Uninformed and will have lots of questions

[noel]

First off let me say I am posting for my husband who's name actually appears (afraid he shies away from a computer). I just need to relate our story I guess and maybe someone will come along with some ideas what I should actually be asking our doctor.
We have known for quite some time that Noel had leaking valves, both aortic and mitral. He has had yearly echo's done. Yesterday we had a visit with the cardiologist and was told the last one showed the size to be a 6 and that the MITRAL valve was now considered severe leakage. Another echo has been scheduled for December 4th with a visit one week later. We live near Birmingham which is home to UAB Hosp and considered a top notch heart place. Noel had two stints and three by-passes this past February 10th. That was an emergency, no time for doing valve replacement then...we were racing against the clock. He had not had a heart attack. What should we be asking...how "pushy" should we be...is December too long to wait for another echo? What is the difference in an echocardiogram and a TEE? Any help will be appreciated. And if I have posted in the wrong place...just let me know...I had a little trouble finding my way around here.

 

[RandyL]

First off let me say I am posting for my husband who's name actually appears (afraid he shies away from a computer). I just need to relate our story I guess and maybe someone will come along with some ideas what I should actually be asking our doctor.
We have known for quite some time that Noel had leaking valves, both aortic and mitral. He has had yearly echo's done. Yesterday we had a visit with the cardiologist and was told the last one showed the size to be a 6 and that the MITRAL valve was now considered severe leakage. Another echo has been scheduled for December 4th with a visit one week later. We live near Birmingham which is home to UAB Hosp and considered a top notch heart place. Noel had two stints and three by-passes this past February 10th. That was an emergency, no time for doing valve replacement then...we were racing against the clock. He had not had a heart attack. What should we be asking...how "pushy" should we be...is December too long to wait for another echo? What is the difference in an echocardiogram and a TEE? Any help will be appreciated. And if I have posted in the wrong place...just let me know...I had a little trouble finding my way around here.

The echocardiogram is done from the outside and the TEE is done by swallowing a tiny camera and looking at the back side of the heart. It is generally more reliable since it looks directly at the valves without having to go through all the flesh and bone.

BTW You are in the right place and WELCOME!

 

[Tom F.]

Let me add that for the TEE he will be sedated to a degree. He will not be fully out, but in deep twilight.

 

[Karlynn]

Welcome! Could you give us a little more information on the aorta being a 6? Do you know what they are referring to? I'm hoping it is not an aortic aneurysm they are measuring at a 6.

And yes, I would push to get the ball rolling on any additional tests as soon as possible. Given the fact that your husband has already had some issue, I wouldn't want to wait and allow any more damage to be done.

A TEE will give a much better view of the valves than an external echo. It usually isn't done as a routine test, but it sounds like it would be something you would want to have done given your husband's latest report. An MRI or a CT will give a better view of the ascending aorta.

Best wishes!

 

[Mary]

Hi Robbie--oops, I mean Noel!
We have several members who've had replacement at UAB, and I imagine they will visit this post sometime during the next few days to tell you of their experiences.
You had mentioned to me that the cardio was talking about a new trial procedure they were doing at Mayo Clinic? Would that be to repair the mitral vavle?
I think I would focus in on whether they need to replace both of Noel's valves while they're in there. I know that he's on coumadin, so I don't think you would have any trouble with a mechanical (s) valve. He doesn't have a-fib, does he?
I would ask the cardiologist to recommend a surgeon at UAB, and any other place she might suggest, and then schedule an appointment with the surgeon to give you his views on when and what kind of surgery should be done.

 

[Mary]

Welcome! Could you give us a little more information on the aorta being a 6? Do you know what they are referring to? I'm hoping it is not an aortic aneurysm they are measuring at a 6.

And yes, I would push to get the ball rolling on any additional tests as soon as possible. Given the fact that your husband has already had some issue, I wouldn't want to wait and allow any more damage to be done.

A TEE will give a much better view of the valves than an external echo. It usually isn't done as a routine test, but it sounds like it would be something you would want to have done given your husband's latest report. An MRI or a CT will give a better view of the ascending aorta.

Best wishes!

I don't think the aorta is at 6. I believe that's the dimension of the chamber.

 

[noel]

Thanks....

Thanks....

