When life decides to humble you, she’s got it down to a pretty precision science. When
you go from running most 25-year-olds into the ground and you can’t get up a flight
of stairs; I don’t do frail very well. As we got down the last several months, it became
obvious that something was cooking and Amyloidosis (with Dr. Raichlin’s training) was it. It
was fairly gradual; when it gets rocking, it rocks. It’s a very insidious disease
with no cure and no cause. It was getting down to the wire.
Fortunately, his other organs besides heart and kidney was intact or only minimally involved.
That allowed us to proceed to his decision-making regarding heart/kidney transplantation, combined
heart/kidney transplantation.
It’s the weirdest thing to hope that somebody else’s life is changed dramatically for
somebody else’s. But I’ve always been a donor; I’ve always been supportive of
it. I’m beyond grateful for the donor (for their family, for their loss) and I can’t
even begin to thank the doctors. Thank you.
I think it’s an important step because not necessarily from Amyloidosis, which is of
course a rare disease, but there are multiple patients around who have failing hearts and
failing kidneys in some combination. I doubt it will ever be a procedure that’s by any
means common. But to at least have the experience and to know that we have the ability to do
it I think is a huge step.
He was sleeping quite a bit just because he didn’t have the energy to do anything. And
then as soon as we get out of the intensive care stay, he’s walking around the entire
unit. He would not have done half of that (maybe even a quarter of it) before. The fact
that he wasn’t swaying (because you wondered if he was getting blood up to his brain).
He acted like he was stable when he was walking. It was still slower, but it’s baby steps.
You’ve got a long way to go and a wedding to get to.
It’s pretty amazing knowing I’ll get my father-daughter dance. So, pretty cool.
I agree with Kara as far as the donor; I’ll be eternally grateful to them, the entire
family for their loss and for the doctors here, for stepping outside of the box. It’s
not the normal treatment and amazing the communication between all the different departments, between
all the physicians, the staff, all for one thing, and that was to help him.
He was fortunate in the sense that his disease was limited to his heart and his kidneys and
the fact that the rest of his organs (which really allowed us to proceed and go ahead).
But it’s also what makes this so rare is the transplantation for this particular disease
with this sort of unified approach. And then when the bone marrow transplant is ultimately
completed, we’ll have cured the underline disease as well as replaced the diseased organs,
which is why his life expectancy will be normal.
It’s pretty surreal. I’ve always tried to be fairly positive and I’m not a statistician,
but the odds of pulling off what happened; they’re not even odds.