Met with Dr. Nash and
the Long-term follow-up provider at the clinic yesterday. We went over all of
my 1 year post transplant test results and also talked about the plan for the
next 6 months. As I said last time, the BMBX results were all good, my bone and
lung scans were both the same as last time (good news that nothing has
changed). Yesterday I learned that my immunoglobulin levels are very low but
this is something that is totally treatable. So, I will be going into the
Kaiser infusion center once a month to get IVIG infusions. This should help
boost my immune system a bit.
Dr. Nash is also looking to start tapering my 2nd immunosuppressant medication
(Siralimus). We are going to do it slowly and monitor my levels weekly to see
how it goes. Once I can get off of this second immunosuppressant (a couple more
weeks if everything goes according to plan and no GVHD symptoms pop up), Dr.
Nash believes it would be a good time to start my re-immunizations!!! I am
super excited about this (even though it is a year long process) because it
will mean that I will be that much closer to being able to safely be out in
public places and get back to my previous line of work! :). Sounds like I will
start with my first round of shots in late June or early July and then have
another round about 2 months after that. Then 1 more round a year after that,
but between the 2 month and 1 year vaccinations they think that I should be
able to get back out there for most things (see clients in the office, go to
the zoo with Scott, etc). No ERs for work till the 1 yr vaccinations, but every
round is one step closer! :)
We are now also actively working on getting me off the daily IV infusions. This
week we are holding the fluids and then I will do some extra blood work on
Thursday to see where my levels are without the IV supplements...if I can maintain
normal magnesium, potassium, and BUN levels (electrolytes and hydration are the
biggest issues) then we should be able to stop the fluids. Then I will just
have to wait till Dr. Nash says it is okay to get rid of this darn PICC line in
my arm! I am really hoping that it will be sometime before the summer, but
we'll see. I have learned my lesson with asking to get my lines out early
(every time I have done his, I have ended up needing line access again and had
to get another one placed).
My energy levels have improved a bit with the steroid replacement medication to
treat my "adrenal insufficiency" and the medication that they started
me on for the wacky potassium levels seems to be working well so far!
Things are looking up! I got to spend my first mothers day at home on Sunday
(last year I was still in the hospital's isolation/BMT unit). It snowed about 6
inches, so we just stayed home and I enjoyed quality time with my boys, exactly
the way I had hoped to spend Mother's Day this year!
That's about all I have for now...waiting to schedule my IVIG infusions,
getting ready to taper down/off one of my meds, planning for my first round of
immunizations, and hoping to be done with my daily IV infusions and my PICC
line soon!
-Chellie
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