I’m a 62-year-young retired ICU nurse with a long career in critical care and medical education, so finding out I had AL Amyloidosis was a huge shock. My reaction? “What the @#$% is that?” I already had SLE and MGUS, and I’d been on IV immunoglobulins since 2004—yet somehow, this was a new one.
My diagnosis finally came in December 2019, after two years of exhaustion, bad reflux, and odd liver and kidney test results. Despite my diligent GP sending me to a nephrologist, my wonderful immunologist and haematologist weren’t overly concerned at first. But the nephrologist quickly ordered a kidney biopsy, and things moved fast from there—diagnosis, bone marrow biopsy, and treatment. I know it’s not always that quick, but my long history in healthcare certainly helped.
So, December 2019 began my weekly regime of bortezomib/ dexamethasone, and cyclophosphamide. Let me tell you, the dex was a love-hate thing. Two days of zero sleep, followed by feeling like “Debbie Downer” on Sundays—sad movies were off-limits, or I’d be dehydrated from crying. But, I’d laugh about it by Wednesday as the cycle began again.
One of the hardest parts was when my youngest daughter moved to Sweden with her partner, just two days after my diagnosis. Thanks to COVID, it was over two years before I could see her again. The Swedish response to COVID made things even more complicated, and even government assistance couldn’t bring her back.
By April 2020, I was scheduled for a Haematopoietic Stem Cell Transplant (HSCT), but COVID had other plans. The thought of going through it during a pandemic terrified me. If I caught COVID, I knew my ICU friends might face the impossible choice of giving a bed to someone healthier. Thankfully, non-urgent transplants were postponed, and my treatment continued until October. I did think I was a little urgent though!!!!!
To prepare for the transplant, I went all-in: vegan diet, meditation, weights, no alcohol—the whole works. Now, I laugh at myself, as I’ve since returned to my old habits (with a tipple here and there!). But back then, it helped me control what I could.
The transplant itself was tough, the hardest thing I’ve ever done, but I had amazing medical support, from compassionate dedicated nurses to the lovely allied health team. Three weeks and more than aa few kilos lighter, I finally started the recovery journey. Thanks to my incredible family, friends, and trainers at the Kaden Centre https://kadencentre.org.au/ I slowly regained my strength, complete with jokes about my “supermodel” figure and Kojak hair regrowth.
Today, four years on and still on maintenance Lenalidomide, I’ve built my strength back up. I’m back to traveling, having sailed the Pacific and Thailand on a catamaran and spent nearly two months with my daughter in Sweden and explored Europe. I watched my eldest daughter marry and welcome our first grandchild. Modern medicine has let me truly live again, and though some days the fatigue still gets me, I’m deeply grateful. My friends say I always find the silver lining—some days it’s easier than others, but every night, I end the day with five things I’m thankful for. Life’s too good not to.
In September this year Cathy was appointed to replace Pat Neely on the AAN Board, with responsibilities to advocate on behalf of patients and families. Link to governance page.
To get to know Australian amyloidosis patients and families and listen to how the AAN can best support patients with all types of amyloidosis Cath will be running a monthly virtual support meeting. “A Cuppa With Cath”
The first meeting will take place on Monday December 2. Go to the events section on the AAN web site to learn more about these meetings and times.
For more information about this patient’s experience you can send them an e-mail using the form below.
