Undiscovered Pathways

One Year?

What does one year means? Obviously it is 365 days that begins with the New Year’s Day and ends with New Year’s Eve. If we think of a work year, we are thinking about 2,080 hours which calculates out to be 260 workdays plus vacation days. A new life after a year of healing from a major surgery is like running up hills and down hills and sometimes the year seems longer than 365 days and sometimes shorter than 365 days!!!

Journey to 1 Year of Healing

The journey to the 1-year mark starts back 4 years with a diagnosis. Back in October 2021, we had just taken an anniversary trip to the Northeast with visiting 9 different states. We both were having a feeling that something was wrong. A diagnosis of pulmonary fibrosis for my husband was confirmed once we returned home.

At the end of 2021, he went on oxygen and was recommended to the transplant office program at a local hospital that specializes in numerous organ transplants. He had transplant appointments and testing during 2022 and until June 2023 when he went on the waiting list. It was such an accomplishment!!

On May 5, 2024, he received his call that lungs were available for him. The lung transplant surgery was performed on May 6, 2024, therefore, starting the countdown to 1-year of healing. He was in the hospital for 5 weeks with 2 weeks in the Cardiovascular Intensive Care Unit and 3 weeks in a post-stepdown unit for lung transplant patients. During the first 12 weeks after discharge, there are daily appointments at the hospital for pulmonary rehab, blood work, breathing tests, clinic visits, and bronchoscopes. After that, the appointments went to every two weeks to monthly appointments with constant tweaks to the medications.

When you reach a milestone, it is always good to look back at how far you have come. The numbers below are for appointments, testing, and procedures completed from the diagnosis through the surgery and healing. After the list, there is a grand total for the process and a total for the 1st year. Along the way through the healing process, we were blessed that there were not additional hospital stays until 2 weeks from the 1st year anniversary:

• 5 – 2021 Diagnosis
• 60 – 2022 Transplant Office Pre-Transplant
• 21- 2023 Transplant Office Pre-Transplant
• 34 – 2023 Transplant Office Waiting List
• 21 – 2024 Transplant Office Waiting List
• 18 – 2024 Call and Surgery
• 697 – 2024 ICU/Post Step Down Unit
• 213 – 2024 First 12 Weeks After Discharge
• 106 – 2024 Months 5-8
• 133 – 2025 Months 9-12

Total number in process: 1,308

Total number in 1st healing year: 1,167

Aspects that were Evident in Healing Process

• It is essential to have access to My Chart or similar health tracking system to read about test results and organize all the doctor appointments. This is especially important for researching topics that the surgeons and physicians discuss.
• An essential aspect in the communication between Physicians, Coordinators, Patient, and Caregiver is to have access to Post Transplant Coordinator/Physicians to propose questions.
• Stress-free communication between the doctors, pharmacies (both local and special care).
• To have the right caregiver and support people.
• Get lots of rest!
• Continue to exercise or workout to gain stamina in your body.
• Since you are now immunocompromised, there is a certain amount of apprehension in catching any viruses during the first year. The second hospitalization related to this specific issue!

Hope for the Future

• Activities that you previously enjoyed.
• Traveling
• More Volunteering
• Part-Time Job
• New Hobbies and Interests
• Change in mindset about breathing troubles and catching viruses. This will ease the apprehension of the future.

As the 1-year healing mark arrives, life as you know it will return with a new sense of living. There will definitely be a change of mindset of living life to the fullest with the new lungs that you were blessed with from the donor. That is what being a donor is all about!!!!