As a physician and a patient, are you angry that you were misdiagnosed for so many years?
No. Dwelling on what might have been is not productive and is a waste of precious energy. Moreover, had it not been for my illness, I would not be where I am today, having led the development of two cancer drugs, one approved for pediatric leukemia and the other breast cancer. My life changed for the better in so many different ways.
You survived your medical ordeal. What helped you the most?
First, I would not have survived without the undying love and support from my wife; she literally saved my life on many occasions. Second, I kept a positive attitude, giving thanks for what I had, and not what I had lost due to illness. I also didn’t allow my medical condition to define who I was. And third, I understood that despite the statistics that physicians love to quote, we (the medical profession) know very little about what it takes for the body to heal, which is often more than prescribing medications and devices. I realized that I had control over a large part of my healing.
If you could revisit these experiences, would you do anything differently?
Yes, I would have been more vigilant regarding possible signs of Lyme disease when I first began to experience symptoms. Did I miss a rash that I might have attributed to something else? Should I have aggressively pursued the explanation for an abnormal, non-specific laboratory test early on in the course of my illness? It could have led to an earlier diagnosis of Lyme disease when treatment might have prevented permanent heart damage.
What do you feel you’ve learned on this medical journey?
(1) You (or a loved one) need to advocate for yourself when it comes to your health. (2) Never give your power to someone else; you know your body better than any physician regardless of where they received their M.D. (3) Miracles can happen and they do all the time. (4) There are more unknowns when it comes to the human body/health/disease than there are knowns. If your physicians says, “This never happens,” find a new physician since that statement implies they know everything there is to know about the human body. (5) Medicine is an art, not an exact science. Outstanding physicians listen to their patients, examine them, and use technologies to support/confirm a diagnosis.
Do you feel differently with a new heart than you did with your old one?
From a physical standpoint it is a sea change, particularly comparing my old heart after it was affected by Lyme disease. Physically, I am able to do things that I have not been able to do for over 20 years. One glaring difference is my new found affinity for television shows on HGTV. Before the transplant, I am not sure I even knew what HGTV was. Now, I’ll pass on watching Duke-UNC basketball games to watch a House Hunters International episode instead. Now that says something. In addition, there is a song that inexplicably elicits an emotional response that didn’t occur prior to the transplant. I have no good explanation for the sudden love of HGTV and emotional response to a song.
What advice would you offer readers to help protect and advocate for themselves in medical situations?
Become an informed, active participant in your care. That doesn’t mean you constantly have to second guess your health care providers; it means that you shouldn’t be a passive observer since you know your body and how you are feeling better than a stranger (doctor).
How would you like to see the medical profession change?
Don’t forget the basics— taking a thorough history, which means listening to patients, and do a complete physical examination. Medicine, in my opinion, will always be an art and not an exact science. Having said that, we (physicians) would be foolish not to utilize the latest advances in technologies to help deliver top-notch care. However, personalized care means just that, knowing your patient as a unique individual and not a diagnostic code. Along the same lines, physicians need to be taught to problem solve and think out of the box, rather than simply relying on automated tests, which they often don’t understand.
Can the medical profession become more personalized and still be accurate and efficient?
If by personalized you mean treating the patient as a unique individual and not according to an algorithm, the answer is yes. We should utilize the latest technological advances to help guide patient care. That does not however mean we should replace listening to our patients, and performing a thorough physical examination with computerized readouts.
What is the number one thing you hope readers take away from your book?
Trust your instincts. If your instincts tell you that what you are hearing from your doctor doesn’t seem right then continue to seek for answers. Although you may not be able to describe your symptoms in medical jargon, don’t settle if what you are being told doesn’t seem right. That doesn’t mean being in denial, but honoring the fact that you know your body better than any physician ever will. Become an active rather than passive participant in the most important aspect of your life- your health.