[Nfbf-l] most recent update on Jim
JamesPJ at aol.com
JamesPJ at aol.com
Fri Dec 13 17:08:17 UTC 2013
Wonderful news about Jim. GOD IS ABLE!
James
In a message dated 12/12/2013 6:39:26 P.M. Central Standard Time,
flmom2006 at gmail.com writes:
Wow, keep those prayers going Jim's way! He's got a long but positive road
ahead!
Written 59 minutes ago
Good afternoon, Yesterday, we attended a pre-transplant class for patients
that were held in the BMT unit at Moffitt hospital. The transplant
coordinator sent us a patient/caregiver guide the day before the class. I
was very appreciative and impressed because the PDF was accessible; and, I
had no problems reading it with my screen reader. The same can be said for
the subsequent PDF and handouts that are formatted in Microsoft word. The
coordinator, the BMT transition nurse and the education department have
been
very accommodating with providing us the materials in an accessible
format.
They setup a private class for us so that we would have more time to go
over
the details while running the slide presentation. Aside from this class,
there is a class for caregivers that I am going to attend even though I am
not going to be one of the caregivers during the transitional stage of the
post-transplant. One of the requirements of the caregiver is that they
must
be able to drive. However, I want to continue to be as involved as much as
I
can and know what is going on. I've already read all of the material that
was sent to us. Let's just say that we have a long road ahead of us. As I
may have mentioned before, he will have testing performed of his vital
organs in January. This takes about three days. The donor will also be
going
through their physical and testing at the same time. Then, in February, he
will go into the hospital where he will undergo a very intensive
chemotherapy; much more intensive than what he's undergone thus far. This
is
called induction therapy. During that time, the donor will be going
through
production and harvesting process of stem cells which will be from
peripheral blood; not the bone marrow. Once enough stem cells have been
collected, they will immediately fly the cells to the hospital and be
delivered to his bedside. I found it interesting that they will not be
frozen as this is an allogeneic stem cell transplant. He will then receive
his stem cells. Then, it will take about two weeks for the cells to
engraft.
He will spend around six weeks in the hospital for the transplant.
Afterwards, he will move into temporary housing near the hospital where he
and the caregiver will reside for two months. He will then be able to come
back home after the transplant doctor says it is okay. He will have to
wear
a mask whenever he goes out in public until his immune system is able to
fight off germs. Of course, he will still be on a plethora of medications
for some time after the transplant; and, there are very strict guidelines
with regards to his diet after his transplant as he will be
immunosuppressed. Much of those restrictions will be lifted when the
primary
transplant doctor gives the okay. We also found out that Jim will have to
receive all of his childhood vaccines again after the transplant. They
will
be given to him over the course of a year. He will also have to wear
sunscreen (SPF 30 or higher), especially on areas that will be exposed to
the sun, for the rest of his life. One hundred days out post-transplant,
he
will have to be monitored for signs of acute graft versus host disease
(GVHD). They are prepared with medications to handle this in the event
this
occurs. Beyond that, we will have to be aware of signs of chronic GVHD;
which can come and go throughout the rest of his life. Again, there are
meds
that can help deal with the flare ups. A mild case of gVHD after the
transplant is a good thing, according to the transplant doctor and
transition nurse. It means that the donor cells are engrafting and
working.
While the next upcoming months will be arduous, stressful and perhaps
sometimes scary, Jim is very positive about moving forward and getting
this
done. I told him that there are some who believe that getting the
transplant
as a time of rebirth. Therefore, each year, I think we should celebrate
both
of his birthdays; his biological birthday and his transplant day. The
transition nurse told us that the day he receives his stem cells, it is
marked as day 0. This transplant will have a profound impact on our lives;
and I want to be there, if at all possible, when he receives his cells. I
know that the process itself will be just like when he gets a blood
transfusion; however, it will be an extra special time because of the gift
he is receiving from an anonymous donor. A year after the transplant, I
believe we will be allowed to know who the donor is if the donor is okay
with it. On Monday, the 16TH, Jim will go back to the hospital for the
last
Hyper-CVAD treatment. As I always do, I am praying that it will go
smoothly
and he will not have to spend extra days there because it makes him so
miserable. All-in-all, he has been sleeping a great deal this week. His
weight is down to 118 even though he's ramped up his eating. I heard our
medical insurance nurse talking to him on the phone today about drinking
insure. He flat out told her that he hates the stuff and he will not drink
it. We are going to try and find some protein powder that I can put in his
milk shakes that I make for him almost every night. It consists of
Neapolitan ice-cream, bananas and peanut butter. He loves, loves them.
Anyway, this post has taken me an incredible length of time to write due
to
all of the interruptions. Thus, I shall bring this to a close because I
keep
getting phone calls which are interrupting my train of thought. Have a
good
evening all. Kim
Sherri
Character is the side of yourself you choose to show the world.
Integrity is what you do, what you say and how you act when you think no
one
is paying attention.
Sherri Brun
NFBF Newsline Chair
flmom2006 at gmail.com
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