My AL Saga

In 2003 at age 51, my ECG showed enough of a change to indicate having a stress/echo exercise test. During the course of the test, my ECG became very abnormal, with deeply inverted T-waves. The cardiologist diagnosed restrictive cardiomyopathy. He was very perplexed about why a 51 year old female would develop this. What he did not consider was amyloidosis.

By 2004 I became progressively weaker and had lost my appetite. It took some physician shopping to find one who took this with much seriousness. Finally, a urine dip was “off the charts”, which was followed by a 24 hour urine sampling. The next step was a kidney biopsy which showed the amyloidosis, which of course I had never heard of, and was also clearly the cause of my mysterious restrictive cardiomyopathy.

This diagnosis was also checked by having a bone biopsy, and in 2005 I began taking an oral regimen of Dexamethasone and Thalidomide. This treatment was new at that time. I got the steroid “apple face” and was even more tired feeling, but I managed to get into a routine. I was able to return to my job part time.

I took those two drugs faithfully for 6 whole years. Finally, my wonderful hematologist declared me in remission in 2011.

I began a routine of and ECG and echocardiogram, and blood test for kappa/lambda every six months.

When I was first diagnosed, my kidney GFR was in the 40s. Now, 20 years later it is in the high 20s. So, I’m trying to keep my diet kidney friendly. I have also developed atrial fibrillation, and take amiodarone to keep me from going into rapid A Fib.
Early in this medical saga, I didn’t think I’d see age 60. I’m 73 now, and have gotten to see all those milestones that we all treasure. Just don’t ask me to walk up a steep hill with any speed!

I would think that with all the medical advances in the past 20 years, there will be many more success stories like mine. Do your best, and keep the faith.

Susan MacMillan