I have told Noel he just has to learn how to navigate around this thing.
Have either of you that responded had a VR yet? I may not even understand the terminology. I see Karlynn has asked about the aorta....it is our understanding that the 6 relates to the thickness of his heart wall. Does that sound reasonable. Also...it is the mitral valve that is worse and apparently the aortic valve is not leaking so badly. NO aneurysm has been mentioned thank goodness so we are quite sure that is not in the picture. Our cardiologist has been quite aggressive in doing tests and watching all aspects of his related health issues. I might also add, he is Type 2 Diabetic...well controlled....BP well controlled running around 120/58....and his weight is at around 167. He is 75 years old but very active and no one believes he can be that age.

 

[noel]

Hi Robbie--oops, I mean Noel!
We have several members who've had replacement at UAB, and I imagine they will visit this post sometime during the next few days to tell you of their experiences.

Hi Mare..I mean Mary.
Noel has just said to me...if I am having this done. I want them just to do both because I do not want to go back in a few months again. I think when we return from the trip we will push for an appointment with Dr. Tripathi...he is not at UAB, he is the one who did the surgery in February...the cardio was to call him also. But I do not know when.

 

[Mary]

Yep,
Everyone who answered has had a valve replaced.
If they've had an aortic valve replaced, it's an AVR.
Mitral replacement is a MVR.
You can read about each member by clicking on their member name, and it will take you to their heart and personal information.
Karlynn has had her mitral valve replaced, but I think the rest of us are aortic replacements.

 

[Karlynn]

Depending on how bad the aortic valve is, they may (emphasis on 'may') think it could become better once the mitral is replaced. I understand Noel's position of not wanting to have to do it again, but I also know that doctors don't want to have to monkey around in the heart any more than necessary. UAB is well know. I would hope that the doctors there would be able to assess whether or not the aortic valve would get better once the mitral is replaced. If there's a question - I'm with your husband's thought.

Sounds like he's been followed well. I'd still try and get his next visits pushed up. Sometimes wheels turn slowly in medical facilities.

I'm glad it's not the aorta that's a 6. I got a little scared there.

 

[dj/utvolsfan]

Hello to both of you and Welcome!
I was at +4 with severe regurg and very, very symptomatic. However, I was foolish, life got in the way, and I postponed surgery from August (TEE) '05 until April '06. I was told by the time I made it to Cleveland Clinic in early Feb. that I needed surgery asap and to go home and 'do not exert yourself whatsoever'. I continued to teach until I left for CCF. I will be the first to tell you those were the most exhausting days of my life. I was originally scheduled for CCF in October. That is when I should have gone. Qaulity of life from August til April was very much at a a zero. I would push hard for an earlier echo/tee. December seems so far away from now. If indeed surgery is imminent, I would try to get things rolling....the sooner the better.
My best to you both!
Debbi

 

[ALCapshaw2]

Welcome Noel and wife

I'm assuming you do NOT have copies of all of Noel's test results / echo cardiogram reports. Getting copies of the echo reports should be Step ONE.

If his symptoms worsen, he should be examined soon.

In any event, this is a good time to go Surgeon Shopping.

Many surgeons can do successfull Bypasses. I had my bypass done by a very capable surgeon in Huntsville (ALA) but when it came time for Valve Replacement I was referred to UAB. It was probably a good thing because I had extensive radiation damage to my heart and vessels. Second surgeries are more complex than first time OHS and it is wise to go with the 'Best of the Best' surgeons who have 'seen it all'.

The two top surgeons at UAB are Dr. James Kirklin (who is the head of the transplant team) and Dr. McGiffin who also assists with transplants and does High Risk surgeries. It can take several weeks to get an appointment to see them so I'd get a referal NOW.

Dr. McGiffin is known for his friendly bedside manner and taking time to listen to his patients. When it came to knowledge about my radiation issues, Dr. McGiffin seemed to know exactly what to expect, right off the top of his head, which impressed me greatly. UAB has been ranked as high as #10 in the nation for Heart Hospitals. IMHO, UAB would be your BEST choice.

'AL Capshaw' (near HSV)

 

[noel]

Welcome Noel and wife

I'm assuming you do NOT have copies of all of Noel's test results / echo cardiogram reports. Getting copies of the echo reports should be Step ONE.

If his symptoms worsen, he should be examined soon.

In any event, this is a good time to go Surgeon Shopping.

