Re: cardiomyopathy and lupus

Posted By Lora on December 06, 1998 at 23:48:05:

In Reply to: Re: cardiomyopathy and lupus posted by CCF CARDIO MD - CRC on November 30, 1998 at 12:53:57:






My sister was recently diagnosed with dialated cardiomyopathy.  She underwent several tests including an angiogram.  Her main symptoms have been dizziness and stomach pain.  Within the last couple of days she has been coughing when reclined.  The aortic valve is in very bad shape and leaking.  The doctor states, however, that her heart is so enlarged that they cannot repair the valve.  Last week, she had a defibrillator implanted to control the many irregular beats.  Her condition is complicated by systemic lupus.  She is scheduled to be seen at the Cleveland Clinic soon.  I am trying to find out what her prognosis is.  I do not want to ask her this as we are trying to avoid upsetting her any further.  Her attitude is great.
Thank you-






_______
Dear Lora,
Thank you for your prompt response.  My sister has since visited the Cleveland Clinic.  She was told that her diagnosis was correct.  The heart was damaged by the lupus and in turn the damaged heart is what has caused the aortic valve damage.  she was told that her heart is too enlarged and weak to be able to withstand any surgery.  They are trying a couple of medications to try to avert any further heart damage.  She was confused, at first she thought maybe this meant she is not too bad. She wants to go back to work.  Her only symptoms are dizziness, a cough and stomach pain.  Eventhough her heart is only functioning at 30%, she does not get breathless.  I am afraid that this treatment means that there is nothing they can do for her.  Is there still a chance for her to live a normal life span?  They also told her no physical activity whatsoever and that some of the medicines that they would like to prescribe for her heart are not indicated because of the lupus.  No matter what the prognosis is, I will never give up hope.  But I would like a realistic assessment of her condition because it will help me know how to proceed with her family.  thank you
Thank you for your question. Although the specific outcome for any individual is highly variable and difficult to predict about 1/3 of patients with cardiomyopathy improve, 1/3 stay the same and 1/3 decline in status.  I have enclosed some general information on cardiomyopathy that may apply to your sister's case.  When you get here we will be able to provide specific details as pertain to her. Hope this helps.
***************
Basically cardiomyopathy is a "weakness" of the heart muscle that can be due to ischemia (lack of blood flow - the most common), viral (more common in young people),  idiopathic (unknown cause but probably viral) and several rare conditions.  It is usually diagnosed by history and an echocardiogram.  Occasionally a heart muscle biopsy is performed.  
Symptoms are shortness of breath, swelling in the legs, chest discomfort and palpitations and increased fatigue.  Treatment is usually medical and in severe cases heart transplant.  About a third of patients get worse with some going on to transplant.  Another third stay the same and are managed well with medical therapy and the rest get better.  
Q: How common is Dialated Cardiomyopathy as a result of a virus?
A:  In young people it is probably the number one cause of cardiomyopathy.  In older people it is less common.
Q: Is it serious or no big deal?
A:  It is a serious condition and should be followed carefully.
Q: Should those of us that have it be concerned?
A: Concerned in regard to taking good care of yourself and following your doctor's advice.
A: How often should one (someone with cardiomyopathy)  have their EF checked?
Q: This will vary from doctor to doctor but generally every 6 months to a year.
Q: Does the EF% have anything to do with a person's energy level?
A: Someone with a decreased EF may feel more fatigued.
Q: What is the average life years expectancy of a person with Dialated Cardiomyopathy?
A: This will vary considerably depending upon the severity of the illness.  Some people may die within months to years and others  go on to have normal lifespans.
Hope this helps.  Feel free to write back with any additional questions.
Information provided here is for general educational purposes only.  Only your doctor can provide specific diagnoses and treatments.  If you would like to be seen at the Cleveland Clinic, please call 1-800-CCF-CARE for an appointment at Desk F15 with a cardiologist.