Pat's Personal Story

Current Age: 40

Occupation: Registered Nurse

Your Family: A Husband, Mom, Dad, 2 Brothers, 2 Sisters, many nieces and nephews, many in-laws!

When you found out about your condition: I had just turned 19 when I found out the reason for my shortness of breath and fatigue. I had "critical"
Mitral Stenosis, most likely from Rheumatic Fever and Aortic Insufficiency and trace Tricuspid Insufficiency. I had just graduated from high school the spring before and had spent my senior year trying to figure out why I felt so terrible. I had been very good at athletics, running, receiving physical fitness awards and the last year of school I had become a shell of my former self.

What symptoms you had: Extreme shortness of breath, fatigue, weight loss, light-headedness, chest and neck pain.

How you prepared for surgery: The first surgery came so fast I didn't have time to think. By the time I had the second surgery, I worked at the hospital and had much support from all my friends and co-workers not to mention my family.

What type of surgery you had: The first in 1983 at age 19 was a Mitral Comissurotomy (repair), the second in 1989 at age 24 was a Mitral Valve Replacement.

Medications before surgery: Before the first surgery, none. Before the second surgery Lasix and Penicillin.

Medications after surgery: PCN, Coumadin. Six years ago I was started on Cozaar to decrease my blood pressure for my increasingly worse Aortic Insufficiency. Last year I was started on Coreg, a Beta Blocker, to decrease the work load on my Aortic Valve and to increase the pumping function of my left ventricle. Recently, I was started on Lipitor for a high LDL. That comes from family history! But, 12 weeks after starting it my LDL dropped from 122 to 63 and my total cholesterol dropped from 186 to 123. My cardiologist, who has been my doctor from the start, said I need a cholesterol infusion!

Type of valve you have: 27mm St. Jude

Hospital where your surgery was done: The first was done at St. Mary's Hospital at The Mayo Clinic in Rochester, Minn. And the second was done at St. Anthony Medical Center in Rockford, Illinois.

Your experience there: I had good experiences both times. I was young the first time and didn't really know what was going on. I really was in shock, I think. The second time I felt very at home being a patient at the hospital I worked at. I had so much support from my co-workers.

Your first few days home: After the first surgery I bounced back very quickly and had very little trouble. I had a thorocotomy incision (around the right side) and had very little pain. The second time because of scar tissue formation from the first surgery they did a sternotomy. That, as well, gave me little discomfort, except my collar bones were extremely sore from the retraction from surgery. I was home for a day when I started to experience chest pain that radiated through to my back. It was so painful and I felt so sick. I went back to the surgeon and the cardiologist the next day and was promptly re-admitted with a Pericardial Effusion, which is fluid build-up around the heart. My heart was being suffocated by all the surrounding fluid. I pleaded with my doctor that I couldn't take anymore surgery so they treated me conservatively with a steroid called Prednisone.
I spent 5 days in the hospital and it took several more weeks at home before the fluid all reabsorbed. I was off work a total of 7 weeks, including the surgery.

Your recovery since then: I have continued to feel great. I went on a backpacking trip to an elevation of 5000 ft. in Washington State 3 years after my surgery. I participate in all kinds of work outs from treadmill, biking, step aerobics, Tai-Bo, you name it. Just nothing dangerous because of the Coumadin. I never was a skier, anyway! Last year though, I found I was intolerant to higher elevations after a camping trip in the Smoky Mountains in North Carolina. I was unable to participate in our groups activities and even taking stroll was very taxing. That was a sign of my worsening Aortic Valve. At my normal elevation here in Chicago, I feel fine.


How you found out about this site: By accident, surfing the net.

Any other comments you can share: At this writing I found out I may be looking at a third surgery in the future. When that will be is hard to tell. My Aortic Valve will eventually need to be replaced. My doctor said the question is "What color will your hair be, brown or blue!" I'm still getting used to the idea that this most likely will happen again and I guess knowing what I know now, being an Operating Room nurse scares me. But connecting with all the people here and reading your stories gives my strength that I know I'm not the only one going through this.