Dear Lit Loves,
For the past week I decided to tackle my favorite genre, memoir, once again. I selected a book by Dr. David Fajgenbaum. It gained my interest because I had initially heard about him and this book via our local news. Dr. Fajgenbaum writes about being a doctor and being diagnosed with a rare disorder known as Castleman's disease. Since I have a few interesting and somewhat rare diagnoses myself, I wondered how a person in the medical realm would cope with a rare disease for which there is no cure.
Dr. Fajgenbaum chose to attend Georgetown for college where he was also the quarterback for their football team. It was unsettling to him to begin noticing symptoms that are worrisome. It started with weakness and fatigue which was strange because he is young and healthy. The next worrisome symptoms included what he refers to as blood moles appearing on his skin. Then he enters a hospital having gained 30 pounds of fluid weight while he had lost 50 pound of muscle weight. Dr. Fajgenbaurm had already lost his mother to brain cancer and now he was facing symptoms that overwhelmingly made him feel as if was getting ready to knock on death's door. In other words, his organs began shutting down. He received dialysis, struggled with brain fog, and continued with numerous tests as initially doctors thought he had a form of lymphoma. Dr. Fajgenbaum's father was an orthopedic surgeon in Raleigh so after conferring with his dad, he was moved to the hospital in North Carolina where his dad practiced. Eventually, after receiving seven forms of carpet-bombing chemotherapy, Dr. Fajgenbaum begins to recover.
Dr. Fajgenbaum eventually convinces his physician to complete a lymph node biopsy. The lymph node biopsy did not show that he had a cancer like lymphoma, but a rare disease called idiopathic multicentric castleman disease. He googles Castleman's disease while in the hospital and learns that most people only survive f short time and it involved lymph nodes that became enlarged and began producing substances that led to organ failure. Once he survives two bouts with Castleman's disease that left him in the hospital for weeks, he decides he is going to find the guru physician who had experpience diagnosing and treating Castleman's disease. That led to a Dr. Van Rhee at the University of Arkansas. Even upon seeing Dr. Van Rhee, he learns that even people who specialize in rare diseases do not have the keys to unlock and treat most rare diseases. It's the beginning of a collaborative patient/doctor relationship with Dr. Van Rhee and eventually a physician to physician relationship.
Dr. Fajgenbaum decides to forego his medical residency to work on his MBA. He had started along with Dr. Van Rhee an organization known as Castleman Disease Network Collaboration. It started small with just the assistance of family and friends. After five relapses of Castleman's disease, Dr. Fajgenbaum decides to ramp up the size of the Castleman Disease Network Collaboration to include international patients and researchers for the study of the cause and treatment of Castleman's disease. Along with combining forces with a pharmaceutical company, Dr. Fajgenbaum truly gets to see some progress in ruling out causes of the disease while also coming up with diagnostic criteria to assist doctors with diagnosing the disease.
Although he had yet to see his organization for Castleman's disease determine a cause for Castleman's disease, he learned through his own multiple treatment options what worked for him and what did not. Along the way, Dr. Fajgenbaum met other patients with Castleman's disease and was able to acquire access to the lymph node specimens and labs for those patients to keep in a database and utilize in future research to assist in understanding and treating the disease.
To me, Castleman's disease sounded a lot like the lymphoma from which I lost my dad. I remembered the multiple chemo drugs utilized in my dad's treatment along with a stem cell transplant and monoclonal antibody treatment. Both diseases will humble a patient in the blink of an eye because when the patient relapses, the treatments can take you almost to the brink of death. In my father's case, he fought a rare lymphoma for twelve years before finally developing bacterial pneumonia during his last form of treatment which led to subsequent heart and lung failure. Like Dr. Fajgenbaurm, my dad had a whole new appreciation for each day of life he was given. And I was impressed at how down-to-earth Dr. Fajgenbaum was able to relay his experiences with each relapse of Castleman's disease.
Rare diseases cause you to look at life differently. My own rare disorders have given me a greater appreciation for the ability to hear, see, and be able to maintain balance physically. I knew early on in my first rare disease occurrence that I would never be a U.S. Olympic gymnist as I can rarely maintain my balance when standing with one foot raised and the other foot on the floor. And I quickly realized at age eighteen, doctors don't have all the answers and they are fallible as well. Do I think researchers could have utilized my own case for more and better research involving treatments for my rare disorders? Most definitely. The most important lessons I learned while living with rare diseases is the necessity to locate and be seen by specialists, usually at university hospitals, that have diagnosed and treated diseases like mine. And lastly, like Dr. Fajgenbaum, i became my own best healthcare advocate.
This book is insightful and well-written. I highly recommend it for Castleman's disease patients and the medical community, but I can tell you that even if you are a patient diagnosed with other forms of rare disease or not, you will learn some valuable life lessons in this book.
Till my next review.
Best,
Grace (Amy)
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