NGF Mentor: Carol Fink

Carol Fink
California
Adult with Gaucher
Email: skyemum@comcast.net

I was born in suburban Cleveland, Ohio 64 yrs ago, spent a childhood marked by being small, weak, often at home with infections, then needing a blood transfusion and tonsillectomy at age 13.

That necessitated my being referred to a hematologist and after much blood work, which I hated, no conclusions were drawn. The next few years, I needed Vitamin K and IV blood clotting medication, prior to having some teeth pulled.

I graduated from Boston University with a nursing degree and was probably drawn to medicine as I had much personal experience. I moved to S.F. in 1965 and became a family therapy RN, as I realized that family support was crucial to healing. In 1969 I joined San Francisco General Hospital, where I spent 27 fascinating and challenging years helping patients and families navigate the world of Critical Care. I helped families make decisions about end of life care, organ donation and assisted with grief support, especially with those who suffered serious and fatal burns.

In the mid 70s I was finally diagnosed, with Gaucher Disease, after having some blood work for wisdom tooth extractions. The hematologist called; obviously surprised at his findings relative to a bone marrow test I was given. He asked about my, Jewish ancestry and history and began to piece together the puzzle that had alluded diagnosis. Both of m y parents were of Ashkenazi Jewish descent and I displayed many symptoms of Gaucher Disease.

After diagnosis, my guilt-ridden mother found a small article written by Rubin Bakin, founder of the NGF and Gaucher Community News and he and I became fast phone friends. An ad in, I believe, Hadassah magazine led me to him, and a world of support and reassurance.

In 1980, after feeling weak, anemic, tired, I developed gallstones, and was urged to have both my spleen and gall bladder removed together. Amazingly, I felt much better with the anemia and platelets now under control. However, an orthopedist's friend had treated Gaucher Disease patients in Montreal and had me speak with Dr. Henry Mankin, who felt I should start on the newly approved drug, Ceredase. I had X-rays of hips that were fine, but one morning developed dull pain in my hips, so I had an MRI which showed Gaucher Disease in both hips. The next day, about 17 years ago, I day, I began therapy with Ceradase, and within 4 treatments, I felt more energized, less chronically ill and had no hip pain.

I continued my busy career, with less sick time and was able to resume my previous duties as a nurse. However, in 1997 fatigue recurred and I retired to the heavenly Napa Valley of California. Soon I was diagnosed with pleural TB. Medication worked and I enjoyed life until 2000 when I was diagnosed with Non-Hodgkin's Lymphoma. Dr.Robin Ely helped me tremendously, to cope with chemo and immunity-building and thanks to Genentech and chemotherapy; I have been cancer-free since 2001.

For my 60th birthday I had an acute heart problem, and needed 5 stints placed in coronary vessels, which worked very well. Heart disease and asthma have been much more of a problem, as enzyme therapy has maintained my Gauchers so well. My trauma work, and my own scary health issues, have left me treasuring each day and little things like walks with my dog, lunch with friends or talking with on old friend. I so look forward to being available, thru the Gaucher Mentor Program, so that I can help make the challenge of a Gaucher diagnosis less frightening and unknown and hopefully, give back a bit of what I have received through support and education, from the National Gaucher Foundation and Genzyme Therapeutics support staff.