Mended Hearts Open Forum

Hi everyone,

This is my first post here so I apologize if my questions have been answered elsewhere.

I'm 31 years old, male, and had a valve replacement and aortic arch repair just about 9 months ago. I'd had no symptoms at all until i felt a sharp pain in my throat, and it turns I had a dissection and I ended up making to surgery that day. It turns out i had a genetic condition that made my aorta develop improperly.

Before this, I was extremely active. My job and my hobbies all revolved around physical activity, and I got over an hour of exercise per day. I enjoyed lifting weights, surfing, playing baseball, and I teach PE for kids with special needs. 

My recovery went about as expected for the first three or four months. However, I've never got my energy or strength back. I have trouble waking up in the morning and rarely feel rested. I fall asleep every day the moment I get home from work. I can go on a light walk, but anything above and beyond that fatigues me for days. When I'm more tired, I get dizzy, lightheaded, and see double. I've been following up with doctors but they haven't found anything abnormal in blood work, imaging, or any other tests they've done. I feel like I've kind of hit a wall and I'm starting to struggle emotionally. I realize 9 months isn't all that long, but the lack of progress has been really demoralizing.

Is this experience familiar to anyone? Has anybody found support groups, either in person or on zoom, that have been helpful? I'm in Los Angeles, for what it's worth. 
 

Linda,

I hope the results are satisfactory and you've returned to full activities.  
Best regards,
Vic

Original Message:
Sent: 09-02-2023 20:20
From: Linda Morris
Subject: Sternotomy and the cardiac blues

My heart doctor has retired and it was done at Baylor Scott and White

Original Message:
Sent: 8/31/2023 3:10:00 PM
From: Victor Fabry
Subject: RE: Sternotomy and the cardiac blues

Linda,

I've been told about several new procedures to repair and/or replace the mitral valve.  You should do some research online and be prepared for you next consult with the surgeon in Plano.

Best of luck,

Vic 

Victor Fabry, Founder
Healed Hearts of New Jersey

Original Message:
Sent: 8/31/2023 2:13:00 PM
From: Linda Morris
Subject: RE: Sternotomy and the cardiac blues

I had opened heart surgery 2012 on Aortic valve replaced with mechanical valve. I had done in Temple, TX Doing good and now have severe leakage in mitral Valve and waiting on evaluation with heart Dr in Plano.

Original Message:
Sent: 8/30/2023 8:29:00 AM
From: Victor Fabry
Subject: RE: Sternotomy and the cardiac blues

Riley,

You have survived a very complex and difficult open heart surgery to repair an aortic arch aneurysm. What surgeon and which medical center did you have  the procedure?  The recovery from the aortic arch and aortic valve procedure will be longer than a more common bypass surgery,  Have you completed the cardiac rehab program at a heart clinic?  Have you had a follow up consultation with your surgeon? Are you scheduled for regular consults with your cardiologist including twice yearly echogragrams?

I've had ascending aortic aneurysm surgery and arctic valve replacement in 2007 and aortic arch repair at the NYP Weill Cornell Medical Center in 2017.    Aneurysms are not considered classical heart disease. They are caused by a genetic defect that was inherited from a family member.  You must manage the type and level of exercise you perform to maintain a healthy heart. 

I suggest you contact the Marfans Foundation, a non-profit organization for patients with genetic aortic and vascular conditions. If you have any questions, you can forward your email and cell number, indicating the time of day to best reach you.

Be patient with your recovery.

Best Regards,

Vic Fabry

CEO, Greylock Advisors, LLC 

Hi,

I had a quadruple bypass a little over 2 years ago and part of my recuperation was a couple of months of supervised physical therapy. This was to build your physical strength back up. Certainly there is a mind/body connection when you experience something like this. Personally I've felt different mentally since my surgery. 

Hang in there. Your youth should help you recover quicker than this 67 year old who's responding to you.

Good luck.

Hi Riley,  I tried to send a message and I apologize if this is repetitive.  Sounds like sleep apnea or sleep hypopnea (like someone is poking you every couple of minutes wondering if you are asleep).  It will leave you feeling unrested in the AM and sleepy during the day.  Maybe something happened to your sleep cycle while you were in the ICU, meds, etc.  Sleep deprivation is as deadly as any heart condition.  A lot of Drs don't even consider it as they are working up more "serious" conditions that might be affecting you.  Get a sleep study and CPAP if you have apnea or hypopnea.  Best of luck to you!

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Tom Fullerton
Sioux Falls SD
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Riley, I feel the same way. I had ohs 5 years ago. I've been drained ever since, which also helped me gain weight. I'm just getting checked for sleep apnea. Maybe I would have been checked earlier but I had different ailments that made me think I'll get better after this is taken care of. First it was kidney stones. After finally diagnosing that and treating it (1 year). Then when I wasn't feeling better after that recovery I found out I had cancer (1 year). When I wasn't feeling better after that my cardiologist said sleep apnea. So now I'm going to get that checked. I seriously hope this is it because I'm tired of being tired. It's naps daily. Sometimes I just pass out sleeping because I'm so exhausted from nothing. I push myself to do simple everyday activities. Talk to your doctor about it. Tim is right and I wish I could have done something about this sooner than later.

Carrie

Hi Riley

My situation is different than yours but my recovery has seen the same peaks and valleys.  March 2021 I suffered a massive heart attack.  I developed complications afterwards.  Over 6 weeks in ICU, then 45 days in an acute rehab hospital.  Since then I was hospitalized ones with shortness of breath. After a med change, I started to regain strength.  Now I can run and bike without any issues.  I'm not able to compete like I did before the MI. (was a triathlete). But I'm getting stronger each day. 2.5 years after! You will get there. You have far more youth on your side.

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Jeffrey Luckenbach
Marlboro Township NJ
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Hi Riley,

Although our surgeries were quite different (mine was quadruple bypass 13 months ago), I hope my experience will be helpful. In addition to my follow up visits with my cardiologist, it was advised that I involve my primary physician in my ongoing recovery. She mentioned that a significant number of heart patients develop depression and our cardiologists don't always focus on that part of our recovery. We tried a low dose of prozac and after a few weeks, I felt my energy returning. Once that began, I could not come up with an excuse not to begin living again.

Best of luck.