Do I Really Need Surgery

[Arc_Weld]

I am a 38 yr male that was recently diagnosed with Severe AI. About 12 months ago, I accidentally discovered that my blood pressure was extremely high.. about 210/100.

My family doc put me on Norvasc to lower my pressure. About two months later, I was suffering from chest pain and was admitted into the local hospital. I failed the stress test. I was cathed and no blockages were found. Later, a heart echo determined that I had a leaking bicuspid aortic valve. Moderate 2+. EF 62%

Fast forward to May 2005, I have another heart echo, and my bicuspid aortic valve is now leaking severely 4+ and my left ventricle is enlarged [6.2 cm]. My aortic root is also enlarged [3.9 cm]. EF 60% . Chest X ray also shows my heart is enlarged

The cardiologist asks me how I feel. .. I felt great.. Strong as an Ox.

Now, its September 2005..Labor day weekend.
I work around the yard and go atving.. however.. I notice that I get short of breath really easy. Even washing the cars, I notice that I keep getting winded. That night, I wake up gasping for air. I have to walk around for I while and eventually feel better.

I go to the cardiologist the next morning. He orders a cath. The prognosis is the aortic valve is severely leaking. He recommends AVR and refers me to surgeon. The surgeon also recommends that I have the valve replaced.

If I wait, my heart will be come more enlarged along with my aortic root. I don?t want to injure my heart beyond recovery but don?t want to have the surgery too early.

The dr. says it time now? What do y?all think?

 

[geebee]

The fact that your heart is already enlarged and you have many symptoms indicate to me that surgery is past due. Most of us advocate surgery before any heart damage takes place and you are past that point already. You will find things getting worse faster and you need to nip this in the bud now.

Go with the doctors' recommendations and get your valve fixed now.

Best of luck and keep us posted.

 

[Cris N]

After reading a lot of posts here about so many cardiologists adopting a wait & see attitude, I guess I'd suspect that you need to have the surgery ... and soon. My cardiologist was the same way. I don't have my numbers but I know he was nervous when I first saw him on a Tuesday (day after my first echo) - he said something like, I'm sure the surgeon will find a way to get you on his schedule Monday, if not sooner. I did indeed have the surgery on Monday.

My symptoms sound a bit like yours - I had no idea there was anything wrong with me until I woke up in middle of night with extreme SOB. Finally went to ER late the next day. Still didn't know I had a problem. ER doc ran some tests & told me I probably had moderate emphysema. I ignored it. I went another 2 months & went to see an urgent care doc in my new town. He asked how long I had had the heart murmur. I said, what murmur? Insurance finally kicked in & I saw a PCP. 2 weeks later I had surgery. The surgeon said that the SOB was probably caused by failure of one of the chordae holding on to the valve.

Other people will most likely be along who understand the numbers. My take on it is when the surgeon says cut, and the cardiologist says cut, it's probably time to cut.

You've found a great site to help you with questions, fears, and anxiety. Ask away. I hope you come to terms with this soon and get the medical attention that you need.

Cris

 

[Mary]

I've got a fast answer for an easy question. See a surgeon and have the surgery.

 

[PJmomrunner]

The "severe" AI classification...the heart enlargement...the symptoms...any one of those things alone is reason enough to operate. It is not too soon. Waiting will only jeopardize your ability to recover.

 

[LLJ]

YES. YES. YES.
Any other questions?
Laura

 

[KristiinSD]

Sounds like its time.

Sounds like its time.

I had sort of a similar course with mitral valve, although my cardiologist was not in any rush for me to have surgery. I feel like I don't want to further compromise my heart's ability to heal by waiting any longer. I would actually liked to have this surgery yesterday. I, too, have serious shortness of breath...

It's weird though, isn't it? I imagine this is what people feel like who have cancer. I don't feel ill really so how could I need surgery? I have this recurring fantasy that I start working out somehow this will all go away...then I remember that my left ventricle is enlarged...

