Hi! My name is Chris Merchant, and I’m a 33-year-old brother to a late sister, a son, IT guru and friend living with Cystic Fibrosis. I created this page to raise funds for a double lung transplant which I need at Duke University. Below is my story, thank you for taking the time to read it.
Cystic Fibrosis (CF) is a genetic disease that causes thick secretions in the lung and pancreas, eventually resulting in pulmonary failure and death. I was born with this, sweat tested at birth after they discovered my older sister had it. There is additional bacteria that people with CF can culture and pass to each other that have no cure and cause worsening lung deterioration. One of these is Pseudomonas, it is one of the more if not most common bacteria that all CFers culture at some point. I have cultured 4-5 different bacteria’s, thankfully able to eradicate all of them minus the Pseudomonas, that is the main one that is killing me, seeing x-rays of my lungs vs your lungs are a scary thing. Growing up I was very active, I could run and keep up with everyone. Often, I did push myself beyond what was healthy just to keep up with others and put on an image that nothing is wrong with me. CF is often called a hidden disease because looking at someone with CF they look normal, perfectly fine, but underneath they have a terminally ill disease that is effecting their lungs, pancreas, kidneys, liver and more. My lung function started to decline badly in my mid-twenties, during this time my lung capacity was around 50%. As my lung function worsened, my weight also was harder to gain and maintain. This is because 2000 calories a day we burn just breathing, there are a lot of muscles involved in breathing believe it or not, the more winded you are and harder to breathe, well the more those muscles are being used, burning more calories.
The worse the disease gets then comes fevers, lung infections, increased cough, shortness of breath and the need for oxygen. Lung infections often come with just a simple cold I could catch, this requires us to go in for two weeks and receive a central catheterization (an PICC (IV) line that runs to your heart), to pump the multiple strong antibiotics that run through it, throughout my whole body. Many of the antibiotics I used to use, oral and IV, to get me back to normal, my bacteria have grown resistant too, not leaving many options for care when my lung function drops.
When I’m not in the hospital, my care includes daily nebulized treatments, this has always been 30 minutes in the morning and 30 minutes at night, for the past few years since I have been sicker, it has been increased to 30 min in the morning, another 15-min early afternoon, 15 min late afternoon and the final 30 min at night. We also do daily airway clearance, putting a vest on us that pulsates hard and fast to help loosen the mucus in side of us, the vest jacket looks like something SWAT would wear. About 20 pills daily, caring for my CFRD (CF Related Diabetes), inhaled and oral antibiotics, all done and taken multiple times a day and then throw in about 5 pills depending upon what antibiotics I’m alternating with month to month. I have also acquired arthritis in my left hand and wrist due to the disease, and if I go just a week without exercising my legs, they start aching.
As I type this up, my birthday is tomorrow and I am in a hotel room in North Carolina, how did I get here? I grew up in Marietta, GA. I could not ask for better parents, an awesome sister, Halloween and Christmas were my favorite growing up. My parents divorced when I was young, I want to say when I was about 10 years old. My sister stayed with my mother, as did I but one night we got into the typical brother sister fight and I said I’m going to live with dad. I put all my essentials into a suitcase and had my father come pick me up. Ok, what I mean by this is I threw all my Lego’s and toys into a trash bag and had my father pick me up. He came back the next day for my clothes, bathroom toiletry, etc. My sister and I were both born with Cystic Fibrosis, her case was a lot worse than mine, eventually my father and I moved up to Boston (his family lives there), we then found out my sister had about a year left in her, so we then moved back to Georgia until my sister passed which was a little over a year later. She passed away when I was 13 yrs.’ old, she was about to be 16, this was March 1997. Well about two months later God gave me another challenge; my mother was heartbroken from her daughter, and she ended up having a heart attack, shot her diabetes way up, slipping her into a coma and did not wake up. That was in May of 1997, after this happened my father and I decided to move back up to Boston where we resided for about 15 years until I was 28, Boston is my home and always will be. If you see the tattoos on my forearms, right arm is Kelley, my mother, left arm is Jennifer, my sister, inner right arm says, ‘Just Breathe’. Now, I met a woman from Colorado, she had to move back to Colorado and I figured I’d rather try it and fail then never try at all and always wondered what would have happened to that girl from Colorado. We spent 3 amazing years together, unfortunately mistakes happen, all you can do is live and learn. We had a lot of fun times, and I met an amazing family that I will forever consider my 2nd family. When we broke up my lung capacity (FEV1) dropped 10% from 35% to now 25%, I never did it back up to that 35%. Every time we go to clinic one of the first things we do is our PFTs to find out what our FEV1 is. This is basically the holy grail to your appointment; the rest of the day is focused around it. My nurse and I looked back at the logs and saw that month I dipped 10% and that was the month we broke up. Lung story short, stress has a lot to do with our disease. So, after 5yrs of living in Colorado, for health reasons I had to move out here to North Carolina in hopes of getting this lung transplant at Duke. Once I get my new airbags though I plan on moving back to Colorado, I truly fell in love with that state. I love the outdoors, so many things I want to do when I get back, I want to climb a 14er, discover more trails, do some hang gliding, all of it. Cherish every breath and see as much of this beautiful planet as possible.
