Hello Everyone,
My name is Nicholas Gainer, I am a 38 year old male with Cystic Fibrosis. People who
have Cystic Fibrosis have a defective gene that causes a thick buildup of mucus in the
lungs and also affects my pancrease and other organs. In the lungs, the mucus clogs the airways and traps
bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In
the pancreas, the mucus prevents the release of digestive enzymes that allow the body
to break down food and absorb vital nutrients.
I recently learned that I need a double lung transplant. This operation will be
performed at the Cleveland Clinic. In Cleveland Ohio And we need a minimum of $15,000 in cash to help  cover medical cost I don't have that
kind of money, so I am asking for help from the Go Fund Me Web site. I would like to
explain what an average day is like for me.
My day usually starts around 9 am. On a good day, I wake up, turn off my oxygen and
walk to the kitchen. My lungs are tight "my airway is constricted." My breaths are very
short from lying down all night. First, I check my blood sugar level. I am diabetic from
my cystic fibrosis. I have to check my blood sugar at least four times a day. I then give
myself an insulin injection every time I eat. Then I get my 3 aerosol treatments ready to
use with my nebulizer machine ..The first medication is Albuterol.  Albuterol is a
bronchodilator; this medication relaxes muscles in the airways and increases air flow to
my lungs. This treatment last about 15 minutes. Next, I use Pulmozyme. This
medication makes it easier for me to clear my lungs, it thins and helps to loosen the
mucus in my lungs. This treatment takes 10 minutes. After that I put on a special vest
that is hooked to a machine that pulsates air and vibrates my chest. The vibration of the
Vest helps loosen the thick mucus in my lungs. This process takes 30 minutes. While
wearing the vest, my goal is to cough up as much mucus as I can to help me breath
better. After the vest I start my 3rd aerosol treatment called Tobramycin. Tobramycin is
an antibiotic that treats various types of bacterial infections. This treatment takes an
additional 45 min. Each morning, I spend one hour and 40 minutes to help clear out my
lungs. I then go back to the kitchen to take a hand-full of pills. Next I sterilize my
equipment for preparation for my next treatment. I take an average of 30 pills per day.
My morning routine from start to finish takes about 2 hours. On a good day, I try to
perform daily activities of daily living. It takes a lot longer for me to do any routine tasks
that a normal person would do. I get short of breath easily due to my lung disease. I do
wear nasal cannula oxygen, but I often have to sit down  frequently to rest and catch
my breath. Taking a shower and dressing for the day uses a lot of energy, so I stop and
rest a lot. Cleaning and preparing food also causes me to become short of breath and
winded. At 3 pm, I take more medications, take an albuterol treatment and again put on
my vest to help vibrate my chest. This second treatment last 45 min and another 20 to
sterilize my equipment. Then evening comes, by this point I am once again tight
chested and worn out. I start my medications around 8 pm. This treatment is the same
as my morning routine, it takes about 2 hours to complete. I can then lay down to rest.
On a good day, I have to allow 5 hours for my medications and breathing treatments.
On a bad day when I can't catch my breath, it takes me so much longer to get my treatments ready and completed. When this happens, I stay hooked to oxygen and
move around very little. Just standing up takes a lot of energy. I try to pace myself.
Even taking a breath is difficult for me. I have to work for every breath during the easy
days and even more on my hard days. My lung function as of now bounces around 16%
to as low as 13% and still declining! To help understand what I go through on a good
day, grab a straw and hold your nose, then go about your day breathing through the
straw. On a bad day, replace that straw with a coffee stir stick. When I have a bad day,
I know I will be admitted to the hospital for a 2 to 3 week hospital stay. When I am
hospitalized, they  place a PICC line into a vein in my arm or neck to administer
my antibiotics. The tip of the PICC line catheter is positioned in a large vein that carries
blood into my heart. I usually receive IV antibiotics every 6 to 8 hours through my PICC
line. My last hospital stay was in November and I spent 3 weeks there. My family
celebrated Thanksgiving Day with me
in my hospital room.  My pulmonary lung function was 13% when I was admitted to
the hospital and 16% when I was discharged from the hospital. This double lung
transplant will hopefully bring my lung function back to 90% to 100%. So, for me, this
will be a restart in my life! I cannot wait to breath again. To take a breath like a normal
person would be such a blessing in my life. I cannot imagine what it would feel like to no
longer be AIR DEPRIVED. To my family and friends, I am asking for your help. To the
many strangers out there who have an extra $5.00, $25.00, $50.00 or more, I hope and
pray that you will pray about my' situation and make a donation to MY GO FUND ME
web site.
To all of you who have donated to this fund, I would like to thank you for helping me
obtain my DOUBLE LUNG TRANSPLANT.
Thank you for reading my story, please feel free to share it with your family and friends.
Nicholas Gainer.
Akron, Ohio