How long after you were told you needed a valve?

[neil]

was told in november had the op feb,agree with above,waiting is the worst bit,

 

[Yvonne]

My cardiologist told me in September that my aortic valve was now at severe. He recommended me to a surgeon to see if he felt surgery was necessary yet. (I had a valve repair when I was 9, 40 years ago and have been doing well ever since). I have no symptoms at all and continue exercising with no problems. Anyway, the surgeon said I definitely need the surgery, although it's not an emergency. My cardiologist agreed and told me I could wait until after the holidays. So, I'm scheduled for my surgery at the beginning of January. Now, I wish I did it sooner only because it has given me way too much time to obsess over it.

 

[MarkU]

With an Effective Aortic Valve Area of 0.57 sq cm I would ask you "What are you doing TOMORROW" but since it is Thanksgiving, I would think more ASAP and hope to get in before Christmas.

IF you develop Severe Shortness of Breath or Extremely limited tolerance for Exercise, I would head to the ER at a Major Heart Hospital Immediately.

FYI, many Surgeons and Cardiologists use 0.8 sq cm or less as their "Trigger" for recommending Aortic Valve Replacement.

As the opening becomes smaller, the heart has to pump harder to get enough through the Aortic Valve to the rest of the body. This puts a high pressure on the heart muscles and walls which leads to enlargement of the heart. At some point, this enlargement becomes PERMANENT and Surgery to replace the valve is not enough to restore your former capabilities. That is why most Surgeons and many patients believe "Sooner is Better".

'AL Capshaw'

Although I had been developing SOB and chronic fatique for several months, because I was in good physical condition, it "masked" the severity of my symptoms.

I had developed left ventricular hypertrophy (enlargement), which wasn't discovered until my surgery, plus my valve was much more calcified than they thought -my surgeon said it was one of the worst he had ever seen.

Both my surgeon and cardiologist said that my symptoms should have been much more severe based on what they found during surgery.

We didn't know for about a year whether or not I had done any permanent damage to my heart. Fortunately the enlargement reversed itself within about 18 months.

If I had waited to have my AVR based on symtpoms alone, it probably would have been to late.

Looking back, I feel very fortunate that I pulled the trigger as quickly as I did.

Mark

 

[DavesMom]

Hi again John,

If your valve is at .57 then you definitely need to be on the phone with your cardio. This is considered severe. Keep us posted on how things go.

Mark - you and I sound similar. I didn't realize how bad my valve was and wasn't having any symptoms except for fatigue. I put this down to a stressful job and getting older and didn't even realize it was being caused by my wonky valve!

Best wishes.

Cheers,
Michelle

 

[river-wear]

Everyone is talking about enlargement - I thought this (at least to some degree) was pretty normal for valve patients? I remember doctors saying my heart was enlarged 20+ years ago. Is this all a matter of degree, where the concern becomes an issue at a certain point?

Michele

 

[pamela]

How long after you were told you needed a valve replacement did you actually have the surgery done? I was told about six weeks ago I should have an AVR done "sooner rather than later". I was told by my cardiologist I needed to have a cat scan done to see if anything else should be done at the same time. I had that done a week after I was told I needed the surgery. The suspense was getting to me and I phoned to find out my cardiologist was away for a month. So six weeks later I am wondering what my cardiologists definition of sooner is. What are your thoughts? Thank you. I did phone again yesterday and left a message to see if I could get a timeline. What were your experiences?

You're in Canada and like those of us who need "elective" valve surgery, your sooner is determined by the needs of those ahead of you on the surgery schedule. Keep in mind that you'll be susceptible to being bumped to a new date or time as emergent situations arise.

For instance, AVR 1 was postponed twice in a row because the heart/lung machines were in use for transplant surgeries where two people gave of much more than their accidental deaths, they gifted two recipients with a precious chance at healthy futures. So, I was just waiting for my call to the OR later on the morning of the day after when we watched my surgeon's chief residence begin CPR on a man who had collapsed in the concourse of the hospital; needless to say, I didn't have surgery that day either.

I believe that if I am fortunate enough to be able to wait, unlike the poor folks who had to bump me back, then my blessings are enough. I had surgery eventually and so will you. Make sure your dentist has cleared you for valve surgery, that you're as healthy as can be expected, and try to remain resolved and calm. No one wants you to wait longer than necessary, but on the other hand, no one wants to cut you before the signs and symptoms all agree that it is time.

Take Heart, three months only seems like forever. (p.s. Always go on the "call" list for your hospital, that way if someone needs to cancel for any one of the many reasons that are cause not to go ahead with OHS, then you can be made ready and available with a minimum of fuss and strong odds that you'll go forward.)

 

[DeWayne]

I was told I needed it around Memoriial Day 2006 and had it at the end of July 2006. I did however have the knowledge for some 47 years that I would eventually need a valve replacement.

