February 15 marked one month since my mom’s double lung transplant at Duke University Hospital. It has been a difficult month for our family with many ups and downs but our leading emotion is gratitude for the new lungs she is breathing with and for the world-class care she is receiving at Duke.

The outpouring of love, support and prayers that you all have extended to my family has been has been a wonderful blessing. Thank you for following along for this journey and for giving me the space to write, share and process here. I have already been able to connect with other families who are facing IPF and lung transplantation and I’m honored for the chance to pay forward any amount of support and knowledge that I can.

DOUBLE LUNG TRANSPLANT RECOVERY: ONE MONTH LATER 

I wanted to share an update on how my mom is doing one month post-transplant.

DOUBLE LUNG TRANSPLANT RECOVERY: THE GOOD 

• She passed her swallow test last Friday and has been cleared for a prescribed diet from the speech team. There are specifics on the size and texture of what she eats and drinks but this is huge progress as she went four weeks without eating or drinking a single thing. The not so ideal situation is that the hospital food leaves something to be desired but my dad is doing his best to doctor it up for her with a little salt and butter. He can’t bring her anything from the outside because they’re closely monitoring her diet and her caloric intake. The first meal they brought her when she passed her swallow test was tuna salad and green beans. She’s ready for some good food!
• Her GJ feeding tube was removed on Sunday so she is feeding tube free.
• She received Evusheld this week which is the only authorized long-acting monoclonal antibody treatment for pre-exposure prevention of COVID. It’s specifically for people who are not infected with COVID (where other antibody treatments are given after a positive test). It’s required that individuals who receive it either have a compromised immune system (which my mom now has because she’s taking immunosuppressive medications to prevent rejection) or a history of severe reaction to the COVID vaccine or elements of it. My mom is double vaccinated and boosted but we are grateful for access to this additional antibody treatment. It’s in short supply right now.
• Last week she worked up to walking 16 laps around the unit every day over the course of four different walks.
• She is doing SO much better cognitively/mentally. I noticed marked improvement when I was in Durham last week and she continues to improve.

My mom’s room has a view of the emergency department and the helipad where all of the Life Flights land and take off. On this day a big Army helicopter was landing – it had to be four times the size of the normal choppers that come in.

DOUBLE LUNG TRANSPLANT RECOVERY: THE SETBACKS

• We were anticipating a Valentine’s Day discharge but unfortunately some unexpected (but not abnormal) complications have come up so she’s looking at at least another week in the hospital.
• The GJ feeding tube that was placed wasn’t working the way they wanted it to and there were issues with leaking and a concern of infection. It was also causing her a lot of pain and discomfort. One of the transplant surgeons was rounding over the weekend and decided to remove it right there in her room. Thank goodness she had passed her swallow test at this point so she didn’t have to have another feeding tube placed. They have been brutal for her.
• Her hemoglobin was low so she had to have a blood transfusion. So far she has only needed one until. This is time for a PSA: there is a national blood crisis so now is a great time to donate blood and/or plasma.
• Imaging showed fluid building up around her right lung and they drained two liters of blood and fluid from her chest on Tuesday. They also decided to reinsert another chest drain (she had been drain-free for over a week) so that’s another factor keeping her in the hospital.
• She received an infusion of intravenous immunoglobulin G (IVIG) to help counter antibody-mediated rejection. She was beginning to develop some antibodies that could lead to rejection.

None of these setbacks are things the team at Duke doesn’t deal with regularly with double lung transplant recovery. She has an incredible team of medical professionals who are so proactive and on top of literally everything. We know that she’s in good hands and they told us in the pre-transplant classes to “expect complications” as part of the recovery process.

That said, it doesn’t mean that it’s not emotionally draining on my family, and especially my mom. She is beyond ready to be out of the hospital. She’s been in the same room for a month now and her only outings are for walks around the unit, x-ray and procedures. She hasn’t been outside in fresh air in a month and you all know that hospital nighttime sleep is not good sleep. She gets a pretty down/anxious sometimes about the whole process and especially the setbacks. Fortunately, the care team is EXCELLENT at thoroughly explaining everything and letting us know when setbacks are things they see commonly in transplant and surgical patients.

My dad has been so level-headed and strong for her but I know this is hard on him too. He’s been at the hospital every single day since the surgery. He’s so wonderful about helping her with things she needs and also giving her tough love about things like getting out and walking. While I’m glad my mom is getting such great care in the hospital, I pray that she’s able to be discharged in the next week or two. I know it will do wonders for her healing and her spirits to get out of there!

AN UPDATE ON MEMA

I have had abundant requests for an update on how Mema is doing in Florida. Overall, she’s doing well but of course she misses having my parents around and it’s been a big adjustment. For the record, it didn’t make sense for her to temporarily relocate to North Carolina. Her mobility is limited and she’s very comfortable in her small condo where she has her daily routines down pat. She wouldn’t have been able to stay with me because all of my bedrooms and full baths are upstairs, and she wouldn’t have enjoyed living in a hotel with my parents for months on end. She loves her balcony sitting and beach watching too much!

My parents have a great community of friends at their condo development in Florida and my grandmother has people checking in on her daily. I feel like every time I talk to her she’s telling me that someone came to visit or dropped off food. My parents friends have helped with getting her to appointments, picking up medications, running errands for her, etc. It’s been really heartwarming to see everyone rally around in support. She also has a lovely woman who helps her with laundry and cleaning. She stops in at least once a week. And my grandmother is very adept at ordering things she needs from InstaCart and Amazon! 🙂

There has been a rotation of family members traveling down to visit. Finn and I are overdue a visit and planning to get down there in the next few weeks. We can’t wait to see her!

Thank you for asking about her. She’s the best.

TO WRAP IT UP

We will continue to do the only thing that we can do – take it one day at a time, stay grateful and hopeful and focus on trusting the process and her medical team. This journey is not just a marathon but an ULTRA and I’m keeping my sights set on getting her back to Florida and back on the beach. <3