My dear friends and readers, this is not a post that I have been looking forward to writing or sharing. I have mentioned that my family has been navigating some challenging circumstances and that my parents have temporarily relocated to Durham, North Carolina where my mom is receiving medical care at Duke. I would like to talk a little more about what is going on because it is having a significant impact on my life and my work, and because I would like to ask for your prayers. I also hope that sharing our story can help other families and individuals in similar situations.
I want to say something before I begin. Throughout my 13 years of blogging, one thing I have consistently found difficult is how much to share when it comes to personal matters. This is especially true when they extend beyond me and involve people that I care about (which they almost always do in one way or another). As most of you know, I tend to err on the side of more privacy until it feels right to disclose more. In regards to this matter, my heart has been telling me for weeks that time has come.
THE DIAGNOSIS THAT ROCKED OUR WORLDS
This is a long story that starts over three years ago. While this is the first that you are hearing of it, it’s something that has deeply colored the last few years of my life, my motherhood journey and my relationship with my family. For this post, I am mostly going to stick with the facts and not go to deep into the emotional side of it because it’s about all I can handle right now.
In September 2018, my mom was diagnosed with Idiopathic Pulmonary Fibrosis. Finn and I were in Florida and on the final evening of our trip my parents sat my grandmother and me down after dinner and broke the news of the diagnosis. I remember my dad explaining that it was a progressive lung disease with no cure and encouraging me to stay off Google. I was in shock. Finn was just four months old and she had been such a huge support to me in his birth and the first few months of his life. My mom and I had always been close but I felt our relationship had deepened to this whole new level…and now I was being told she had a terminal disease. I didn’t sleep at all that night. I’ll never forget lying in bed holding tight to Finn while he slept directly on top of me. I was a wreck returning home to Charlotte.
WHAT IS PULMONARY FIBROSIS
Pulmonary fibrosis is a disease where lung tissue becomes damaged and scarred, which makes it difficult to breathe. When it’s idiopathic, it means that the cause is unknown. Pulmonary fibrosis is a progressive lung disease that gets worse over time. As it worsens, you become more short of breath. No one can predict the path that a particular person’s pulmonary fibroses will take. For some people, it progresses quickly while others live with the disease for many years. The lung damage caused by pulmonary fibrosis cannot be repaired and there is currently no cure for the disease. You can read more about pulmonary fibrosis in the link above.
FINDING OUR NEW NORMAL
I won’t go into all the details of the last few years but after we all absorbed the initial shock of the diagnosis, we did our best to live with it. While my mom had to manage a lot of constant side effects of her disease, she was able to stay active and mostly maintain normalcy in her day-to-day life.
DEALING WITH ACCUTE EXACERBATION
Late this spring, my mom experienced an acute exacerbation of her pulmonary fibrosis. In a matter of weeks, she went from walking 2-3 miles and swimming laps for exercise to having difficulty walking short distances or doing any kind of household work. She was placed on around the clock supplemental oxygen therapy shortly thereafter and her condition continued to decline rapidly through the summer.
After a months-long frustrating experience with her medical team in Florida that involved provider changes we didn’t ask for, a complete lack of any sense of urgency, the inability to get a response from anyone, etc., we finally got what we needed to have her referred to Duke University to evaluate her candidacy for a lung transplant. We secured an appointment for September 23 and I went with my mom to that appointment. Some of you might remember that I flew down to Florida and accompanied mom back to Charlotte – that was the reason. My dad felt that it was important for me to have an active part in her care and important for me to fully understand her condition. It was hard and remains hard but it’s a great gift that he has given me. I will share more when I can, I just can’t right now.
GETTING TO DUKE
Her initial appointment was with Dr. Lake Morrison. He is a transplant pulmonologist at Duke. God bless this man because his immediate reaction upon meeting my mom was one of care and compassion. He was so concerned about how severe my mom’s illness was and ultimately played a huge part in expediting her candidacy for transplant and getting us to where we are now.
I brought my mom back to Charlotte after the appointment and we got a call the very next day that they wanted to begin her evaluation just one week later. My dad came to accompany her to the evaluation. He packed up as much as he could from home and he and their 14-year-old golden retriever Sam drove to Charlotte to pick up my mom and take her to Durham. We had no way of knowing if they’d be in Durham for a few days, a few months or half a year or more.
PREPARING FOR LUNG TRANSPLANT
The transplant evaluation went well and outside of my mom being extremely deconditioned, weak and underweight, they didn’t find anything to exclude her from transplant candidacy. The transplant team requested that my parents to temporarily relocate to Durham so that my mom could enroll in pulmonary rehab in an attempt to gain enough strength and weight to withstand the surgery.
On November 17, my mom completed 23 sessions of pulmonary rehab. In those sessions she built up endurance to walk a mile in 20 minutes, bike almost three miles in 20 minutes and worked on strength and flexibility. She successfully met the requirements of the transplant team and was listed on the United Network for Organ Sharing for a lung transplant on November 17. While she’s been waiting for the transplant, she continues to attend pulmonary rehab five days a week. I am so inspired by my mom’s tenacity as she’s tackled this extremely demanding program to get to where we are now.
The transplant team extends far beyond rehab, pulmonologists and surgeons. My mom (and our family) has been supported by social workers, psychologists, financial counselors, occupational therapists, dietitians and more. She has attended countless appointments and we’ve all done required educational classes for patients and caregivers. Duke requires signed caregiver contracts and my dad is primary and I am secondary.
WAITING FOR LUNG TRANSPLANT
The lung transplant program at Duke is one of the best in the country. They have performed over 2,000 transplants since their program started in 1992 and did 142 in 2020 alone. They have a shorter average waiting time of 15 days where the national average is 82. All that said, being listed has been an emotional roller coaster. We have had three “dry runs” where my mom has been called to the hospital and prepped for surgery but the donor lungs were not viable. We were made very aware that there was a strong likelihood of this happening but it is hard and emotionally, mentally and physically exhausting.
Where things stand now is that we are waiting. When my mom gets the call and the donor lungs are viable, I will head to Durham to be there with her in the ICU when she is out of surgery. Recovery varies greatly depending on the person but on average you are in the ICU for 3-5 days and then in a step-down unit for another few weeks. Hospitalization can extend for months in some circumstances but they want to get you home if possible because people recover better at home. “Home” will be Durham for several more months after the surgery as my mom is monitored by the transplant team and goes back into rehab to regain strength and the skills she needs to head back to Florida.
I know it goes without saying but this has been hard on our entire family. I constantly worry about my mom, my dad and my grandmother. We’ve all been so goal-focused of doing whatever it takes to get my mom to surgery but I’m always looking for cracks in the foundation and wanting to make sure everyone is okay as they can be.
WHERE DO WE GO FROM HERE?
This is just the tip of the iceberg when it comes to all that has transpired in the last few years. It’s been difficult not to talk about it on my blog because like I said at the beginning of the post, it’s had a huge impact on everything. For a long time I was processing everything and learning how to live with it. My mom wasn’t ready for it to be shared and it felt like something private to our family. Now is the time to bring it forward for several reasons. First, we have found so much strength and encouragement from connecting with others walking similar paths. Second, we’ve read so many blogs, forums and stories of others facing the same diagnosis and surgery and it’s been really helpful. I have a significant platform here and I’d love to be a resource and support to others facing IPF and also to my readers who have sick parents. Third, I believe in the power of prayer and we are asking for yours now.
I promise to keep you updated. <3