In 2012 I decided to get life insurance because I was going to have a bi-lateral knee replacement, but to my surprise, I was declined due to kidney failure they said! This had to be a mistake I thought. I was living a fairly healthy and active life with my family in Colorado. I had only been taking medication to manage the hypertension I had since I was 40.
My doctor didn't know what it could be and recommended I see a nephrologist who sent me to get a kidney biopsy. My first biopsy failed because they did not get enough or any glomeruli. The doctor punctured my kidney during my second biopsy. It caused a painful blood clot the size of a tennis ball in my bladder and required an extended stay in the hospital. The hospital didn’t know what to make of my results and had my biopsy sent to the Mayo Clinic for further analysis. After a month of waiting my nephrologist informed me that I had Amyloidosis and informed me it was rare and did not know how to assist me. He informed me he could not treat me but welcomed me to revisit him when my kidneys failed for dialysis and organ replacement.
I contacted my health insurance and asked if I could go to the Mayo Clinic for second opinion. They approved and recommended I contact a 1-800 number to the Amyloidosis Support Group for guidance. There I spoke to Muriel Finkel who suggested I seek medical advice from the Mayo Clinic asap. My husband researched the internet an insisted I not browse it myself. The information on the internet then was very limited and much of it was inaccurate. He was alarmed to discover that my future might be short and that there were no cures available.
A couple months later, I went to the Mayo Clinic in Minnesota for a battery of tests confirming the diagnosis of Amyloidosis Alect2. We were relieved to discover Alect2 is not a fast digressing illness like some of the other Amyloidosis sub-types. I am currently at stage three kidney failure. Every six months, I get a blood and urine analysis. I take frequent measurements of my blood pressure and try to manage my high blood pressure by: consuming less than 600 mg of sodium per day sometimes taking a diuretic when it’s out of control. I sometimes suffer from fatigue, nausea, diarrhea and constipation, occasional leg cramps. More recently, I suffer from cold feet and hands. Despite my diagnosis, I still lead a relatively happy life. Although I know that there is currently no cure I have a very supportive family and believe that a kidney transplant is a viable alternative.
In 2014 I became involved with the ALect2 Alliance to try to disseminate information about the disease to other patients. About every six months I attend general Amyloidosis support groups where I have received some updates on the many sub-types of Amyloidosis. ALect2 is seldom addressed at these groups because it is a rare sub-type of a rare disease.