A note from Taylor's Gift Foundation: In honor of National Cystic Fibrosis Awareness Month, we are re-sharing this beautiful story written by Denni Cheney, who is the mother of Morgan, a young lady diagnosed with cystic fibrosis who received a double-lung transplant. Read about her inspiring story below!
This story feels like a dream and I’m still wondering if the reality of it will ever really sink in.
It began on February 1, 1990 when a beautiful baby girl, named Morgan, was born to two loving parents, who were young and excited about becoming new parents. Never did they think about what the next 26 years would bring. As we took our beautiful baby Morgan home from the hospital, we knew something was wrong, but had no idea what is was. We took her to five different doctors and they had no idea either.
Finally, when Morgan was two years-old, a doctor wanted to test her for cystic fibrosis. We had no idea what that was and at that time, Google did not exist to help us figure it out! Our hearts hurt as we waited to find out the results. Our fear became a reality once she was diagnosed with cystic fibrosis in 1992.
Of course, had I known what cystic fibrosis was, I could have diagnosed her the day she was born. My family is very large and yet Morgan is the only one who has cystic fibrosis. As we educated ourselves with
what the future would hold, we had hope that she would only have to deal with this disease for a few years. Everyone we talked to was sure there would be a cure within a few years of her being diagnosed!
“What a relief”, we thought, “she would be cured from this disease before she started kindergarten!” Well, she started kindergarten, middle school, high school, college, and graduate school, but no cure! We were disappointed throughout this time, but we found a new faith in God, and a new way of life. We were determined not to let cystic fibrosis stop Morgan from living life to the fullest!
In fact, most people never even knew she had cystic fibrosis, not even close friends. When the school asked questions about her health I would say, “Totally healthy, just has a few stomach issues and needs to take some enzymes with lunch or a snack". I never wanted to write the words "cystic fibrosis" on paper because then it would become a reality, I thought, if I never told anyone about this disease then it wasn't really happening! Not many people knew what was going on with Morgan because I didn't want her to be labeled, “The girl with cystic fibrosis". I truly felt like this was her story to tell when she wanted to tell it.
Now, here we are 26 years later and never dreamed that our baby would have to have an emergency lung transplant! Growing up, she didn't have a lot of trouble with her lungs, it was always her pancreas that would have issues. We never talked about a lung transplant. We were so used to her cough that we really never heard it anymore and never realized how sick she was getting!
Until March 26, 2016. Morgan had started her student teaching and got sick during spring break. She had been sick before and always healed within a week or so but this time it was different. She wasn't getting better; she was getting worse.
We took her to the emergency room and things didn't get better. They had to put her on oxygen and then they put her in an induced medical coma. It all happened so fast! Our faith was being tested. My husband told the doctor "if you can't help her let us know and we will go somewhere else". I was thinking he was overreacting, she'll be fine. “We'll start a stronger antibiotic and head home in a couple of days,” I thought! Our son was calling from college wondering if he should come home to be with us and see her. I said, "Oh no, she'll be fine, we'll be home in a few days". My husband, on the other hand, told him he needed to come home right away.
Easter Sunday came and went and she was still in a coma. My brothers and their wives came to the hospital to pray over Morgan and ask God to heal her body and give her the strength to fight and come back to us as strong as ever. Monday morning the doctor came to us and said there was nothing else they could do for her, but if we were willing to go to a hospital in Phoenix, AZ they were waiting for us.
(Morgan in the air ambulance.)
Of course, we said we'd go, and asked when do we leave!? He said to hurry home grab a bag and a shower, they are coming for you and Morgan in an air ambulance, and that there would only room for Morgan and I. My husband and brother headed to the airport, my son was in-flight but had a layover, we caught him and sent him to the Phoenix airport while other family members started driving. We all live in New Mexico so the drive is about six hours.
We were delayed for reasons I still don't know, so as we were in the airplane things seemed to get worse. They were suctioning mucus that has now turned to blood. I sat and watched in disbelief! How could this be happening? We got to the hospital several hours late, a lung transplant team was waiting for us, wondering what had happened to us.
What was supposed to be an evaluation, soon turned to something so much more! I signed all sorts of papers and they took Morgan to surgery to start on the ECMO machine (a machine that helps pump blood through the body), I had no idea what that was. They wanted to rest her lungs to see what they should do next. We were determined to have them save her lungs, she was just out hiking a few weeks ago, she’ll be fine, won’t she?
They looked at us like we were crazy. The transplant team had several meetings with us to discuss a possible transplant. My head was spinning. How could this happen so fast? We had never talked about a transplant. Our son began questioning us, why didn't we talk about a transplant? Would Morgan want a transplant? Why didn't we talk to her about it? Of course she would want a transplant.
She was getting her masters degree in elementary education, she was student teaching and loved it! We kept asking them to save her lungs, they kept looking at us like we were crazy! Realizing the inevitable, we signed all the forms for a transplant. We thought it would be months before we would receive new lungs.
During the same week we started posting Morgan's progress on a site called CaringBridge.org. On April 2nd, 2016, I asked our family, friends, and friends of friends to pray for Morgan at exactly 2:01 p.m, since Morgan was born at 2:01 a.m., asking God to heal Morgan's lungs or give her new lungs, or to prepare us for His plan instead of our own.
After we all prayed over Morgan, the doctors wanted her to rest so we left her room and sat in the waiting room. About 20 minutes later the doctor came in and said, "We have lungs for your baby!”
(Morgan's lungs, before, on the left, and after the transplant, on the right.)
We were in complete shock and overcome with emotion! God answered our prayers and was giving Morgan new lungs and our family a renewed sense of peace, knowing this was the right way to heal her body. She received her first lung late Saturday night and the second, early Sunday morning, one week after Easter Sunday! Praise God!
Now, three months later Morgan is doing well and healing from her emergency transplant. There have been a few bumps in the road, but that is to be expected. Unfortunately, we won't be able to meet the donor family until next year. We are so anxious to meet them, thank them, and give them a big hug. We know that the same day we got the news that Morgan was getting new lungs they got the news that their loved one was not going to make it. I can only imagine the sadness they must have felt.
We've always said yes to the question on the driver's license, "Would you like to be an organ donor?” I have always said, “Yes,” because, why not?! Now I know why not. This question now means so much more! You can save a life of a beautiful person who has lived their life fighting a life threatening disease!
We are thankful for so many individuals who helped Morgan and our family through this time. To the doctor who literally saved Morgan's life by sending us to one of the top transplant hospitals in the country. To the transplant team who listened to us and just nodded when we were relentless asking them to just save her lungs! To the donor family, who doesn't know us but I hope in their hearts they know their loved one’s lungs have given a young woman a new life. And to my cousin, Sara who sent me the song, "We Are Waiting" by All Sons & Daughters. I listened to it every night and also put it next to Morgan so she could hear it as well. It gave me strength when I didn't have any left! And of course, to God above for staying with us, even when we questioned our faith and struggled along the way.
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future.” (Jeremiah 29:11)