FIRST MOMENT IN TIME

How did the Moment in Time Start?
I have always been healthy strong and positive, and aware of my body. As you all know I love to exercise which included a personal trainer 2x a week with Tim Rogers at Break Through fitness; Jazzersize, and Pilate training with Carrie Stillman. Last year in March, I went on a beautiful cruise to the Caribbean with my dear friends Gary and Debbie Looney, Scott and Linda Ford, and Bob and Cindy Keyes and Mark and I. We had a beautiful time. I was able to do many activities with no stress to my body.Until that "Moment in Time" late May 2007 .I was camping and hiking at the KOA in Cloverdale one weekend. All the girls decided to go for a long hike, I did fine until I had to walk back up a big hill. I could not make it! Realizing something was wrong, my good friend Linda came back over and said to me "What is wrong with you?" You exercise so much and you can't climb this hill.Deep in the back of my mind, I thought what could be wrong? I was exercising and eating right, why? Why was I feeling this way.So as we all tend to do I let it go until this year. My company moved into a new building and I found again I could not climb the flight of stairs. This began to bother me. I called my family Doctor, Dr. Kevin Costello at Kaiser who immediately set up an EKG, ECHO and Stress Test. I did these tests in March. I received a call a few days later from Dr. Costello who informed me that I had Restrictive Cardio Myopathy or Congested Heart Failure...I was Shocked!Dr. Costello referred me to Cardiology for further test. I met with Dr. Warren, Cardiologist at Kaiser. Dr. Warren explained that restrictive cardio myopathy is caused by certain diseases. One disease is called Amyloidosis. (Please see information at the bottom of my Blog). Dr. Warren decided I needed to have a heart biopsy and a anagram done to determine what has caused the damage to my heart. Restrictive Cardio Myopathy causes the heart walls to stiffen and not pump enough blood to the organs and cause many symptoms which I have experienced in these last seven months. They are shortness of breath, water retention, fatigue, fullness when eating due to liver being enlarged and one symptom was the red purpura on my eyes also a form of "Raccoon eyes" .Dr. Warren referred me to the Santa Clara Heart Transplant Center to be evaluated by their director, Dr. Dana Wiesshaar.As Moments in Time go, I had a very special cruise to the Spanish Isles planned for June. Dr. Warren said it was not a problem to wait on getting the Heart Biopsy and anagram done until I returned in July.Mark and I spent a beautiful weekend in half in France and Spain. I did have some difficulties and tried not to think about what was happening to my body.We returned for my first Dr. appointment with Dr. Dana Weisshaar on July 8th. She took 4 1/2 hours explaining what was happening to my heart and what could cause it. The only way to be sure was the Heart Biopsy. On July 16th I had a heart biospy and angiogram. One week later I received the results which was that Amyloidosis was damaging my heart and that I would need a Heart Transplant.This is where the Moments in Time began to feel like a roller coaster ride with many ups and downs.When a patient is diagnosed with this very rare disease the Mayo Clinic in Rochester Minn handles the treatment. I was referred to the Mayo Clinic and put through a protocol of test to determine whether I was a transplant candidate. This took the next two and a half months, these test include simple blood test draws (31 in one day), bone marrow biopsy, rectum biopsy, chest x rays, upper GI scope, all to determine the progression of the disease.Bear in mind that the Mayo Clinic was the only hospital doing heart transplant on Amyloidosis patients. This they say can take up to one year to receive a new heart there at the Mayo Clinic. Dr. Dana Weisshaar told me I didn't have one year but only 6-9 months.So, the moment began that we needed to look at other options. As you have read the information about Amyloidosis was provided by Dr. Kevin Anderson. Kevin was diagnosed one week before me at the Mayo Clinic, they put him on the transplant list for a new heart. Dr. Brooke Edwards from the Mayo Clinic called the heart transplant team at Stanford University and told them to also put Kevin on their list. One big problem, Stanford has never done a heart transplant on an Amyloidosis patient until Kevin received his new shared heart on August 15, 2008. This moment in time opened the door for Stanford to look at me.Stanford is looking at Me!