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
Love,
Jen
Long time reader Jen – started when I was living in Charlotte working in cardiac and pulmonary rehab. Now in the mid-Atlantic, i continued working in pulmonary rehab for several years and I can say I’ve seen several success stories of IPF with successful transplantation at UMD and Hopkins. Praying for success for your mom and support for your family. There is hope to be had!
I’ve been praying for all of you and will continue throughout this journey.
My late partner Del spent a great deal of time at Duke hospital and they are absolutely the best in everything. Their level of care and their mastery of the intangibles are without compare.
Longtime reader sending all of my love and support.
Thank you for sharing this, Jen! Your mom has been on our prayer list for several months and we will continue to lift all of you throughout this journey. Your mom has the best cheerleaders and caregivers on her side, add a dose of prayer warriors and I believe she WILL fully recover. ❤️?❤️
What a hard thing for you all to go through. I knew you were facing something really difficult and have been thinking of your family. My sister used to work at a transplant clinic so I know from hearing her talk about it how much of an emotional rollercoaster the process is. I hope and pray she gets an organ soon so you all can focus on recovery and gaining strength and some sense of normalcy. Thank goodness for great medical centers like Duke!!
Praying for your mom and family. I’m so sorry that you guys are going through this:(
Jen, praying so much for you, your mom, and your whole family, both for healing and for comfort in this time.
Thanks so much for your willingness to share. Sending all my love and prayers to your mama, you, and your entire family!!
Jen, I know that it must have been so hard to share this but I am grateful your mom is receiving the medical care she needs and I am sending prayers for your family. I am a long time reader of your blog and your journey through a lot of ups and downs in life has given me strength, so I hope to send some of that love and strength back to you.
Thank you for sharing this journey. I also believe in the power of prayer. Your mom will be in my prayers as will you and your family.
Sending prayers!
I’m a long time reader and admire your openness about some really hard things, Jenn. Please know that lots of folks are sending good thoughts for your mom and the rest of your family. (It feels weird to share this right now but I just made my first sourdough loaf today using your tutorial so you have been in my kitchen all day. Long story short, your posts impact us in so many wonderful ways!)
Thank you for sharing, Jen. Your mom looks like a beautiful lady and she sounds incredibly strong, tough and gracious. She is fortunate to have a great family with her as well. I will keep her in my prayers. Wishing all the best for you all.
Love and prayers to your mother and your entire family Jen.
Long time reader also. Many, many prayers for your mom and your family
So much love for you, your mum, dad and grandmother. So many years following you and even though I only know a little, you are such a strong person. I am sending you extra strength, hugs and the best of energy for you all.
Jen, I will pray for you and your family. I don’t have the words to express what I’m feeling for you, but know I think the world of you and am sending you love. I’m here for you if I can be of any help at any point. Happy to keep Finn, help with travel arrangements, anything. Love you. ♥️
Sending you and your family so much strength and well wishes. Your mom will be in my thoughts, and I’ll be praying for a successful lung transplant and speedy recovery. Lots of love to you!
Thoughts and prayers for you and your family
Such a hard journey! My prayers for your mom’s care and recovery, and for a supportive and caring environment for her loved ones. I know she’s in good hands at Duke where I received excellent care.
Jen, I’m so sorry you all are going through this. I am sending so much love to you and your family and you all have been and will remain in my thoughts ?
Sending love and light to you and your family, Jen. So sorry to hear about your Mom.
Oh wow. Praying for you all. Thank you for sharing. Definitely so much going on behind the scenes these last few years. I’m so glad you guys got her to Duke. ??
Long time reader Jen. Sending you and your family love, strength and support. ?
Jen – thank you so much for sharing this. My heart breaks for your family and I’m saying prayers for a viable lung transplant soon. I commend you for taking such an active role in your mother’s health. She is so lucky to have you, and yet another example of how great of a mother you are. Thank you for being vulnerable with your readers. I think a lot of people will be positively impacted by your sharing. Keeping you and your family in my heart and prayers.
I’m so sorry that you are all going through this experience but glad that you have each other to depend and lean on. Prayers to your mom, the rest of your family and the medical staff. Sometimes I forget how long I’ve been following your blog but I probably started a year before you got pregnant! The power of prayer and positive thinking can do wonders!
Long time reader and admirer. Sending prayers and positivity to your Mum and family.
Hi, long time trader – My son is about 3 days older than Finn and it has always made me feel connected to the things you share. I am so sorry to hear about what you have been going through with your mom and will be keeping your family in my thoughts.
