Double Lung Transplant Recovery: Discharge Day!

I have a very exciting update to share about my mom’s recovery from her double lung transplant on January 15. After 39 days in the hospital, she was discharged yesterday!!!

(obviously this is an old photo but just wanted to share a family shot!)

POST-DOUBLE LUNG TRANSPLANT HOSPITAL DISCHARGE DAY! 

The primary thing keeping her in the hospital was a chest drain. You might remember from my last update that they had removed all of her drains (she started with nine!) but had to go in and drain two liters of fluid and blood from around her right lung. At that point, they reinserted one of the chest drains. That was a little over a week ago.

Well, they were finally able to pull it for good on Monday! It was a big day because she also passed her final swallow test and was cleared for a fully normal diet. She is loving Chick-Fil-A milkshakes right now.

My parents spent the next two days having all the necessary meetings to prepare for discharge. The biggest one is with pharmacy to make sure that you have all of your meds and understand how to take them. My mom is currently taking 12 different medications ranging from anti-rejection medications to heart medications to infection prevention medications (and more!). She will take some but not all of these for the rest of her life. She has to take the anti-rejection medications every 12 hours like clockwork. And then some of the other medications have to be spaced out from the anti-rejection so there’s a lot of moving pieces with medication management.

She also had sessions with occupational therapy prior to discharge to help her understand how to best manage her energy and day-to-day self-care and life tasks. Even though my mom was very sick and weak when she went into the hospital, she had been attending pulmonary rehab every day to build up as much strength possible before surgery. They tell everyone to expect to lose strength and weight in the hospital.

I can’t imagine how good it must have felt for her to be wheeled outside and take her first breath of fresh air with her new lungs. The report from her first night back at their temporary housing was good! Sam was excited to see her and she slept well.

My parents left the hospital around 6p last night and were already back at for clinic appointments at 9a this morning. Understandably, they keep a VERY close eye on you after discharging you from the hospital.

WHAT’S NEXT

• Tomorrow she has her first post-transplant pulmonary rehab appointment. For the first month or so post-discharge, she’ll go to pulmonary rehab four times a week and clinic once a week. In pulmonary rehab, they will work her hard to build back strength, endurance and mobility. She’ll work one-on-one with a PT for the first few sessions and then self-direct through a routine they give her (just like pre-transplant pulmonary rehab).
• Clinic days tend to be rather long and consist of labs, chest x-rays, pulmonary function tests, transplant pulmonologist meetings, etc.
• She’ll have weekly phone/video visits with her post-transplant coordinator as well as a registered dietitian.
• Speaking of the RD, she has to put on some weight! My mom had lost about 30 pounds before going in for surgery because her body was working so hard to breathe and she lost even more in the hospital. I think she’s coming in right at 100 pounds right now so there are a lot of milkshakes in her future. 😉 I know she’s just thrilled to be cleared to eat real food and to now have my dad cooking for her instead of eating hospital food.
• On Monday she will have another bronchoscopy performed. It’s their preferred way to take a close look at your lungs after lung transplant. They can clear out mucus if they need to, take tissue samples and check for signs of rejection or infection.

FEELING HUMAN AGAIN

Many people have asked me if my mom was so excited to get out of the hospital. While the technical answer is that of course she’s thrilled to be out of the hospital, she’s also just tired, weary and over it all. I can’t imagine the toll that a major surgery and 40-day hospital stay would have on you both mentally and physically. She’s been in a hospital room for 39 days without sunshine or fresh air. Bathing in the hospital consisted of wipe downs and rinse-less shampoos. Hospital sleep is not quality sleep with people in and out of your room all night. Her only clothing has been hospital gowns. For over 30 days she was on a feeding tube and not allowed to eat or drink anything by mouth. All of that is just kind of a downer and rather dehumanizing.

This morning she took a shower and washed her hair for the first time since before she went in for surgery. She said it was wonderful. She cannot have any water that isn’t sterile water touch her body where she has things that are healing like her staples from surgery or the place where they pulled the PICC line and drains. My dad had to do some creative wrapping and sealing of those areas but they got it done! Can you imagine how nice your first hot shower in 40 days must feel?

I think that day-by-day she’ll feel better mentally and physically as she gets back into a normal routine where she’s eating meals, going to rehab, hanging out with my dad and Sam in the evenings and getting sleep at night.

At this point, we have no idea when they’ll be cleared to head back to Florida but for now we are grateful to have her out of the hospital and onto this next stage of recovery. We also remain grateful for the truly incredible medical team at Duke and for the gift of organ donation.

PLEASE CONSIDER BEING AN ORGAN DONOR 

The last thing that I want to share in this post is to PLEASE consider being an organ donor. While it is devastating and hard to think about to losing your life or losing someone you love, organ donation can help save another person. I have had so many people reach out to me and share stories about how their life was touched through organ donation – both in having a family member receive a life-saving organ or losing a family member and finding some sense of peace/comfort in knowing that their loss saved a life. There are currently over 100,000 people waiting for a lifesaving organ transplant. Learn more and register here.

Again, thank you for the tremendous outpouring of love, support and prayers that you have offered to my family during this time. I promise that I will find as many ways possible to pay it back as I move forward in my life after this experience. God is good and kindness and love are so important for all of us living in this world together. <3