My Lungs Expand With His Praise
Interview with an organ recipient
I bless God every chance I get; my lungs expand with his praise. I live and breathe God; if things aren’t going well, hear this and be happy: Join me in spreading the news; together let’s get the word out” (Ps. 34:1-3, Message).1
This passage has become Ilyn Clarke’s favorite—and for good reason. On February 7, 2013, she celebrated six years as a double-lung transplant recipient. Hers is an amazing story of faith in a God who has allowed her the incredible opportunity to breathe and move again without pain.
To mark this anniversary of her “new” life, Clarke—currently a registered nurse at the Princess Margaret Hospital in Toronto, Ontario, Canada—agreed to share her story with Maria McClean, director of health and children’s ministries for the Ontario Conference of Seventh-day Adventists and health coordinator for the Seventh-day Adventist Church in Canada. Clarke’s prayer is that God will use her experience to testify of His faithfulness to His children.—Editors.
RAISING AWARENESS: Ilyn Clarke and Maria McClean hope to raise awareness of the need of organ donors through the telling of Ilyn’s story.
SHARING HER STORY: Ilyn Clarke, a double-lung transplant recipient (left), shares her story with the Seventh-day Adventist Church in Canada health coordinator, Maria McClean.
AN ARDUOUS JOURNEY: Maria McClean (left), Seventh-day Adventist Church in Canada Health coordinator, talks to organ recipient Llyn Clarke about Clarke’s many-year struggle with lung disease.
McClean: When was the first time you recognized that something was wrong with your lungs?
Clarke: I didn’t exhibit symptoms of lung issues at first. When I was a child, I had severe muscle cramps in my legs and arms. In my late teens and early 20s investigation [as to the cause] was started because of my constant abnormal blood work and continuous muscle cramps.
What tests did you undergo, and what was the initial diagnosis?
Testing at this stage was focused on what was causing the muscle cramps and elevated muscle enzymes. Eventually, I had a muscle biopsy done and was diagnosed with malignant hyperthermia (MH).
What treatments were you given, and how effective were they?
I was given dantrolene tablets for the muscle cramps. I took the pills, but stopped after a week because they made my muscles relax so much that I could hardly walk. Later, I developed Raynaud’s syndrome, a condition that affects circulation. I was given blood pressure medication to relax my blood vessels in order to have better blood flow to my extremities. In my mid-30s I had another muscle biopsy. The result came back perfectly normal. The doctors thought for sure they would have a diagnosis. Instead they were more puzzled than ever.
During this period of investigation,my face started to swell for no apparent reason. My eyelids were so swollen that I had to lift them to see. I was tested for every possible allergy. The only allergy I had was environmental in nature. I was a medical mystery. It took about six months for the swelling to resolve, and no definitive diagnosis was made. Because I’m an operating-room nurse, the anesthetists with whom I worked decided to study my case. After examining all my lab tests, muscle biopsy reports, and other symptoms with which I had presented over the years, they concluded that I did not have MH.
Tell me about your experience at the Toronto General Hospital (TGH), where you were employed at the time. [TGH is one of three hospital campuses that comprise the University Health Network (UHN)].
One of the benefits of working in a world-class academic medical institution is that there are always people willing to take on a challenge.
I started having greater difficulty digesting my meals. In my later teens I had noticed on occasion that I had problems with what appeared to be slow digestion. This persisted as I aged and while working at TGH. I consulted one of the surgeons there. He booked me for a gastroscopy and a gastrointestinal (GI) motility test. These tests revealed that I had decreased motility between my esophagus and stomach. I was sent to a rheumatologist and a pulmonologist. Eventually, I was diagnosed with mixed connective tissue disease. There was nothing the doctors could do but treat symptoms as they arose. They told me I had handed them a deck of cards that made no sense.
After working at TGH, you decided to relocate to North Carolina. What prompted this move?
In 1999, after working for 13 years for UHN, I decided to relocate to North Carolina to enjoy warmer weather. The cold winters caused much pain and discomfort to my extremities. I was employed in the operating room at Duke University Hospital in Durham.
At what point did you notice respiratory changes?
In the summer of 2004 I began having shortness of breath, which I attributed to humid weather. By the fall I had developed a productive cough, which was treated with antibiotics, but the coughing would return every few weeks accompanied by laryngitis [hoarseness] and extreme fatigue. Getting things done required extra energy and time. The shortness of breath also affected my rest. I spent the first weekend in March 2005 in bed sleeping in a sitting position, because every time I tried to lie on my bed I felt I would drown from the fluid in my lungs. I went to work the following Monday but was wheezing and became completely hoarse throughout the day. I decided to go to the emergency room for treatment. From there I was admitted to the hospital after being diagnosed with pulmonary hypertension (PH).
