Double Lung Transplant Recovery: The First 10 Days

The last 10 days have been a complete whirlwind as my family has navigated my mom’s double lung transplant surgery and recovery. I was in Durham for the first six days and did daily shuffle of hotel to hospital to Whole Foods to hotel and repeat. My dad would take the morning shift and I would come in around lunch and stay at the hospital until around 9:30-10p each night. I couldn’t find the time, energy or words to check in here because there was just so much going on. I had a hard time even texting friends with updates because things were constantly happening and changing…and the hours I spent in my mom’s room seemed to pass in a flash. I found that doing one big update/recap at the end of the day worked best. I would copy and paste them into a text or share to Instagram stories.

DOUBLE LUNG TRANSPLANT RECOVERY: THE FIRST 10 DAYS

Looking back, I am so glad that I wrote them and have the first 10 days of the recovery process documented. There is absolutely no way I would remember all of this had I not done it on a day-by-day basis.

I want to share this here for a few reasons:

1. To help other patients and families facing double lung transplant surgery and recovery. I have really appreciated reading patient and family stories. While no two people’s recovery is the same, it’s helpful to learn/read as much as you can about the hospital and recovery because I don’t think anything can TRULY prepare you for what it’s like. I am so grateful for the pre-transplant classes we took through Duke and for all the things I read online.
2. To support other caregivers.
3. To support those who are also dealing with sick parents and/or close family members.
4. To give a voice to the patient.

While I am sharing a lot of information on double lung transplant recovery in this post, I am leaving out things like pictures and some personal details to allow my mom privacy. While it’s incredible that they can do things like double lung transplants to extend the life of those with end-stage lung disease, the whole hospital process from a surgery like this can be rather dehumanizing.

SURGERY DAY 

On Saturday, January 15 my mom had a double lung transplant at Duke University Hospital with Dr. John Haney. The reason for her transplant was that she was in end-stage lung disease from Idiopathic Pulmonary Fibrosis. She received the call from her transplant coordinator to come to the hospital around 2a. By 3:40a she called my dad to let him know that the surgery was a go. This was a departure from her three previous “dry runs” where she was called to the hospital but the lungs ended up not being viable for her. In the dry runs my parents had to wait upwards of six or more hours to find out the status of the surgery.

The transplant started sometime between 6-7a on Saturday morning and finished around 2p. She arrived in the ICU a little after 3p and my dad was let in to see her. She was sedated with fentanyl and on a ventilator but they did bring her out of sedation enough to have her answer a few basic commands like “squeeze my hand” and “wiggle your toes” and then they put her right back under.

I arrived in Durham around 7p and drove straight to the hospital to meet my dad. It was shocking to see my mom on a ventilator and hooked up to so many tubes and IVs but I felt mostly prepared for what I was going to see thanks to the pre-op educational classes that Duke requires caregivers to attend (I took them via Zoom). We ended up being in her room for the nursing shift change and it was nothing short of mind-blowing to listen in to their reports.

We left the hospital around 7:45p as they assured us that she would be sedated overnight and that we needed to get our rest to be ready for the coming days.

DAY ONE POST-DOUBLE LUNG TRANSPLANT

My dad and I arrived at the ICU when visiting hours started at 9a. It had snowed overnight and the combination of the snow + it being a Sunday made the normally bustling Duke Medicine Pavilion an eerily quiet place. We were thrilled to find my mom awake and off the ventilator. That was a huge milestone as it can sometimes be hard for transplant patients to come off the ventilator and the longer you’re on it, the harder it is to get off of it.

There was a crowd of people in her room and after about five minutes I started to feel nauseated and sweaty. I knew that I needed to get out of there or I was going to pass out or throw up. I think it was a vasovagal response to the overall gravity of the situation. It all kind of hit me and it was hard to see my mom in the state she was in. After a quick trip to the bathroom to regroup, I was fine for the rest of the day.

She was very confused and felt terrible. Her speech almost sounded like she’d had a stroke but she was coming off of many hours of heavy-duty anesthesia and a major surgery. While she wasn’t feeling well, she was hitting all the numbers they wanted her to and everyone who came in her room reassured us that was the case.