Good luck and glad you found us. There is lots of information here.

Kristi
mr
surgery 9/29/05

 

[EVELYN]

Get thee to a surgeon, and quickly!!!! IMHO!!! Enlarged heart, Severe AI, SOB!!!! "STRONG AS AN OX" but dumb as a stick......isn't that the old adage?

This is nothing to fool with.....you're young and have your whole life ahead of you, with surgery....without it, well, you know the answer.

Good luck with your decision.

Evelyn

 

[Ross]

This guy be knocking at your door very soon without it!

 

[ALCapshaw2]

TOMORROW would NOT be Too Early.

Where are you in Alabama?
What hospital?
What surgeon?

'AL Capshaw' (near HSV)

 

[tobagotwo]

It's very much time, my friend.

Your doctor seems to prescribe catheterizations too easily. It is very common for bicuspid valvers to have very clean arteries. Many people only have one catheter angiogram, and that's to determine if there are blockages just prior to surgery, and corroborate the evidence of the echoes.

Your aortic root will also need work, or it will continue to enlarge. Please make certain that they check your aorta for aneurism-related enlargement as well. You wouldn't want to have to go back in for that later, and it happens more often than is necessary.

Find a surgeon with lots of experience, who is doing hundreds of valve operations each year. And a hospital that tends to a lot of valve patients.

Best wishes,

 

[Yaps]

I agree , have the surgery..I also was too late and have many complications... where in Alabama are you?
I am at the gulf, near Gulf Shores. I went to Thomas Hospital for my surgery, didnt want to go all the way to Mobile..lol
Sooner the better so you may continue your life.Love yaps

 

[Nancy]

Get your operation done asap. You feel you are not symptomatic, but I think you are in denial mode. You have lots of symptoms. Think about it.

Sometimes people develop symptoms slowly and don't notice that they are becoming very debillitated.

I suggest you reread your own post rationally and you will see how things have gone downhill for you.

Do not wait until some sort of "event" happens to you. Take good care of yourself and get things fixed under the hood.

A surgeon will help you make the right decision. So make your appointment.

 

[Arc_Weld]

More Details on Arc-Weld

More Details on Arc-Weld

Thanks for all notes!

I currently live in Montgomery Alabama area.

I have a very active life style.
I am always working in the yard or on a project.
I don?t smoke or use tobacco.
I have no issues with my kidneys, liver, lung, diabetes, or bleeding.
I am 6?2? and weigh 220lbs? a little heavy.. not much.

I am considering surgery in two locations:
1. Sacred Heart in Pensacola Florida
2. UAB ? University of Birmingham

Both seem very very good.

I am on the surgery schedule in Florida for Oct 6th, 2005
However.. I have a UAB appointment in the next few days?

I am considering a St. Jude?s Mechanical valve at this time.

What do y'all think??

PS.. this is a great site!!!!

PPS:
My wife and I love RVing.
We have a 36' Mobile Suites 5th Wheel

 

[afraidofsurgery]

Pay now or pay later

Pay now or pay later

I agree w/ the popular voice. It is time, my friend.

I was asymptomatic for a long long time and was exercising, lifting weights, working, etc., I was FINE. I started to develop shortness of breath and thought I was making it up. Had angina and thought I was imagining it. Was tired all the time and thought it was 'cause I'm a single mom. Luckily I had a scheduled visit w/ my cardio and he told me it was time. I got a second opinion and she said it was time w/o even listening to my heart!! OK I succumbed to the truth and had my surgery Sept 7. I could tell right away when i woke up from the surgery in spite of the pain and tubes etc., that I felt better.

Also have to tell you I looked up lots of articles on the timing of surgery for regurgitant (me) and stenotic (you) aortic valves. There is some debate but a number of studies have shown that long-term survival increases dramatically w/ earlier (first sign of symptoms) surgery. That got me as I planned to be around for a while for my daughter who's 6.

