How long after you were told you needed a valve?

[JohnCalderwood]

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?

 

[river-wear]

Hi John,

I think you'll find that it varies with every patient. Some folks on here have gotten it done within two weeks. I was told on October 12 that I need surgery but my cardiologist said it would be fine to wait until next summer because of some travel plans I have coming up. The urgency will depend on how quickly things are changing with your heart and what your symptoms are like. I don't have any symptoms at all, for example. They've also been "watching" my progress for 38 years...

Sorry - that isn't terribly helpful, is it?

Michele

 

[MarkU]

Two days. My cardiologist told me on a Wednesday morning that I needed to have it done within three months. He made a call from the exam room to the surgeon and scheduled it on the spot for that Friday morning (12/15/2000). My thought at the time was to get it done right away so that I could use Christmas vacation to recover.

It made for an interesting phone call to my wife later - "guess what I'm doing on Friday?".

Actually, I had known for over 30 years that I would need valve replacement surgery "someday", but it wasn't something I ever dwelled on. I had been developing symptoms for a number of months, so it really wasn't that big of a surprise when my cardiologist finally said "it's time".

I was lucky that I impulsively scheduled it so soon. Three weeks later my employer closed their doors and cancelled the group insurance plan. Aetna was great about it and continued to pay the follow-up expenses for about three months afterwards.

Mark

 

[Bill B]

If I got that news (sooner rather than later) I would arrange for a surgical consult ASAP.

Even though my cardiologist had a "wait and watch" attitude toward my asymptomatic but rapidly advancing AS from BAV, I went ahead and arranged a surgical consult even though the cardiologist had not yet recommended it. The surgeon found other issues that lead him to recommend surgery in less than 6 months. I had it 3 months later and none too soon according to what was found once inside.

Ease and rate of recovery is probably better the earlier you do this before symptoms demand it.

 

[acr]

6 weeks from seeing my GP/PCP saying "I don't feel right". Probably a month from the initial Cardio consultation, with a few tests in between eg. cardiac cath, CT scan.

 

[ALCapshaw2]

Did you get copies of ALL of your Test Results?

If not, that is the place to start. It would be good to know your Effective Valve Area and Gradients. We can help you interpret the results if you have questions.

Then you will be able to develop a better 'feel' for how soon you need to go.

Since your Cardio has already told you that you will need surgery, you might as well go ahead and start interviewing Surgeon(s). IMO, they have a better 'feel' for when to proceed anyway. Most surgeons want to see the results of an Angiogram (a.k.a. Heart Catheterization) to see if you need ByPass Surgery "while they are in there".

'AL Capshaw'

 

[marky]

It was 34 days

 

[Mileena46]

I had known for about 3 years that I had Mitral Stenosis, and that I would have to have surgery "one day"...seeing my cardiologist every year and being told I didn't need it yet and come back next year. Suddenly developed shortness of breath and felt horrible...with a racing heart....was put in the hospital with A-Fib and had the surgery one week later without leaving. I had a choice...the surgeon said I could go home for two weeks or stay and get it done. I chose to stay because I knew if I went home I would just sit and worry about it. I think the sooner the better for that simple reason.

Mileena

 

[buncle]

I was having wierd chest feelings and as it turned out it was PVC's.My GP completely mis -diagnosed me (had me get MRIs of my head and neck).I knew it was heart related so I found my own Cardio. and found I had a leaking av.I was on meds and in the "waiting room" for 1.5 years.After a routine echo he said I needed a heart cath.At this point he said I needed a new valve.I had 1.5 years to find a surgeon and prepare for surgery if needed. So had echo,ct scan and heart cath results sent to surgeon I had choosen.Only good news was surgeon said he would do a valve sparring David procedure.
So for me it was 4 weeks after being told it was time.My cardio did say there wasnt a big hurry ( months ) but, I wanted to get it over as soon as I could.

 

[skeptic49]

Ease and rate of recovery is probably better the earlier you do this before symptoms demand it.

Good advice I think. I worry about damage done to the heart while waiting...enlargement, etc.