She was completely weaned off of supplemental oxygen at 3p (just 24 hours after surgery!) and was breathing room air with 98-100% oxygen saturation. It was truly a miracle.

PT and OT stopped by in the afternoon and got her to sit and stand. The level of support that team offered my mom was amazing.

Lastly, I will never, ever forget her nurse in the ICU that day, David. He was an angel sent straight from god.

DAY TWO

Day two was a rough day in the ICU. The overall rush of adrenaline from the transplant finally happening wore off and we found ourselves facing finding our new normal with hospital life. We arrived at the hospital when visiting hours started to find that she’d had a hard night. She struggled with agitation and hallucinations and at one point pulled out her feeding tube.

The good was that she stood up again (and for longer), took just a few steps and could move herself around in bed a bit. The nurses kept commenting on how strong she was. A testament to how hard she worked in pre-transplant rehab. <3

Her vitals and labs looked good, and she asked me for ice cream. She was (and still is) NPO, which means she cannot have any food or drink by mouth but I thought that was a good sign.

The bad was that she spent a lot of the day confused, groggy and disoriented due to the overall impact of the surgery and anesthesia as well as some medication changes. It was really difficult for me to see her so uncomfortable and out of sorts.

DAY THREE

The big news for day three was that my mom got moved from ICU to the cardiothoracic step-down unit. That was a big deal!!! She’ll stay in this unit until she is discharged. Hospital stays with lung transplants can range from 2-3 weeks to 6+ months. At the encouragement of the lung transplant team in the pre-surgery classes, I brought some family pictures to brighten up my mom’s room.

While I was so happy she was doing well enough to leave the ICU, it was anxiety-inducing to know that she wasn’t getting the 24/7 super close surveillance that she was getting in the ICU. In my rational mind, I knew that leaving the ICU was exactly what we wanted her to do as some transplant patients spend months there but I was a mess leaving the hospital at 10p after she’d fallen asleep. I felt like I had exited an alternate reality when I left the hospital that night. I thought I might be bored sitting around the hospital for hours on end but nothing could be further from the truth. There is so much going on whether it’s someone in my mom’s room or taking care of things she needs.

She went on her first real walk with PT on this day and walked 300 feet. She made some small cognitive improvements after some adjustments to pain management but was still far from her normal self.

DAY FOUR

It was another stressful day. My mom had an episode of atrial fibrillation that gave everyone a good scare. Atrial fibrillation (A-fib) is an irregular and often very rapid heart rhythm (arrhythmia) that can lead to blood clots in the heart. It’s not uncommon in lung transplant patients and was corrected by meds.

She had one of her NINE drains removed that morning. Drains are small plastic tubes that help drain away fluid after an operation. Without them, fluid might gather up and cause infection.

She started wanting to use her tablet and phone, and was interested in watching shows. I thought that was positive progress. She was also awake more on this day than any other day. Cognitive issues were still present and I had to help her with things like how to use her phone and tablet.

It was so hard for me to leave again on this night because she was experiencing a lot of stomach issues from her feeding tube and meds.

My biggest takeaway from the day was the importance of having family advocate for the patient. The medical staff at Duke is phenomenal but no one knows you like your family does. What I mean when I say this is that we knew her personality pre-surgery (and pre-disease). We know what is normal for her and not normal. Also, when you sit in a hospital room with someone day in and day out, you have a ton of feedback to offer about how certain things are impacting the patient and changes you notice whether it be minute-to-minute, hour-to-hour or day-to-day. It’s been my experience that the nurses and medical staff are extremely open to listening, and are grateful for the feedback.

DAY FIVE

This was the very first day that my mom said, “I think I’m starting to feel better.” She had two more drains removed.

She walked 400 feet twice with PT and her oxygen stayed at 99% for both walks. One of the biggest sources of anxiety for her post-transplant has been believing that her new lungs are working and that she doesn’t need supplemental oxygen.

Stomach issues continued and were absolutely no fun. They ran tests to rule out a GI infection but all was fine.

Her epidural (it was placed for pain control) came out the night before and had to be replaced.

I had to leave on this day to come home to Charlotte to be with Finn for the weekend. It was difficult to leave but I also needed to spend time with my boy.

DAY SIX

This was the first full day that I was not with my parents. My dad checked in a few times with updates.

