Amyloidosis “Rock Star”
Ralph Payne
Written by Debra Payne, Wife and Caregiver
Valentine’s Day 2013, we received a call from my husband’s nephrologist. A week earlier we had no idea what a nephrologist was. And doctors don’t typically call with biopsy results the next day. Something wasn’t right.
It began when our new family doctor ran a comprehensive series of tests on all his new patients. My husband turned out to have an extremely high protein count in his urine. We were referred to a nephrologist to discover why, not for a minute imagining anything seriously wrong with him.
The nephrologist was also at a loss to explain the dramatically climbing protein count and planned a kidney biopsy the day before Valentine’s Day. Valentine’s Day, we got the call. My husband had been diagnosed with an extremely rare blood disorder called amyloidosis, AL amyloidosis in particular. The doctor wanted to send samples to Mayo Clinic for verification and referred us for immediate treatment to a local oncologist at Rocky Mountain Cancer Center in Longmont, Colorado.
In shock, we tried to learn everything we could about amyloidosis. One of the first things we read was that patients had a 12 to 15-month survival rate. That was devastating. We learned as much as we could about the process in as simple terms as we could understand and explain to family and friends: the body spontaneously producing a folded protein that clogs the organs reducing their ability to function. The organ most impacted in my husband were his kidneys.
The oncologist advised us not to read anything on the internet relating to amyloidosis unless it was from Mayo Clinic or another reliable cancer site. He explained treatment: low dose chemotherapy to disrupt the production of the folded proteins and an autologous stem cell transplant at Presbyterian Saint Luke’s in Denver, Colorado, to hopefully reset the body’s protein producing systems. The entire treatment seemed unimaginably frightening to us. We could only focus on baby steps.
We went through 11 weeks of low dose chemo while my husband continued to work a full-time job. I found a job with medical insurance in case my husband became permanently disabled. He went through hospital pre-testing to make sure his heart would hold up under the high dose chemo; surgical insertion of a tunneled catheter for the injection of chemo, the removal and reinsertion of stem cells, and medications; going on short term disability for 2 doses of high dose chemo, a month-long hospital stay and, because of his amazing results, only another month of recuperation at home.
The scope of concerns was unending. We worried about insurance and paychecks and prescription costs. We worried about disability and qualifying for experimental studies. We worried about doctors and their success rates with this disease and survival of the treatment and side effects. We worried about bills, medical-caused bankruptcy, and charges for required tests not covered by insurance. We worried about jobs and taking time off and driving back and forth to hospitals while maintaining a household. And overall the most pressing concern: we worried about whether he was going to survive this illness and the treatment.
The blur of hospital tests, treatments, and frantic phone calls are as raw today as five years ago. But the doctors refer to my husband as a “rock star”, saying he didn’t read how this illness was supposed to go and just made his own recovery back to good health. His protein count went from uncountable at one point to well within normal range, kidney function returned to normal range, and no sign of amyloidosis today.
Update: June, 2024
2013 will always remain a significant year in our lives, as the year our world turned upside down and Ralph was diagnosed with amyloidosis, the name of a disease we had never heard of.
2024 is the year Ralph’s oncologist told him he didn’t want to see him again. No more annual visits unless his annual visits to the nephrologist turn up any issues. Ralph said he didn’t want to see him anymore, either. I think they officially broke up.
Back in 2013, after three months of low dose chemo, his stem cell transplant, high dose chemotherapy and month-long hospital stay, Ralph spent another month recovering at home before returning back to work full time. He required no additional treatments and no additional medications, just monitoring at gradually longer interludes. His doctors said he was a rock star, and he didn’t read the book on how this disease was supposed to go. They asked him to talk to other stem cell transplant and amyloidosis patients to let them see that they could move past this devastating diagnosis and treatment, as a beacon of hope in what is a very dark time for families affected by this disease.
While spending a month in the restrictive bone marrow transplant ward, Ralph made it a daily ritual to walk two miles around the ward every day without fail. When he was so tired he could barely move, he walked. When his mind was too numbed to count the laps around the hall, he got a clicker counter to track his walks. He was told that moving his body would help him heal and if he didn't walk, they would bring an exercise bike into the room. So he walked and walked, using his clicker to log two miles a day. He says in his mind, he was walking home.
When he talks to other people dealing with this disease or this kind of treatment, Ralph likes to stress the importance of faith, of believing in and relying on a higher power and a purpose for this experience. He believes in the power of the mind, having surrounded himself with positive music and thoughts during his recovery. He stresses the importance of the caretakers, leaning on those close to you during those times you are overwhelmed and physically drained. He decided that he had a choice in how this would impact his life, and his choice was to live and be strong and happy, to survive long after this experience was just a memory.
It was never easy. We walked in fear constantly; fear of financial implications, fear of painful procedures, fear of unknown medical results, fear of lifelong complications, fear of death. Gradually, we set aside the fear and moved into gratitude – one more day, one more week, one more month, one more year with no signs of the disease. Eleven years later, we still live in gratitude.