Undiscovered Pathways

As we approach six months from my husband’s lung transplant surgery, it is a perfect time to reflect on the valued community we experienced 12 weeks following the discharge from the hospital. These twelve weeks contain outpatient appointments daily Monday through Friday that include Pulmonary Rehab, lab tests, chest X-rays, Pulmonary Function Tests (breathing tests), Clinic Visits, and Bronchoscopes.

The first weekend after discharge was very different. He had been in the hospital for 5 weeks and home had really become a hotel for me driving back and forth to the hospital. Starting the outpatients appointments was unusual as we were now riding together in the car. At the start, you are very weak and unable to walk unassisted.

I dropped him off at the patient drop off and got him a wheelchair and then parked the car. I would walk to the hospital from the parking garage to where he was to push him to the first appointment. At first, he was very impatient that he had to wait and be in a wheelchair and eventually that impatience subsided as he realized that he had no choice. I will have to say that I did hit a few corners trying to maneuver the wheelchair into the elevator. I never said that I had a wheelchair license!

Pulmonary Rehab

Pulmonary Rehab is a requirement for lung transplant patients with appointments 5 days a week. At the start, you are in a wheelchair and as you progress and strengthen your body and then hopefully you leave the wheelchair behind. While the patient is evaluated and is on the treadmill each day. Periodically through the 12 weeks you complete a 6-minute walk to check on your strength.

On the first day of rehab, you are evaluated on what you can do and are assigned a number. My husband’s number was overall LTX #2,076 and he was LTX #18 for 2024. The numbers mean that the facility has performed 2,076 lung transplants in their history and he was the 18th transplant in 2024. In the waiting room, they maintain the numbers on a dry-erase board. The picture was taken on our first day in Pulmonary.

While he was on the treadmill, an angel by the name of Pauline gave me a tour to see the artwork that each transplant patient makes after they finish the program. The picture at the top of the blog was made by a very creative patient! Each time that a caregiver brings a child or grandchild to Pulmonary Rehab, Pauline leaves and goes to the gift shop to bring them toys to keep them busy. You have a special heart to think of that.

As you go through the weeks, you meet different patients and caregivers and you talk with them about the progress and trials that each patient and caregiver goes through. To say that the Pulmonary Rehab waiting room is a community is an understatement. The people that you meet are geniunely concerned about your progress and can understand what you go through. During the 12 weeks, you see them in different parts of the hospital for the other appointments. You recognize them and stop to talk like they live in your neighborhood when in fact, most of the people that you meet are from different states. After the 12 weeks, they will go back home. They will always be a part of your heart.

Some people are in your life for a season!

At the end of the 12 weeks, you have a graduation engineered by Pauline. You go in the back where the artwork is and sign the board that you have graduated. It is a big moment for both the patient, caregiver, and Pauline!!

Clinical Appointments

These appointments are varied between bloodwork, chest x-rays, breathing tests, and clinic appointments. Twice a week, there would numerous blood tests that were run to check different metabolic panels levels, anti-rejection drug levels, and testing for any infections. After each blood test, your assigned coordinator would call and see which medication would need to be tweaked.

Once a week, there would be a chest X-ray to monitor the healing after the transplant. Every two weeks, he would receive a Pulmonary Function Test that tests the air that a lung patient can force out which tells the capacity of the lungs. At first, the levels are low as the new lungs develop and increase through the 12 weeks and up to 6 months as you become more active. Also, every two weeks, there are clinic appointments where the patients can ask questions which can be numerous through the 12 weeks.

Additional Areas Arise

Some additional areas will start to pop up. With all the medications that the patient now takes, patients experience swelling and start taking insulin to get their glucose under control. Glucose control would be treated through an Endocrinologist. Many patients start to have infections due to being intubated during the surgery and intensive care time. A home infusion of antibiotics is performed for two weeks to get rid of the infection. This usually takes two rounds of infusions to make sure that the infection is totally gone. During this time, it was discovered that there were blood clots from the PICC lines that are put in in the hospital stay. This is the start of ultrasounds and blood thinners.

It is very common that transplant patients develop skin cancer due to being immunosuppressed. If you are ever walking at the park or anywhere outside, there will people with big, floppy hats and long sleeve shirts on even in the summer. These are usually immunosuppressed people. You also have to wear sunscreen out in the sun as also in the car as you get the UV rays through the windshield. He was definitely not found of this one!

When you are a lung recipient, the lungs come with certain antibodies from the donor. If you do not have the same antibodies then monthly infusions of antibodies are necessary so that the recipient body does not reject the organs. After a year, these infusions should no longer be needed.

Bronchoscopes are performed on the patient to determine if there is an infection or rejection in the lungs. During the procedure, fluid is inserted down the throat into the lungs and then the fluid is sucked out of the lungs taking lung cells back out so the cells can be tested. At the same time, they take a biopsy to send to the lab. This is his 4th bronchoscope (1 month, 2 months, 3 months, 6 months) and then gets a break until the year mark. While the procedure goes smoothly, the recovery is rough as you have foreign objects in the throat and lungs.

Surreal Moment

Going through this process, time is always defined by pre-transplant and post-transplant. However, there is one event that blends them together as leaving diseased lungs behind with receiving healthy lungs. The day that the order has been put in to remove the oxygen tanks and they arrive to complete the task is surreal. I warned the guy picking up the tanks that I would be taking pictures. He gave me a wry smile and away the tanks went!!

As we are at the halfway point in the recovery period, we look back with gratitude for the donated lungs, for the enormous amount of people that have helped us along the way, we look forward to the future, and the end of the recovery period! Thank you for the patience in this undiscovered pathway and back to the travel road in 2025!