It began New Years Day of 2019, when my Mom had to have her gallbladder removed. Over the next few months, Mom lost around 70lbs and we had no answers as to why or how. Appointment after appointment, doctor after doctor, no answers. As time passes, she started getting extremely low BP and would pass out. Eventually, she started losing mobility and she just didn’t look like she felt well at all. Finally, an internist said those confusing and now dreadful words, we all know we’ll, “Amyloidosis” or “multiple myeloma.” My sister and I started researching and noted the similarities between her lambda numbers being elevated and the description of AL Amyloidosis. On July 3, 2021, she was formally diagnosed with stage 3 Amyloidosis, secondary to Multiple Myeloma: kidney, heart and gut involvement. The plan, chemotherapy and wait. After two rounds, she physically couldn’t help with her own moving, so we decided to cancel her chemo appointment. We got her to her fourth, but the doctor stated that the damage had already been done. She was weeping fluid so badly that she was now getting sores and we couldn’t keep it under control. On August 6th her doctor decided to stop all but one chemotherapy treatment, the Dara injection. We wait one month, see strength, etc… But the reality was that we were looking at “months” left with her. The weeping fluid could not be controlled, not with equipment or medications. A medication to treat that would drop her already low BP and it was just a pros and cons of EVERYTHING.
We were angry, heartbroken, but not ready to throw the towel in. At her September appointment, they stopped ALL treatment. The disease was just too aggressive and it was just too late. She began hospice and we helped her decide on some things special she wanted when she was gone. It was painful, hurtful and devastating to have to watch her cry because of pain, discomfort and the knowing that her time was short. They gave her “months, maybe weeks” and on September 21, 2021, with her twin, my dad, the four of us kids, by her side, she was greeted into heaven by my sister who passed in 2016. What a reunion that must have been. This disease is a thief. It steals time, love, a person’s ability to care for themselves, it’s victim’s health and everything you can imagine. The fact that this is so unknown is mind-blowing. Whether a disease is rare or not, education and awareness is key to save others. I hope and pray that all of us can bring light to this disease and help others get educated. My Mom’s story is one of so many. The doctors believe her disease had been going on for longer than we believed. Her first sign was probably 8 years ago, when her hands began to tingle and fall asleep. Had we known…
She’ll be missed terribly, but my sister and I will do everything we can to get better knowledge for not only ourselves, but our friends and family.
Mom’s Story – Kelsey – United States