Benjamin, 28, woke up Monday morning to find that he had severely swollen ankles and calves. In fact, the swelling extended almost to his knees. He told his wife, Theresa, “I am in heart failure.” She did not think that such a thing was possible, because of his young age. She did know that he had been fatigued ever since he had gotten a cold several weeks earlier.

Benjamin went to the doctor, but he didn’t examine Benjamin or order any tests. He said that Benjamin’s symptoms were related to the fact that he had recently quit smoking and his body was going through withdrawal. He said that Benjamin’s blood pressure was 180/100 only because Benjamin was anxious about seeing the doctor.

Hearing this report, Theresa, age 23, was furious and asked why Benjamin hadn’t protested. Benjamin said sincerely, “I was being a good patient. Good patients just do what they’re told.”

On Tuesday, Benjamin began vomiting clear water-like fluid, but the doctor’s office said that they couldn’t see him again until Wednesday. In that visit, they found that Benjamin had gained 20 pounds since Monday and his blood pressure had continued to climb. Theresa presented the doctor with a timeline laying out his symptoms. The doctor ordered some tests and sent them home, still without examining Benjamin.

Later that night, they called to tell Benjamin that they had arranged for him to see a heart doctor two days later, on Friday, because the test results showed that his heart was enlarged to three times its normal size, and his blood test results were abnormal as well
By Friday, Benjamin’s blood pressure was even higher and he had gained a lot more weight. The cardiologist took one look at his x-rays and blood tests and sent him to the ICU [Intensive Care Unit] a few floors away from his office in the hospital.

Theresa reports, “My husband was in multiple system failure secondary to advanced heart failure. His kidneys, liver, heart, everything was shutting down because his heart was so weak, it couldn't support them.” His heart was pumping at about 5% efficiency. Theresa notes, “He would have been dead in a day had he not been admitted to the hospital.” They were warned that he might have to have a heart transplant.

His body had been retaining fluid because his kidneys were shutting down, and as a protective reflex his body started vomiting to try to lose the excess fluid. But that situation led Benjamin to drink large amounts of water in an attempt to stay hydrated, unwittingly adding to the problem. In the ICU, they severely restricted his fluid intake and gave him medicine to help his body get rid of the excess fluid.

When Benjamin was discharged from the ICU several weeks later, he weighed 80 pounds less than he had when admitted -- mostly as a result of shedding the excess fluid. Eventually, he recovered to the point where he had about a third to a half of normal heart function.

About eight years later, in 2008, he had the first of three heart surgeries, after his heart function dropped to about 15-20% of normal. He has also had a pacemaker/internal defibrillator implanted, and it has saved his life. He tires easily and often takes naps, and works part-time in his own business. While they had planned that Theresa would be the stay-at-home parent, Benjamin has taken on that role. Theresa works three jobs.

Theresa describes the impact of Benjamin’s condition: “He takes fistfuls of medication every day. Every time he doesn't feel well, he wonders if it's his heart worsening. He worries that the defibrillator will go off while he is driving, or while he is watching one of our kids. I worry about the same thing. I start to feel panicked when he doesn't answer the phone before the voicemail picks up.”

She continues, “If that doctor had just checked his swelling or ordered an x-ray that first day, my husband's heart could have been spared irreparable damage. Every hour counted. He's 38 now and he half-jokes that his goal is to live to see 50. We don't talk about growing old together as it's too painful to admit it probably won't happen. I wonder about life as a widow and how we'll go on if we lose him. I wonder if I'll have to try and explain his death to our kids while they're young, and how to raise them without him if that happens.” Theresa is 34 years old. Their three children are now 6, 8, and 10 years old.

The impact on the children is sobering: “We've had to train our kids on how to call 911 if they're home alone with Daddy and something happens to him and he can't talk or call for help. When he got very sick again a couple of years ago, we had to have them practice what they would say and made sure they could dial on any of our phones/cell phones. That's more reality than a child should have to deal with. The worry never stops. If only that doctor had listened -- how very different our lives could have been.”

With the benefit of hindsight, Benjamin might change his definition of a “good patient.” What steps can help you avoid a similar tragedy?

  • Get a copy of your own medical records, which will show what normal weight, blood pressure, and standard blood test results are for you. Being able to show these to the doctor can help make the case that your current condition is not normal for you. 
  • Track your symptoms in writing and give the doctor a copy of your notes.
  • If you feel that a doctor is dismissing your symptoms, ask questions such as, “If you knew nothing else about a patient who presented with this symptom, what diagnoses would suggest themselves?”
  • Get a second opinion, even if it means going to an urgent care walk-in clinic or to the emergency room. Sometimes people get locked into dealing with the first doctor they see, and their best chances for a good result may involve getting another point of view. It may be expensive to go this route, but if you think that something is seriously wrong with you, you may find that it is less expensive to deal with if you get prompt attention.