Undiagnosed valve deaths ?!

[bookjp]

Marguerite thats my problem this is my second opinion.Cardiologist told me I need surgery.Got a second opinion from heart surgeon at UofM Ann Arbor.He told me the same thing.Now I see him Jan 22nd to go over the results of CT scan and TEE test.I'm expecting him to tell me surgery in the next two to three weeks.But I STILL FEEL GOOD!!!!!

 

[ALCapshaw2]

Marguerite thats my problem this is my second opinion.Cardiologist told me I need surgery.Got a second opinion from heart surgeon at UofM Ann Arbor.He told me the same thing.Now I see him Jan 22nd to go over the results of CT scan and TEE test.I'm expecting him to tell me surgery in the next two to three weeks.But I STILL FEEL GOOD!!!!!

LOTS of our members reported that the "Feel Good" BUT, if their Numbers indicate that the Valves are going BAD, that is almost always a progressive condition that will NOT reverse itself.

You could wait until you do NOT feel good, your Heart Muscles have enlarged from pumping against a stenotic valve, and your chambers are enlarged (PERMANENTLY) and then go to a surgeon and say "Fix Me Up".

He will tell you he can replace your defective valve, BUT your heart has been PERMANENTLY Damaged and you will have to live with that damage for the rest of your life.

OR, you can get your Heart FIXED BEFORE there is Permanent Damage.
It's YOUR CHOICE.

(You may want to get copies of ALL of your Test Results just to see where you stand, then decide).

'AL Capshaw'

 

[bookjp]

I'm resigned to the fact that I will be told I need surgery.I got my second opinion and he basically told me the same thing.So to me no surgery is not an option.Its just weird not to experience any symptoms at all.

 

[Rich]

I had no symptoms right up to the day I 'crashed', and if I had not been moving too fast for my heart to keep up with me, I may not have had any warning until I dropped dead. And I almost did.Even after being released from the hospital the next day I felt just fine, but then I knew something had to be done. My cardiologist told us that valve failure is a leading cause of sudden death.A few months later I totally went downhill, couldn't even walk the 100 feet to our mailbox without resting halfway there.
So my advice is the same as others have said. Get it done now, later may be too late.
And last welcome to a fellow Michigander.
Rich

 

[bookjp]

Hey Rich glad to meet you .Just put my Spartan sweatshirt away for the year and went out and got a Michigan sweartshirt.Will wear it down to Ann Arbor day of surgery.No use taking any chances.Thanks!

 

[Nupur]

Permanent Damage

Permanent Damage

Can somebody knowledgeable please elaborate on what "permanent damage" to the heart means and how it varies with the valve that is bad, and whether it is stenotic or prolapsed with regurgitation? For people living with MR, what are the possibilities? The heart becomes enlarged? Also, if you do surgery after the damage, does the heart reshape itself, and come down in size? Or is this what people mean by saying the damage cannot be reversed? And does this mean that even after surgery your heart is at danger? Thanks!

 

[Marty]

I would like to know how many people here had no symtoms whatsoever.I mean nothing.All I did was go for what I thought was a routine physical and they sent me for an echo and said I had severe aortic stenosis.I'm no doctor but looking at the echo images all I see are faint images or shadows.Two days earlier I was playing two hours of basketball with thirty year olds(I'm 56).I feel like I did twenty years ago.Never been short of breath,never dizzy.never had a heart pain nothing.Its kind of hard to accept!!

I had no symptoms but a "machinery" murmur of mitral regurg was detected at a routine physical when I was 72.. My cardiologist told me patients go down slow with mitral regurg and I could last 10 years. However I have seen those patients. The last years are full of congestive heart failure and on X-ray the hearts are so dilated they fill up the whole chest. I said get me to a surgeon and after I saw him I said schedule me. That was ten years ago and I still feel good and my heart looks normal on X-ray. My advice is if you have a definite valve problem have surgery sooner rather than later.

 

[bookjp]

Thanks Marty. Thats my gameplan now.I figure if its got to be done I'd rather get it behind me.

 

[Ross]

LOTS of our members reported that the "Feel Good" BUT, if their Numbers indicate that the Valves are going BAD, that is almost always a progressive condition that will NOT reverse itself.

You could wait until you do NOT feel good, your Heart Muscles have enlarged from pumping against a stenotic valve, and your chambers are enlarged (PERMANENTLY) and then go to a surgeon and say "Fix Me Up".

