Organ donation - Waiting for a new life | DW Documentary

Key Concepts

• Lung Transplant: Surgical procedure to replace diseased lungs with healthy donor lungs.
• Pulmonary Fibrosis: A condition characterized by scarring of lung tissue, making breathing difficult.
• Organ Donation: The act of giving one's organs to be transplanted into another person.
• Donor Card: A legal document indicating a person's wish to donate organs after death.
• Rehabilitation: A structured program of exercises and therapies to aid recovery after surgery.
• Pursed Lip Breathing: A breathing technique to improve airflow and reduce shortness of breath.
• Organ Donor Tattoo: A tattoo signifying a person's status as an organ donor.
• Post-transplant Complications: Potential issues arising after an organ transplant, such as fluid in the lungs or medication side effects.

Lung Transplant Journey: From Offer to Recovery

This transcript details the profound journey of an individual undergoing a lung transplant, from the initial life-changing call to the ongoing process of recovery and adaptation. The narrative highlights the emotional highs and lows, the physical challenges, and the immense gratitude associated with receiving a second chance at life.

The Offer and Initial Excitement

The narrative begins with the speaker receiving a call at 3:50 a.m. offering a lung transplant. This moment is described as "trembling with excitement" and a chance for a "new life," a "second life." The immediate next steps involve discussions about transportation and other logistical details. The speaker expresses "infinite gratitude" for this opportunity.

The Transplant and Immediate Aftermath

The speaker recounts being in the ambulance, having calmed down, and the realization that a compatible lung has been found, confirming the transplant will proceed. The "prep room" experience brings the gravity of the situation to the forefront, acknowledging the risk of death during the operation. However, this fear is tempered by the knowledge of having a donor card and the potential for their own organs (kidneys, heart) to be used by others, a willingness to "pass that on."

Upon waking from anesthesia, the first breath is described as "such a pleasure," "incredible," and "phenomenal." The speaker cries "pure joy" at the ability to breathe deeply and strongly, even while still on a ventilator. This new chance at life is attributed to the decision of an organ donor and their family, allowing the speaker to continue living with loved ones. The speaker intuitively felt their remaining time would have been short.

The Underlying Condition: Pulmonary Fibrosis

The transcript reveals the speaker's medical history: pneumonia over 30 years prior, leading to pulmonary fibrosis. This condition is defined as "scarring of the lung tissue," making it progressively harder to breathe and take in oxygen.

Post-Transplant Recovery: Early Stages

Approximately a week after the transplant, the speaker is seen interacting with medical staff. Challenges include difficulty coughing up phlegm, which is described as something that "will take a few weeks" to master. The speaker expresses a sense of ownership: "It's mine!" The immediate concern is navigating the "first year," identified as the "hardest thing of all," acknowledging that while surgery was successful, the rest of the recovery is "yet to be seen" and requires daily effort.

A concerning incident is mentioned where the doctor initially estimated 400 milliliters of fluid in the lungs, but a puncture revealed "pretty much a liter," causing some worry. Breathing exercises, such as using "lung floats" and practicing breathing into the belly, are part of the rehabilitation. Pain is present, requiring painkillers.

Medical Progress and Gratitude

Ten days post-transplant, the speaker is feeling "really good," with medical staff noting "excellent work." The underlying fibrosis had resulted in a "relatively small" chest cavity, making it challenging to accommodate new lungs, but the transplant was successful. While coughing phlegm remains difficult, the lungs are described as "still have to learn," and deep breathing is functioning well.

The Thank You Pillar and Donor Stories

A significant destination for the speaker is the "Thank You Pillar," a place to hear stories of gratitude from other transplant recipients. Touching the pillar allows one to hear individual accounts of thanks for donated organs. Kerstin, a lung transplant recipient of nearly two and a half years, expresses profound gratitude to her donor and their family, emphasizing that without them, her continued life would not have been possible. The speaker is impressed by a story of someone who has had a "double transplant for 18 years."

Rehabilitation and Physical Progress

The speaker documents the effort involved in climbing stairs, which is currently strenuous but a sign of improvement. Significant progress is noted in a stationary bike exercise, increasing from three minutes to fifteen minutes within three weeks, a source of pride. Rehabilitation is described as "not exactly easy," with fresh scars, pain, and medication side effects requiring perseverance.

Breathing Therapy and Learning to Breathe Anew

During a follow-up, the speaker admits to not feeling "so good today" but is ready to try. The therapists emphasize learning to breathe "differently again," shedding habits like "pursed lip breathing" learned while on oxygen and returning to "completely normal" breathing. Therapists pay "very, very close attention" to this crucial breathing therapy.

Returning Home and Initial Setbacks

After many weeks, the speaker is excited to finally go home for the pre-Christmas period, hoping to bake cookies, possibly with grandchildren. The initial joy of returning home is met with reality: medication side effects and poor blood values. The speaker experiences significant fatigue, heart issues, and an inability to do anything, leading to a regression of progress.

Regaining Quality of Life and Family Support

Despite setbacks, the speaker is regaining quality of life, doing "little things" around the house and speaking with more energy. The family has prepared a special room for quarantine and recovery, with the son and friends working hard to make it habitable. The first few days at home are critical, requiring carefulness.

The Challenge of Sascha's Journey

The narrative introduces Sascha, a friend met in rehab who is not doing well. The speaker visits Sascha, who has lost significant weight and needs to gain weight to be considered for the waiting list. Sascha recounts a past disappointment when he was deemed too thin for the list, leading to despair and a feeling of everything collapsing. He expresses the constant thought of "throwing in the towel" due to being connected to a tube 24/7, but maintains, "I'll never give up. Hope is the last thing to die." His primary desire is to "breathe properly, like every other normal person."

The Impact of Chronic Illness and Social Isolation

The transcript highlights the severe restrictions of living with a chronic respiratory illness, including the constant need for oxygen and the fear of running out. The speaker shares a past near-death experience due to insufficient oxygen. The illness has led to the loss of all social contacts, with even friends no longer calling.

Hopes for the Future and Friendship

The speaker envisions a future with a transplant and being on vacation again. The visit to Sascha is described as "lovely" and "wonderful," reaffirming their friendship. The speaker aimed to provide Sascha with some support, emphasizing the importance of "give and take" in friendship.

Daily Struggles and Small Victories

Even simple tasks like adding up receipts are described as a "day's work," taking a long time but eventually getting done. The family practices mutual protection, wearing masks in shared rooms to prevent illness. Eating separately is a necessity to eat freely without fear of infection.

The Husband's Perspective and the Importance of Organ Donation

The speaker's husband expresses his suffering during the period before the transplant, witnessing his wife's decline and fearing her loss. The transcript then shifts to the importance of organ donation. The speaker discusses the idea of an organ donor tattoo, specifically on the forearm, as a visible indicator for medical professionals. The concept of "taking and not giving" is contrasted with the importance of being an organ donor. The speaker has been a donor since age 18 and sees the tattoo as a way to expedite the process for medical teams. The daughter finds the idea "very nice" and notes her mother's "young at heart" spirit.

A New Beginning and Continued Fight

The speaker declares, "Now I can breathe again. Without a tube, without a machine. It's uplifting, it’s just fantastic." While acknowledging the difficulty and the day-by-day work involved, the speaker credits their "good wife who knows how to fight" for their willpower.

Three Months Post-Transplant Update

Three months after receiving the new lung, the speaker reports doing well, with their lungs functioning well. The excitement of the initial call is recalled, and the ongoing commitment to the fight is emphasized. The speaker expresses happiness for having a future with family and friends and looks forward to summer.