What happened next?
After I was discharged I was given medication to control the PH and then returned to work. I felt great, and life resumed as usual. This good feeling lasted for about a year. I then started slowing down again and experienced severe muscle cramps as well as shortness of breath on exertion. I was placed on experimental drugs and told that I needed to be on oxygen 24/7. I was still working at this time, and no one knew how sick I was because I had become very skilled at concealing my illness. When my shift finished, I would head to my car, connect to the oxygen, and drive home. I would also experience periods of syncope [fainting] after a prolonged coughing spell. I lived alone, and whenever I felt I was going to faint I would lie on the floor so I wouldn’t hurt myself. Not once did I cough or lose consciousness while driving, however. That was a miracle in itself. I fainted twice at work in October 2006. The first time, I was about to start an intravenous line in a patient, but collapsed on the floor. I was able to recover, complete the procedure, and finish the 12-hour shift. After the second incident I was transferred to the emergency room. That was my last day of work in North Carolina.
How was your faith during this period, and how did these incidents influence your decision to return to Canada?
My faith remained strong. I always believed my life was in God’s hand. Whatever He decided was fine with me. I knew angels were constantly protecting me. I was never afraid. And although there was no good news coming from my doctors, God kept me calm because I knew He was in control. I also knew I had to return to Canada. That was not an option. I prayed for strength to make it through each day so I could accomplish what was needed to facilitate the return to my family in Canada. God honored that request. He put incredible, unselfish friends in place to take over and orchestrate my move.
When did you learn of a donor?
At the end of November 2006 I returned to Canada. I was seen by my former pulmonologist, who had received all my medical records from Duke Hospital. He arranged for me to consult the lung-transplant team for an assessment to determine if I were a possible candidate. It was imperative that something be done because my health was deteriorating rapidly. I experienced another fainting spell in January 2007 and sustained a broken right ankle. I lost my appetite and a significant amount of weight. Eventually, I was placed on the waiting list for a transplant. Nine days after that decision was made, we received the call that compatible donor lungs were available. On February 7, 2007, I received those lungs at Toronto General Hospital in an operation that lasted six hours. God be praised!
Amen! Tell me about the team that performed your operation. And how was the recovery period?
I was blessed to know the team that performed my transplant because they were colleagues with whom I had worked previously—literally the cream of the crop. This was no coincidence; this was part of God’s amazing plan. My immediate recovery was slow because of a nosocomial [hospital-acquired] infection that delayed my discharge for a month. It was nine months before my incision closed properly, largely because my immune system was so compromised. By September 2008 I had regained enough strength to return to work in the operating room on a part-time basis.
Thankfully, I have not experienced any episodes of rejection to date. Living with donor lungs means that I will be taking antirejection medication for life—some 18 different types twice daily. Many of the medications are to offset side effects of other drugs that are included in my regimen. In the absence of an adequate drug plan my medications are costly, but God is faithful and continues to “supply all [my] need according to His riches in glory by Christ Jesus” [Phil. 4:19, NKJV].2
Praise God for His faithfulness! Can you please comment on organ donation?
There is a great need for organ donors worldwide. According to the Trillium Gift of Life Network,3 there are currently 1,500 people in Canada on the waiting list for organ transplantation. Hundreds of people die every year while waiting for transplants. [In Canada] it’s not enough to sign a donor card; those interested in becoming donors must be registered online as well.4 Organ donation offers the gift of life to people like me. Information about my donor remains private, but God alone knows how truly grateful I am to this individual for consenting, and his or her family for honoring, the request to donate organs that have given me this tremendous opportunity to continue fulfilling God’s plans for my life.
It has been a comfort and joy knowing Christ as my personal Savior during this whole ordeal. If I did not believe God was real, I wouldn’t have made it. Having a great sense of humor also helps. It comes in handy when I have to comfort those who come to comfort me!
I praise God for family who took care of me and the friends and well-wishers who prayed with me and blessed me tangibly throughout this experience. The only outward sign of my transplant is the Medic Alert necklaceI wear. But inside my ribcage are two lungs that joyfully “expand with His praise.”And I look forward to continuing this praise song all through eternity—with the help of an immortal pair of lungs in an immortal body. Awesome! Awesome God!
Someone died; now you live. Jesus died; now He lives. And because of His death, we can live forever.
- Texts credited to Message are from The Message. Copyright © 1993, 1994, 1995, 1996, 2000, 2001, 2002. Used by permission of NavPress Publishing Group.
- Texts credited to NKJV are from the New King James Version. Copyright © 1979, 1980, 1982 by Thomas Nelson, Inc. Used by permission. All rights reserved.
- To find out more or to register as an organ donor in Canada, go to beadonor.ca. In the United States go to www.organdonor.gov/becomingdonor/index.html.