Jim

 

[Marcia58]

I had known for 20+ years that I had "mitral valve issues." Then in 2006, I was told by a cardio to "expect to eventually need surgery." I was basically asymptomatic for almost 3 more years, then suddenly developed SOB and edema. My cardio said it was time, so I found my surgeon and got my cardio's blessing.

Symptoms to surgery - 5.5 weeks

If I were in your shoes, I'd start talking to one or more cardiac surgeons and have their office(s) request copies of your tests from your cardio. His staff can release them to the surgeon, even if your cardio is on the moon. And since the word was "sooner, rather than later," I wouldn't let it get any later than it already has without someone knowledgeable looking at those results!

 

[BlindFaith]

Was diagnosed by caridologist with severe aortic stenosis in his office in late June. Verified in July with echocardiogram and then cardiac catheterization in late July. Could of had surgery in late August, but opted to wait until after my kids got back into college. Had surgery in late September.

So, would have been 2 months but ended up being 3 months. I believe I could have waited a few more months, but was advised to go "soon".

 

[coach14]

Diagnosed on 5/15, surgery on 7/27. My cardio thought I needed the surgery ASAP, whereas the surgeon thought I could wait 6-8 months if I wanted to. I wanted to get it done as soon as I could, so I went as quickly as I could. I think I was somewhere in between what the cardio and the surgeon thought. I don't thing I was as bad as the cardio thought (she initially thought I would need a heart transplant), but probably a little worse than what the surgeon expected. His first words to my wife after the surgery were - "he really needed that operation". But it all worked out and I feel great now.

 

[Freddie]

With no history of heart problems, I was told on a Friday that I needed surgery and 5 days later I had it done.

 

[Lily]

As you can see, it tends to vary. And remember too that people have different valves that go can "go bad" in different ways, from different causes; and some were genetically "bad."

However one thing that many of us have found is that once the valve really starts "going south," things seem to get worse more quickly. Snowballing, in effect.

You asked for experiences so I'll add mine. I was born with the bad valve. Had surgery for another heart issue at 17 and was told they could replace the bicuspid then but would prefer to wait until it was more necessary. When I was finally displaying and recognizing symptoms I actually hoped to push the surgery off for a few months to the beginning of the new year (I was thinking about deductible$ and such) but the doctors told me it must be done very soon and that I had "weeks, not months." I had the valve replacement about 8 days after that.

Welcome to the site, John. Best wishes .

 

[deano89]

mine was mitral valve repair and it was about a year after the first echo, but knowing what i know now the wait is the worst part, i would get it behind me as quick as possible!

 

[ShezaGirlie]

Hi John and welcome..

Hi John and welcome..

I was being treated for bronchitis.. Never had it before in my life, so I asked the doc how long to recovery. He said, "Two weeks"....I thought, I can survive anything for two weeks....uh nope. This was a 'country doc'.

Ended up in the ER on a Sunday and by echo the doc told me I needed the "Big Kahuna". Music to my hears was hearing him say, "you're young and can be cured". Hahaha, he thought age 55 was young, but now I do too..!!

Sunday - ER
Monday - Hanging out in room
Tuesday - Cardiac Cath
Wednesday - Surgeon was booked
Thursday - Surgery

 

[olefin]

As you can see in my signature I knew it was coming for 10 years. The surgery date was set 6 weeks ahead. Would have been sooner but I wanted to donate some of my blood just in case I needed blood. Few years before there had been some problem with AIDS in the blood banks. The surgeon said I'd probably not need blood but I if I was concerned to bring 4 pints. Didn't help much, before it was over I had been given a total of 21 units.

 

[RunMartin]

22 years. I was told in 1987 that I would probably have the valve replaced within 6 months. I have recently been told it is now time for surgery.

 

[sue943]

Three months from being diagnosed. At first they thought they would do it as an emergency when I had endocarditis but then wanted to try to clear the infection before surgery. Once cleared it was 'see how it goes' then I had to have an echo and was told surgery needed to be within the next couple of weeks. I decided to go private instead of NHS so in fact it was three weeks as the surgeon only did private surgery once a week - a time when it would have been faster on the NHS, using the same surgeon and cardiologist.