My Amyloidosis Journey

Who would have known my journey would involve dealing with amyloidosis? I know I didn’t—that was not on the bingo card I would have chosen for myself, especially at the age of 47. In life, we often feel least susceptible to what can happen to us. As I was living my normal life, I began experiencing some health challenges starting in December 2023.

I had an echocardiogram and was told that, if I recall correctly, I had HFpEF. At the time, I didn’t think much of it or take the initiative to research it or ask my sister what it meant. When 2024 came around, I had an appointment with a hypertension specialist—something I had never heard of before and didn’t even realize existed.

Although I may have had amyloidosis for some time, I never considered it, even with the sudden changes in my heart and other conditions. Around July 2024, I got sick but assumed it was just a cold that wouldn’t go away. As the months passed, I decided to schedule an appointment with a primary care physician (PCP). My visit was on September 24, 2024, and she referred me to a nephrologist; however, I never made that appointment.

In the early hours of September 25, 2024, I woke up with severe pain in my lower right back. I got up to use the bathroom, thinking I needed to urinate, but when I tried to go back to bed, the pain was unbearable. I decided to go to the emergency room, not knowing what was happening—only that I was in tremendous pain.

After some time, a nurse returned to evaluate me. Within about 15 minutes, I regurgitated bile. Soon after, I was admitted to a room, and a kidney biopsy was performed. About a week later, I followed up with my PCP for the results. It was confirmed that I had AL amyloidosis—a group of diseases where abnormal protein deposits, called amyloid, build up in organs and tissues, disrupting their normal function. Through my own research, I learned more about this rare blood disorder.

My PCP quickly referred me to a hematologist so I could begin treatment. He recommended a bone marrow biopsy to confirm the diagnosis. During this process, I was admitted to the hospital for several days due to edema in my lower extremities—my legs, ankles, and feet—which is a side effect of amyloidosis.

After being discharged, I had a follow-up appointment with my hematologist on October 8, 2024. I was told that the amyloidosis had affected my kidneys, gastrointestinal (GI) tract, and heart, leading to chronic kidney disease and congestive heart failure. Hearing this news was devastating. My mind filled with fear, and the moment was deeply emotional. My sister tried to stay strong, but when she broke down, I did as well.

Later, I had an endoscopy to examine my GI tract, which confirmed the presence of amyloidosis. The doctor explained that during the procedure, simply touching my stomach caused bleeding. Following that, I had numerous appointments with nephrology and began combination therapy, which included chemotherapy.

At first, the treatment seemed manageable, with no side effects. However, over time, I began experiencing nausea, hair loss, and inconsistent bowel habits—alternating between constipation and diarrhea. It was exhausting, constantly taking medication to manage symptoms and hoping my body would stabilize.

During this time, I was unable to work and struggled to stay active due to low energy. Frequent visits to the emergency room and hospital admissions made life feel like a never-ending roller coaster. I also developed insomnia, and to this day, I continue to struggle with sleep deprivation.

After continued monitoring, my hematologist suggested a stem cell transplant. While not a cure, it could help manage the disease and extend my life. My sister and I began researching, and I was referred to a well-known amyloidosis specialist in Chicago.

My first appointment was on February 6, 2025. Living in Springfield, Illinois, meant traveling about three hours to Chicago. The specialist determined that I was a good candidate for a stem cell transplant, also known as a bone marrow transplant—a procedure that replaces diseased blood-forming cells with healthy ones.

Since that first visit, I’ve undergone various tests, including breathing treatments and lab work. While preparing for the transplant, I developed pneumonia and the flu, which was expected due to my compromised immune system. After multiple visits to urgent care and the emergency room, I recovered within about three weeks.

My specialist advised that my last combination therapy session would be on March 7, 2025, so I could prepare for stem cell collection in Chicago. I was told I would need at least 20 million cells for the transplant. To help achieve this, I had to give myself injections to stimulate stem cell production.

Before traveling, I met with my hematologist to update him on the plan. He explained that after the transplant, I would need to keep my distance from others due to my weakened immune system. Once stabilized, I would continue maintenance combination therapy to help control the disease.

I received my stem cell transplant about a week after my birthday, on May 14. Since then, I have maintained my distance from others and made several follow-up visits to Chicago to see my transplant specialist. I resumed combination therapy on October 31, 2025, with treatments every three weeks, along with continued follow-ups.

So far, this is my journey with amyloidosis.