My hospitalizations started about a year after I moved to Colorado, a two week tune up that basically cleans me out, these are normally done yearly, as the years went on though it went to 2, 3, 4, 5 a year. For the past year or so I’ve probably spent 40% of it in a hospital. Social media can be the devil, seeing all your friends out having a ball, enjoying the summer and winters, it can hurt but you just need to stay strong and remember God chose me to have this life because he knew I am a fighter and can get through it. Past couple years I started missing events and celebrating many birthdays and holidays inpatient with the nurses, who I grew to know and think of as extended family. This past year I spent Halloween in the hospital, the super bowl with my team the Pats playing, and probably other holidays, I try not to remember them. This year I will be missing a very close friend’s birthday back in Boston due to my health and being out here in NC for transplant. Missing work was always an issue, or where I worked; was it clean enough for me, after my disease getting in the way of many of my jobs I realized its best I start my own company that I can work at from home, really had no choice since I was getting sicker and sicker, often pushing myself to get to work, which paid bills but then deteriorated my health.
Despite the CF and pseudomonas, I pursued my passion in IT which grew to be my career.
Fenway and I in Evergreen, CO for her 1st birthday, 7000ft elevation was a struggle but we had fun!
We somehow managed to get in a group photo the night of my surprise going away party when i left Boston for Denver
After pushing myself to get to my last job that was a 9-5 mon-fri, my health was factoring in a lot and I was just making myself sicker trying to get in to work every day, I had to leave my job and find a full time remote position while also working on my own company, I had to focus more on my health if I wanted to stay alive. It was now that I started taking a lung transplant into high consideration and speaking with my CF team about it. After reading reviews, statistics and more, I liked the idea of Duke University performing the surgery. Duke is one of the leading transplant centers in the US, there are many other great ones out there, but I liked what I read about Duke and reached out to them to see if I would be a possibility. After leaving my last office job and acquiring a work from home position and running my own company, I struggled to get my lung capacity back and get off oxygen. I was 32yrs old and could not go out and do the basics anymore. Driving around with my oxygen on id see people running with their dogs and doing things that require breathing and it could get to me at times. I fought and fought and that thin Colorado air was just killing me, for those that don’t know, the city Denver stands at 5,280 ft. elevation, hence the reason they call it the mile-high city, because more than likely where you are reading this right now, Denver and where I lived, was a 1 mile up in the air from where you sit (sea level). The higher you go, the thinner the air gets and the harder to breathe, and already having a lung disease that hinders my breathing as it is, well it was tough. Oh, and before I forget, when I broke up with my ex (Jenine), I bought myself an English Bulldog and moved into the city. I bought her at 6 weeks old and she is like a mini rhino as a puppy, all the wrinkles, just adorable, she was born deaf, didn’t know this and found out later. I named her Fenway after Fenway Stadium in Boston. Why an English Bulldog? Always wanted one since seeing Rob Dyrdek’s bully, plus they have breathing problems, like me!
So, my lease was up at my apartment in the city, and it hurts me because I loved that apartment, but due to my health I had to move back in with my father. Let me tell you how hard it is to be 33yrs old and moving back in with your father or parents. It sucks, but you must put your pride to the side and put your health #1, always. For that last 6 months of living in Colorado at my fathers, I was in the hospital for a month, out for a month, back in for a month, out for two months, back in for a final month and then we left. Because our lease was up at my fathers and the elevation was killing me, literally, we had to schedule the movers, transport his car, pack up my car and start driving out to North Carolina with no place to live. Everything we applied for they would not rent unless you see it first, or it was a Craigslist scam or it was already rented to someone else, etc. there was always something.
