Sunday, May 18, 2014

Escaping Dr. Hodad

Dr. Marty Makary, in his book Unaccountable, writes about Dr. Hodad in the very first chapter. Reading about this doctor, I realized that I had heard of him more than once, in more than one hospital. I just did not know his last name, given to him by surgical residents - HODAD - Hands of Death and Destruction. His name says it all. If you are introduced to him, sign no papers. Escape!Run!

Escaping Death

"I thought you would be dead now."
How could a physician, trusted to protect life and do no harm, look directly at her and say this to Rose? But he did. Who was he? He was not a surgeon. He was a medical doctor. But he was part of the team in a terrible surgical drama that played out in Rose's chest, and he did nothing, nothing at all, to help her.

Yes, Rose fell into the hands of Dr. Hodad and those who collaborated with him. But she did not die. From her story, we can learn why it is worth doing everything possible to avoid the hands of death and destruction in the first place.

Every day, somewhere in the world, someone is having a surgery like Rose needed. There are surgeons who have spent many years perfecting the most complex surgery in the chest, aortic surgery, along with replacing the aortic valve. Rose had been born with BAV, and she also had an ascending aortic aneurysm.

Referred from doctor to doctor in her local city, Rose trusted the doctors she met, trusted them with her life. She believed that she would be referred to the right surgeon, with the right skill. She entered the hospital and had surgery. It was far from ideal, but she came through the complications. With time, she should have been feeling better and better.

Something is Terribly Wrong

But Rose was getting worse. She did not need anyone to tell her that something must be terribly wrong. And it was. Eventually Rose learned that her aortic aneurysm surgery had been botched. Normally a Dacron graft is used to replace the bulging section of aorta that is called an aneurysm. But not in the hands of Dr. Hodad. He had replaced her BAV with a pig's valve, which included part of the pig's aorta above the valve. Dr. Hodad simply cut out Rose's aneurysm, and instead of using Dacron, pulled Rose's own remaining aorta down until it met the pig's above the valve. What went wrong? There was too much tension on her aortic tissue. Rose's stretched aortic tissue began to pull away from the stitches holding it to the pig valve, and blood began to leak out around her valve with every beat of her heart. 

I am amazed at the depths of courage and strength Rose found within her. She fought for her life by researching and reaching out to others, asking questions. She trusted people she did not know. They helped her find her way to an experienced aortic surgeon in another state. She put her life in his experienced hands. Rose's first surgery, in those experienced hands, would have been easy.  This surgery was a fight for life. It took all day. He saved her. 

Escaping Destruction
I remember being told, I think by the anesthesiologist, that the surgeon who would replace my husband's critically narrowed BAV was a good technician. That was over 20 years ago. I didn't appreciate it then as much as I do now. Knowing now how complex that surgery was, I know that the surgeon was at least good enough to get through the challenges - a man in heart failure with a critically narrowed, extremely calcified, and abnormally small BAV. I can imagine a very different outcome with Dr. Hodad. Although, as Dr. Makary writes, the best technician may not be charming like Dr. Hodad, it is important to get the very best skill available to you to save your life.

Years later, my husband had aneurysm surgery. I remember a nurse telling me that his surgeon had "golden hands" and would be her choice. I didn't fully understand the importance of what was said. This was not just being polite. This was someone who worked there and saw the outcomes, day after day. Dr. Makary writes about asking the "insiders" about the doctor you are considering. Those who work there will have more information than you do, if you can find a way to tap into their world.

Finding "Dr. Right"
Often the Bicuspid Aortic Foundation is asked about physicians who can help those with BAV. This is such a difficult dilemma for us all. We do not have enough information to help find Dr. Right in the many places where he is so needed. What we can do is encourage everyone to do everything they can to find Dr. Right and flee from Dr. Hodad.

For those with BAV, medication cannot solve their problems, and surgery and surgeons are extremely important. Thinking about Rose (not her real name), my own family, and the larger genetically related BAV family whose lives all depend on surgical skill, there are things we can do to help ourselves:

  • Referrals given may be to Dr. Hodad, not to Dr. Right; you can refer yourself to surgeons in order to find Dr. Right
  • Educate yourself about the procedure you need and ask the surgeons you consider many questions 
  • Think in terms of the best skill based on results, not the nicest personality 
  • Other patients may not know enough about what happened to them; ask the "insiders"
We are
Creating a 
Climate of Hope

Arlys Velebir
Bicuspid Aortic Foundation