Concerned that the cardiologist may be waiting too long

[mjcb]

From everything I have read it looks like when the valve leakage is at a 3+ it starts to be a concern. My 14 y.o. daughters mitral valve is at a 3+. Her heart is not enlarged though. She is on lasix, enalapril, and digoxin to help her heart handle the extra load. She does tire easily though. I am still not really sure what criteria they use to determine when it is appropriate to replace the valve. How long can her heart handle the extra load before there is permanent damage to the heart muscle?

 

[BillCobit]

Evaluation criteria

Evaluation criteria

From everything I have read it looks like when the valve leakage is at a 3+ it starts to be a concern. My 14 y.o. daughters mitral valve is at a 3+. Her heart is not enlarged though. She is on lasix, enalapril, and digoxin to help her heart handle the extra load. She does tire easily though. I am still not really sure what criteria they use to determine when it is appropriate to replace the valve. How long can her heart handle the extra load before there is permanent damage to the heart muscle?

Hi MJCB

Thow following chart outlines generally accepted criteria for surgical intervention.

You'll note that the evaluation begins w/ NYHA symptom classifications. These are as follows:

Class I: patients with no limitation of activities; they suffer no symptoms from ordinary activities.
Class II: patients with slight, mild limitation of activity; they are comfortable with rest or with mild exertion.
Class III: patients with marked limitation of activity; they are comfortable only at rest.
Class IV: patients who should be at complete rest, confined to bed or chair; any physical activity brings on discomfort and symptoms occur at rest.

I recommend the ACC/AHA Guidelines for Treatment of Patients with Valvular Heart Disease. You can download this at:

http://www.acc.org/clinical/guidelines/valvular/3205p149.pdf

 

[ALCapshaw2]

Has your daughter been evaluated by a SURGEON?

Surgeon's typically like to operate BEFORE there is any permanent damage, assuming surgical criteria are present (such as symptoms and / or test results).

IMHO, it is a good idea to interview surgeons before symptoms become critical.

'AL'

 

[labguides]

You need to be your child's advocate. Ask her cardio to refer her to a surgeon. Or seek the opinion of a 2nd cardio.

 

[gijanet]

Just my two cents.............

Just my two cents.............

but I would have my daughter's echo tape sent to a pediatric cardiothoracic surgeon. Do you have one in mind already? If so, just contact him via e-mail or by phone and request his opinion.

I've done that on five occasions. After Katie's first surgery, I contacted several of the big name PC surgeons by e-mail requesting a "second" opinion as to our surgical options. All promptly responded that they would be more than happy to offer an opinion, and to just forward the echo tape, cath data if available, and any other pertinent surgical reports, info, etc., that we had. We did, and that is how we ended up with Dr. Bove in Michigan.

I can only relay our experience, of course, but I do know that surgeons prefer that you not wait too long. Katie's common AV valve (her mitral and tricuspid are merged) has always leaked, first mild, then moderate, then severe. It was last November that we received the blow that it was upgraded to severe. Her PC classified it as 3++, but that was just to keep me from having a breakdown in his office, I think. In his defense, though, Dr. W. did say that he considers severe to be a valve that is basically running wide open..............and that is another problem with the 1, 1+, 2, 2+, etc., classifications instead of using an actual measurement, is that these can differ from institution to institution. What your PC calls a 3+, a surgeon might call a 3, or even a 4...............argh!

Anyway, when we got the depressing news last November, our PC contacted Katie's surgeon immediately and he wanted to do surgery as soon as possible. He did let us wait until after cold and flu season because of the distance we travel and the fact that so many heart kids who have surgery in winter months end up right back in the hospital with RSV, etc., but absolutely did not want us to go past five months, so we ended up having a valve repair in April. The repair looked great post-op and upon discharge, but sadly we found out one month post-op that the repair failed and we were back up to a moderate leak of 3, not as bad as pre-repair, but certainly not acceptable long-term. Her surgeon would like to wait one year from her last surgery in April just to give her body time to recuperate fully (we had a pleural effusion and a partially collapsed lung to contend with), as long as her ventricles hold up. Soooooooo, we go back around March or April, this time a double whammy for a mechanical valve and the extracardiac fontan. We had been going to Katie's local PC for monthly echocardiograms to ensure that Katie's leak has not gotten worse and that her ventricles are not showing signs of enlarging; thankfully, they haven't and we were actually given a three month break and don't have to go back until January.

