Dec 14
jennybrodie2 , Posted on SUPPORT NETWORK Blog

A long journey to surgery

 My journey to open heart surgery was a long one, starting when I was 10 and began seeing a cardiologist on a regular basis. I was diagnosed with Marfan Sydrome when I was a kid and as more was learned about the disease my diagnosis changed from Marfan sydrome to something related to Marfan Sydrome, Loeyz Dietz maybe? Genetic tests were negative for everything. My doctors often said that I would likely need open heart surgery one day.  Over the years I think I have had every cardiac test that there is; holter monitors, 30 day montiors, stress tests, stress echos, MRIs, CT scan, regular echos, EKGs, an Electrophysiological study, a cardica catheritization...

 In October 2015 my doctor told me that it was time, I needed to have surgery, my mitral valve reguritation had increased and my left ventrical was starting to enlarge. After talking to a few surgeons I ended up at the Cleveland Clinic where Dr. Svensson was confident that he could repair my valve. I had Mitral Valve repair and a valve sparing aortic root replacement on January 21, 2016.   The aortic aneurysm repair was done using the modified david's reimplantation procedure. I was only 33 at the time of my surgery and it was my first surgey and first overnight stay in the hospital, and there's no denying it - it hurt! 

My surgery and recovery went well and my Mitral Valve repair was near perfect. Following surgery I expereinced V-Tach and PVCs and had to be put on Mexiletine. This helped with the arrythmias and I felt less tired.  I did 12 weeks of cardiac rehab - I was the youngest one there. All of the older men that were there had had heart attacks and had stents placed or a bypass... I often heard 'but you're so young.'  Cardiac rehab was great and really helped me get my strength back. It was reassuring to be 

The results of my surgery were amazing. I didn't realize just how sick I was until I felt better. Suddenly I was able to be active again, to run, to bike and to hike without being short of breath. My color increased, and I looked healthy again! hoorah! Six months after my surgery I was hiking a mountain in Glacier National Park. Seven months after my surgery I was biking again and could complete a 25 mile ride without feeling exhausted! 

However, one issue lingered...everytime I took a deep breath I could feel my sternum move. I asked my regular cardiologist about it several times and they were hopefuly that it would go away as I healed. Eventually they referred me back to surgeone who, after a CT scan, confirmed that I had sternal non-union. The top layer of my sternum had healed but the lower layers had not. This meant that I had to go back to the Cleveland Clinic in December 2016 and have my sternum re-cracked and plates put in place.  Hopefully this will take care of the problem and my X-rays are awesome. 
  • shirleymom
    A long journey indeed! Throughout, I could imagine seeing a confident and knowledgeable woman. I have six bypasses and 3 stents, and I know the positive attitude you have will carry you through life no matter what it tosses you. And, knowledge is power! Keep it up. Your story is inspiring. Thank you and happy holidays.
  • Leslie1965
    You most definitely have had a long journey and are an inspiration! Stay strong!!!! Heart to Heart, Leslie
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