Patient Testimonials
Amyloidosis – A Personal Story from Paul Langlois
As I write this in February 2012, I am 57 years old, and have been a survivor of Primary AL Cardiac Amyloidosis for one year since diagnosis. The point of my testimonial is to offer hope, 
information, and encouragement to anyone who is faced with this disease, whether they are the patient, family member, or Caregiver. I was lucky, in that I was likely diagnosed earlier than most, which can be a real lifesaver.
I would like to give a little background about myself before I was diagnosed. I was a very healthy and fit endurance athlete (cycling, triathlon, marathon runner, oarsman), and competed in my age category my entire life, even winning several national titles. I never smoked. I always ate right. My body weight throughout adult life was the same as when I competed in college. I have no family history of heart disease. I spent over 30 years on active duty in the Coast Guard, mostly as a rescue helicopter pilot, Aero Engineer, and retired at the rank of Captain in 2006. I then resumed flying and worked for REACH Air Medical Services in Santa Rosa, California, as an Emergency Medical Services (EMS) helo pilot for five years. As an aviator, I was required to have routine annual physicals and medical checks to ensure I was healthy. I would never have believed I was soon going to be in a battle to stay alive.
In late 2009, I noticed I was having trouble climbing uphill or even keeping a moderate pace on cycling training rides with my team. But when I was at rest or at work, I exhibited no symptoms. At that time, I went to my family doctor for routine annual checks and labs, but pushed him into seeking further tests. In early 2010, I was given a cardio treadmill stress test and a pulmonary function test, with both results showing I was normal (Note: Endurance athletes may not test similar to the rest of the aging population which is typically sedentary). I had also thought I might be developing some form of asthma or allergy, since my heart and lungs were otherwise "tested" to be working normally -- 2010 was a very frustrating year, as my cycling performance deteriorated significantly, and I could not train hard enough to race anymore. Something was very wrong with me, yet my doctors told me I was in top physical condition, and I was simply “getting older”. Read more.
Amyloidosis – My Story Thus Far Kevin R. Anderson, MD
November 17, 2008
Chapter 1 - The descent into illness
People say I have led a charmed life. For the most part, that is true. Things have always worked out well for me. I do not consider my diagnosis of Amyloidosis and the resultant need for a heart transplant to have changed that view in anyway. Given the possibilities, things continue to work out as well as they could.
I was born in Glendale, CA the 4th of 9 children to wonderful parents. I was raised in Marin County, CA. I chose to be a physician when I was ten and worked toward that goal. I left for college at age 16 and graduated from BYU in 1981 with a degree in Zoology. As a Mormon, I spent two years in Buenos Aires, Argentina serving as a missionary. I married Barbie Dison in 1982 and we have 4 wonderful children, three of whom were married this year.
I finished medical school at University of California, San Diego in 1986 and went onto a residency in Urology at UC Davis in Sacramento, CA. After a fellowship in minimally invasive surgery and laparoscopy at Washington University in St Louis, MO, I joined the faculty at Yale University as an Associate Professor of Surgery and served as director of minimally invasive Urology and Chief of VA Connecticut for 11 years. Read more.
June 30, 2010
The Next Chapter
Since I last wrote on this site over a year and a half ago, much has happened. It was determined that the drug Revlimid which is used to control primary amyloidosis, may have caused me to go into heart rejection. In late December of 2008 I was started on Velcade and Decadron. This served to stabilize my light chains but not lower them. Additionally, Velcade made me feel terrible. After discussion with Dr Schrier and Dr Witteles, we decided to proceed with an autologous stem cell transplant. Dr Arai is the member of the amyloidosis group at Stanford that specializes in Bone Marrow Transplants. She had treated a number of patients with amyloidosis, but she had never treated a patient with a heart transplant. That does present some specific difficulties in that I was already immune-suppressed and the timing of stopping and starting my essential medications would be a critical factor. Read More.
Hope for the Future - My Journey with Amyloidosis, by Tony Iraci
My journey began in June 2002 when my dentist of 30 years noted significant tissue changes in and around my mouth. Both the dentist and hygienist noticed an increased thickening of tissue and an enlarged tongue since my last check-up. In fact, they had difficulty checking and cleaning my teeth during the oral exam. I was advised to see my primary care physician whom I subsequently did within days of the discovery. My doctor examined me and commented that all appeared well to him and would check it again on my next visit the following year.At my next dental exam, the dentist again commented about the additional changes of tissue and advised this needed to be thoroughly checked out, as it could be a tumor or other medical issue. By this time two years had passed with still nothing found to be wrong. However, in October 2004, with letter in hand from the dentist, I went back to my doctor where an exhaustive series of tests would begin to determine what might be causing the tissue problems.
My Ear, Nose & Throat (ENT) doctor was then called into the case for his examination and he too noted changes since the last time he examined me. From there, X-rays, brain MRIs and other related tests were taken, all which showed inconclusive results, until a tissue biopsy was taken from the inside of my mouth. The pathology report was clear; it was Primary Systemic Amyloidosis (AL). Read more.