He will tell you he can replace your defective valve, BUT your heart has been PERMANENTLY Damaged and you will have to live with that damage for the rest of your life.

OR, you can get your Heart FIXED BEFORE there is Permanent Damage.
It's YOUR CHOICE.

(You may want to get copies of ALL of your Test Results just to see where you stand, then decide).

'AL Capshaw'

I will most definately stand by Al on this one. I'm screwed up for life because of waiting too long. My heart is in the upper limits of normal and will never decrease in size. I suffer Congestive Heart Failure and other problems also. It's not to be fooled with. If Ann Arbor said you need surgery, it's a pretty sure bet your heading into a serious predicament.

 

[Rich]

Hey Book,
I want to wish you the best for your upcoming surgery.
I am also retired from GM, I was an engineer there for many,many years.
I have lived up here for a little over 35 yrs, but born and raised in Cleveland for my first 35yrs so it's tough for me when deciding who to cheer for.
Rich

 

[AgilityDog]

Napur, "permanent damage" means heart enlargement, and damage to other valves, as well.
I had MVP, which was ignored by my PCP, even when my legs were swollen and I was gasping for breath. I wound up in afib, with an 40% enlarged left atrium, subaortic stenosis, CHF, and damage to my aortic valve causing aortic insufficiency. All this took less than 6 months to develop, after a major respiratory illness .
I had to have a maze procedure as well as MVR. I nearly died shortly after surgery. I still have atrial enlargement, though it has remodeled some, and some subaortic stenosis. I'm looking at AVR before too long (it was almost NOW, but the TEE says not quite yet). Because of the surgery and maze procedure, I have complete heart block and a tendancy to ventricular arrhythmias, necessitating an ICD. I also have ventricular asynchrony.
I want my AVR done before any ventricular enlargement occurs (called really bad heart failure). ALL THAT's what we mean by permanent damage. I expect this will someday kill me.
That's why we recommend early surgery.
And yes, there's a family history: Dad had chronic afib, died of a clot post cancer surgery before he got back on coumadin. His sister, my Aunt, died of CHF, but no one ever told me her exact dx.

 

[ALCapshaw2]

Al I have an appointment with my surgeon Jan 22nd.I think after the TEE and ct scan I had Jan. 15.That he will tell me I need surgery soon.The young russian nurse that gave me another echo just before the TEE test said that I had the worst calcification on my bicuspid aortic valve that she had seen.I'm just hoping seeing she was young that she hasn't seen to many.I STILL FEEL GOOD!!!!!!Thats my motto and I'm sticking to it.Thanks for the reply.

bookjp -

I was just looking back over your posts and noticed that you have a Bicuspid Aortic Valve.

You may want to browse through the Bicuspid Aortic Valve and Connective Tissue Disorder Forum for LOTS of useful information on those often related issues.

Be sure to ask your surgeon about having either a Chest CT or MRI to look for aneurism(s) and other signs of possible connective tissue disorder issues. It is in your best interests to have these tests so that the surgeon can be aware of ALL possibilities before he 'gets in there'.

IF you have an aneurism or other signs of a tissue disorder that might require surgery of the Aorta, then be sure to ask how much experience this surgeon has doing Surgery of the aorta which can be quite complex, especially if it extends to the Aortic Arch.

I'm not trying to scare you here, I just want to see that you get fully checked out and the surgeon is prepared for any and all possibilities. In the hands of an experienced aorta surgeon, these issues are all in a day's work and don't raise the risk level greatly above 'simple' valve replacement. It just takes a little longer in the O.R. You do NOT want to have to come back to get your aorta repaired because it was overlooked the first time around! (That has happened before).

Have you decided on what kind of valve(s) you are interested in? If not, look over the "stickys" at the top of the listing under the Valve Selection Forum. Tissue vs Mechanical is the first question. Then you may (or may not) want to learn more about the various options in each of those categories. MANY of us have learned WAY More about Heart Valves and Issues than we ever intended or wanted in our "Before-OHS Lives".

Bottom Line: It is wise to make a Plan A and Plan B, just-in-case your first valve choice is not viable. That happens sometimes (usually in more complex cases with multiple issues).

GO BLUE !

 

[Duff Man]

There's a lot of talent at UofM. Brilliant people. I think you're in good hands, especially if Dr. Deeb is doing your surgery. He's very attune to the inherent intricacies of the BAV - their aorta expert. It would definitely still benefit a person to be well read going forward.

