only had a BAV - other than no heavy weight lifting and taking antibiotics when you have your teeth cleaned, your life does not change.
Last summer I became short of breath and found my valve was leaking badly and my Aortic root was dilated. 50% of the people with a BAV will have a dilated Aortic root that will need to be replaced.
I had the option of my own valve being repaired. This is a relatively new surgery - the last six years or so - and not done at all instituitions. If unable to repair your own valve a tissue or mechanical are the other choices. If and I say IF you ever did need surgery I would tell you, you need to find someone who is a valve specialist (there area lot of these) and someone who is an Aorta specialist as well.
Cleveland Clinic, Mass Gen- my hospital, Texas Heart Institute, Brigham & Womans are a few hospitals where I received opinions.
I would recommend that if you are overweight try to lose the pounds - I know it is not easy but all the Dr.s request it - and you will feel better.
Lastly IF you ever needed it at the very worst a BAV is totally fixable, a dilated Root makes it more complicated but is totally fixable, and the odds are excellent that if you have the surgery done in a major institution you will be fine.
Eight months after surgery I am working out 4-5 times a week.
I hope this info educates you and puts you at ease. Good luck and remain positive!!!!!

 

[tobagotwo]

A little soap-box music...

On the morning of August 16, 05 I was awakened by familar chest pains and suffered my 2nd heart attack. A heart cath was done but the vessel was unable to be stented. Four days prior on August 12th I passed a nuclear stress test and stopped taking Toprol

How many times do we hear this with these stress tests?

Shambles, there's nothing in what you related that would tell us whether you will need surgery for a bicuspid valve soon - or ever. Many people live their entire, full, long lives with bicuspid valves and never know it. I hope that's you. However, you're among a flock of survivors of that operation. It's not as bad as you might think, if it did come to pass.

Hope you can get some rest and maybe have a bit less to worry about real soon. Seems like you've had quite a bit to deal with.

Best wishes,

 

[ALCapshaw2]

Welcome to our world Shambles !

I'm surprised no one has yet mentioned the statistics for valve surgery. While Heart Surgery is MAJOR surgery, it is a highly refined art and the risks are minimal when performed by a surgeon who does this regularly (200 / year) at a hospital that does a high volume of heart surgeries (1000 / year). For first time OHS in patients under 60 years of age, the risk is 1% fatality and 1% stroke.

The risk for doing NOTHING is 100% fatality if the valve is in danger of failing. This makes surgery look MUCH more attractive!

And YES, we've ALL been scared out of our minds BEFORE surgery. After surgery, most of us conclude that the pre-surgery worry was the WORST part. The reality is that most of us just feel some 'discomfort' afterwards with some muscle pain (from the stretching) that is best relieved by Massage and Physical Therapy / Cardiac Rehab.

'AL Capshaw'

 

[Superbob]

Shambles,

I just wanted to second what Al said. That's as concise a summary of risks/benefits/effects of OHS as I've ever seen. I know I was scared when the cardio and surgeon agreed I needed valve/root replacement, but my experience is exactly as Al described it. I found a great surgeon and his skill has given me a new life. Sure I was scared beforehand. But without the surgery, I most likely would not still be here or my days would be numbered.

All best wishes,

Bob

 

[shambles]

Hello again,
Update from my earlier post. My Cardio mentioned that I probably wouldn't remember much from the TEE test - well, he was right. My husband just told me that in addition to the Biscuspid Aorta, I also have a "tumor or growth" situatuted at the top of the LAD and that is what is throwing blood clots and causing my heart attacks. In the past week I have told my story to numerous people and not once did he think to remind me of the tumor.

I apologize for the lack of information.

 

[Georgia]

Well, at least you got some answers. What did your cardio recommend?

 

[shambles]

I haven't seen him since waking up from the TEE test last Thursday. I plan on calling his office tomorrow first thing.

This whole thing is a nightmare. Im glad I found this website. :O)

 

[afraidofsurgery]

Hi and Hang In There!

Hi and Hang In There!

Hi Shambles! I can relate to your state of mind (see my username).

Hang in there while you get to the bottom of this! I finally had my OHS last year after watching/waiting for a long time. I had a 'sort of' bicuspid valve that was moderate/severe regugitation replaced w/ a mechanical valve.

Must say it was an incredibly positive thing to go through. Thankfully, I was asleep for the worst part (you know...the big incision thing) and had awesome doctors and hospital care.

Are you going to a doctor associated with University of Nebraska Medical Center? I'm always partial to docs at teaching hospitals, but that's just me.

Take care!!!!
Patty