Here are a
few tidbits that I learned today at my Dr’s appointments…
My PFT’s
are up from 94% to 100%... (2 weeks ago they dropped from 107% to 94%, a 13%
decrease for me which alarmed the Drs causing this trip).
The Drs. are fairly certain that the
decrease was cause by infection and not total rejection. Since I have been
treated once for a MILD chronic rejection, that damage is irreversible, but
seems to be more stable. During my
Bronchoschopy on Friday they will determine if I have a lot of infection
(meaning that is the probable cause and culprit) or if there is not much
infection then they will take biopsies to see if there is some acute rejection. If its acute rejection it is fairly treatable
with Intravenous steroids, if it’s not acute rejection then they will discuss
the how soon we need to do a different type of rejection treatment called
photopheresis. If its infection there
will most definitely be IV antibiotics for treatment administered for two weeks
and repeat of PFT’s every two weeks.
The polyps in my nose have grown back, with infection.
Therefore I will be starting a nebulizer through a mask once a day and rotating
antibiotics monthly to fight infection in my nose/trachea/lungs.
I’m going to start and inhaled
steroid to lower my prednisone dose (oral steroid) to reduce long term effects
of high dose prednisone.
The handheld Spirometer that I use
daily at home to test my lung function is to determine if there is a large
infection prevalent, rejection is determined by long term drop in my PFT.
Increased exercise is a must to keep
airways clear and open and increase the life of the new lungs.
Things are
looking good. My new lungs are capable of 5 liters of air which is uncommon for
my body size. Cystic Fibrosis increases your chest cavity size, and when the
new lungs are inserted they can be larger (helps increase the odds of getting
lungs). My 94% refers to about 3.9L of Air
while my 107% refers to about 4.5L of Air. Directly after transplant (twice) I registered
5.5L of Air, while the average has been closer to 4.7L. The 4L of air is 3 times as much air than I
was getting when I was listed for transplant…
In
conclusion, I feel amazing, I can do more than I have been able to in several
years, I’m enjoying life and I have a long, long way to go before we have to
reevaluate another transplant!! Thanks for all the Love, Support and
Understanding over that last two years!!!
If you have
any questions please ask!!!