I have a friend (with a slightly different diagnosis) that underwent a lung transplant at Duke about 4 years ago. She has been healthy and thriving since her transplant and my hope is that the medical team there is able to provide the same miracle for your mother. Although each situation is unique, I pray this information provides you with some peace knowing that this transplant has worked beautifully for others and can for your mom as well.
<3
So many good thoughts and prayers headed to your entire family!
I am a financial coordinator for kidney and liver transplants at a different center. You guys are in great hands at Duke. I will pray for you and your family, Jen. I hope she gets the call soon and has a successful transplant and quick healing afterwards. <3
Hi Jen, I have been a long time reader… since 2011! So inspired by your workouts. Praying for you all that you are able to find peace in this time. As a nurse, I can understand the complexity of this diagnosis, but cannot imagine the emotional journey that you have been on! Praying for a speedy and smooth recovery and a viable lung that is available!
John 14:27
Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid.
Long time reader. I patiently waited for an update and knew you’d fill your readers in when ready. Thank you for letting us in. I have a 10 year double lung transplant friend. I will be praying for healthy lungs to come your mom’s way. Your mom is a shining example why i check the donor box. You and Finn need many more years of her..
Hi Jen, I’m a longtime reader and am sending you and your family lots of support, prayers, and hugs during this very difficult journey. ❤
I’ve been reading your blog for a long time but have felt especially connected to you since your pregnancy and Finn was born since I was pregnant at the same time and my son was born a few weeks later. Prayers for you and your family. I pray your mom gets the call for her transplant soon.
Also, praying that you get the self-care and peace that you need during this time.
I don’t envy the position you’re in re: privacy and I will always respect however much you choose to share about anything in your life. IPF is an absolutely horrible disease – life is so random and unfair sometimes. I am so sorry. I am so glad you found a caring and progressive medical team – wishing your mom all the best going forward.
Sending love – and a great reminder of the incredible gift of signing up to be a doner xx
Sending much love, prayers and peace to you and your family during this time.
Jen, I’m so sorry to hear this, it breaks my heart. I’m praying for her healing, I’m praying for all of you. Stay strong!
Thank you for sharing your story with so much honesty, grace and courage. Sending lots of strength and healing energy to you and your family.
Hi Jen, so sorry about your mom’s diagnosis. I will keep you all in my prayers. Never easy when someone you deeply care about gets ill. Hope they find a lung transplant soon. Take care.
Thank you for sharing. Thinking of you and your family and praying for your mom’s healing.
Jen, thanks for sharing. I will keep you and your mom in my prayers. Sending love.
Prayers Jen, for your Mother, you and your entire family and the medical staff!!
Much Love!!
Jen, I am a long time reader and thank want to thank you for sharing this post. My husband has IPF and my heart goes out to you and your family. We have been on a similarly challenging and frightening road with a diagnosis for years and now more acute flare-ups. Sending loving thoughts to you and your mom as you wait for the transplant.
Praying for you and your family, and not giving up hope!
Praying for you and your family, Jen.
I’m so sorry. You are an amazing family ❤️
Lots of prayers all around ?
Thank you for sharing, Jen. Sending love.
Jen, sending so much love and thinking of you all. So appreciate you sharing your family’s story.
Keeping you and your family in my thoughts, Jen. You are a loving daughter, granddaughter, sister, aunt, and mother and are doing a great job.
Long time reader here too…I just want to say that I am so sorry for what your family is dealing with but, as the mother to grown children, I can tell you with absolute certainty that your support means the world to your mom. There is nothing more that she could want. I will certainly be keeping your mom and your family in my prayers. Best wishes to you all.
Another long time reader and big fan of you and your blog. I’ll be praying for you and your family as you navigate this difficult road.
I appreciate how difficult it was for you to share something so personal and emotional. Through reading your blog for many years, you have become a part of my daily life, and I hope you can draw upon the strength of all who feel the same way about you. You and your family will remain in my prayers. May God bless, keep, and comfort you.
Jen, I’ve been reading your blog for years and feel like I know you and your family. Seeing pictures of Fenn, Florida, your Grandmother, your mom and dad and his cooking skills has drawn me in and given me context to pray for you as you have navigated single parenthood and growing your career. I am proud to pray for you and family. The strength you display is amazing to witness. I am sending you all the support, love and prayers. Reach out if you need anything. I live close to your grandmother. Much love. Pam
Prayers for healing and recovery.
