My experience with hATTR

The story of Len

I am Len Strickland and I was diagnosed with Hereditary Amyloidosis (ATTR) with a variant of Val122ile. There are over 100 different variants of ATTR based on culture and ethnicity. I learned of my affliction at the Mayo Clinic in Rochester, Minnesota on March 29 of 2007.

Hereditary Amyloidosis (ATTR and non-TTR) is a rare type of Amyloidosis that is caused by an abnormal (mutant) gene. Several abnormal or mutant genes can cause hereditary amyloidosis. There are other systemic types as well: AL, AA, and Wild-Type ATTR.

My symptoms began in August of 2006. They included dizziness, shortness of breath after exercising (aerobics and power walking), extreme tiredness after walking up a flight of stairs, heart palpitations and edema in my ankles, feet and calves.

Fast forward to March 4, 2008, when I was officially placed on the regional heart transplant list (a radius of 1500 miles). The categories of placement are 1A, 1B and 2 with 1A being the most severe and the top of the list. I was a 2 and told to keep my hopes at a minimum. On Tuesday evening June 10th, at a little after 10 pm, I received a call from UCSF’s Chief Cardiac Surgeon notifying me that they had a match for my new heart. Shortly after 1:45 am, Wednesday morning, my wife, Karen, and I arrived at UCSF. I was admitted for surgery immediately.

The first 6 months are the most critical, but overall I had health and activity restrictions for one year post-surgery. I am extremely fortunate and blessed for my new heart as the ultimate “gift of life” that has given me a new lease on life. Arguably, the most stimulating aspect of this journey is that Karen and I can now look forward to things we used to do together prior to this disease.

Not only am I able to spend time with my wife, I am able to spend quality time with my grandchildren. We are extremely fortunate and blessed to have been able to travel, live our lives as we do and see for ourselves the world as we have often read in books, magazines and watched on TV. We are continuing to resume our lives and travels as if nothing ever happened. I will continue to tell my story to encourage others. If I can do it through positive thoughts and determination, you can as well. Life is what you make it!