Ryan MacPherson

New Lungs for a New Life

On Friday, the 18th of June, 2004, I was officially added to the lung transplant waiting list at the Toronto General Hospital. I had made it through 21 years and 7 months of my life on my own, but I finally ceded that CF had completely taken over my life, and so I essentially turned my life over to the hands of doctors and staff of the Lung Transplant team.

Cystic Fibrosis is a genetically inherited disease that presently afflicts more than 3500 Canadians. It’s the highest genetic disease in children. It’s believed that one person in 25 is a carrier of this disease. People with Cystic Fibrosis are affected in two major ways: in the lungs and in the digestive system. In the digestive system, a defect in the pancreas results in a lack of enzyme production. Enzymes are what break down food so that it can be absorbed by the body. If food isn’t broken down, it isn’t absorbed and passes through unused. Also, thick, sticky mucus lines the walls of the digestive system making food absorption even more difficult. This means that people with CF must take enzyme pills to help digest their food, and are still almost always underweight. Most also take supplements and extra vitamins just to help reach a normal weight. The more severe affliction of CF is in the pulmonary system (lungs). CF causes a defect in the cells that line the surface of the lungs. Due to this defect, thick mucus accumulates in the airways and sacs in the lungs and clogs them. Over time sections of the lungs become scarred, due to factors such as infection or lack of oxygen. Sections of the lungs eventually become unusable and die off. For people with CF, this lung disease is the highest cause of death.

For most of my life, Cystic Fibrosis wasn’t about not being able to breathe; people can’t see bad lungs. For me, it was trying to explain to the other kids when I was in public school why I had to take a handful of pills with my lunch, when I barely understood why myself. It was going to high school and trying to be late to gym class so I could get changed without anyone noticing how skinny I was. Mostly though, it was the pills. Pills for breakfast, pills for lunch and dinner; time for a snack? Let’s have some more pills! And these pills aren’t small either. An average day now goes something like this: for a typical breakfast I have to take 4-5 enzyme pills and a chewable multivitamin pill. For lunch I have to take another 4-5 enzyme pills, just as I do for dinner, except then I have to take another multivitamin. Any snacks I have throughout the day require 2 or 3 enzyme pills. So if I add in a snack or two, each day I’m looking at approximately 20-25 pills. While taking pills was a constant, the other major aspect of my CF was pulmonary therapy. I would have to sit with a mask on and breathe in various drugs to expand my airways, and then my parents would do chest percussions on me to help loosen the thick mucus in my lungs so I could clear it out by coughing.

Around the age of 10 I went to a CF camp. I was there for a week, and had a lot of fun doing various activities with other kids that were just like me. It was great to be at a place where every other kid had to take pills with meals, or do therapy twice a day. It wasn’t until years later that I was told that while I was at this CF camp, I was infected with a type of bacteria. It’s easily transmitted from one CF person to another, and close contact with many other CF people at camp was likely how I had contracted it. This family of bacteria, Burkholderia cepacia, while essentially harmless to anyone else, can be devastating to people with CF. In the lungs of a person with CF, the extra thick mucus provides the perfect living environment for the bacteria. While the bacteria may lie in dormancy for months or years, if it becomes active and begins to grow, the results can be deadly. The bacteria can not be killed by any antibiotics; it takes a combination of multiple antibiotics given in precise doses just to decrease the infection, and return it to dormancy. It can quickly turn a stable CF person very ill, decreasing lung function and their ability to get enough oxygen. In certain cases, the bacteria can enter the bloodstream in what is known as ‘cepacia syndrome’ and affect the entire body.

Throughout high school and into my first years of college, I began to notice a decline in my lung function. I began to take my medications and therapies more seriously, but was still able to do everything a normal guy at that age would want to do, right up until late December of 2003. My holiday season began with a runny nose and a dry hacking cough with a sore throat. Unfortunately, I did not know I had contracted a strain of the flu, and this flu activated my cepacia infection. Within days of having mild cold symptoms, I had a fever of 104° F, a cough deep into my chest, headaches, and nausea. I could barely sleep at night, and in spite of all of this I was still trying to work at my student job at Stelco in Nanticoke so that I would have money for the next school semester.