Prayers for your entire family <3
Jen, thank you for sharing what your family has been going through. You are so incredibly strong and your family is lucky to have a daughter like you. I’m praying for your mom’s transplant and recovery.
I hope that another benefit of you sharing this will be for others to consider the importance of organ donation.
Take care of yourself!
I just wanted to add my thoughts and prayers to all of the great ones already shared here. We’re here for you! ❤️
Thank you for your vulnerability in sharing this. I am sending positive thoughts to you and your family
Adding to this wonderful list of prayers and strength — you and your family are in my thoughts ❤️ Big hugs!
Sending prayers.
Sending your whole family so much love. You are so incredibly strong. I hope this community can be a source of peace and comfort for you as you understand how many people are behind you, sending strength and love to you, Finn, and your whole family.
This is all so difficult. But you aren’t alone. xoxo.
xoxoxo
I’m so sorry to hear about your Mom’s diagnosis. I will definitely keep you and your family in my prayers.
I feel this in my soul. My son was born a year after Finn, in September 2019. Two months after his birth, my mom was diagnosed with stage 4 pancreatic cancer. I was gutted. My son was her first grandchild and she was so excited. She fought valiantly, but we lost her 6 months later. I only say all that to tell you that I empathize on the very deepest of levels. I am sending you and your family strength and all my good thoughts. And please feel free to reach out if you ever want to talk to someone who truly gets the rollercoaster of emotions (from anger to sadness to gratitude to helplessness). Big hugs to you.
I’m so very sorry for everything you, your mom, and the rest of your family are facing right now. I can only imagine how challenging each day – and sometimes each moment – must be. I don’t often comment, but I’ve enjoyed reading your blog for years and I’ve always respected your openness here. Prayers and love are already sent and I will continue to do so. ❤️
I’m so sorry to hear of your mom‘s diagnosis. Sending her lots of love and your whole family as well. Here’s hoping that her transplant is soon and that she responds well and is able to resort relatively normal life.
Hi Sharon – thank you for your kindness and encouragement.
Much love to you and your family! ?
Thank you, Kate.
Jen – Thank you for sharing your story. There is little know about IPF as I found out as my own mom was diagnosed with the same disease in 2009. It stayed pretty dormant for about 1 1/2 years then the disease progressed rapidly. She fought a courageous battle but lost at the age of 73. I will keep you and you family in my prayers.
Hi Sue – thank you for your comment. I am sorry that you were also touched by this disease, and that you lost your mother. Thank you for the prayers, and sending many in your direction as well. Wishing you blessings in the new year.
I am so sorry to hear what your mom and all of you have had to endure these last few years. Will be keeping you and your family in my prayers. Hoping that this next year is full of great health news and recovery for all of you.
Hi Kate – thank you for your prayers, and well wishes for the new year.
My thoughts and prayers are with your and your family. I can somewhat relate as my dad had a heart transplant several years ago. Thank you for sharing.
Thank you for the comment and prayers. I am so sorry that you also had to go through a transplant with your father. It is encouraging to hear from others who have been through the journey.
Sending prayers to you and your family. ❤️
Thank you, Lucy.
I’m praying for your Mom, you and your family. I’m a nurse who works with pre and post lung transplant patients. The waiting is hard but I am thankful that she is in the care of one of the best health systems in the nation. It is so hard to watch a loved one suffer and we take for granted how important a simple breath is to our wellbeing. And it is mind-blowing to watch someone who struggled for breath for weeks or months or years be able to walk out of the hospital without the need of oxygen. It’s like watching a walking miracle. I am praying that she moves up the list quickly and that her recovery is simple and uncomplicated. Thank you for sharing this experience with us. ❤️
Paige – thank you so much for taking the time to leave this amazingly supportive and encouraging comment. It lifted my spirits and brought me a lot of hope. Also, thank you for the work you do with transplant patients. Wishing you a happy new year.
I’ve been thinking about your mom and about you too. I’m glad to hear an update. I will be thinking of you so much over the next several months. Being a caregiver is hard and unappreciated work. Hang in there. It will get better.
Stephanie – I can’t thank you enough for your supportive and encouraging comment. Truly. Thank you for taking the time to share it. <3
Sending love, prayers, strength, and healing vibes. Your stories always get me, and this experience especially. I pray your mom gets the lung transplant soon and will pray for a speedy recovery. ???
Thank you very much for the prayers Laura.
Sending many prayers to you and your family and hoping all goes well as you navigate through this process.
Thank you very much Anne.
My thoughts and prayers are with your Mom and your family Jen!
