I went for a year and a half without a diagnosis.
I'm a physician, and I had a particular set of stairs that I had to climb to get to the
operating room, and over that year and a half it became progressively difficult until one
point I got to the top and I literally almost fell down, and I thought, this is not normal.
And I'd already seen a cardiologist and she had said that I had some problems with the
right side of my heart,
Finally, when I went back, she said, "Let's do another echocardiogram." It showed more
thickening in the heart, so as soon as she saw that, and I think conferred with one of
her colleagues, and that's the first time I heard the word Amyloidosis.
There are literally dozens of kinds of Amyloidosis, but most of them are both exceedingly rare
and don't tend to cause problems. The main forms of Amyloidosis that we're focusing on
are what are called systemic Amyloidosis, meaning that it's an abnormal protein that's
circulating in the blood stream and that can then deposit in one or more organs in the
body.
This particular protein becomes more sticky to other proteins that are alike and they
stick together and float though your blood and this kind of gets stuck in stuff. It's
like sticking peanut butter inside, the mesh of your heart. It just gets stiffer and stiffer
and stiffer.
Dr. Anderson, like many patients, was diagnosed when the disease was quite advanced, he had
advanced congestive heart failure, and was unlikely to live past a few months.
My heart was in really bad shape.
In the end, they determined that because the Amyloidosis was mostly in my heart and not
in other parts of my body, that I would qualify as a candidate for a heart transplant, which
was wonderful news and what I didn't know was that Dr. Witteles at Stanford was interested
in Amyloidosis.
So, we're just ready to get in the car and the phone rings, and I hear this voice, "Hi,
I'm Dr. Ronald Witteles from Stanford," I felt in that moment, incredible peace, That
he was the right person for me and he was going to, if possible, make it happen, that
I could get a heart that would save my life here at Stanford.
Once I got the heart transplant, which really was not that bad, I felt great, and recovered
pretty quickly. Dr. Witteles was ready to begin the next phase, and he had talked to
me about that fact that, Stanford was developing a multidisciplinary, program specifically
for Amyloidosis.
We have been lucky enough to put a team together with specialists from every specialty you
can imagine.
The two biggest parts of the care right now, are to try to shut off the protein production
with chemotherapy, and to treat the consequences of the organ dysfunction such as congestive
heart failure. The other part of the treatment if we're talking about AL Amyloidosis, is
bone marrow transplant.
After his bone marrow transplant, as frequently happens, he still needed chemotherapy afterwards,
and has remained on chemotherapy largely to this day. It doesn't cure the disease, but
it can manage it in a way that just wasn't possible a decade ago.
To look at him today, five years later, see him thriving, working, feeling well, and knowing
that without that therapy, he would have died years ago, is just tremendous.
Of my many goals that had after surviving this, was that I wanted to be a -- a grandfather,
and the first grandchild should be here in about two weeks. So, it's very exciting.