When Did My Symptoms Start?

I had to go in for my quarterly blood draw for my oncology appointment next week. I was greeted by a very pleasant and curious nursing student who under the supervision of her instructor took my vitals, accessed my port, and drew blood (very well I might add). She knew I was in for a quarterly check-up and asked how long I had been in remission, then, kind of timidly, asked me what kind of cancer I had.

Immunoglobulin Light Chain Amyloidosis, aka, Primary Amyloidosis, AL for short.

She had never heard of it before so that peaked her curiosity even more. She asked if I wouldn’t mind writing it down for her so that she could do some research on it and of course I said, ABSOLUTELY! The more medical professionals that can spot the signs and symptoms of this awful disease, the earlier people can be diagnosed.

She asked me what kind of symptoms I had that led the doctors to believe I had AL. Above is a graphic of some of the random symptoms that AL patients can experience. I had 9 of the 12 symptoms above including some additional ones not listed here because of my cardiac involvement, but because this isn’t a disease that many doctors know about, putting all the pieces of the puzzle together took almost two years for me.

My symptoms started in 2012 when my primary care physician said my blood pressure and my heart rate were too high. High blood pressure is not a symptom of AL however we didn’t know the extent of cardiac involvement at that time. I was referred to a very good cardiologist who spent 18 months trying to figure out why my heart would simply not respond to the standard treatments for an increased heart rate and high blood pressure. Echocardiograms were done as were heart catheterizations, and over the course of those 18 months many of the symptoms in the graphic above started cropping up in addition to being diagnosed with congestive heart failure, long QT syndrome, and atrial fibrillation.

The pieces of the puzzle weren’t fitting together for my local doctors so we took a chance and decided to travel to Mayo Clinic in Rochester Minnesota to see if they could help me. After only 48 hours there, the cardiologists were already talking about Amyloidosis and referring me to a hematologist who specialized in the disease. AL is caused by a bone marrow disorder that is somewhat similar to Multiple Myeloma, which is the first cousin to Leukemia.

Even having an idea of what they were looking for it wasn’t an easy road to a diagnosis. The doctors at Mayo were almost certain it was Amyloidosis, but, the standard tests weren’t giving them the results they were expecting. Fat pad biopsy revealed nothing, two bone marrow biopsies, also nothing. Multiple 24 hour urine tests also resulted in nothing conclusive. It wasn’t until they decided to biopsy my heart, the one organ that had been giving me the majority of my my problems, that they hit the mother load!

After a closer look they found that I was on the cusp of Stage 4 Primary Amyloidosis with Cardiac Involvement. I got the official diagnosis on October 28, 2014, 22 months after my first visit with my local cardiologist. From there my adventures with chemo therapy began, but I’ll leave that for another blog entry.

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