Also my cardio told me he's seen lots of patients deteriorate quickly after the appearance of symptoms which can result in the heart muscle not being able to squeeze normally ever again and you're permanantly stuck w/ heart failure. Yuk, I don't advise this.

Hope you can use the momentum from the posts here to sail in and get this taken care of. Use our courage if you can't find your own - that worked for me

Patty

 

[Randy & Robyn]

I'm sure at this point that this post is just being redundant but I have felt the same as you since I was diagnosed back in January. I knew for years that something was "not quite right." I could feel my pulse in my fingers and toes, had systemic hypertension, and could watch my heart forcefully pumping just by looking at my chest. No shortness of breath, no pain, and to this day I have an endless supply of energy. My previous doctor never caught the murmur. Then I switched doctors and, mirroring Cris' case above, he asked me how long I had had this murmur.

I truly believe my aortic valve has been leaking badly for years. My heart is slowly enlarging. I very much want to deny that anything is wrong and that I can live with this. But deep down I know better.

In three weeks I go in for surgery and look forward to coming out with a heart that finally works right.

If you have only ai and no stenosis you might want to look into valvuloplasty as opposed to replacement. In many cases they can repair the valve.

Good luck to you,
Randy

 

[KathyH]

ARC,
From one RVer to another-sounds like you are on the right track now. There are some other members that have had their surgery in UAB, I don't recall anyone having surgery done at Sacred Heart in FL. Meet with the other DR ask your questions and go from there. Others will chime in that know more about those hospitals.
I have a St Jude valve, and feel it was the right choice for me. I have no problems with coumadin. I don't let it change my lifestyle.I am an active person, I ride my bike 10miles 3-4 times a week and walk inbetween. Read the section on valve choice and go with what you feel is best for you. There is no right or wrong choice.
Once you have your surgery you will realize how bad you felt. You will be amazed at how much more energy you have in 6 months.
Kathy H

 

[JohnnyV_46]

I wouldn't wait. I'm 8 years older than you and I really didn't have any symptoms that I was aware of. I was a smoker so I attributed the shortness of breath to that. I knew for about the last 10 years that I had high blood pressure and was taking medication for that. I had a mild heart attack Aug.16th and had cartiac Cath the next day. Found out I had 3 blocked coronary arteries along with the Bicuspid Aortic valve and an Aortic Anneuryzm. So on the 19th I had a triple by-pass, new Edwards bovine tissue valve and aortic root. I'm really starting to feel such a big difference. I wouldn't wait. It's just gonna do further damage.

 

[ALCapshaw2]

I had my AVR at UAB. It is an EXCELLENT Heart Hospital, ranked #13 in the nation. There are 3 primary surgeons, Dr. Pacifico who co-founded the Heart Program at UAB with Dr. John Kirklin (now deceased), Dr. James Kirklin (son of John Kirklin) who is head of the transplant team, and Dr. McGiffin (a delightful Aussie with outstanding communication skills) who assists with transplantation and does a lot of high risk surgeries.

See if you can find out who has the most experience with BAV and tissue disorders (that often accompany BAV) that may lead to aneurism development.

I've never heard of the Florida Hospital you mentioned. You can compare hospitals by procedure at www.HealthGrades.com

FYI, the success rates for first time OHS in patients under age 60 is 98%. You may want to look over the Valve Selection Forum before your appointment so that you will be familiar with the issues and tradeoffs before your interview. Once you are comfortable with a surgeon and valve choice, please schedule your surgery ASAP to prevent the development of irreversible damage to your heart muscles and walls.

If you have any more questions, feel free to ask us. That's what we are here for, to share our knowledge and experience surviving and recovering from Valve Replacement Surgery.

'AL Capshaw'

 

[Chuck_S]

Read up on the "valve selection" forum

Read up on the "valve selection" forum

Lots of info there. I decided on a tissue valve, however many do the mechanical.

My surgery was on July 13, 2005. I have been back to work for a little over 2 weeks.

Good luck,
CS