I think it’s safe to say that for anyone with
Cystic Fibrosis, when the word transplant comes up during a hospitalization or
a routine clinic appointment, feelings of pure anxiety arise. The thing that
has been dreaded all along is now staring you straight in the face.
Back in June when I was in hospital fighting
another CF exacerbation, I was told that lung transplant should be considered
as a possible treatment plan. A Resident brought it up with a fellow med
student by his side (neither of which are my favourite people when I’m in the
hospital because most of them act like they know more about CF than I do).
Instantly, I was flooded with fear. Pure fear. Luckily my Momma was with me and
was able to talk to the Resident as I sat on my hospital bed in tears. I was
shocked because a Resident was telling me this. As a nurse, I know that these
topics are sensitive and should ONLY be brought up by someone who the patient
knows and who is known by the doctor (i.e. regular doctor, social worker, or
nurse).
After I calmed down, I was able to talk the CF
social worker, nurse and my regular CF doctor. They had a different story and
were upset to hear that lung transplant was brought up without discussing it
with the CF team first. They figured the Resident was actually getting me
mixed up with another patient. But, my Doctor did say that since the topic of
transplant had been broached, maybe it was time we starting talking about
whether it might be needed in my near future.
I want to be clear - I don’t blame the
Resident. I was just frightened and frustrated in the way it was brought up. As
anyone with CF knows, it’s not easy to prepare yourself for that topic. I had
built the word transplant up on this intimidating pedestal and was scared to
have to face it. I was left with this unsettling feeling in the pit of my
stomach despite being surrounded by devoted support from my family, close
friends, CF friends and CF team.
Not knowing what else to do, I reached out to
some very wonderful friends with CF who supported me with words of wisdom.
Soon, the fear I had about transplant lessened, and I was able to take the
control and fear away from the word transplant. They say knowledge is power. So
last week, I put my fears aside, and went to the pre-transplant clinic for
information. My family and I met with the nurse and Respirologist and knowledge
is what we got.
We learned that lung transplants are now
considered an extension to CF care rather than a last resort. Stats for people
with CF after lung transplant are actually quite good (90% survival rate after
the first year and 75% after 5 years). Your new lungs no longer have CF, so
there’s no need for long physio sessions or countless inhaled meds. And you’re
not burdened with a constant cough and over-flowing mucous.
However, lung transplant come with risks and
complications. Rejection is the greatest concern and the anti-rejection
medications are very hard on your body. So basically, you’re trading one set of
issues for another. But, you’ll have better lung function and regain the ability
to DO things!
So, all in all, having a new set of lungs may
give you the chance to live in a way that you haven’t had the chance to in a
long time, but the side effects are harsh.
Right now, my lungs are somewhere between
being too healthy to need a transplant (which I’m thankful for), but not
healthy enough to work, travel freely or have a baby. I don’t know where that
puts me but I suppose for now, I’ll focus on what’s important in life.
During this holiday season, I hope you take a
moment to be grateful for what you have, be silly with your partner, kids,
dogs, friends, or family. Laugh until your body is filled with joy. Hug each
other tightly. Surround yourself with happiness and love unconditionally.
That’s my plan.
Merry Christmas everyone, and Happy New Year!