Many surgeons can do successfull Bypasses. I had my bypass done by a very capable surgeon in Huntsville (ALA) but when it came time for Valve Replacement I was referred to UAB. It was probably a good thing because I had extensive radiation damage to my heart and vessels. Second surgeries are more complex than first time OHS and it is wise to go with the 'Best of the Best' surgeons who have 'seen it all'.

The two top surgeons at UAB are Dr. James Kirklin (who is the head of the transplant team) and Dr. McGiffin who also assists with transplants and does High Risk surgeries. It can take several weeks to get an appointment to see them so I'd get a referal NOW.

Dr. McGiffin is known for his friendly bedside manner and taking time to listen to his patients. When it came to knowledge about my radiation issues, Dr. McGiffin seemed to know exactly what to expect, right off the top of his head, which impressed me greatly. UAB has been ranked as high as #10 in the nation for Heart Hospitals. IMHO, UAB would be your BEST choice.

'AL Capshaw' (near HSV)

No, we don't have copies of his tests...but I have called this afternoon and asked for them. After I have had time to consider all the facts here...Noel and I realize now that this echo was done in April and this is September....he has been in the hospital as late as July and saw the cardiologist then...now we are wondering why this was not brought to our attention earlier? To say we are getting a little nervous is putting it mildly. When I look back on the visit yesterday...she did not say this was urgent ASAP...hence the reason I'd like to see how much it has changed...if I can figure it out when I see it. At your suggestion I think when they call us back I will ask for a referral to that surgeon....and see how that goes. We do appreciate all of you helping us tread some very new waters....we should have been more prepared.
PS...wife's name is Robbie.

 

[ALCapshaw2]

No, we don't have copies of his tests...but I have called this afternoon and asked for them. After I have had time to consider all the facts here...Noel and I realize now that this echo was done in April and this is September....he has been in the hospital as late as July and saw the cardiologist then...now we are wondering why this was not brought to our attention earlier? To say we are getting a little nervous is putting it mildly. When I look back on the visit yesterday...she did not say this was urgent ASAP...hence the reason I'd like to see how much it has changed...if I can figure it out when I see it. At your suggestion I think when they call us back I will ask for a referral to that surgeon....and see how that goes. We do appreciate all of you helping us tread some very new waters....we should have been more prepared.
PS...wife's name is Robbie.

It would seem that the question here is not if but WHEN to have surgery. Again, IMHO, it is best to have surgery "Sooner rather than Later". My cardiologist was hoping to get another 3 to 5 years out of my stenotic valve but ONE year later, I became symptomatic. It took 2 Months to get into UAB and another month to schedule surgery. By that time I was quite symptomatic and felt like I got there "Just in Time".

After that experience, I've come to the conclusion that it is best to let the Surgeon decide WHEN to operate since they prefer to do so before Irreversible Damage is done to the heart valve / muscles / walls.

Is Noel becoming less energetic or does he get short of breath on exertion? Those are some of the possible symptoms of valve disease. But note that not all patients are even aware of any symptoms. That is why it is important to have regular Echo's which are the least invasive indicator. The TransEsophageal Echocardiogram (TEE) provides more accurate images and is often used to help determine when to have surgery. The surgeon will probably also want a Left Heart Catheterization before surgery but that can wait until after you see him.

Having another regular Echo or a TEE (even better) before you see the surgeon is a good idea. It wouldn't hurt to ask for the next available date (i.e. before it becomes urgent).

FYI, you may need to sign a Request Form to get the test results, just for proper authorization and identification. My Cardio's have such forms available (in pads) at the reception desk. They can also be mailed out for signature(s) and return.

You may want to look around in the Reference Forum. There should be a reference that explains the terminology and abbreviations used in the Echo reports. Good report forms will include the ranges of 'Normal Values' for each parameter and maybe even a brief explanation.

If you still have questions, many of us have become familiar with most of the important parameters. Just ask!

I think you will like Dr. McGiffin. He is a compassionate man with a delightful Australian accent and is obviously highly respected by the nurses and staff at UAB.

MVR surgery 'disturbs' the AV node which controls the electrical impulses that trigger the timing of your heart beat. Dr. McGiffin is also proficient in the Maze Procedure (not many surgeons are) which may be called for following Mitral Valve Replacement. If Noel needs BOTH valves replaced, he will definitely want a TOP NOTCH surgeon like those at UAB doing the job.