Now I must go out and say none of this would be happening if it was not for my amazing father. This guy goes beyond the call of duty to make sure I have what I need. He might not remember the names of all my medicines, but he is always there to make me my high calorie meals, put together my meds to inhale, cleaning the place, going to the store when I need something, and not an hour later, literally gets in the car and goes right then and there. This past two years have brought us closer than ever, even with two slipped discs in his back he moves around like a rabbit when I need something, I must constantly tell him to slow down, its ok, but he doesn’t know any better. When his son needs something, he runs for it. I could not ask for a better father or friend, he has become my rock during this period and when he leaves for work, the day sucks (sorry fenway) without him. This transplant is not just for me- it’s for him, it is so he can watch me grow up more, get married, it is so I can take care of him when he is older and needs a hot nurse to wash his back, I’m the guy that needs to arrange that! I cannot and will not die before this man does, I cannot even imagine life for my father if I pass away, having lost his ex-wife who was his best friend, his daughter and then his son? I cannot have that, him and I have had a tough life losing my mother and sister, I have gone through more than a lot of people have their entire life and he went through all of it with me, and together we got through it as a team. So, I need to stick this out a bit longer so that he can get those hot scrub bathes and pass on to heaven before me, but I cannot do it without new lungs, and being at just 16% capacity right now, it’s scary. So, you see, I’m not only wanting to live for my own future, it’s so much more than that. My desire to continue my life is yes for myself, but also for all the other lives connected to my own, each of whom I love and don’t want to hurt. I left so many friends back home in Boston, my surprise going away party that was thrown for me, I don’t even know how many showed up throughout the night, maybe 50? 60? Back home in Boston we don’t call each other friends, we call each other family, and I want to be able to see all my family one day again and go out on the boats with them and talk about the old days.
My father and I with Nacho from the tv show The Wahlburgers.
The drive out to North Carolina wasn’t so bad, was kind of fun, however somewhere in Illinois on a Monday evening I ran out of portable oxygen. Now I had my machine that makes oxygen for me that I plug into the hotels with and sleep at night, however the portable oxygen was for the days when we are driving. Well bummer, all the Apria Healthcare in the area had just closed at 6pm, and the next day being Tuesday was July 4th, so they were closed then, this left us to camp out in a motel until Apria reopens Wednesday morning. Not too bad, right? Well the AirBnb’s I paid for and booked for each night are now shot, no refund on any of them because they require 5 days in advance, and when you are late for one, you are going be late for the rest, domino effect. Lost a good amount of money in AirBnb’s. Lesson learned, sometimes it’s best to go old school and stick with motels. So, it took a little longer than expected, we left on a Sunday and planned on arriving on Tuesday, but arrived on Thursday evening. But hey we made it right! Nice part is that I am now at sea level, my oxygen in take went from 6L down to 2L at rest, I knew I would not be able to get off oxygen all the time, but 6L down to 2L is nice.
Now I have a friend that is a social worker and she was telling me how it maddens her to say, that it is a very sad truth- that part of being put on the transplant list is dependent upon knowing the patient has the funds to cover the process. Most of the transplant itself is covered by insurance, but there are many additional costs that are connected to the process that have no coverage. Our moving company for all our furniture, $4900. My father’s car shipped, $750. Gas and food for the three-day trip, $500. Duke requires that myself and at least one other (my father) also live here and they may require a 2nd, so total of three people here. Right now, we are going on 25 days in a hotel, over $1900 because we cannot find a house to rent. We landed on one house, turns out they have no internet at all. I didn’t think that was possible in 2017, not a single cable company delivers internet to that address, the only option was your cell phone hot spot. Other houses were dated and moldy which is not good for me. We also need a ranch style house as my father has 2 slipped discs in his back and I can’t breathe, so stairs are very hard. Fenced in back yard for Fenway so that if my father goes to work, I can easily let her outside. I cannot strap on my oxygen and just take her for a walk anymore, this humidity makes it very tough to breathe also. Cost of rent, cost of food, transportation, uncovered transplant medications, and unforeseen hospitalizations while here. Need to remember my father cannot work full time as he needs to be home for me a lot of the time helping me out with medications and cooking and other things, CF not only sucks the air out of you, but also the energy. Speaking of which, if anyone has information on becoming a caretaker, please let me know, that might be a better situation for my father during this process. Basically, if he becomes a caretaker, then he is a caretaker 24/7, he cannot work while care-taking, thus the hospital asking us now to reach out and fundraiser to make this life changing surgery and process possible. Please consider donating to my hope for a healthy future so that I can watch my baby girl Fenway nurture in a beautiful woman, so that I can out live my father and have a family one day, maybe travel back to Boston and take ride on the boats that all my friends now have. It would mean the world to my family and me. Thank you.
Vail bike ride, beautiful views and great part is they bring you and the bike to the top of the mountain and you just coast the entire way down. There are a few flat spots of peddling and i struggled, times of us having to stop for me. I cannot wait to get back and do this same bike ride with new lungs and see what its like then!
One of my best friends Bobby (middle-left) getting married, those are his best men up there. Great time with great people.
Thank you again for taking the time to read this. I will update as much as I can and post updated pictures, I am not a fan of taking pictures of me bed ridden, oxygen on and IVs in me. This is something I have been working on and doing much better at. Please do not forget to check out my blog and another way to get back to this fundraiser at www.justbreathechris.com
Information on Cystic Fibrosis can be found here-CFF.org