Hinsdale, Illinois, United States
In 2015 seemingly unrelated and increasing health problems, gave me the opportunity to expand my vocabulary. Restricted jaw opening, trigger finger, shortness of breath, sternum fracture, pneumonia, low IgA, slight heart thickening were many of the issues that occurred. I believe that only because I was lucky to have the right cardiologist that my vocabulary grew as I was introduced to the word, amyloidosis. That doctor’s inquiring mind, “Why does she have heart wall thickening with no history of hypertension?” caused him to run further tests and point to a suspected diagnosis of cardiac amyloidosis.
We were living in Kansas City at the time and I was lucky again as scouring the internet, I found both Mayo and Dr. Falk/Brigham/Boston and got in touch with both. Dr. Falk not only looked at my tests immediately, but cleared space to see me immediately. I flew to Boston, had a confirming cardiac biopsy and chose to have my first chemo (CyBorD) there before returning home to continue treatment. At diagnosis, my numbers were terrible—8000 NtProBnp, 0.19 Trop T, 180 mg/dL Kappa FLC . However, my luck continued. I responded beautifully to chemo and four weeks later, Dr. Rajkumar/Mayo, found my Kappa had dropped to 6.7 mg/dL. I completed five cycles and achieved a CHR and good organ recovery too—slow but it happened.
Have there been ups and downs, challenges and fear, frustration and anger during this journey? Absolutely! My first remission lasted under four years, the next a year, and now I’m getting monthly daratumumab. However, I’m here—I’m doing well—and I’ve had more luck than many and I have the belief that as they learn more, develop better treatments, and find patients faster, more of us will be able to live good lives and with progress, die of old age and some completely, unrelated issue.
So why am I here? In the beginning, I didn’t know there were groups or support systems. I was lucky that I found highly experienced doctors and facilities. They explained so much about the disease, taught me what to do about any side effects, and why sodium restriction was important and how to titrate my diuretics—absolutely crucial because locally treating doctors rarely understand of talk about these issues. Once I found the patient websites and support meetings they helped me in many ways and I tried to share what I was learning to help others. Not everyone is lucky enough to be able to get to experienced medical professionals. Add the struggle to find sources of accurate information and to understand them as well as tests, their results, goals, etc. and it is all overwhelming and disheartening for patients and caregivers. Having a community that shares what we have learned, brings valid and updated information along with optimism and hope to others is important and what I want to continue to be a part of in any way I can.
I was privileged to be able to speak to 2nd year medical students at Tufts University Medical School and also at a conference of cardiologists in San Francisco too. Here’s a short video of the message I felt was important for doctors to hear: https://www.oneamyloidosisvoice.com/video-visual/message-to-physicians-from-cardiac-amyloidosis-patient/