How long have you been in the "Waiting Room"?

[susieq14]

After reading Mary's recent poll about when everyone had their valve replaced, I got a little jealous that I couldn't vote since I'm still hanging out in the "Waiting Room" and then I began to wonder how many other VR members were in the "Waiting Room" and how long you've been waiting. It might be nice for those of us who are getting antsy in here to compare time - you know the old saying - "misery loves company". I don't think I've ever seen such a thread but if one exists I apologize for repeating it.

Perhaps we could all give the date of our diagnosis and which valve is our problem and how often we see our cardiologist

I'll start off -

Date of diagnosis: August 2004

Valve problem: Mitral Valve
originally diagnosed with moderate to severe regurgitation, now it has been downgraded to moderate only.

Cardio visits: every 6 months with a yearly echo

 

[Adrienne]

Year of finding out I had a heart murmur: around 1967

Year of diagnosis of a mitral valve prolapse: 1983

Year I learned of pretty bad regurgitation and year I was sent to a cardiologist: 1999 or 2000.

Years in the waiting room: only about a year and a third as I never thought I would need an operation since my ex-cardio downplayed everything! It was only when I got endocarditis in 2004 that the alarm bells were set off in the hospital that treated me, and that I started on my search of 2nd, third and fourth opinions.

 

[marie]

I was diagnosed about 10 years ago with a mild aortic valve leaking. Had echo every year and it stayed that way until about 18 months ago when it began to get worse. Then started echos every 6 months, in July of 2006 my aortic went to moderate. In July 2007 it was severe on the echo and my mitral valve was leaking as well. In August 2007 I had a Tee test done and my cardio sent me to see the surgeon. He recommends surgery for aortic replacement and mitral repair. I had another appointment on December 20th at which time surgery will probably be scheduled.
I like this question and well be watching for the replies.

 

[Trinityheart8891]

hey,

I'm a congenital pt, so this is a little different for me

year of diagnosis: 1987 was told it wasnt a problem for a while, but told feb 07 that it was looking to be an issue again, and will need more operations, contrary to what was once thought.

problem: mitral stenosis, bicuspid aortic valve, aortic stenosis/insufficiency (see sig)

cardio visits: supposed to be every other year, but lately every year, echo every visit

Morgan, 21

 

[Freddie]

Ready for this One???

Ready for this One???

Diagnosed March 19th 2007 with heart murmur - mitral valve: severe regurgitation
Operated on March 30th, 2007.

No time to do research or to think what kind of valve to have. Surgeon just said "if I can't repair it I'll replace it. Because of your age, I don't think you'll want to go thorough this again so I won't go with a tissue, but a mechanical. And this surgery should be done by the middle of May". I was told all this on March 24th.

Enough said

But I wish you luck

 

[francie12]

Heard the Murmur June 2004

Diagnosis, June 2004: Bicuspid Aortic Valve with Mod. Regurgitation, now Mod./Severe and Mod. Dilated Asc. Aorta

Yearly Visits with Echo, had MRA 1 1/2 yrs ago

Taking 20mg Lisinopril

Thanks. This will be interesting.

 

[Curtsmum]

Diagnosed before birth. operation june 1999, cardiac cath may 03, january 06, august 07. Check ups every 6 months. Been in the waiting room just over 8 years.

 

[epstns]

I was first told of my murmur in about August, 2002. Saw a cardio in Sept., 2002 and was advised of diagnosis of moderate to severe aortic stenosis at that visit. We're still watching it, now with echo's twice annually, until that time. . .

 

[Wise]

Diagnosed with MVP 1985

Diagnosed with BAV 2004

Cardio appointment bi-annually

Echo annually

Two years ago I was told it would probably be two years until AVR. No change in regurg since then so, cardio says it may be a while. OK with me.

 

[Fred4]

How Long?

How Long?

Related medical issue: I was diagnosed with an ascending aortic aneurysm of 4.6 cm in December of 2000. It's up to 4.8 cm, but thanks to annual checks, excellent care and aggressive control of my blood pressure, I am STILL WAITING!

I still feel like I am a walking time bomb--but at this point it has just become a reminder to try and enjoy every day.

Fred

 

[roundsgirl]

2005 after synope episode; mild-moderate aortic regurgitation; grade 2 dystolic dysfunction, thicken aortic valve.

