Waiting for an Organ Transplant: Hope and Anxiety on the Waiting List

What do people waiting for an organ transplant and their families go through? Read about uncertainty, phone anxiety, guilt and support for every age.

Your heart stopping for a moment every time the phone rings, jumping out of bed at a notification in the middle of the night, a hospital bag that has been sitting packed by the door for months… For a patient waiting for an organ transplant and their family, life often hangs between "maybe today" and "maybe never". On one side the body's exhaustion continues, with dialysis sessions or frequent hospital stays; on the other, the mind is constantly chasing news that might come. In this article I look at the psychological weight of being on the waiting list, the feelings patients and their loved ones commonly experience, how this differs by age, and what family and friends can say and do. Medical questions such as eligibility and the order of the list always belong to the transplant team; here we will look only at the emotional side of this wait.

What Does a Patient Waiting for an Organ Transplant Feel?

Being added to the transplant list is a mixed moment for many people. On one hand comes the relief of "At last there is a way forward"; on the other, the seriousness of the situation becomes more concrete. The waiting period that follows is shaped less by a single feeling than by a blend of emotions that can shift even within a single day.

Common feelings include:

• Swinging between hope and fear. Someone who wakes up thinking "It will happen soon" may go to bed thinking "What if it never comes?" This swinging is not a weakness; it is a human response to uncertainty.
• Being constantly on alert. The sound of the phone, an unknown number, a message from the hospital can put the body on alert instantly. Over time, this state of vigilance makes sleep and rest harder.
• Putting life on hold. With the thought "I'll do it after the transplant", holidays, work plans, even going to a relative's wedding can be suspended. Life can start to feel like a waiting room.
• Loss of control. The fact that the order, eligibility and timing are not in the person's hands is very hard, especially for people used to planning their lives.
• Anger and resentment. People may feel angry at their body, at the system, at luck, or at life itself through the question "Why me?"

You can find the broader emotional framework of living with a long-term condition in more detail in the article on the psychology of chronic illness. On the waiting list, however, a distorted sense of "time" is added to all this: days seem to pass both very slowly and very fast.

The Invisible Burdens of Waiting: Guilt, Moral Dilemmas and Family Pressure

Some of the least discussed burdens of the waiting period are the thoughts people carry inside and often hesitate to say out loud.

"Am I waiting for someone to die for me?"

Many patients waiting for a transplant from a deceased donor experience deep guilt with this thought. Knowing that one piece of news could mean hope for you and grief for another family is heavy. Having this thought does not make someone a bad person; on the contrary, it shows sensitivity to another's pain. A transplant does not cause anyone's death; donation is a decision a family makes in the midst of loss. Making this distinction clear in one's mind brings relief to some people.

Living-donor transplants and family balances

In Turkey, transplantation from a living donor is a frequently discussed option, and this can create delicate balances within the family. The question "Who will donate?" can lead to unspoken expectations between siblings, comments from a mother-in-law or the wider extended family, and even silent resentments. The patient may withdraw, saying "I can't ask anyone for anything"; relatives who could be candidates may struggle between willingness and fear.

What matters here is that nobody makes a decision under pressure. Medical suitability and the voluntary nature of donation should be discussed with the transplant team and the doctor. Within the family, sentences like these keep the door open:

• What can be said: "I'm curious how you feel about this. Whatever you decide, our relationship won't change."
• What should not be said: "You're their sibling, if you don't donate, who will?" or "It's shameful that you even have to think about it."

Feeling like a burden

During the waiting period the patient often has to stop working, and it may be necessary to move closer to a hospital, change cities or deal with treatment costs. When the burden of the rising cost of living is added, the thought "I've ruined everyone's life" becomes more frequent. This thought is less a realistic assessment than the voice of exhaustion and helplessness.

Waiting for an Organ Transplant at Different Ages: Child, Teenager, Adult and Older Person

Being on the waiting list is experienced differently at every age. The language of support should change accordingly.

If the person waiting is a child

Young children struggle to understand concepts like "the list" or "a matching organ", but they sense the tension in the family very well. Parents flinching at every ring of the phone and conversations held in whispers can increase a child's anxiety. A short, honest explanation suited to their age helps: "One of the organs in your body is tired. The doctors are trying to find you a new, healthy one. This might take some time, and while we wait, we are always with you." Play, drawing and toy hospital sets help children express their feelings. Keeping their connection with school, and video calls with friends where possible, also helps a child hold on to their "normal" life.

