Heidi's Personal Story

I was commiserating with my stay-at-home Mom friends about how tired I was trying to keep up with two small children and being overweight. But we all had the same complaints. I decided that 2004 would be my "year for change!"

(Little did I know!) I began the South Beach Diet on January 28. The following week, I was eight pounds lighter and had an appointment with my primary care physician to get a baseline health check so that I could monitor my progress. Just before my doctor left the room, he asked if I had  any other questions. (I had PVCs and PACs two years prior that he assumed were benign and would go away on their own.) I mentioned that I was having them again and that my heart beat sounded "kind of loud." He listened and ordered an echocardiogram. On February 6, ironically, Heart Day, I had an echo. As I returned home from the appointment, my doctor's office called me and asked me to come right in. When this happens, you drop what you're doing and race to the doctor's office immediately.

The doctor informed me that I had aortic insufficiency as a result of a congenital defect of the aortic valve, my ejection fraction was 20%, and I had significant hypertrophy of the left ventricle, and needed my aortic valve replaced immediately. I had to meet with a cardiologist the following week, have a number of tests (catheterization, TEE) then consult with a cardio-thoracic surgeon (Peter Knight, the best in Rochester, NY, at Strong Memorial Hospital), and have surgery within a few weeks or I could die of heart failure in a very short time. Huh? I had no idea! I was blindsided. Why didn't anyone find this earlier? But if they had, would I have been able to have children? What if I die while on the heart-lung machine? I had better write my Will and my Health-Care Proxy (which everyone should do anyway)! Who will take care of my children? Will they remember me? I'll have to take Coumadin for the rest of my life?? These and zillions of other questions raced through my head, so I did some internet research, watched a few surgeries on-line, and told my family everything I could about the pending surgery. My "limited" medical background really did help me to understand exactly what was going on and be able to put it in laymen's terms for my family. What truly worried me was that I wouldn't be able to care for my children after surgery. What would I do? I was told that for three months I wouldn't be able to lift more than 10 lbs. My baby weighed 20!

I really didn't have much time to prepare for surgery. I met with the surgeon on Wednesday, February 25 and had surgery the following Monday, March 1, 2004. I think if I had had more time, the anxiety would have been much worse. As anyone can attest, the anticipation is the worst part of this whole thing. I recommend Valium the night before surgery, it helped quite a bit. I had a St. Jude mechanical valve to replace the quadricuspid valve (weird, huh?) on March 1. Leave it to me NOT to be a textbook case. I had third-degree heart block that did not resolve after four days, so a pacemaker was implanted on March 5 - another glitch! Oh man!

I don't remember a lot about the first few days of my hospital stay. I do remember the breathing tube and how difficult it was to communicate with my family with that thing in the way, but it was removed that same night after surgery. I gained 25 pounds of fluid during surgery, very frustrating for someone who was trying to lose weight in the first place. That Lasix is a wonderful thing - all of the fluid was gone before I was discharged. I was sent home on March 6 with eight different medications. I am the type of person who hates to take anything for a headache, so this was very difficult. I was on Coumadin, a multivitamin, Toprol, Altace, and Wellbutrin (just to make things a little easier to deal with), Vicoden as needed for pain, Lasix, potassium, aspirin, and an antibiotic. Before surgery, I imagined that after surgery I would be so weak that I would barely be able to get out of bed, raise my arms, or walk to the bathroom. To my surprise, my first day home, I began my walking program; five minutes, three times per day and was completely capable of making it to the bathroom. My chest really didn't hurt as much as I had imagined. I did not take any pain medication after day three. The only time it hurt was when I coughed, and pain medication didn't relieve that anyway. (However, the bout of bronchitis I got three weeks post-op was not fun. Coughing that much and that hard for that long was not pleasant!)

I just had my follow up with the cardiologist today, and he was very happy with my progress. I am now five weeks post-op, 30 pounds lighter, and walking between one and three miles per day without any difficulty. I am currently on Coumadin, Altace, a multivitamin, and Toprol. I CAN lift my baby, just not as much, and my heart, at the time of the EKG, showed a perfect sinus rhythm without pacemaker activation. Hmmm, did I need the pacemaker? Who knows?

I wish that I had found this website before surgery - our local chapter of Mended Hearts referred me to it. Reading other people's stories and seeing how equally worried they were helped a lot after surgery and would have been a Godsend beforehand! The unknown really makes the situation much worse than it is. I have passed this website on to my cardiologist's office to give to people in similar situations. I hope they actually give it to people.

If anyone would like to chat about his or her situation, or if you're reading this about to face surgery yourself, please feel free to contact me at heidi511@rochester.rr.com. Thanks for the site! To quote Sonny & Cher, "And the beat goes on . . .."

Thank you!

"And the beat goes on . . . "

Heidi