On the morning I was admitted to hospital, I was taking up to 20 minutes just to get dressed. Walking out of my house to my car put me completely out of breath. I didn’t know it then, but my oxygen levels had dropped so low that I was likely on the verge of blacking out. On the half hour drive to work, I had to fight just to stay awake and alert. When I got to work that day, just walking in to the office to clock in left me winded. I couldn’t stop coughing, and I couldn’t get enough air. I began to panic, and that only made things worse. At that point I was taken to the medical department, and arrangements were made for my ambulance ride to West Haldimand General Hospital in Hagersville.

I stayed in the hospital for ten days, and was put on oxygen to help me breathe easier, two IV antibiotics and two oral antibiotics to combat the infection, as well as increasing my regular therapies. When I was released from the hospital, the doctor at the CF clinic I attend in Hamilton decided to continue me on one of the IV antibiotics for another ten days, along with both of the oral antibiotics, and to continue the increased level of therapy. However, all of that was not enough. My lung function wasn’t improving, I was on oxygen all the time, and I didn’t feel any better. It was because of this that I was admitted to the Cardio-respiratory critical care unit at McMaster University Medical Centre in Hamilton. My stay there lasted 8 days, and involved more aggressive therapy, more IV antibiotics (this time through a longer lasting line that fed into my arm, went through my veins, and ended somewhere in my shoulder), and various tests – ECG’s, EKG’s, CAT scans, ultrasounds, x-rays, and more.

Since then my situation has improved some. I’m able to go out for brief amounts of time without oxygen, but I wear it all the time at home. Most times when I go out I carry a portable tank with me. I’m still on 2 different oral antibiotics to keep the infection under control. Each morning I spend about 45 minutes with my inhaled medications, and about an hour in the evening. I take 3 different puffers multiple times each day. I have breathing exercises that I do, and my parents still do chest percussions on me. They’ve even taught my girlfriend how to do them so I don’t have an excuse to not get it done.

A double lung transplant is my only chance at a ‘normal’ life. I want to return to college and complete the last 3 semesters of the computer technologist program I was in. I want to have a home, and a family, and live life to its fullest, and a lung transplant will make all of that possible for me.
I suppose some people would be scared of such an operation. Some people might even be intimidated by the amount of tests and preparation I’ve already been through just to be placed on the list. Others might dread the thought of all the recovery and work after the operation. In my case, I have moments where I’m scared or afraid, and I think to myself “How am I ever going to make it through this?” Luckily enough, I am very blessed with immense support from the people around me. My family and friends have been more understanding than I ever thought possible, and without them I don’t think I could do any of this. I have been shocked many times at the goodwill and support from people I know, and even more surprised from those I don’t, and I suspect that will continue as time goes on. I am very grateful that I have come this far in my life and that I have been given a chance at a new life just by being added to the transplant waiting list.

Ryan MacPherson
June 26, 2004

Ryan now carries a pager while waiting for his new lungs. Once his pager goes off, he will have two hours to get to Toronto General Hospital. As his dad works at Stelco-Hilton in Hamilton, and I, his mom, reside at home in Selkirk, Ryan keeps close to him the numerous numbers, such as cell phone numbers and extensions, so that he can quickly contact his family when the call comes from Toronto. A travel plan with a designated spot for everyone to meet at to travel to Toronto General Hospital together has been created, so that Ryan can quickly get together with his family members and make his way to the hospital. Until the call comes, Ryan and his support team must travel to Toronto three times a week, both for checkup appointments and clinics, and for the rigorous exercise program he is on to keep his cardiovascular systems working.

An account for Ryan has been set up at the Royal Bank branch in Hagersville, in the name of "Ryan's New Lungs New Life Fund". We are trying to arrange fundraisers or donations to ease the high cost in dealing with expenses. If you would like to help us out financially with arranging a fundraiser or making a donation, it would be greatly appreciated.

Approximate expenses are as follows:

Pre-Transplant:

» Toronto General Hospital Parking

$19/day for approx. 80 days $1520.00

» Fuel and related costs $ 800.00

» Exercise equipment

Treadmill & related equip. $2000.00

Post-Transplant

» Medication and hospital fees $ ??

» Hotel and food (Approx. 4 weeks) $3300.00

» Toronto General Hospital Parking $ 400.00

» Medical equipment

Spirometer, oximeter $2000.00

» Checkups & appointments

Parking, fuel for approx. 90 days $2600.00

Ryan's personal expenses $ ??

(Ryan will not be able to work for a minimum of one year after his operation)

For more information, feel free to contact me with questions at (905)776-5119

Thanking you for your support,

Renée Jones

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