I hope 2022 will be a great year for you!?
Thank you very much for the prayers and well wishes.
Sending prayers from Canada❤️ As a long time follower, thanks for sharing such a personal story. Advocating for your mom’s care, educating yourselves on the transplant process and using the power of prayer…..you and your family are doing all the right things for a positive outcome.
Hi Nicola – thank you so much for your kind and supportive comment and your prayers. It means so much to me. <3
Many good thoughts and prayers to your mom, you and the rest of your family!
Thank you Rebecca!
Prayers going out to your Mom. Prayer is a powerful thing. Also sending positive thoughts your way.
Thank you so much Kimberly, I so agree. Grateful for yours!
You, your mom and your wonderful family are in my heart, my thoughts and my prayers. So glad she is receiving optimal care from the team at Duke. Thank you for sharing and being vulnerable in this space. You’ve got a lot of people pulling for your mom – and you. Much love!
Hi Jenny – thank you so much for your comment. I am grateful for the support from this community. Thank you for your prayers. <3
Hi Jen-
I have been following your blog for years and you have provided much inspiration in so many ways: physically, mentally and spiritually. Thank you for sharing your life with us!
Sending love and light and healing to your Mom and to each of you!
Hi Vicki – thank you so much for reading my blog and commenting on this post. It means so much to me. I am grateful to receive so much support back from this community. <3 Happy New Year.
What a terrible thing to read, I can only imagine how hard it was to write. Life just doesn’t seem fair sometimes. We (your huge blogging community) are here for you. It’s very kind of you to share even though it must be so hard. I’ll be sending prayers to your mom and your family as you navigate through this. Your mom sounds so strong and amazing. Fingers crossed for a lung to be available soon. Xoxo
Laura – thank you so much for your incredibly kind message. I am so grateful for your support, prayers and encouragement.
So in awe of your strength!!!! Long time reader and supporter! <3
Thank you, Mary! <3
Jen, sending positive thoughts to your sweet family and hoping your moms lung transplant comes soon and she heals quickly.
Thank you so much, Jessica. <3
Long time reader. Sending so much love and positive thoughts your way. <3
Thank you so much, Julie. It means so much that you commented.
Hi Jen
Thank you so much for sharing and I am sending love and strength to you and your family as you go through this, praying that your mother receives a transplant soon. Courtney
Thank you so much, Courtney. I am so grateful for your kindness and prayers.
Thinking of you and your whole family. This is so hard especially as a single mom and especially during Covid. I’m a primary care doctor – I hope yours knows what’s going on and can support you so that you are taking care of yourself. A relationship with a good therapist can be so helpful when life becomes this stressful. Let me know if I can help.
Your comment meant so much to me, Molly. Thank you for your care and concern. I am lucky to have wonderful support from my doctor (he knows what is going on) and my friends. I am also 100% a believer in therapy. Despite all this, I still need reminders to take care of myself and the validation that all of this is hard and a lot to hold is helpful and helps me to have more grace with and compassion towards myself.
Thank you for sharing Jen. I’m so heartbroken for your entire family. With anything the uncertainty always seems like the worst, but I am so happy that your mom found a wonderful team to lead her care. Sending my prayers that a transplant becomes available for her very soon. Your mom, dad, grandma, Finn, and you are all in my thoughts and prayers.
Yes, the uncertainty and waiting are so hard but trying to focus on a positive outcome. Thank you so much for your prayers, Marie! <3
hello Jen. So sorry to hear this. Thank you for your willingness to share so much with all of us. I will continue to pray for your family.
Thank you so much for the prayers, Susan.
Sending you and your family love and prayers. You are incredibly strong. The medical care at Duke is phenomenal and I pray your mom will receive the care she needs. Hugs to you as you navigate this difficult time xo
Thank you so much Lindsey – I am grateful for your kindness.
I can’t even imagine how hard this has been for you, your mom, your dad, and your grandmother. Duke’s medical center is one of the best out there, and I’m so glad your family was able to have your mother’s care transferred there. I will be eagerly awaiting the post that shares news of her successful transplant. Sending positive thoughts to all.
i’m a longtime reader and this post is devastating. you and your family’s strength is unbelievable. many prayers and hugs to you all!
Hi, Jen. I’m praying especially hard today for your mom. Sally is my first cousin and I always considered her to be my “sister” when we were kids and I’ve loved her for a long time! Your dad let our other cousin and me know that today is the day. Prayers are going up for all of you!
Your blog is wonderful!