Mended Hearts Open Forum

Hello! 

This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it! 

Hello! 

This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it! 

Hello! 

This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it! 

Hello! 

This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it! 

Hello Madeleine, I also have LVNC.  I found out a few years ago at age 56 after years of increasing tiredness.  I had a pacemaker defib placed in at the time and it definitely helped.  My ejection fraction was 11 so it saved my life.  Denise

Hello! 

This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it! 

Hello Madeleine, I also have LVNC.  I found out a few years ago at age 56 after years of increasing tiredness.  I had a pacemaker defib placed in at the time and it definitely helped.  My ejection fraction was 11 so it saved my life.  Denise

Hello! 

This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it! 

Hello Madeleine, I also have LVNC.  I found out a few years ago at age 56 after years of increasing tiredness.  I had a pacemaker defib placed in at the time and it definitely helped.  My ejection fraction was 11 so it saved my life.  Denise

Hello! 

This is my first post on this forum, I'm a 34yo and after intermittent episodes of fainting my entire life just got diagnosed with a congenital heart defect (left ventricular non compaction) it is very rare but similar risks to left ventricular hypertrophic cardiomyopathy. I had a tilt test two days ago and fainted abruptly and my heart stopped and then had arrythmias, and the decision was made to implant a pacemaker and ICD sometime this week, I'm waiting for it to get scheduled. I always ignored my fainting and was told it was because of anxiety and stress, I only decided to get checked out this year after I fainted while assisting a c-section (I'm a certified nurse midwife), and a respiratory therapist afterwards told me that I absolutely needed to stop ignoring this, I'm so thankful she gave me some tough love and now I know what's going on! It has been a really overwhelming couple of days, I'm just reaching out to this community as I feel quite alone during this process and assume other people who have cardiomyopathy can relate to what I'm feeling. I have wonderful and supportive friends and family, but they cannot understand what it was like for me to wake up after the procedure and have the doctor show me that my heart stopped for 18 seconds on the monitor, and then looked like some fibrillation until I became conscious. I'm a very active and adventurous person, I love climbing mountains and traveling, and I have been working as a midwife doing 24hr busy shifts, this is all quite a shock and if anyone has any advice or can relate I'd very much appreciate it!