She was finally able to start getting some quality sleep at night for the first time since surgery. On previous nights she had dealt with disruptions to her circadian rhythm, hallucinations from medications, stomach issues, etc. We all know the power of sleep in helping to heal and restore the body so this was an excellent development.

She walked double the distance in PT (800 feet) in the morning and again with the nurses in the afternoon.

She had a swallow study done to check the integrity of her swallow muscles after surgery. Unfortunately, she wasn’t cleared to eat or drink quite yet and is still receiving all nutrition through a nasogastric feeding tube. Lung transplant patients are limited on eating and drinking because they don’t want them to aspirate and risk infection in the new lungs.

DAYS 7-9

These are the high level updates I received over the weekend:

• They had to replace her feeding tube due to a clog. I am pretty sure the feeding tube is one of my mom’s least favorite things about recovery, and getting them placed is not the most comfortable procedure.
• They took out her catheter so she was able to start using a portable toilet next to the bed.
• She was alert enough to do things like talk on the phone with my grandmother and do video chats with me and Finn.
• They took out a few more drains, getting her down to two.
• Her surgeon stopped by and assured her she was making exactly the kind of progress they want to see and validated the discomfort of the recovery process. He said, “it’s like we ran over you with a truck and then backed over you a few more times for good measure.” Everyone keeps reminding her that she had a big surgery!!!
• She started to get some of her spunk back and my dad texted that she was, “telling him what he needed to do.”

DAY 10 

I arrived back in Durham this week and here’s my big update. I thought this week might be a little easier but it’s a different kind of hard.

My mom is making meaningful strides towards recovery. She’s walking more and moving around fairly well. She still has to have assistance to do anything that requires getting out of bed because she has IVs and drains and is a fall risk, but she’s very strong in her ability to stand and walk.

She had a PICC line placed this week. This will make all of the blood draws easier and make it easier for her to receive certain IV medicines that may cause discomfort in the veins (like magnesium). Her poor arms are black and blue from all the sticks.

She’s had multiple episodes of a-fib. She has been able to self-correct back into normal sinus rhythm each time but it makes for a scary few minutes. She had not had an episode of a-fib since the first one on day four so it’s something they’re keeping a close eye on but anticipate resolving.

Her cognitive status is slowly improving. She still gets confused about some things and needs gentle guidance, reminders and support. She’s felt al little bit irritable which is completely understandable given all of the pokes, procedures, tubes, drains and medications along with the constant stream of people in her room and needing help to do everything.

She’s dealing with some anxiety which again is totally understandable. Most of it is centered around her new lungs and believing they’re working, her oxygen saturation is sufficient and she doesn’t need supplemental oxygen. She’s also concerned about her cognitive status and recall ability. One of the psychiatrists on the transplant team came in to talk to her and I think that really helped. He listened closely, validated many of her concerns and offered tools and resources.

He said that he sees MANY transplant patients who struggle with anxiety post-transplant around their new lungs. Imagine the emotional toll that pre-trasplant rehab, being on the waiting list, the false alarms, not knowing if you’re going to live until you get the transplant, etc. would have on you. Then you get the new lungs and recovery is so grueling and full of ups and downs. He also said that it’s normal for them to see cognitive issues up to six months after getting out of the hospital.

I was pleased that in addition to offering her medicine to help with her anxiety (she declined), that he first offered mindfulness techniques and the stress management program at Duke. They have a team that will come into patient rooms and guide them through various mindfulness exercises. It’s so encouraging to see this type of program in a hospital setting.

She also received a visit from the chaplain and she stayed and talked to my mom for 20-30 minutes. It makes her feel so good to have people that really listen to how she’s feeling and the struggles she’s facing.

I wanted to focus more on the mental piece of it for the day 10 update because I think it’s important to talk about and a huge part of recovery.

IN CLOSING

Whew, that was nearly 3,000 words about what the start of this recovery journey has been like for my family. I could write 3,000 more but I will save it for future posts. I have so much to say about caregiving, advocating for patients, taking care of yourself, etc.

Thank you all for your comments, message and emails full of love, support and encouragement. Even if I haven’t responded, I promise that I have read every single one and read many to my mom.