In September 1998, I woke up in the middle of the night with pain in my right lung – as if someone was stabbing me. By December 1998, I was diagnosed with Sarcoidosis in my lungs. Sarcoidosis causes persistent nodular inflammation (swelling) of the tissues. The most common tissues affected by Sarcoidosis are lungs, lymph nodes, eyes, skin, liver, spleen, heart, or almost any tissue or organ of the body. The cause of Sarcoidosis is still unknown. It was once thought to be a form of tuberculosis, but this is now known not to be the case. Most evidence suggests that Sarcoidosis represents a reaction of the body to some unidentified environmental agent or agents. Sarcoidosis can be a mild or a severe disease. Even with fairly extensive Sarcoidosis, people can usually continue to work. However, if Sarcoidosis enters a chronic stage, as in my case, lung insufficiency can be disabling. Some people can have Sarcoidosis and never even know it. The only medications that are known to help with the excess coughing and shortness of breath are steroids, and when you are in stage four as I was, do not work.
From 1998 until April 2005, I continued to work, raise our two girls and live as normal of a life as I was capable of. I had many flare-ups during this time, each time taking high doses of steroids, which had many, many side effects for me. For about the last three years prior to the transplant, I couldn’t even function to get out of bed until one or two in the afternoon. By April 2005, I was put off work and have never worked since. Even though I was on oxygen since December 2009, it was difficult to do the everyday things like dressing, showering, and even eating. The non-stop coughing and shortness of breath were terrible. From August of 2010, I had lung infections more than I did not, and my pain was agonizing. I continued to go downhill, and by the time I had an assessment at Toronto General Hospital in November 2011, I knew time was getting shorter.
I struggled so much with the decision to travel to Toronto for a lung transplant. My family and friends advised me to have it because it could give me many more years of living. For me, the statistics of surviving a lung transplant, at that time, were only fifty percent survival for five years. What if I could survive another five years without the transplant? Fortunately for me, I became aware of the New Brunswick Lung Association, who listened to all my fears, tears and struggles. Any information that I gleaned from the Transplant process I passed on to the NB Lung Association. Their “Lung Transplant Guide for New Brunswickers” is a valuable information resource to navigate through this journey. To this day, I still am a member of the NB Lung Association and continue to volunteer at events, and some day know I will be able to participate in the events that happen.
May 15th, 2012, my husband and I arrived in Toronto from New Brunswick to await a suitable donor. We left behind Our families: two daughters aged 26 & 22, a son-in-law, a beautiful 10-month old baby granddaughter, our siblings and their families and a multitude of friends.
In August 2012, I was put on the “critical list” and continued to wait. I have an A- blood type and required an A+ or A- match, and of course the size of the lungs had to fit my chest cavity. My ability to do much was substantially limited. The waiting from May to November 17/18 was unbearable, but in the end, the wait was so worth it. When I woke for the first time on November 18th, I knew I made it!
Every day when I see my scar, I remember that a stranger gave me a new life! I breathe, live and walk around because of that stranger. I laugh, cry, sing, play and be with my family and friends. I will remember that stranger for the rest of my life – hopefully at least for the next 30 years. I try hard to live my “second” chance at life doing all the things I can: travelling, living on a lake or ocean, and loving every second spent with our families, friends, our amazing girls, beautiful granddaughters, and hopefully more grandchildren.
It is said that when you have a lung transplant, you are living with a “different” disease. For me it was a great trade-off. I do struggle with side effects of the anti-rejection drugs, such as high creatinine, low white blood cells, low haemoglobin, low magnesium, continuous diarrhoea, and a few other issues, all side effects of the anti-rejection drugs. But I wake up every day and thank my Donor and his/her family, as well as God that I have another day to live. Regardless of the issues I live with because of the transplant, I am so grateful for not having to carry oxygen around in order to be able to breathe. Always believe, and never give up! Remember…when you can’t breathe Nothing else matters!