'AL Capshaw'

 

[Mb]

Dear Noel and Robbie:

My husband has had both valves replaced, five years ago., with St. Jude prosthetic valves. He is also in chronic a-fib. He is now 60 years young. He does take a lot of meds, but frankly part of his on going problem is from having waited too long to recognize he was having serious symptoms. He went into chronic a-fib, the congestive heart failure that was misdiagnosed as pneumonia....and then the surgery. He had rheumatic fever when he was a teenager, and the heart damage was caused by that.

At the time we went, finally to see a surgeon, we had thought originally it would be one valve, the mitral, but by that time the aortic was leaking as well. If I recall correctly, the surgeon said the leaking mitral valve was actually masking the severeity of the leaking aortic valve, and since he was in chronic a-fib anyway, and would have to take coumaden, then the mechanical St. Jude prosthetic was the way to go.

There are not ALOT of folks on this site that have had multiple valves done, but there are a few. About 10% of valve surgeries are dual valves. It only very slightly increases any risks.

Valve surgery today is relatively common, and there are many surgeons able to perform this surgery successfully. However, that being said, I would go for the best doctor available, and I would NOT postpone surgery even one week. The longer the leaking takes place, the more likely there could be permanent damage to the heart. And, since he has coronary issues as well....the sooner the better.

Fear not....do your research, and move forward.


Marybeth

 

[noel]

Questions and answers....

Questions and answers....

Noel says he does not feel badly now...yes, he is not as energetic as he once was but he still does his walking every morning, mows yards, climbs stairs regularly, etc. He completed his monitored cardiac rehab without incidence. He is on Warfarin...he had a stroke in 2001...which cost him some vision...(he was totally blind at first but regained all but lower right quadrant)...he was also on Plavix following the stints and bypasses....for 6 mos. and during that time his hematacrit has run just below the norm range of 35-50. He is getting it checked once monthly. He wore an event monitor for 4 weeks...beginning July 12....nothing unusual was detected...his pulse rate is running around 58 to 65.
So exactly what other symptoms are we to look for? Other than the shortness of breath....which does not seem to be a factor. We have thought the lack of energy was due to the low blood count and also we just learned his Free Testosterone is way low and he is getting injections monthly for that which they told us would make him not feel dragged out. He really never complains about that. Just I can tell when he is not up to par.

 

[Mary]

When he lays down in bed at night, does he sometimes have trouble catching his breath if he is flat on his back? Sometimes with regurgitation, people need extra pillows at night to keep their torso elevated a little.
Does he have any trouble with fluid retention?
A nagging cough?

 

[noel]

When he lays down in bed at night, does he sometimes have trouble catching his breath if he is flat on his back? Sometimes with regurgitation, people need extra pillows at night to keep their torso elevated a little.
Does he have any trouble with fluid retention?
A nagging cough?

No problem sleeping...he is on a C-Pap machine as he has sleep apnea since the 1980's...no cough at all. He is retaining some fluid but is on a diuretic and it only gets noticible if he sits for extended periods of time. (Mine do that too. )
Mare, I have still not found where the PM's are. Duh......I think you have to do me a Prnt Scr. LOL

 

[Mary]

No problem sleeping...he is on a C-Pap machine as he has sleep apnea since the 1980's...no cough at all. He is retaining some fluid but is on a diuretic and it only gets noticible if he sits for extended periods of time. (Mine do that too. )
Mare, I have still not found where the PM's are. Duh......I think you have to do me a Prnt Scr. LOL

The C-Pap might be masking some symptoms, but it's good that he's on C-Pap. Does the cardiologist know he's retaining fluid even with the diuretic? I am on one and have to weigh myself every morning. A gain of more than 2 pounds "earns" me another Lasix for the day. Much more than that, and I've "earned" myself a call to the cardiologist.
Regarding the PM's, up at the top of the right hand screen, it should say, Welcome Noel Under it it says, you last visited 2 hours ago at 7:25PM
Under that it says Private Messages Unread 1, Read 0, Total 1
Click on private messages A brand new screen will open and list your messages
If you still can't find it, I'll ask Ross to send a screenshot, because I've forgotten how to do them, once again!

 

[KAJ]

Welcome Noel and Robbie!

I am another one of the members who had surgery at UAB. My cardiologist in Jacksonville, FL sent me there and wanted Dr.Kirklin to perform my surgery for AVR and ascending aortic aneurysm. My wife who is a critical care RN was very pleased with him as well I.

Karl