 

[susiesknight]

I knew about my "innocent" heart murmur since I was 45 (dad had one also but never had any problem until he was 89). Was told I would probably face surgery at 60, so I blew it off since I was/am a very high energy/active person. Then after echos every 3 years, I found out it was an aneuryism on the aorta that was making the murmur but never was told anything about the aortic valve problem (that caused the aneuryism). My echo in 2008 at age 57 showed severe AS, .8cm opening of the AV plus aneuryisms measuring at 4.8. The cardiologist informed me that within 6 months I needed AVR which I totally denied since I had NO SYMPTOMS...I was biking for 50 miles, teaching, going to my exercise club, and swimming! I decided to let them do the nuclear stress test (went to 160 HR with no shortness of breathe, pain, etc) so that fueled my denial. Then I finally agreed to the heart cath...after that the doc told me 6m-2 years for surgery which thrilled me since I was going for the 2 years or never mentality. He sent me to the surgeon for a consult and the surgeon had me do a CT scan to look at the aneuryisms and then told me 6 months or sooner. Since he had never performed the freestyle valve/aorta graft surgery he sent me to UAB hospital in Birmingham,AL. After their echo test, Dr. McGiffin(surgeon supreme) told me it was time. So it turned out to be 5 months after I was given the info until they cut on me(3/11/09) at age 58. Dr. McGiffin said it was none too soon since the AS had definitely progressed and the walls of the aorta were very compromised. Still couldn't process it since I had no real presenting symptoms and at times felt I had the surgery too soon but that is the denial part of my brain because those around me have said my "color" is much better and I don't get so tried at times. I truly believe the slogan that heart disease is a silent killer! Am off all meds, riding my bike 59 miles at age 59. God is so good.


AVR and aorta graft 3/11/09
21mm Medtronic freestyle bioprosethic valve
UAB Dr. David McGiffin, my awesome Aussie surgeon

 

[KAJ]

I found out about the BAV in July 2001. I was checked about twice a year after the diagnosis. In spring of 2004, cardio said valve was starting to get worse but not time for surgery. In late Sept, he said valve was still in decline but surgery not yet needed. In Jan of 05, I was checked again. Heart cath confirmed it was time for surgery.

The surgery was scheduled for mid Feb. However, due to a stubborn sinus infection, surgery was delayed until mid March.

Karl

 

[drivetopless]

I was diagnosed in 1997. At that time they said 1-5 years. Sincethen I've been getting checked yearly until last year. Now I get checked every 6 months. I'm pretty asymptomatic, but my cardiologist is saying soon, which means 6 month to 1 year. I get checked again in January. I'm "feeling" 2010 is the year. I can still do a flight or two of stairs with no dizzy spells---that seems to be the test. I easily get breathless with exertion, but I still recover quickly without feeling overly fatigued. My cardio fitness still improves with exercise.
Get your numbers--these guys can tell you a lot from that. What I've read in that once the diameter gets to 0.7 cm2 it usually starts to progress faster.

 

[Luana]

I found out I needed my aortic valve replaced after an angiogram last month. The surgeon met with me while I was in recovery and I could have scheduled the surgery for the following week; however, I wanted more time. While I needed surgery, from what I've read from others here, my test results were not as bad as those of a lot of others. Physically, I've had severe fatigue for over 2 years and sob in the last year, so I think I was worse symptomatically than I was on paper.
Luana

 

[Guest]

How long after you were told you needed a valve replacement did you actually have the surgery done?

Timeline for my 2003 surgery....

Found out that I needed surgery in early December 2002.

Met with the surgeon in mid-December 2002.

Surgery was done January 6, 2003.



Cort | 36swm.IL | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...radio show, Dec 09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"It's coming on Christmas" ... Robert Downey Jr ... 'River'

 

[Smiley2000]

Sonar was done on 11 March 2008 and surgery: 31 March 2008.

I had an echo done during September 2007 and Cardio (Blomerus) said that the Mitral leaflets looked normal, but the Regurg was moderate. I had Grade 2-3 leak and that we'll follow it up annually.

During January 2008 I felt that something was wrong. I could not do my normal Taebo classes and I could not sleep at night without waking up breathless.

I had to go to 3 different Specialists before someone took me serious enough and actually did an ECHO! The first Specialist I went to see was my EP doc - I thought he did something wrong, cause my simptoms (dyspnea, severe SOB, severe muscle weakness and chronic palpitations and a-fib) started 2 months after he did Ablation. He referred me to a Cardio (Zeelie) and his advice to me was "quit your job and take anti-depressants" and he slabbed a 24hr holter ECG on me! I still felt they were missing something, so then I went to my Primary Cardio (Blomerus) who did an echo and immediately called the Thoracic Surgeon and then they both decided - according to the echo's results and my symptoms that it was time.

Minutes before I went into surgery they did a T.E.E. I had an EF of 35%, heart failure, Pulmonary Hypertention and Atrium enlargement.

One thing I've learned out of all of this: TRUST YOUR INSTINCTS AND JUST BECAUSE DOCTORS WEAR WHITE SUITS, DOES NOT MAKE THEM RIGHT.

 

[ALCapshaw2]

SO, John, after reading all of the above, what have YOU done about interviewing Surgeon(s) and getting a Date Set Up?

Note that once your Cardiologist has identified the problem there is not much he can do for you other than refer you to a Surgeon. You can also Self Refer to Surgeons (at least in the USA). All the Surgeon needs to know is that you have a Diseased Valve that needs to be Replaced. He will want to review your actual Test Tapes and get an angiogram (a.k.a. Heart Catheterization) to check the condition of your Coronary Arteries, just in case you also need a ByPass "while he is in there".

What are you waiting for?
With an EVA (Effective Valve Area) you are Past the threshold for recommending surgery.

'AL Capshaw'