2006 follow up echo; moderate aortic regurgitation; now tricuspid,mitral and pulmonary leak mildly; boderline dilated right ventricle; grade 3 to 4 dystolic dysfunction.

2007 echo moderate-severe aortic regurgitation; aortic sclorosis without stenosis. All other valves still leak mildly.

Current treatment Hydralizine and Clonidine.
Have not seen cardio since last echo which was only a few days ago.
Right now I'm wondering how long I will be in the "waiting room".

Best of luck to everyone here.
Roundsgirl

 

[DebbyA]

Childhood diagnosis of 'functional heart murmur' (probably around 1960)
1971 - first written cardio record I have with aortic stenosis diagnosis
1981 - mitral valve prolapse diagnosis, no aortic problems
1989 - back to aortic stenosis (this leap led me to secretly hope for years that another advance in technology would find heart to be OK)
1995 - now bicuspid, mild stenosis
2005 - graduated to moderate stenosis
2007 - severe stenosis, surgeon visit 11/21--hoping to get a surgery date soon...

Valve problem: bicuspid aortic valve

Cardio visits: dates above til 2003, approx yearly til 2007

 

[sue943]

27th March 2005 the murmur had developed, I was in hospital at the time with endocarditis and was being examined by a cardiologist each morning - 26th March I didn't have a murmur. It then galloped and on 2nd April it was so severe that I was airlifted by a chartered aircraft to England. They were going to operate within a couple of days but then decided to do a 'wait and see'. Once the endocarditis had cleared I was discharged (20th April) and closely monitored. By early June I was very poorly, in heart failure, and had an angiogram and further echo in England and was told I needed surgery within weeks. I had it on 30th June, both valves.

 

[delvalle6]

My son Sammy

My son Sammy

My son was diagnosed with Aortic Stenosis at 4months old in February of 2002. He had yearly visits, but now it is every six months. He is now on Digoxin, twice daily. He has a regurge that reaches the apex of the heart, his ventricle is enlarged with a z score of 3.56, his peak velocity is 3.47, he has the classic bicuspid valve with aortic bulge... we are in the waiting room. He is fairing better than I.

 

[Jkm7]

Diagnosed with Mitral Regurg December 2004. On schedule of echos and cardio visit every six months.

Very close to needing repair/replacement.

I am an optimist who keeps hoping they will perfect and commonly begin doing percutaneous repairs in time for when I need to have it. I am so hoping to not need a second OHS. One is quite enough for anyone in one lifetime IMO

 

[Lisa in Katy]

Rheumatic Fever - September/October/November, 1976

First told I would need surgery within the year, then within 4 years.

Surgery, June 30, 1998 - almost 22 years later!

Frankly, even having it that early was by choice and my doctor would have been okay with waiting even longer. He was still in the school of thought of "Wait until the symptoms get bad." I helped him to begin to change his mind, because after the cath, he was amazed at how bad my valve was and after observing the surgery, further amazed at how fast it "pinked up" after they took me off bypass and how quickly I recovered.

 

[KAJ]

I found out in July of 2001 that I had BAVD. At that time the cardiologist said it was in great shape so no telling how long it would last. In Sept of 2004, cardiologist said it was starting to go bad. I was checked again in Jan 2005 and was told the valve had to be replaced. The aortic aneurysm measured at 4.7 at that time. When the surgery was performed in March, the surgeon said the aneurysm was about 5.5.

Karl

 

[fireftr]

I was diagnosed with a murmur at a routine physical in August of this year. Went in for an echo and found out about my BAV with moderate-severe regurgitation. Have gone through many different stages of grief. I'm now in the acceptance phase and in the process of researching everything I can so I can make a good decision when the time comes for surgery. If I choose a mechanical valve i may be forced out of my job as a Firefighter/Paramedic because of the coumadin. If I choose a bio valve I'll be assured more surgeries as I'm only 31 years old. It's just hard not knowing when things will worsen to require surgery. Will it be 2 years or 20? I just feel fortunate to have found this site full of people who have "been there".

Eric

 

[fireftr]

I forgot to add that I'm now on the 6 month echo/cardio plan. It has been more than that lately as I haven't been able to tell if I've had related symptoms or not. Of course my cardio blows it all off. I think he thinks it's all in my head which I guess it could be.

Eric