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What is a stiff heart and what outsis the prognosis and life expectancy?

By June 9, 2016 - 6:17pm
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I've been experiencing severe shortness of breath and fatigue plus horrendous swelling in my legs, ankles, fingers and feet. I've had these symptoms for at least 6 months and had a sudden cardiac arrest a little over a year ago. So I went to my Dr about 3 months ago or so and had a nuclear stress test and they're was an abnormality that showed a blockage. He decided I needed a cardiac catheterization and I had that yesterday. Well the Dr that did the procedure told my mom I had no blockages but I do have a stiff heart with no further explanation. I was still asleep or I would've been asking questions but either way my mom seemed ok with this. So when I got home and I googled it I got scared. If you could explain what this means and what the general life expectancy is that would be great. Maybe it's not as bad as i think. Also I'm only 35 years old and have 2 daughters. One 15 and the other is 5. I'm all they have and I need to know what I'm facing for their sake and arrangements for them if need be. I need to know what exactly it outs that we're facing.

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HERWriter Guide

Hi Hopingtobehealthy

Thank you for you post and I'm sorry you're dealing with this at such a young age.

Cardiac amyloidosis ("stiff heart syndrome") occurs when amyloid deposits take the place of normal heart muscle. It is the most typical type of restrictive cardiomyopathy. Cardiac amyloidosis may affect the way electrical signals move through the heart (conduction system). This can lead to arrhythmias and conduction disturbances (heart block).

Secondary amyloidosis (AA type) rarely affects the heart. However, a form of secondary amyloidosis called senile amyloidosis involves the heart and blood vessels. Senile amyloidosis is caused by overproduction of a different protein. The condition is becoming more common as the average age of the population increases.

Your doctor may tell you to change your diet. This may include salt and fluid restrictions.

You may need to take water pills (diuretics) to help your body remove excess fluid. The doctor may tell you to weigh yourself every day. A weight gain of 3 or more pounds over 1 - 2 days can mean there is too much fluid in the body.

Digoxin, calcium channel blockers, and beta blockers may be used with caution in patients with atrial fibrillation. However, the dosage must be carefully monitored. Patients with cardiac amyloidosis may be unusually sensitive to any side effects.

Other treatments may include:


Implantable cardioverter-defibrillator (AICD)

Pacemaker, if there are problems with heart signals

Prednisone, an anti-inflammatory medicine

A heart transplant may be considered for some patients with very poor heart function. However, it is not done in those with AL type amyloidosis, because the disease weakens many other organs. People with hereditary amyloidosis will need a liver transplant.

Life expectancies vary but Anon, you need to get a hold of that doctor and have a meeting to discuss things thoroughly as soon as possible. Make sure someone is with you taking notes because this is a stressful time - you won't remember half of what you hear.

Will you please keep us posted? We are here for you anytime you need to talk.


June 10, 2016 - 5:36am
(reply to Susan Cody)

Thank you. What you responded with is exactly what I have found about this condition. I'm very afraid as I have read what the average life expectancy is...a little over a year. I seriously hope that was a old article and that they're are some better treatment options. I can't leave this world so soon. I can't leave my girls. My little one will absolutely be devastated. I'm all they have.

June 10, 2016 - 1:31pm
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