I am a 47-year-old daughter, wife (proudly of 20 years), mother and friend. At the end of 2017, I was having what I thought was an asthmatic flare up and couldn’t sleep at night without a constant cough. When this continued during the daytime and many attempts of medicines and breathing treatments, I just knew something else was going on. I firmly believe we know our bodies and when something doesn’t feel right or seem right – then advocate for yourself and push doctors to find out what it is. I visited my PCP once again and demanded that more thorough testing to be performed. My blood test for my BNP came back elevated and seeing the excessive weight gain over the past few months coupled with severe swelling in my legs; he immediately referred me to a cardiologist. Normal cardiologist tests were performed; EKG, Echocardiograms, Holter monitors, Cardiac MRI’s and finally a referral to Duke Hospital for a bone marrow and cardiac biopsies. I owe my life to this cardiologist. For his determination to find answers and thinking outside the box, meant the difference in my outcome.
We finally had a confirmed AL amyloidosis with cardiac involvement diagnosis. From the PCP referral to confirmation of amyloidosis, it was about four months! Knowing what I know now, most people go longer, even years before given a proper diagnosis. I am blessed.
During those four months of appointments and testing I was blessed with an acquaintance. She was a nurse who had, not only heard of amyloidosis, but had worked with a group of doctors nearby who had treated amyloidosis patients. Another win! By the time we had a treatment plan from Duke, I had an appointment with this group of doctors and immediately began treatments. I completed six months of weekly CyBorD, followed by a stem cell harvest. After a two month break to regain strength and harvestation, my light chains began rising so I started Velcade maintenance. I completed this in eight months and am now taking yet another break. Recently, I visited Boston University Hospital for a second opinion, discussion of possible heart transplantation, and update on amyloidosis production. Good news given once again; no need for maintenance until light chains begin to rise, no need for discussion of heart transplant evaluation (maybe not for a few more years), and zero percent amyloid present in bone marrow biopsy. I feel stronger and better every day. I feel blessed yet again!
I am thankful for this journey. I know some may find it odd to say that, but I am. When we were first given the word amyloidosis as a diagnosis, we were also given the statistics and outcomes along with it. I remember our cardiologist praying with us in the room after giving us the news and apologizing the outcome wasn’t better than having amyloidosis. I remember telling him the same thing I told my children when explaining it to them – “this may not be the thing that takes my life. I (we) would face it head on, God will give us strength, and I WILL find the reason He has me on this journey”. I have learned, although hard and easier said than done, that amyloidosis WILL NOT consume me. It will definitely be a journey, but will not take control over every moment of every day. I have gone from working 40+ hours a week in a career I had for over 20 years to now being home and re-evaluating my life. What now? I continue to get stronger and better every day. Right now I am enjoying life a little more, love a little harder, smile a little sweeter – maybe that was the purpose. I will not stop sharing with others that each and every day is a blessing.