Of note, I did e-mail Katie's surgeon. I asked him if Katie's leak remained stable, could we postpone surgery indefinitely. His prompt response was, "NO!" He does not want any long-term damage to occur to Katie's ventricles and no one knows when this could occur.

Anyway, this is just our experience, but it certainly wouldn't hurt to contact a surgeon and get his opinion. Most of the larger pediatric institutions do this willingly and at no expense. The only one that ever charged us was our own local children's hospital. Go figure!

Good luck and keep us posted.

 

[bvdr]

Many cardios are not very familiar with valve problems. There are a few at Duke that specialize in that area. Dr. T. Bayshore was the one that followed me at Duke and is considered a specialist in that area. You live about the same distance from there as I do. I will PM you my phone number in case you need more information. Remember....always obtain copies of labwork and test results.

 

[Karlynn]

Many cardios are not very familiar with valve problems. There are a few at Duke that specialize in that area. Dr. T. Bayshore was the one that followed me at Duke and is considered a specialist in that area. You live about the same distance from there as I do. I will PM you my phone number in case you need more information. Remember....always obtain copies of labwork and test results.

My addition to Betty's comment is that there are some cardios that think they can handle valve problems, but cannot. Just make sure that your daughter's doctor handles many valve patients. I'll also echo the surgeon consult suggestion.

 

[McCln]

I beg to differ of Betty and Karlyn. It is not that they cannot handle valve problems, they are trained in that area, mine was. It is that Some cardio's are so uppity that they have terrible attitudes in caring for the patient. And they lack communication skills. I had one who did my blood pressure and did not know how to read it. So be carefull and get your cardio to get a surgeon on the job pronto. Good luck mjcb. I will pray for you daughter.

 

[catwoman]

mjcb:
I was at 3+ w/ enlarged left atrium when cardios did a L&R heart cath the day before my surgery. I was too exhausted to go to my nephew's high school graduation 5/31/03 in Dallas TX, too tired to go grocery shopping, too tired to dress & go to work. (I had been a very busy person, burning the candle at both ends & in the middle; friends had often told me they were tired just watching how much I did.) I had to go on short-term disability 2 weeks pre-op.

If your daughter is tiring easily, now is the time to consult surgeons and making sure her cardio is the right one for her needs. You don't want to wait until a cardio says it's time for surgery. They often want to delay surgery until later rather than sooner.

BTW, my left atrium is still somewhat enlarged.

 

[Marguerite53]

Hello. You are right to be advocating strongly for your child. Keep at it.

I am still in waiting mode, at 50, so not a very similar situation (and it's my aortic valve). I don't know where those 1+, 2+ 3+ notations are coming from, I have not heard them used on me. My valve diameter is at .95 cm squared and I'm anxious to consult a surgeon and my cardio is not ready yet. She listens very carefully each time I visit as there is a click she is waiting to hear (or probably not hear, actually).

My comment is this. My GP and I decided to put me on Spironolactone to help lower my blood pressure (which was hovering in the 135-145/80 range). About a month into it I became extremely tired (I mean, so tired that I was thinking I couldn't make it to the store, or an appointment, or through a movie), out of breath and had chest pressure. I figured it was my heart going suddenly. Went to see the cardio who promptly took me off the Spironolactone (a diuretic, as the lasix is) and put me on Diovan. It was like waking up a new person! All my symptoms disappeared in 2 days and my blood pressure is actually down consistently now. I could not believe how that first drug was debilitating me so much!!

Drugs affect people in different ways. That was an eye opening experience for me. If you are wondering about the symptomatic level of your daughter, you might want to delve into the list of symptoms that might be affecting her from the medicines. Then, you should certainly ask the doctor prescribing them if any of the symptoms you are questioning might be due to the meds. Don't stop the meds on your own, of course, just ask.

Best of luck. Oh, and Bill, thank you SO much for that link. It was very helpful to my own understanding. Is there a link like it more recent than 1998?? I wonder how long the guidelines stay in effect....

Again, mjcb, my best wishes!

Marguerite

 

[labguides]

<I don't know where those 1+, 2+ 3+ notations are coming from, I have not heard them used on me. >.

We never heard them used with our daughter either. We heard mild, moderate and severe.