One of the critcal learnings from my heart valve surgery experience was:

The patient (or their caregiver) must, at times, be tenacious. We must, at times, ask questions that may or may not be silly. We must, at times, stand up for ourselves and our hearts. Ultimately… we must, at all times, be our own, best advocate.

I am reminded of this belief as my inbox is often filled with patient and caregiver emails that radiate frustration and confusion. Many of these emails begin, “Adam, I really need to vent right now. I’m having problems with __________.” However you chose to fill-in that blank, I can relate.

Patrick Hightower – Heart Valve Surgery Patient

Recently, I received a patient story that illustrates just how far certain patients and caregivers will go to get the best care. Here, for your review, is the educational and inspirational story of Patrick Hightower:

Adam, I had this picture taken 24 days after my heart valve surgery on August 9, 2009.  As you can see, my main incision is about 2 1/2 inches long. I also have a 1/2 inch scar just below it – which was for the drain line.

Although it may appear that I had minor heart surgery, I did in-fact have degenerative mitral valve with severe regurgitation ^[1], persistent atrial fibrillation ^[2], and tricuspid regurgitation ^[3]. An annuloplasty band was installed in each valve, each valve was repaired and a MAZE procedure was done to stop the fibrillation. The actual surgery was six hours plus two hours pre-op and another two-hours post-op. I have no idea how long I was on the heart-lung machine ^[4].

I owe a huge debt of gratitude to my surgeon, Dr. Marc Gillinov and The Cleveland Clinic ^[5] for my successful surgery. I realize that each person’s situation is different but, for me, the minimally invasive surgical procedure used by Dr. Gillinov was ideal.

Dr. A. Marc Gillinov – Patrick’s Surgeon

In my situation, I had to literally fight for my right to have a top surgeon, minimally invasive surgery and a little scar.  My first doctor in Brazil thought I needed to see a psychiatrist because I was so adamant about the minimally invasive approach. Another doctor said I didn’t need to do anything. The third cardiologist, who is now my primary Brazilian cardiologist, said, “Go to the States!” He felt my problem could not be surgically treated safely in Brazil. Finally, my cardiologist in Houston said, “We really don’t do the minimally invasive procedure.”

After all of those dead-ends, I wrote Dr. Gillinov at The Cleveland Clinic. Soon after, I sent Dr. Gillinov my test results and waited, hoped and prayed for him to accept me. I did this with no cardiologist recommendation, just perseverance.

As for the details of my surgery:

• I was in the hospital for a total of five days which includes my surgical day. As you know, surgical complications can occur. Mine was a problem with residual air in the surgical cavity. As I live in Brazil, this presented a problem with my flight home. After discharge, I was released to the adjoining hotel. After my 7-day checkup, I was allowed to fly home.
• Eight days after surgery, I was only taking four Motrin and two Vicodin a day. Plus, I am taking one heart rhythm pill for six weeks and a baby aspirin. No Coumadin for me.
• Like most, I get tired quickly and need to rest often. I am sore and have an occasional muscle spasm. The hospital really did a number on my sleeping rhythm, so that is still disrupted.

In light of my story, please tell others to research their problems, consider their options and get second, third and forth opinions if at all possible.

Finally, your heart valve surgery book ^[6] provides a great service for all of us patients – both before and after surgery.

Thank you!

Sincerely,
Patrick M. Hightower