DATE DIAGNOSED: 5/1994
TYPE OF AMYLOIDOSIS: Primary
WHERE TREATED: BUMC
Lou began getting sick and loosing weight in October
of 1993. After seeing several doctors, and not getting
any answers, we finally found a doctor that thought Lou
might have amyloidosis. Our Oncologists followed
textbook protocol and advised us that there was nothing
they could do. Treatment included prednisone and
melphalan. Lou was given a matter of months to live.
My mother asked her church in Washington State to
pray for us, and her friend, a nurse, approached her
after service and informed her that she had just lost a
friend to Amyloid. The nurse advised mother to have us
contact a fellow named Jim Lang in Texas. She knew that
Jim had begun a support group, and had information that
might be beneficial to us. We called Jim, and were
advised to contact Martha Skinner at BUMC, which we did.
Dr. Skinner however was not sure Lou had Amyloid as we
had yet to get a positive biopsy. I transformed from a
shy soft-spoken farm girl to a desperate raging New
Yorker, and insisted that Dr. Skinner look at the lab
reports - insisting that she had the equipment to make
the diagnosis. She agreed.
We traveled to BU in June of 1994. Lou who was a
healthy 6 ft, 175 pound, physically fit fellow had
dwindled to 140 pounds. He had not eaten for months and
survived on a feeding tube. We were desperate at this
point. But as fate should have it, we met 8 doctors and
a squad a nurses, followed by several teams of students,
and the hospital support staff including a social worker
and a priest - all of which wanted desperately to
perform a Stem Cell Rescue (as they then called it).
Lou's tests also showed Multiple Myeloma, and STC had
been approved and successful for MM patients, so we
moved forward through the insurance maze and
miraculously got approval for the procedure.
The big day was in the beginning July of 1994. The
STC went well, and we waited patiently in a reverse
pressure isolation room, which required everyone to
scrub and dress before entering. The weeks past as
trails of students and doctors and nurses came and went.
Questions produced more questions, and answers came as
we all watched and wondered what would happen. Slowly
improvements began to show, and the level of excitement
shy rocketed by the day. Soon Lou was sitting up, then
walking, and then gained release from the isolation
room. Everything went well - to everyone’s surprise. He
was soon released from the hospital, and we traveled
home from Boston to New Jersey. The STC was considered a
stepping-stone to a bone marrow transplant.
Unfortunately, the following day Lou ended up in the
hospital in NJ where the doctors treated him as if he
was going to die. They put him back on the painkiller
that we had weaned him off of, and put him back on anti
depressants. They refused physical therapy. So, I called
Dr. Comenzo, and asked him to have a chat with the
doctors in NJ. He did, and their philosophy of treatment
changed dramatically. Although Lou got a bit worse
before he got better, (he dropped to 123 pounds) he
slowly showed signs of improvement, and was eventually
released. We met J. Helwig as we left the hospital.
Lou's recovery was slow and seemed to go in a mirror
image of how it came. The first things that showed were
the last to go. He had a sudden pain followed by an
emergency Gall Bladder removal in January of 1995. From
then on, and to everyone’s amazement, he continually
improved from that day on. His only remaining sign of
being ill is neuropathy in his toes.
We are scheduled for his 12-year check-up on May 8th
2006 - one day before our 25th wedding anniversary, and
2 days before our youngest's 17th birthday. Miracles do
happen.
Linda and Lou Catania :)