So Very Lucky

Hello, I'm Susan and I live with my two sons, one at a university & one at a college, but both still living at home. I have been so very lucky and have so many things to be thankful for, especially my boys & my family.

Towards the end of 1998 I went to see my GP for my usual blood pressure check & at the same time she checked my cholesterol level which was found to be higher than average. My cholesterol was monitored and by January 1999 was much higher, despite my usual low fat diet. The GP, Dr. Alison Matthews, seemed determined to discover the reason why and was referred to Birmingham Heartlands Hospital for more blood tests.

During this time I was working full time & feeling extremely well & fit. I had no signs or symptoms of what was to come. During a routine examination at the hospital, a doctor discovered I had an enlarged liver and that was the beginning of 6 months of tests and more tests until August 1999 when a liver biopsy confirmed Amyloidosis. How could I possibly have a life threatening condition when I felt so well and was so active. When chemotherapy was mentioned I was utterly shocked. This really was serious! Was I going to die? I wasn't afraid of dying, I just wasn't ready to die yet; I had two lovely sons who still needed me. It was so difficult to believe because I simply did not feel ill.

I was referred to the Hammersmith/Royal Free Hospital in London (such lovely kind people) who diagnosed me with AL amyloidosis. My treatment began in October 1999 and even then I was feeling really well. The treatment was intravenous chemotherapy through a "line" in my shoulder every 3 weeks for almost 6 months. Immediately I felt very ill but not from the condition, but rather from the chemotherapy and steroids. The treatment was finished in March 2000 and I returned to work part-time in May 2000 and full-time in September 2000.

My sons were my inspiration and my sister was my rock. My kidneys are almost amyloid free now, although I still have rather a large liver and I still go for regular checks to the Royal Free and my local hospital. Other than that I have had no treatment since March 2000. I'm thinking of trying Milk Thistle (a herb), which I’m told, is really good for the liver but I must check with the expert first; Dr. Helen Lachmann at the Royal Free; she's brilliant!

Amyloidosis can be treated successfully but needs to be diagnosed early which is extremely difficult to do.
I have been so very lucky and I never allow myself to forget it.
21/Sep./2001

Email: SA-2472@MAIL.NECGROUP.CO.UK