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Lung
Survey Part 3 |
Note:
Readers
should always consult their physicians before taking any action
(or inaction) which may affect their health or involve decision
making.
“We haven’t any options, have we? . . . After all
it’s go for it or be content to just hang on as long as
you can.”
“You know another thing, . . . at first I was so afraid
of losing my ability to breath . . . like someone was going to
take it from me.”
“You also can put yourself through a lot of mental stress
. . . feeling guilty about the person dying was my worse time.
I had to learn and accept the fact that her life ended, not by
my choice, but by God’s choice.”
“Everything in this life happens for a reason. . . . I have
learned that truth.”
“In a little booklet they give us here in Australia to explain
what’s going to happen and what to expect, It said a double
lung TX takes from six to ten hours. Mine took four hours, They
said the match could not have been better.” (1 year post)
“I went into this life changing venture totally committed
and had the utmost faith in the medical Staff at Saint Vincent
Hospital. I believe if you go in with doubts you are compromising
your chances of a full recovery. I never doubted the ability of
the doctors, nurses and all the rest of their staff.”
“You DO have to literally put your life in someone else’s
hands . . . a difficult thing for many to do . . . there’s
very little feeling of control once you do that . . . hard to
do sometimes.”
“I’m
really not on that many different kinds of meds now. The key
ones as far as immunosuppression are FK506 (also called Prograf),
prednisone, and Imuran. I’ve had a few bumps on the road
to recovery but they were never life threatening or dangerous
. . . just nuisance things as my body adjusts to a healthy new
lung and all the new meds. (4 months post)
“[After my transplant, I] was on the ventilator less than
12 hours before the trach was removed. I was out of ICU in record
time and on the 10th surgical floor in record time . . . chest
tubes removed, and so on . . . and I got to go home August 9.
Started rehab the next week!”
“I’m still sometimes weak and shaky, have the attention
span of a gnat and the energy level of a slug bug and want to
sleep lots. However, I repeat . . . I feel great and I can breathe!
In fact I feel like I’ve gone to heaven already because
I can walk and talk and breathe all at the same time . . . and
my O2 sats stay at 98%. Awesome! I couldn’t
get my sats up that high when I was on supplemental O2
pre-transplant! My weight is right where I want it . . . my
face doesn’t look like a ‘moon face.’ I look
just like I’ve always looked . . . no one would guess
that I’ve just had major surgery. Life is wonderful!!!”
“The transplant team keeps a close eye on all of us who’ve
recently been transplanted. We go to [ ]
for one thing or another almost every day, . . . but it’s
only a 15 or 20 minute drive and I’m glad to
do it. They’ve been doing blood tests and X-rays twice
a week, pulmonary lab tests once a week and rehab three times
a week and can handle anything that comes up before it becomes
a problem. Makes me feel quite safe and protected. We have to
stay in [ ] for three months to make sure I’m stabilized.
Fortunately, I’ll be able to drive after six weeks (I’m
halfway there!). Looks like we’ll be able to head home
the first of November.”
Pre-transplant:
The Wait . . . Getting Ready Physically
“I
was waiting four months in a lodge on my own 3,000 miles
from my home state. A lot of people
were offering to cook ,shop, wash my clothes and help me
in many other ways but I was determined
to do these things for myself and I believe this determination
helped me through it. Each and every
day I would drag my O2 bottle around
quite a large city block with lots of rests, but I kept
it up and
I even slightly improved my fitness while I was there. It
would take me 58 minutes to complete the
block. Post-transplant, it would take me 15 minutes.”
“Well I would say that the biggest bump is how long
you have to wait. . . . I waited over 2 ½ years for mine
and was really bad at the point I got it. . . . I sometimes
wonder how I ever held on that long. . . .
I guess being young was a plus for me . . . I was 33 at
the time of my transplant.”
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