Hello there! My names Nicholas. Nicks okay too, if you’re needing to conserve Oxygen through the use of fewer syllables. I totally understand. Believe you me.
I am a I.P.F sufferer, who received the gift of donated lungs on March 6th 2018.
Before me illness presented itself, I was a pretty healthy guy. I jogged regularly, lifted weights religiously, and eat right. I lived a pretty active life. Working full time and (as cliche as it sounds) spent lots of time with friends and family.
Then I started coughing.
I’ve been blessed to be the type of person that hardly ever falls ill. I can probably count on one hand the number of times I have been knocked off my feet, stuck in bed sick in my life. So naturally once I started having difficulty breathing I thought, “Pft… this’ll pass quick.”
It didn’t pass quickly. But it did progress quickly.
I went from 160-165lbs of muscle to 105lbs of skin ‘n bone in a matter of months.
My primary care physician first wanted to treat me for GERD. (Gastroesophageal reflux disease) Even though I didn’t have any acid reflux symptoms. Then asthma. Basically prescribing inhalers that I never had to use, because I never had an attack.
Finally I had the bright idea that maybe my issues were allergy related. Both my father and my sister have always had terrible allergies. Why couldn’t I suddenly have started reacting to something? So I got a referral to an allergist.
The process to determine if we’re allergic to the things around us sucks. You lay on your stomach and they poke up and down your back with little injections of “stuff.” To see what if anything you react to. (I had pureed cock roaches injected into me! Blurgh!)
I wasn’t allergic to anything.
But my allergist was determined to find out what was wrong with me.
He asked me if I had had a C.T scan. Which I hadn’t. So he refereed me to a pulmonologist at the local hospital to have one done. (Side note: getting injected with contrast for a CT scan makes you feel like you have to go pee. But you don’t actually have to. It’s totally weird.)
The results were not good.
I was diagnosed with Pulmonary Fibrosis. The look on the young doctor’s face as she told me was akin to the look you see on a veterinarian’s. When it’s time to put the family pet down.
I wasn’t ready to give up though.
Thus started a journey to learn about this disease and what could be done about it. The first doctor referred me to a more experienced doctor in her office. Who referred me to an even more experienced doctor in her network. Basically all of them, while competent, were out of their comfort zone with my case.
They did put me on oxygen. Which was a God send.
Thankful I have been blessed with a cousin who has a masters of nursing degree and works in the Department of Medicine, division of Allergy, Pulmonary and Critical Care Medicine at Vanderbilt University. She discussed my case with the doctors she works with. Who gave suggestions and helped get me referred to the doctors they would want to go to near me. (Yeah shes pretty awesome.)
Which is how I found my self going to see doctors at I.U University hospital.
Lots of x-rays, CT scans, pokes, prods, breathing into machines, and blood draws followed. My pulmonary fibrosis became Idiopathic pulmonary fibrosis. They were pretty adamant about pursuing transplant. I was pretty adamant about healing the lungs I had.
There is no cure. There is only the progression of the disease.
For some it is fast. For some it is slow. Some people do really well. Others not so much. My case progressed in leaps and bounds pretty rapidly. My oxygen needs went from 1 liter per minute to 10+ liters per minute.
My world soon consisted of bed, a chair in the front room, the bathroom, the hospital, and rehab.
Then I crashed.
One day at pulmonary rehabilitation I got on the tread mill and after only a minute all my stats tanked. The therapist had me rest and try again. Not even another minute of walking and my stats tanked again. I was sent home and the transplant team called.
It wasn’t long until I received a call telling me to get my tail end back to the hospital.
I went through four oxygen tanks getting there.
I was admitted and soon found myself hooked up to a 100% pure oxygen mix at 60+ liters per minute. But it wasn’t enough. I needed to be hooked up to an ECMO machine. Take it from me. It’ll bend your pick to wake up and see a dozen tubes running to and from your chest. (The scars are pretty wicked too.)
I came pretty close to being put into pine box a couple times, but I hung on. (I can be pretty stubborn.)
I was in dire need of a transplant to survive, but wasn’t able to be listed. My weight was just to far below my body mass index. I was floating round 100lbs and the team desperately wanted me to be 120lbs to increase my chances of surviving. I had tubes pumping nutrition into me 24/7, but couldn’t get a single pound to stick to my ribs.
Finally I got so bad I needed to be listed or put on hospice.
My doctors went to bat for me and presented my case to the transplant committee despite my low weight. Blessing upon blessing I was listed and placed as number one on the list.
Transplant isn’t first come first serve though. There is a point system based on a slew of criteria. And organs are given to the best possible match, not the next person in line.
My donor presented me with their amazing gift 12hrs after my being listed.
I went to sleep on March 6th and remember waking up on the 8th.
I could breathe again.
I can not begin to put into words what that feels like. Those of you who have experienced that first breath will understand.
I am so grateful for the people that have made this possible. I don’t know what I did to deserve to have God place them into the my path when I needed them all so much. Friends and family. Doctors and nurses. Therapist and technicians. My donor.
I have truly been blessed more then I deserve.
I’m not back to 100% yet. (Maybe I never will be.) But boy I’m I doing better then when I was down around 0%. I’m able to exercise again and have put on weight. I can spend time with family and friends again.
Sure there has been pain from time to time. Frustrations. A boat load of pills to take everyday and a bunch of precautions to live by. But I’ll take it.
I don’t see myself as having done anything special. I just hung on tight and survived.
But, I’ve been told that my story is inspiring. That my recovery has been a miracle. That it is amazing how well I am doing.
I want to honor this gift my donor has given me. So, I’m going to do my best to chronicle my post-transplant journey with this Blog. Hopefully I can take this new lease on life, live it to the fullest, and maybe help others to overcome their fears of getting a transplant and perhaps help them release that there is a chance for a life worth living.
I appreciate you taking the time to visit my little corner of the internet. I hope it manages to help you in some way. And if you know someone who is struggling with a Pulmonary disease or is the care giver of a loved one with a pulmonary ailment, please point them in my direction. Maybe my journey can help them with theirs. That’s my goal.
Sincerely – Nicholas
UPDATE: (8 months post transplant)
On November tenth I went out and purchased an old school bus with the intent of fixing it up and traveling this beautiful country I’m blessed to (still) live in.
Eventually I know something will happen. I’ll catch some sickness, rejection will set in, or heck maybe I’ll break something on I hike because of my own clumsiness. But until that day comes I hope to try and wring as much out of this gift of breath as I can.
Hopefully I get to make a lot of fun memories to take with me, before my journey ends.