Many of you have been graciously asking for updates
regarding my recent and ongoing doctor appointments. This summer, it seems that we keep going from one thing to
another, with grandchildren visits interspersed throughout. I am thankful for the fun times with
the kids!!
The last major trip down to MDA left us with the decision
that we would wait until October before doing the next round of bone marrow
biopsies, flow cytometry tests, CT’s, etc. Well, that was before this nagging cough that I’ve had since
last December got uncontrollable.
MDA had already sent me to all of their folks to check for the big
stuff, so we had decided that it must just be allergies (which I did not have
before the transplant).
:/ So I started on several
allergy related meds, sprays, etc.
It seemed to help…for a while.
Then a few weeks ago, it came back with a vengeance that nothing would
quiet!
During this same period, after a weekend at the country, I
acquired a weird rash. Well, at
first we thought I had major mosquito bites all swollen up, but it didn’t take
long to figure out that wasn’t it!
Four days of insanely itchy whelps followed by red splotches jumping
from one area to another finally got my attention and I made an appointment to
go to an allergist and sent pictures to my docs at MDA.
Ahhh!
Prednisone! Relief. But he didn’t know what on earth was
the cause. It seemed to be heat
related, but it was very “atypical.”
Then he gave me some wonderful nasal spray with an antihistamine in it
and some cough medicine with codeine.
First night I’d slept in ages!!
While this was all great, my docs at MDA were not
happy. They do NOT like
rashes!!! So Monday, even though I
was cleared up for the time being, I went down for labs and a “viewing.” Unfortunately, some of my lab numbers
that I have had trouble with in the past were stirred up again. Things that sound completely benign and
silly compared to talking about cancer and the like.
First, my Potassium serum count is up again. It has done this many times over the
months, now years. Doesn’t sound
like a big deal, but it has to do with your kidneys and can affect how your
heart works. So it’s kind of a big
deal.
Second, my Calcium serum count is up again. This is a bigger deal. I have already been to the
endocrinologist at MDA and been tested and discovered that I have a goofed up
parathyroid gland. (Not the same
as the regular thyroid gland.) The
parathyroid hormone regulates the amount of calcium in the blood and in the
bones. So my calcium is continuing
to leach out into the bloodstream and not be absorbed into my bones, thus
worsening my osteopenia/osteoporosis condition. Long story short, they have been watching this number
waiting to see if they are going to have to remove my parathyroid gland. Looks like they probably will. :/ The frustrating thing is that I have had my whole body
rebuilt without being cut on, and now I’m going to have to have surgery because
of this silly little gland. Oh,
well.
Next Monday, they want me to come back to see the GVHD
doctor and the transplant dermatologist (who knows a whole lot more about
rashes in transplant patients than the normal allergist or
dermatologist!). Plus, I have to
re-do all my labs. They are pretty
sure that my rash is due to “immunodisregulation.” Yeah, I don’t think it’s a word either, but it just means
that even though my immune system is better than it was when I was right out of
transplant, I will never, ever have a normal immune system again, and I will be
prone to get weird stuff.
Then, instead of waiting until October, Dr. Shah wants to do
another bone marrow biopsy, flow cytometry test (blood and bone), CT, chimerism
%, etc. in August instead of waiting until October. Sooooo, besides my granddaughter’s birthday, Paul’s
birthday, great niece and nephew’s birthdays, trips to the country, still
trying to figure out the details of Paul’s new job/insurance/retirement plans,
projects to do now or later, and when to go back to Dallas so my daughter can
catch a nap and a break from those three adorable little hooker dookers…August
is going to be full.
So as I keep saying…one day, one prayer, one step at a
time.
I sure am glad the fatigue is better!! :)
