In April 2014, at the age of 30, I was diagnosed with Idiopathic Pulmonary Arterial Hypertension, a progressive, chronic circulatory lung disease with no cure. I was an ER nurse, wife, and mother of two children (ages 10 months and 4 years old at the time). I was eventually started on three medications that kept me stable until 2019, when my health started declining again, despite being on medication. The medications were no longer working and my disease began to rapidly progress. I had several hospitalizations, as I even got put on a continuous IV infusion at home. When that medicine didn’t work, we tried another IV medicine and it wasn’t working either. My heart was under a lot of stress and stretching from all the workload and inability of blood to be pumped against the resistance of the lung circulation. People with pulmonary hypertension die of heart failure, and my heart was heading in that direction quickly. I was advised in August 2019 to make an appointment to be worked up for transplant evaluation. I knew the requirement of having a transplant and that they would want me to bring two caregivers with me. I didn’t know how I would come up with two caregivers for me and then one for my kids. My husband worked full time and everyone but my mom worked also. Every time I thought about it, I would have extreme anxiety. Plus, I truly didn’t realize how sick I really was. So I pushed it aside temporarily so I could figure out a way to make it all work. I finally saw the transplant team at UNC in November 2019. That day, Dr. Lobo informed me I had likely 6 months or less to live based on my current condition and the stress on my heart. What an eye opener. Of course I cried because I didn’t realize I was terminal at that point. I thought seeing them to get worked up was a “just in case” I got to that point. Nope, I was already there.
I needed a double lung transplant to allow blood to be pumped through the lungs without resistance, and that most likely my heart would recover once this happened. I was admitted to be “fast tracked” through the lengthy evaluation process. By 11/26/2019, I was listed for double lung transplant. After two dry runs, I had my double lung transplant almost 5 months later, on 4/12/2020 (Easter Sunday).
I had to wear oxygen at night. My resting heart rate was 110-120, so anything I did made me feel like I was running a marathon. Even just walking around my house to make food or taking a shower. I pretty much lived on my couch and got up when I needed to or had to. My mom and her friend would clean my house and get groceries for me since my husband worked full time. After COVID, I had to do school at home with my kids up until my transplant. I required naps every day. Life was difficult in every way. I wasn’t able to give anyone the attention they needed, and all I could think about was breathing because it was so difficult. Talking even made me short of breath. All my kids could see was that I didn’t want to do much and I was no fun anymore. I turned 36 in January and my kids were 6 and 9. As any kids that age are, they fought a lot and it was difficult for me to yell or raise my voice when needed, or even discipline them. I was often frustrated with them and myself. My body was failing me at a time in my life when I needed it the most.
Having my transplant means I am cured of pulmonary hypertension. My last echocardiogram revealed a normal heart! My heart has bounced back and recovered! I was able to graduate pulmonary rehab 4 weeks early! I am able to walk/jog every day and do some time on my indoor exercise bike. I am now cleared to drive again. Being immunocompromised and COVID are my only factors inhibiting some of the fun things to do with my kids. But they have had to hear “keep up” or “you are being a slow poke” and they just smile ear to ear because they are used to having to wait on me being so slow, not them being the slow ones! My resting heart rate is normal, 80-90 beats per minute, and that makes a world of difference in my anxiety level. We have been hiking, walked 5 miles at the zoo (without a break), and been on many neighborhood walks. They enjoy being active with me and are happy every time they see me trying to jog. I often take our golden doodle on walks with us when it isn’t too hot. She used to keep me company on the couch. Now she is my walking buddy.
My goal is to walk/run (as much as possible) a 5k in the spring at a local event (Run5Feed5) that raises money for hungry children in my community. I plan to live life to the fullest and enjoy every day that I have my health back! Having a transplant has given my kids their mom back! And my husband isn’t now working full time while trying to care for all three of us. They all have been through so much watching me get sicker and sicker, and I am so thankful my faith kept me going before transplant. It was my hope every day. I had days where I felt like I could die any day in the days before my transplant. I prayed every single day for my potential donor and their family. I prayed for God’s will above my own, but I also talked to God often about what I wanted. I wanted to raise my kids and have more time with all of my family. I truly felt like I was walking in the shadow of death, and was leaning on my faith and trust in the Lord to get me through that day, not knowing what the next day held. Some bible verses that I held close to my heart are Psalms 23:4, psalms 27:14, psalms 31:7, Nachum 1:7, and James 1:2-3, amongst others.
It is a hard thing to know you can only live if someone else dies and donates their organs. It is best to see it as an opportunity to give and receive a gift of life. And I truly got a big gift on Easter Sunday when I got my donor’s lungs! Because of God and my donor, I can live to raise and love on my kids and be the wife I want to be for my husband! And I will continue to do the Lord’s work for as long as these lungs allow me! I am forever grateful for this gift and will always remember my donor and family for their selfless gift. I pray for God to bless the family for their gracious and timely gift in the midst of their tragedy. I am also grateful for the role of HonorBridge in coordinating transplants. My transplant wouldn’t be possible without them. I have had so many come alongside me in support through this, and I am thankful for each of them! I couldn’t have done this so well without them all! I am alive and well today, and that is a miracle!
(Public Facebook page: Mandy’s Miracle, Double Lung Transplant)