DCM prognosis ?

[Simona4]

My hubby has DCM diagnosed earleir this year at 31 years old. Technically, Mild DCM idopathic.  He's normal weight, no other health issues. His symptoms however are progressive and interrupting. He's gained 7 lbs this last week, frequently has bout of gasping for air in his sleep and after exsertion, almost constant chest pains, shortness of breath, pain down the left arm, memory and confusion problems, and yesterday he somehow obtained several bruises down his right arm. He's also problems with bluish colored toenails, rashes, extreme dry skin & dry mouth/lips. He has been hospitalized when his heart rate and b/p dropped dangerously LOW. He has a dry almost hakcing cough, and has headaches that will last weeks before subsiding.  His EF is 40-45%.  His Dr. says "his EF isn't significant enough to be causing him to have such severe symptoms, but they KNOW he has such severe problems.  My questions:

   Does the EF of 40-45% really have a specific set of symptoms or significant severity of symptoms?
   Is DCm and CHF synonymous as the ER Dr. suggested?
   What would a prognosis be based on his age,symptoms,EF, and lack of other health issue?  (his Cardiologist says DCM is a life long disease but how long his life will be is unknown. I asked for numbers, and he said that in my hubby's case it's rather uncommon for someone to have these issues, AND when he did the stress test, they had to administer drugs to counter the sped up heart because he could NOT breath well.  Why have they never put him on oxygen?  I am just not understanding.  

[Simona4]

So, my hubby's feet turned blue yesterday, yet returned to normal when propped up. He's having bad chest pains, shortness of breath. His Dr. did an ultrasound of the legs today....All Normal...Now he says he "doesn't know what's causing my hubbys trouble BUT it isn't the heart".  He wants him to go BACK to a lung Dr. who found NOTHING the last time he was there, a gastro Dr, and his G.P. Hubby feels like he is back to square one. He refuses to go to any of those Dr's because they missed his heart condition before, and if it's not his heart, then what?  Hubby feels like the Dr. has the impression he's making up symptoms, BUT everyone,including Dr has seen him turn pale,, his feet blue, and him clutching his left arm and chest.  Dr asked if the scar from the collapsed lung in 12-07 could be causing his shortness of breath and pain. How would we know...could it? We're uninsured and I feel getting NOwhere!  The Dr said the BETA blocker could be causing the bluish feet, but he FORGOT that he had discontinued the BETA when hubby was hospitalized...good thing I remembered. Also, my hubby was 157 lbs his last visit to the Dr in oct. and 167 today.  ECG today was "normal".   What do we do now?

[Cleveland Clinic]

Answers:
Does the EF of 40-45% really have a specific set of symptoms or significant severity of symptoms? Yes this is possible in some patients. Some don't have symptoms with ejection fractions of 10% others have symptoms at 45%. Its not that simple.
   Is DCm and CHF synonymous as the ER Dr. suggested? No. CHF is the state of being congested and short of breath. People can have DCM and not be in CHF, most patients are in this state when they are not sick.
   What would a prognosis be based on his age,symptoms,EF, and lack of other health issue? THis is hard to tell, he needs further in depth evaluation by a CHF specialist. THey can perform thorough exams and stress tests specifically to adress this, and to trigger them to start to consider heart transplant evaluation.
Why have they never put him on oxygen?  He only needs oxygen if his levle is low in the blood. This should only be the case hen he is sick or congested, not all of the time. But during these times he probably needs to be hospitalized.
Bottom line is that it seems that you have a lot of questions, which probably should warrant a visit with a heart failure specialist. Look for such professionals at large tertiary care centers, such as ours. THe other benefit is that these are usually transplant centers, which may be something he eventually needs. If he is a smoker tell him to stop now, as this is often a reason a patient is excluded from receiving a heart transplant.

[Simona4]

Meds are Enalapril*sp*, Famatodine(Pepcid), Aspirin 81mg, and Proventil, Hydrochlorot when certain it's needed for fluid retention.  He had been taking Metoprolol, but it was discontinued after he was hospitalized, the Dr. put him on a nitro-patch,  and they had trouble keeping his heart rate up (it was dropping to around 36 and he'd be unaware we were around), and his B/p up, even though his O2 reading were good.  So, as far as we all know, he has NEVER had any heart related issues.  He was anemic as a child, that's ruled out.  Just before, and shortly after the DCM Dx, he took a sleep study test, and sleep apnea was ruled out. A stress test, ecg and ekg's, and a heart cath; as well as cat scans, x-rays etc.  As far as medical history, he had congenital cataracts removed at 19-21, had two car acc. in 6 mths time, the last of which (in 02) required two units of blood. He then had to visit a breast cancer Dr. for a growth under his right arm, that was benign cyst...well it's gone anyway. Then there was a spontaneous colopsed lung(left side) 4 months before the DX of DCM.  If there was a BNP done, we aren't aware of it. Were in TN and I believe that maybe a second opinion would be good. My hubby likes his Dr. because he isn't a "serious bore", as he says. Thanx for the wishes, and same to you and yours.

[ddavey]

I am very sorry to hear about your husband and I hope this little bit of info helps
First, what medications is he taking now for the DCM?  In looking at your post I think it is not so much the ef number that is worrisome it is the fact of the bluish toenails etc.  My daughters ef is now up to 45% and we consider that a very good thing..  there is a blood test that is given to help determine the stage of CHF, it called a BNP test (brain natriuretic peptide)   i would be curious to know the numbers there.  Also, does he have or had in the past any issues with arrythymias??   We believe in my daughter's case (she is 23) her DCM is caused by arrythymia.   Second, with the advances in medical treatment cardiomyopathy is no longer a death sentence.  I would wonder in looking at what you have posted if there is some underlying cause here for DCM.  There are many times when the diagnosis of dilated cardiomyopathy is secondary to another issue, especially in someone your husband's age.  Where do you live??  If you are not happy with the cardiologist try to get to one out of a respected medical facility in your area.  I made the change with Amber, we are now with drs out of the Univ. of Mich and that has gotten us to where we are now.    best wishes to you and your husband   dawn