 

[bookjp]

I think thats why the surgeon order the CT scan and TEE he was worried about an aneurism.I go see him on Jan 22nd for the result.They can read those pretty quick so i'm keeping my fingers crossed that if they saw something serious they would have let me know.I googled this surgeon and his specialty is aortic valve replacement.He also happens to be the surgeon who did triple by-pass on a good friend of mine 3 months ago.He really liked him so I feel i'm in good hands.

 

[bookjp]

Duff man this surgeon assisted Dr. Deeb for a few years.

 

[ALCapshaw2]

I think thats why the surgeon order the CT scan and TEE he was worried about an aneurism.I go see him on Jan 22nd for the result.They can read those pretty quick so i'm keeping my fingers crossed that if they saw something serious they would have let me know.I googled this surgeon and his specialty is aortic valve replacement.He also happens to be the surgeon who did triple by-pass on a good friend of mine 3 months ago.He really liked him so I feel i'm in good hands.

It sounds like he is running all the right tests.

Be aware that surgery of the Aorta itself is another step above and beyond Aortic Valve Replacement, especially when it extends into the Aortic Arch. Be sure to ask about his experience in this area.

DuffMan has posted a (literally) colorful graphic of his Aneurism and there has been considerable discussion of Surgery of the Aorta in the BAV Forum. He probably knows (or knows the names of) many of the Top Surgeons in the arena of Aorta Surgery (such as the one he recommended at UofM).

 

[Marty]

I think thats why the surgeon order the CT scan and TEE he was worried about an aneurism.I go see him on Jan 22nd for the result.They can read those pretty quick so i'm keeping my fingers crossed that if they saw something serious they would have let me know.I googled this surgeon and his specialty is aortic valve replacement.He also happens to be the surgeon who did triple by-pass on a good friend of mine 3 months ago.He really liked him so I feel i'm in good hands.

I think the CT scan you had also will display the coronary arteries(CTA). If anyare narrowed or blocked they may do a bypass in addition to the valve surgery. From what you have previously posted I doubt you have any coronary problems. Let us know how yourappointment on the 22nd goes.

 

[sparklette77]

These death by undiagnosed valve disease stories are very sad. Forces one to think more seriously about our conditions--I am usually laughing it off or coming up with a joke which I know is good but since surgery I do it less and tryto listen to my body more and not dismiss things.

I was also diagnosed when i was little --about 9 I think-- with mitral valve prolapse and have always know that I had a valve condition. I have always disclosed this on every physical, gym membership form, etc. my whole life and taken antibiotics when going to the dentist. However even witha KNOWN valve diagnosis of moderate to severe regurgitation when I went to a few doctors about 2 years ago and said hi i have shortness of breath, a persistent dry cough and fatigue they all said it was due to stress. Even the cardiologist that I recently ditched said he felt it was due to stress. When I still looked skeptical (since he was the third doctor but first cardio and i couldn't believe what he was saying which showed on my face), he said there is a "SLIGHT chance" but "HIGHLY UNLIKELY" that my symptoms were related to my valve disease in view of my "high stress occupation" and so he would perform a few tests to rule my MVP out and ease my mind. As with the rest of those on this thread, the rest is history.

I will also add that my heart surgeon told me in our first meeting that 40% of cardiologists hav eno idea what they are doing and are not up to speed on the currect guidelines for surgical indications and other stuff. He also told me that with my valve as it was that day I would not live to see 60 which meant that more than half my life would have been already over--I'm 31.

 

[Marty]

Its true. Most surgeons say some ( a minority) cardiologists unduly delay referral for needed heart surgery.

 

[debster913]

I will also add that my heart surgeon told me in our first meeting that 40% of cardiologists hav eno idea what they are doing and are not up to speed on the currect guidelines for surgical indications and other stuff. He also told me that with my valve as it was that day I would not live to see 60 which meant that more than half my life would have been already over--I'm 31.

Sparklette: I know what you mean. I was 30 when I had my surgery, and I was getting worse each day. My cardio, who is excellent, was still quite conservative with his assessment of my valve. Despite my symptoms, he wasn't totally covinced my valve was failing--I think mostly because only a year before when I'd had a TEE, he said my valve would last me indefinitely. He ran so many tests and finally ruled out asthma before I saw the surgeon. The surgeon told me, "Your valve is worse than what your cardiologist thinks. You need surgery now." Imagine if I'd waited.

Also, even after my surgery my cardio tried to get me to change jobs since "teaching is too stressful, and I don't want you killing yourself over your job."