Submitted by Laura on Fri,
01/04/2013 - 2:58pm
The past few days have
been good. The mornings are very busy! Joe is back to work and my
Mom has a cold, so she is not able to visit. I asked the doctor how long
after her symptoms are gone should she wait to see me, and he said a few weeks!
He said 1 week minimum, but 2 weeks is best. So, if any of you are sick,
or you are getting over something, we have to wait 2 weeks before seeing
eachother....that rule is for the first 6 months, because I am SO very
susceptible to infection that one little cold can cause me VERY bad problems.
Because of this, I have decided I want everyone who comes into my room
(nurses, techs, docs, visitors) to wear a mask. I don't want to
compromise these lungs one bit!
So the past two days, I
have woken up between 7:30-8 am, which is nice, and the pain hasn't been as
bad. They are trying to ween me off IV pain meds, which is the next
step to get me closer to going home. I passed my swallow test for solid
foods, so now they are trying to get me to swallow some pills on my own, which
is another step to going home. They are thinking maybe Tue or Wen. next
week I may be going home! I am not getting my hopes up because anything
can happen, but that is the path we are on. The other thing they are
trying to do is get me off of oxygen. Right now, I am on 2 liters. If
need be, they would send me home on oxygen.
So my day consists of
trying to pound down some breakfast by 8 am because respiratory comes about
that time to do my longest therapy (3 nebulizers, 1 ez pap lung exerciser, and
chest PT). The nurse is around at this time to give me all my meds.
There are 3 different doctor teams that come during rounds all before
9:30 am (when it rains it pours!). Physical therapy my come at this time
to exercise me. I also have to think about doing my incentive spirometer
(a breathing machine that helps open my lungs and get goop up) every hour 10
breaths. This is all before 10 am. Then, I have to think about
taking walks at least 3-4 times a day around the floor. My rule is that I
have to do all my medical stuff before I can do fun stuff (like getting on the
PC). I must do everything in my power to take care of these lungs and
help them get rid of the fluid that is still in there and keep them expanded!
My CT scan reveals a
significant improvement after the 2nd surgery, so that is a blessing.
They are more expanded with a little fluid. I can totally breathe
way better, as shown by my decreased oxygen needs and my overall "how do
you feel?" question. I have been sleeping well and can even sleep on my
sides now! I think things are moving along at a great pace and I pray
things continue to look up and up.
Joe and I received about
1.5-2 hours training last night from the post transplant nurse regarding
sanitation, food prep, etc. for when I get home after transplant. On
Monday, I will probably receive the Pill Box training, since I will go home on
probably 20 medications that I have to take religiously at the same time each
day. I also will have to take my vitals daily when I get home. For
the first few months, I will probably be on nebulizers and they may want me to
use my vest for a bit for airway clearance. I need to be walking when I
get home, so I am happy we have the treadmill! After I go home, I have to come
back weekly for 4 weeks for blood work and check ups. I cannot drive for
the first 3 months, so I will need chauffeurs when I need to go anywhere .
On another note, while I
am elated that I am doing so well, there is another transplant patient that
I've become friends with, Kelly Langs, who was transplanted on Dec 6 at
Stanford. Unfortunately, Kelly passed away on 1/1/2013. This is
just a reminder how fragile lung transplant is and how hard I will need to work
to keep my lungs safe, expanded, clear, and free from infection. Please
take a moment to read Kelly's blog by clicking here.
I am so sorry this has happened and I pray for Kelly and her family daily.
If you are visiting me, I will ask you to wear a mask, remind you to wash
your hands, and possibly ask you to do other things to keep me safe.
Please don't be annoyed or offended that I am asking you to do these
things, it is for my protection.
Also, thank you all so
very much for your support for the double your dollars. I can't tell you
how much you all mean to me and how much your words on facebook, emails, phone
calls really lift my spirits. I appreciate all of you so very much.
Anyway, lunch is here,
my hour downtime is over before I start the next course of treatments, walking,
medication, nap, and a visit from Grandma. Talk to you soon!
Laura
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