Dear Family and Friends,
We finally made it to Gary's 1st post transplant clinic appointment --
Third times the charm! He'd been scheduled for two other appointments, but
ended up back in the hospital before he could make it to either one. Several
doctors that had seen him in the hospital as well as some of the other clinic
workers commented about him finally making it to his scheduled appointment. We
left home at around 9:15am and got home around 5PM so it was a very long day.
Part of that time did involve travel and parking -- approximately 45 minutes
going in and approximately 1 1/2 hours going home -- you have to love Chicago
traffic and be FLEXIBLE. Thankfully, over the years of living out here, I've
gotten used to driving on the Eisenhower.
The word of the day is FLEXIBLE. I've decided that these clinic days are
going to be long days and that one needs to be FLEXIBLE and realize that things
will more then likely not go as planned. We were told to get Gary's blood work
done first at the out patient lab but, when we got there, the "lab order" that
we had been given was not, according to the receptionist at the lab, on the
correct paper and also, we needed to go to registration first. Rather then make
Gary walk all over since he still is gaining his "walking legs" back, the
receptionist suggested he stay there and I go to registration and also to the
clinic for the proper paper work -- Good thing we did it that way because even
though walking is not my strong suit either, right now I can walk much better
and faster then Gary (we'll see how long that lasts).
His appointment went well, overall. They answered questions that we had,
explained some of the things they wanted him to change in his diet, for example,
get this, he needs MORE salt! -- not something most people are told. It's been
interesting changing his diet already since he can now eat like most people i.e.
not restricted anymore from sweets because of the diabetes, not restricted
anymore from things like kidney beans, split peas, whole grains, foods with a
lot of potassium and phosphorous, because of the kidneys. Good thing we're used
to being FLEXIBLE in what we eat. The only food that he cannot have is
grapefruit because of how it interacts with the anti-rejection medications he is
on. He also needs to work on drinking more fluids. Before the surgery, since
his kidneys were hardly working, he didn't drink a lot, so now, he has to learn
to drink a lot more. Apparently, he's still not drinking enough since some of
his blood work and vital signs indicate that he still is somewhat
dehydrated.
They also changed some of his medications based on his vital signs and his
blood work -- added a new medication and changed the dosage of one of the others
they already had him on. I we also need to start checking his blood glucose
each morning when he wakes up before he eats, check his blood pressure (both
sitting and standing), pulse, and temperature each day. He has to take medicine
4 times a day (I have my alarm on my phone set for the 4 times). The most
important is making sure he takes his anti-rejection medications twice a day 12
hours apart (9AM, 12 noon, 5 PM, and 9PM). I finally set his pills up for the
week -- hopefully I won't regret that, since I'm still learning what pills he
needs to take when as well as what they all look like, and when the dosage
changes, I usually need to separate them all and start all over. Very few of
the medications he takes now are the same as what he took before surgery. My
understanding is that the medications will be changing quite frequently for
awhile until all of his numbers in his blood work level out, so again we need to
be FLEXIBLE.
If my understanding is correct, it looks like for now, as long as he's
doing well, that we will have to go for blood work on Tuesdays and then blood
work again on Fridays as well as see the doctors at the transplant clinic at
UIC. The Tuesday blood work can be done locally so we plan to do that. Friday,
we'll have to figure will be another long day. We'll have to stay FLEXIBLE as I
won't be surprised of changes happening in both of these either.
Good thing I was FLEXIBLE and packed lots of snacks (Peanut Butter and
jelly sandwiches, grapes, 3 crystal light packets for Gary besides the cup he
had with him already, and water and of course, coffee for me), to make it
through the long day. Right now Gary's appetite hasn't all the way returned, so
this was all we needed until we were home again.
As of tonight, Gary has been home the longest time since he's had the
transplant surgery -- hopefully things will keep going well.
Please keep praying that Gary will continue to do well at home and also continue to pray for strength and energy for all of us. We're all very tired.
Thank you all for your continued thoughts and prayers. They mean a lot to us.
Love,
Nelly and family
Are not five sparrows sold for two pennies? Yet not one of them is
forgotten by God. Indeed, the very hairs of your head are all numbered. Don't
be afraid; you are worth more than many sparrows.
---- Luke 12:6-7 NIV
Hopefully we'll make it at least past our 1st clinic appointment
which is now
reset for Friday, but hopefully a lot longer. They have decided that
Gary has C-diff so he will be on an antibiotic for 10 days -- not what
we wanted, but from the way they are talking, the antibiotic should take
care of it. They also told me what things we should do at home as well
as things we need to watch for in him. If the culture had not come back
positive, they were thinking it might be a reaction to some of his
medications. The good thing is he's doing better and is home. It will
be nice for him to go for a walk out in the beautiful sunshine even
though he'll have to always wear sunscreen and cover himself with long
sleeves to be in the sun -- I'm sure it will just feel good to be
outside again.