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 angogram. 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!
Friday, October 3, 2008
Matthew
Matthew is living in Orange County working as an administrative medical assistant for a othropedic doctor. He is currently enrolled and will graduate in December to become a radiology technician. Matt enjoys and has lots of friends like laura above who he has lived with for several years. Matt and his close friend Mark, Eian, Laura and baby puppy Cassie all live together now.Mark and I had a wonderful weekend a few months ago with them. I spent all weekend cooking Matt's favorite foods. I miss cooking for him. We talk everyday and I love him so much. I'm especially proud of the way he lives his life and that he has become a self-sufficient individual.
First Moment
A moment of time. What is it? I never thought in my wildest dreams that I would worry about a "moment in time" Until now!
As all my friends and family know I have been diagnosed with a rare bone marrow disease called Amyloidosis. It is a very rare disease that effects 1 in 8 million people and can be fatal. for more info about Amyliodosis please see my good friend Dr. Kevin Anderson's post at www.kevinandbarbie.com I have included on my blog.
As all my friends and family know I have been diagnosed with a rare bone marrow disease called Amyloidosis. It is a very rare disease that effects 1 in 8 million people and can be fatal. for more info about Amyliodosis please see my good friend Dr. Kevin Anderson's post at www.kevinandbarbie.com I have included on my blog.
Maxwell
Maxwell is playing ice hockey in Innisfil Canada for the Innisfil lakers. He lives with his second family Shane Hicke. Maxwell has been playing Tier and Junior Level hockey for many years. His teams have won many state and regional championships. Max will be 18 in March and is a senior in high schoool. I love him so much and miss having him near me. Mark and I understand this is for his future and the future does look very promising. I hold many thanks to the Hicke family for taking my young son at the age of 13 to live with them. They have loved and guided him through his young adult life. I will always be grateful!
Amyloidosis
The following information about the disease, Amyloidosis is provided by my good friend
Dr. Kevin Anderson from Lincoln CA who was diagnosed with the same disease 1 week before me in July 2008.
I feel the explanation Kevin gives here will help you understand what the disease is about and the treatment the both of us will have to endure for example Chemo.
Amyloidosis
I have found a way to get Internet access in my room. I feel like I can step outside now, at least into the virtual world. I am feeling well. The medication, dopamine, has really improved my heart function. The loss of of that extra fluid has greatly improved my lungs and my abdominal organs. I actually feel quite normal. Many of the symptoms that concerned me as possibly secondary to amyloidosis were actually due to fluid retention.Amyloidosis is a strange disease. It begins in plasma cells. They originate in the bone marrow and circulate through the body. They sense foreign proteins, (such as viruses and bacteria) and produce specific antibodies to fight off infection. Amyloidosis begins when a renegade plasma cell begins producing a faulty antibody protein that does not break down. I guess you could call these cells 'crazy' as it is referred to as a plasma-cell dyscrasia. It is not a cancer because the abnormality is not in the 'immortality" of the cell but rather the cell product. These proteins don't form or fold correctly and pile up in the body. They then get stuck in tissues in various locations; in my case the heart muscle.This makes my heart muscle stiff and the heart then cannot relax well in between beats. The end result is that there is little time to fill up the heart ventricles so less blood is pumped per beat. What I feel is that any attempt to do any activity requiring greater blood flow is met with an immediate sensation of no energy. It feels like the battery died. Running, walking up stairs, bending over to pick something up all result in immediate fatigue and dizziness. The technical term for this is restrictive cardiomyopathy. My heart pumps about half of the volume that it should in one minute.Amyloid can go all over the body and effect the gut, liver, kidneys, salivary glands, lungs etc... I had an extensive work-up at the Mayo Clinic and it appears that while other organs are involved, the most significant is my heart. Normally amyloid patients are not treated with heart transplants because they are either too sick with multiple organ involvement or there is a concern that the new heart will fail if the amyloid continues unchecked. The Mayo Clinic is one of the few places willing to combine heart transplant with amyloidosis treatment such as a bone marrow transplant.However, because I am relatively healthy, and my other organs are not significantly involved, Stanford has agreed to accept me to their transplant list. I will be only the 2nd transplant at Stanford with amyloidodsis and the 1st with AL Amyloidosis.Once I have a new heart, then I can receive treatment for the amyloidosis. Since this is a rare presentation of a rare disease there is no absolute right protocol for me. As it stands now, I will either get chemotherapy with Melphalan, Steroids and Revlamid or a stem cell tranplant. They will follow a relatively new blood marker (Kappa light chain levels) to ascertain my clinical response.I thought this brief summary of my condition might be helpful to some of those following my progress.
Dr. Kevin Anderson from Lincoln CA who was diagnosed with the same disease 1 week before me in July 2008.
I feel the explanation Kevin gives here will help you understand what the disease is about and the treatment the both of us will have to endure for example Chemo.
Amyloidosis
I have found a way to get Internet access in my room. I feel like I can step outside now, at least into the virtual world. I am feeling well. The medication, dopamine, has really improved my heart function. The loss of of that extra fluid has greatly improved my lungs and my abdominal organs. I actually feel quite normal. Many of the symptoms that concerned me as possibly secondary to amyloidosis were actually due to fluid retention.Amyloidosis is a strange disease. It begins in plasma cells. They originate in the bone marrow and circulate through the body. They sense foreign proteins, (such as viruses and bacteria) and produce specific antibodies to fight off infection. Amyloidosis begins when a renegade plasma cell begins producing a faulty antibody protein that does not break down. I guess you could call these cells 'crazy' as it is referred to as a plasma-cell dyscrasia. It is not a cancer because the abnormality is not in the 'immortality" of the cell but rather the cell product. These proteins don't form or fold correctly and pile up in the body. They then get stuck in tissues in various locations; in my case the heart muscle.This makes my heart muscle stiff and the heart then cannot relax well in between beats. The end result is that there is little time to fill up the heart ventricles so less blood is pumped per beat. What I feel is that any attempt to do any activity requiring greater blood flow is met with an immediate sensation of no energy. It feels like the battery died. Running, walking up stairs, bending over to pick something up all result in immediate fatigue and dizziness. The technical term for this is restrictive cardiomyopathy. My heart pumps about half of the volume that it should in one minute.Amyloid can go all over the body and effect the gut, liver, kidneys, salivary glands, lungs etc... I had an extensive work-up at the Mayo Clinic and it appears that while other organs are involved, the most significant is my heart. Normally amyloid patients are not treated with heart transplants because they are either too sick with multiple organ involvement or there is a concern that the new heart will fail if the amyloid continues unchecked. The Mayo Clinic is one of the few places willing to combine heart transplant with amyloidosis treatment such as a bone marrow transplant.However, because I am relatively healthy, and my other organs are not significantly involved, Stanford has agreed to accept me to their transplant list. I will be only the 2nd transplant at Stanford with amyloidodsis and the 1st with AL Amyloidosis.Once I have a new heart, then I can receive treatment for the amyloidosis. Since this is a rare presentation of a rare disease there is no absolute right protocol for me. As it stands now, I will either get chemotherapy with Melphalan, Steroids and Revlamid or a stem cell tranplant. They will follow a relatively new blood marker (Kappa light chain levels) to ascertain my clinical response.I thought this brief summary of my condition might be helpful to some of those following my progress.
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