Greg's
Words
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Greg's
Words About Lung Transplants
A few months back, Greg
received a request in the mail to answer a survey about lung transplant
patients. This survey was found in his room unfinished, but it really
gave some insight into how he felt about going thru the transplants.
He was not one to express his feelings verbally. Plus, it shows how
courageous he was!
Question
1: What was it like waiting for your transplant? What did
you do to pass the time while in St. Louis? How long did you have
to wait once you relocated to St. Louis.
Greg:
My Dad, Mom, Sister and I lived in Oxford Hills Apartments. My Dad
was able to continue working in St. Louis for his job. Meanwhile the
three of us would go to the mall, to the movies, all the interesting
sightseeing, like the Science Center with it’s OmniMax theatre, the
St. Louis Arch, the zoo, visiting friends in St. Louis, rent movies,
and check out all the restaurants. But, I also would have doctor appointments
once a week and have P.T. about 3 times a week. I had homebound teaching
come to the apt. So it wasn’t that bad finding something to do especially
with the weather being so nice. We went to St. Louis in June and on
Aug. 5th we got the phone call that there was a donor at about 10
p.m. after a big late dinner. Surprisingly I was really calm and all
I said was “Well, I better put my shoes on.”
Question
2: What was the hardest part about having a transplant?
Greg:
The hardest part was probably the 4-hr preparation before the transplant.
At first I was calm, but when I got to the hospital the reality started
to set in: taking the chest x-rays, starting I.V.s and just waiting
for them to wheel you down to the O.R. Also not knowing whether my
Mom (she had left to go back home a month earlier because of her job)
and my Brother would make it to the hospital by jet before I went
into surgery. But just as I was getting ready to go in the O.R., my
Mom, Brother and his girlfriend came running thru the double doors.
After surgery, the hardest part was probably getting back in shape,
but they have you on P.T. every day. Also knowing the problems I could
have after transplant, for example, rejection, infections and getting
CMV (Cytomegalorvirus).
Question
3: What was the
easiest part about having a transplant?
Greg:
The easiest part was waiting for it and a month after the surgery.
I just go with the flow so it was pretty easy waiting until the night
of, of course. But about a month after the surgery I was sent out
of the hospital and lived for another 3 months for P.T. & bronchs
(bronchoscopies). Gradually getting my strength back and being able
to breathe clearer without the crackles was the easiest part.
Question
4: What was your
biggest fear about transplant?
Greg:
Surprisingly it wasn’t the surgery. To me, I’m totally knocked out
so I think I have the easy job there. So my biggest fear was knowing
all the complications I could have after the transplant. Even though
I got rid of my CF lungs, I was at risk for all sorts of different
infections and viruses.
Question
5: .Did we forget
to tell you something about transplants? Please share it with us.
Greg:
Greg did not answer this question.
Question
6: How did you
explain transplant to your friends and teacher when you returned to
school?
Greg:
Well, about a year before we moved to St. Louis for my transplant
we had several fundraisers from C.O.T.A. to raise money for all the
expenses. We had a lot of publicity spread through our community including
my schools. That’s what I didn’t want the most, is to have everyone
at school find out. I felt they would constantly ask me questions
about it, but it actually wasn’t bad at all. Of course there were
some kids who asked questions but it wasn’t as bad as I thought. We
ended up having a Greg Unger Day at my middle school to help me raise
money. That turned out to be a great event and raised lots of money.
That summer when school ended I left for St. Louis. After it was all
over and it was time to come home, I started back the second semester
of the next year. Since a lot of my classmates and friends knew about
my surgery, they were just happy that I was doing good.
Question
7: How did your
body change after transplant?
Greg:
After my transplant I looked quite different. I had better color in
my face and my fingernails had pink instead of a blue color to them.
From the big amounts of steroids I had, my face was really puffy.
But as they reduced my steroids down my face has gone back to normal,
thank goodness because it was sort of embarrassing with this big puffy
face. Also my eyebrows are bushier.
Question
8: If you had
Pulmonary Hypertension, how did you carry around your flolan?
Greg:
Greg did not answer this question.
Question
9: How would
you explain a bronchoscopy to someone who has never had one?
Greg:
Well, it’s a little nervous for the first one because you’re not sure
what to expect. But you get to the procedure room about an hour before,
and the nurses who to me were really kind and helped me relax, get
you ready with the standard hook-ups, pulse ox, blood pressure, heart
monitor, & I.V. or port. Then they take you into the little procedure
room where they give you an inhalation to numb your nose and mouth
and then before you know it, they put the Versed drug in and it gives
you the nice relaxing feeling and you are then ready. So then while
you are not asleep but you are so out of it you don’t realize or remember
what they did. They put a tube down your nose and take a tiny piece
of your lung to check it for any rejection or infections. I would
wake up back in the procedure room sometimes asking if they did it
or not. That’s how good the drugs are. I would act real goofy and
drowsy. They would sometimes ask me how many fingers they are holding
up and I would lots of times give them double the number they were
holding. After a short while, it would start to wear off and I was
more alert but still very drowsy. They would give me vanilla wafers
and apple juice and then when becoming more alert, wheel me off to
go back home. I would then go home and sleep for several hours and
wake up later not remembering what some of the doctors told me after
the bronch. So I would have to ask my parents later. After a few days
you might cough up bloody chunks which is normal so don’t be worried.
So overall I think they are pretty easy and they give you good drugs
to make you comfortable. But there are risks which I have encountered.
Once I got a little pneumo (pneumothorax) and had to have a chest
tube put in and stay in the hospital a few days, and recently I had
some more bleeding from my lungs than usual and they just ended the
procedure earlier but nothing serious happened from it.
Question
10: Do you have
any suggestions to help make taking medication or treatments more
easy?
Greg:
The most important medication is the Cyclosporine which you have to
take every 12 hours and keep a continuity level in your blood. But
it smells like a skunk and has a bad taste. So I tried the liquid
at first and that was worse. So I went to the pills and used chocolate
milk and Coca Cola to take it with. I found that the Coke worked the
best to subside the taste. But if you have to take it, you just gut
it out.
Question
11: What has
transplant allowed you to do that you couldn’t do before transplant?
Greg:
Having CF (Cystic Fibrosis), I was always coughing and congested in
my lungs. Now I can breathe so much clearer, but still get a little
short of breath in big activities. Actually before my transplant I
could get around pretty easy but with the transplant it makes it a
lot more easier. My biggest problem is staying in shape. I’m lazy
and I just don’t do enough exercise.
Additional
Comments From Greg:
People sometimes ask if
you had to have another transplant, would you do it? Well yes, because
I did have a 2nd transplant. All my answers are based on my first
transplant, and even though it was going good, I kept on having rejection
which eventually turned into Bronchial Obliterians (sp?). About a
year after, I was sicker than ever, needing oxygen all day and having
a hard time just to get up and walk to the kitchen. I was actually
worse off than before my first transplant. So we did a live donor;
a lobe from my Sister and Dad, and that has been wonderful. It’s been
almost 4 years since my 2nd transplant and my lungs are working great.
My 1st transplant I felt great, too, until my last three months, I
really deteriorated so I would say the living donor was a world of
difference. But I knew lots of patients in St. Louis that had successful
transplants from cadavers. You just have to take it day by day but
make sure you keep up your schedule and medications.
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