Is 'do nothing' the correct solution?

[little debbie]

My 46 year old husband suffers with heart failure following a pericardectomy for constrictive pericarditis. The doctors here in SW VA see very little of this disease & have NEVER treated anyone after the surgery (others died in surgery). There is not even a heart failure specialist within 100 miles. Our cardiologist acknowledges that this in uncharted territory for her & the other cardiologists on staff & that she just doesn't know anything to do to help.
My husband's health continues to deteriate. The cardilogist's answer to treatment is to do nothing as long as he is stable. (Stable meaning (to her) as long as he is alive & up walking around.)I feel he is NOT stable as long as he is worsening. I am not happy with her attitude & wonder if his heart failure could not be treated more aggressively.
What is your opinion?

[CCF-M.D.-CRC]

Dear debbie,
We tend to favor an agressive approach to heart failure here but it must be based on the entire clinical picture.  Medications would be the first line of approach.  In general most persons with heart failure should be on an ACE inhibitor, beta-blockers and aldactone as well as diuretics as needed.

Second line therapies may include things like a biventricular pacemaker or perhaps additional surgical therapy.  Finally, if he is really getting much worse a heart transplant can be considered.

If you would like for him to be evaluated by a heart failure specialist you can make an appointment for him in the "Heart Failure Clinic" by calling 800-223-2273.

[tcollins]

Check out http://www.jonsplace.org. Very helpful. As a heart failure patient, I would strongly suggest changing doctors. Heart failure can be very successfully managed. Until you get to a new doctor, make sure your husband's sodium intake is limited to under 2,000 mg a day. Good luck.

[Mr. Know it all]

check out this site:
http://www.execpc.com/~magnesum/cardio.html#FACTORS

thanks ***@****

[pikamom]

I feel that a patient is her/his own best advocate. Meaning, if you are not happy with the care you are getting, then change doctors until you find one you feel really cares about what is happening to you. There are things you can do for heart failure although it sounds like the cause of your husbands' is quite rare and therefore maybe nothing can be done to stop the disease. Each case is individual. But still, you need to be satisfied that SOMETHING is being done and not just allowed to follow a downhill course unchecked. Best wishes to you and your husband.

[debra21784]

I am sorry to hear how ill your husband is and it must be very upsetting for you as his wife.I've had cardiac disease for 5 years now ,underwent valve surgery,cardiac ablatation and a stroke.What I knw from experience is to get to a large teaching medical center for care.You don't have to sit idlely by and wait and see.Find a doc who is experienced enough to handel the complicated situation even if it means going out of state.All of my cardiac care is now recieved from Hopkins in Balto.Md you are not that far away.My cardiac surgeon ,cardiologist are from there and it is because of the teaching /research areanasat Hopkins that I am now stableand  with an excellent team.They have a specialized heart failure program and would be happy to give you the imfo if you want to e-mail me. d.***@****.
I got tired of seeing community cardilogist who would just shrug thier shoulders and do nothing as I got sicker and sicker.The cardiac team at Hopkins took my complaints seriously and responded appropriately.When you are very ill as it sounds like your husband is you need a team with specialized expertise and my experience has taught me they can only be found at teachin/research /academic centers where they are up on everything.Good luck