A few months ago I was given the book, "Gone In A Heartbeat" by Dr. Neil Spector. I knew from the first page that it was going to be an incredible story. In fact, as soon as I read the synopsis I could hard wait to dive in. One of the things that help me personally in this journey is reading harrowing tales of patients fighting Lyme disease which end in amazing victories. It's a reminder that no case can be too far gone, no matter how bad the day, week, or month may feel. It's a reminder to always keep going, even when hope feels gone. Dr. Spector landed in the hospital from Lyme disease complications with 48 hours to live & the countdown ticking for a life saving heart transplant. It was in the very final moments that he received a heart to survive. The synopsis of the book is as follows:
Dr. Neil Spector, one of the nation’s top oncologists, led a charmed life. He was educated at prestigious universities, trained at top medical centers, and had married the woman of his dreams. It seemed too perfect. And it was. In 1994, it all came crashing down. He and his wife lost two unborn children, and a mysterious illness brought him to the brink of death. In his compelling memoir, Gone in a Heartbeat, Dr. Spector describes in great detail how he was misdiagnosed and, despite being a medical insider, was often discounted by his fellow physicians. As he recounts his own unorthodox approach to medicine and physician/patient relationships, Dr. Spector encourages readers to never surrender their power to a third party.
To say that this book is a nail biting page turner is an understatement. There is so much to this story, and what really shook me was the fact that he himself was a physician and had colleagues discounting his disease to his face. He had to fight until almost his last breath to get proper care. As a patient we all deal with that, but I guess I was blind to the thought that a physician would endure the same run around. But, alas it just shows how misunderstood this disease is, no matter who you are.
When I finished reading the book I was left speechless, but I also had so many questions. Dr. Spector is incredibly kind and personally answered some questions for me that he is allowing me to share on my blog. If you are interested in the Q & A then read on:
When I finished reading the book I was left speechless, but I also had so many questions. Dr. Spector is incredibly kind and personally answered some questions for me that he is allowing me to share on my blog. If you are interested in the Q & A then read on:
1. Since chronic Lyme disease is not acknowledged by the IDSA did you feel that you as a doctor writing about it might tarnished your reputation or you might get backlash? Did that deter you at all in deciding to be so vocal and honest?
Dr. Spector: No, I'm not concerned about he response to IDSA folks to my story. My story is what it is, an example of what can happen when doctors rely on tests rather than clinical judgement and don't listen to their patients including, yes, even a physician-scientist. I am only pointing out the limitations of the current way we diagnose and care for people with Lyme and other tick-borne diseases.
2. How do those colleagues who just downplayed your symptoms feel after they realized the severity of your illness? Has your story changed their perspective on Lyme disease?
Dr. Spector: My story is less about chronic Lyme after treatment since my cardiac issues resulted from untreated Lyme although the treatment did not reverse the heart damage, which IDSA may find difficult to believe.
3. After the book came out did you experience backlash from medical establishments or colleagues since you are disproving those who claim that chronic Lyme disease does not exist? On the flip side, did you receive any surprise encouragement from either?
Dr. Spector: My primary doctor was a friend and felt bad once the diagnosis was made. We moved shortly thereafter, so I'm not sure he heard about the damage that was done by the misdiagnosis eg the transplant.
4. You are a doctor, and your inner voice was silenced by colleagues. So what can those patients who do not have this background do, so their voice is heard and they get help?
Dr. Spector: Yes, if this can happen to me God help other patients. They need to be informed, use crediblesources, and not stop seeking answers.
5. We're the suicidal thoughts after the diagnosis or while searching for the answer?
Dr. Spector: The one time (only a fleeting but very real thought) was days before I had the transplant in the midst of florid congestive heart failure and my body literally shutting down.
6. Who was your support system? Do you feel there should be more resources for those who support (are caregivers) to a Lyme Patient, so they can effectively do so?
Dr. Spector: My support system was essentially my wife who was amazing throughout my 4 years to find a diagnosis and then 12 years living with the AICD and 10% heart function and eventually transplant. I now attend an amazing Lyme disease support group in Raleigh, NC that meets monthly and provides incredible support and information. Yes, knowledgable support is important regardless of the problem.
Dr. Spector: No, I'm not concerned about he response to IDSA folks to my story. My story is what it is, an example of what can happen when doctors rely on tests rather than clinical judgement and don't listen to their patients including, yes, even a physician-scientist. I am only pointing out the limitations of the current way we diagnose and care for people with Lyme and other tick-borne diseases.
2. How do those colleagues who just downplayed your symptoms feel after they realized the severity of your illness? Has your story changed their perspective on Lyme disease?
Dr. Spector: My story is less about chronic Lyme after treatment since my cardiac issues resulted from untreated Lyme although the treatment did not reverse the heart damage, which IDSA may find difficult to believe.
3. After the book came out did you experience backlash from medical establishments or colleagues since you are disproving those who claim that chronic Lyme disease does not exist? On the flip side, did you receive any surprise encouragement from either?
Dr. Spector: My primary doctor was a friend and felt bad once the diagnosis was made. We moved shortly thereafter, so I'm not sure he heard about the damage that was done by the misdiagnosis eg the transplant.
4. You are a doctor, and your inner voice was silenced by colleagues. So what can those patients who do not have this background do, so their voice is heard and they get help?
Dr. Spector: Yes, if this can happen to me God help other patients. They need to be informed, use crediblesources, and not stop seeking answers.
5. We're the suicidal thoughts after the diagnosis or while searching for the answer?
Dr. Spector: The one time (only a fleeting but very real thought) was days before I had the transplant in the midst of florid congestive heart failure and my body literally shutting down.
6. Who was your support system? Do you feel there should be more resources for those who support (are caregivers) to a Lyme Patient, so they can effectively do so?
Dr. Spector: My support system was essentially my wife who was amazing throughout my 4 years to find a diagnosis and then 12 years living with the AICD and 10% heart function and eventually transplant. I now attend an amazing Lyme disease support group in Raleigh, NC that meets monthly and provides incredible support and information. Yes, knowledgable support is important regardless of the problem.
The book is a wonderful read if you are looking for something that will give you hope, and a read that has an ending which will inspire. I read this book in short bursts whenever I laid in bed, and I plan to include them in my Random Acts of Kindness boxes, because I really feel like it's something that patients NEED to read. It's so crucial to see and hear success stories and to know you are never alone. If you want to have a copy for yourself you can buy this book here.
xoxo,
Christina
xoxo,
Christina
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