I live in Toronto, Ontario and have AL amyloidosis with multiple organ involvement.
I am currently in a clinical trial and I’m happy to say that I’m doing well. I am one of only 260 people worldwide receiving this treatment; which I believe has given me my life back. I want my story to bring some much needed awareness to this horrible disease, and hope to those who are newly diagnosed.
My symptoms presented themselves over time and in strange ways. I’m not even really sure when it all started. It’s a slow, progressing disease and it can take years before any symptoms show. I began noticing symptoms in 2014, tingling in my hands, changes in my migraines (they became more frequent), and a general feeling of fatigue and being unwell. I had recurrent UTI’s and a two week long bout of what they thought was stomach flu.
I went to see my doctor but my blood work came back normal. The only thing they found was during an ultrasound, when they noted that my liver was enlarged. After more blood work for liver related problems they found the results came back normal. I made some lifestyle changes and went on a new medication for my migraines. My doctor tried to convince me that my symptoms were caused by anxiety, and that I should try going on anti-depressants. I felt like I was going crazy; that no one believed that I was sick – but I knew that something was wrong.
During the two years between these strange symptoms presenting themselves and my diagnosis, I was sick on and off. I was fatigued but thought I was just tired from a busy life. I had a young son and was trying for another baby. The latter proved to be very difficult and my doctor couldn’t figure out why at the time. I had four miscarriages before I finally managed to get pregnant and give birth to healthy baby boy.
My pregnancy was pretty uneventful. The only thing that showed up during my pregnancy was protein in my urine, and because there was no sign of infection they said it was “just one of those things your body does when you’re pregnant”. I know now that it was a sign of my kidneys beginning to fail.
When my son was about eight months old, I began to feel sick again and started to have swelling in my legs and feet. I went to the doctor. I continued to go back, pressing for answers. They were convinced however, that there wasn’t anything seriously wrong with me. I was not.
I’m certain I may have seemed a bit crazy at this point. I felt out of control, scared and confused. I knew something was seriously wrong but was getting no answers. I went to my doctor with a giant list of symptoms and I asked for more blood work to be done. Finally things came back with extremely abnormal results. At this point I was sent to a hematologist. There was no more denying that there wasn’t something seriously wrong. I was extremely sick. I was retaining so much fluid in my abdomen that I looked about seven months pregnant. My legs and feet were so swollen that I couldn’t walk far without extreme discomfort. Because of the accumulation of fluid around my heart placing additional pressure on my lungs, I had to sleep sitting up to breathe properly.
I was finally admitted to the hospital, and a great team of specialists (including the hematologist) took over my care. They were still unsure as to what was going on, and I had to undergo multiple tests. X-rays, MRIs, ultrasounds, a kidney biopsy, a bone marrow biopsy, and… ridiculous amounts of blood work! As these specialists ruled one thing after another out, a more serious diagnosis seemed to be looming in my future.
I remember the first time I heard one of the doctors say amyloidosis and I thought, “ what is that?” They said “it’s probably not this, we just need to rule it out”. But that was it. There I was; finally with a diagnosis. On the one hand relieved that we’d figured it out and could move forward with treatment, but on the other hand, what a frightening diagnosis this was.
I went on the internet…what a mistake! Very few stories had a happy ending. Many people did not live past a year after being diagnosed. It seemed I needed to make peace with this possibility. This meant that I had to face death and consider very seriously that this was the start of the end. I wrote letters to my husband, parents and children saying goodbye. I made scrapbooks for my boys so that they would have something tangible, just from me. I recorded myself singing their favorite lullabies. I was prepared to fight, but needed to have these things in place just in case I didn’t win.