If the person waiting is a teenager

For adolescents, waiting brings the feeling that they are standing still while their peers' lives move on. Their friends prepare for the LGS or YKS (Turkey's national high-school and university entrance exams), go to classes and go out; the teenager, meanwhile, goes back and forth between hospital and home. During this period it is important that the young person takes part in conversations about their own health, can ask the team their questions directly and has their voice heard in decisions. Saying "Don't you worry about these things, we'll handle it" may be well meant, but it pushes the young person out of the process. Instead, saying "When we talk to the doctor, is there anything you'd like to ask too?" gives them a say in their own life.

If the person waiting is an adult

For an adult who works, raises children or looks after ageing parents, the waiting period means a shake-up of roles. The person who brings money home being unable to work, or being unable to spend time with their children as before, can damage their sense of identity. Adult patients often hide their feelings under pressure to "look strong". A spouse, sibling or close friend saying "You don't have to be strong today" can lighten this burden a little.

If the person waiting is an older person

In older patients, waiting can come with a sharper sense of time. Thoughts such as "Is it worth it at my age?" or "Let the young ones have priority" are often heard. Rather than brushing these feelings aside, they need to be listened to. Protecting an older patient's dignity and right to decide, not talking about them in front of them, and answering their questions patiently are extremely valuable.

Phone Anxiety and Living with Uncertainty

One of the experiences people on the waiting list describe most often is the phone settling into the centre of life. Is it charged, is the sound on, do we have signal, will I hear it if it rings while I'm in the shower? These questions can come to mind dozens of times a day.

It may not be possible to make complete peace with uncertainty, but it is possible to live with it in a way that wears you down less. Some practical steps:

• Prepare once and close the file. If the hospital bag, the necessary documents, the travel plan and the list of who to call are prepared once and written down somewhere, the mind does not have to keep checking them.
• Share the tasks. If questions such as who will answer the phone at night and who will accompany the patient to hospital are discussed in advance, no single person has to stay on constant watch.
• Create "off-duty" hours. Planning times in the day, however short, when you take a break from the thought of waiting, such as watching a favourite series, drinking tea on the balcony or playing with a grandchild, lets the mind breathe.
• Give yourself permission after a false alarm. Sometimes the call comes but the transplant does not go ahead. This experience is extremely draining; feeling tired, disappointed or angry afterwards is natural.

For more general information on coping with uncertainty, you can look at the article on uncertainty anxiety.

Waiting looks like a passive act; yet for someone waiting for a transplant, every day is a great effort spent carrying hope.

How Can Family, Friends and Neighbours Offer Support?

A patient waiting for an organ transplant can also grow tired of the questions and comments from those around them. The well-meant question "Hasn't it come up yet?" becomes a reminder for someone who has to say "No" again every day.

Words worth avoiding

• "Are you still waiting? Does it really take this long?"
• "I know someone who knows someone, let's call them, they can move you up the list."
• "Keep your spirits up, otherwise even if an organ comes, it won't take."
• "If I were you, I'd go to another city, another hospital."

These sentences can carry impatience, blame towards the patient, or interference in medical decisions. It is worth remembering that decisions about order and eligibility are made according to set rules and that these belong to the transplant team.

Supportive words and actions

• "What kind of day are you having today? Is there anything you'd like to talk about besides the waiting?"
• "If you need to go to the hospital, I can take you even if it's the middle of the night; put my number on your emergency list."
• "I'll take the kids to school this week, you rest."
• "I know you're waiting for news, but I'm writing just to say I'm thinking of you. No need to reply."

Small but concrete actions also matter: neighbours quietly leaving food, asking how things are on the apartment stairs, and following the team's advice on immunity during holiday visits. Crowded visits can tire the patient out; short visits arranged in advance are usually more comforting.

When Should You Seek Professional Support?

During the waiting period, anxiety, sadness and anger are expected feelings. However, talking to a mental health professional can be helpful in the following situations:

• Sleep having been seriously disrupted for weeks, or phone anxiety completely taking over daily life
• The patient becoming reluctant to follow treatment, diet or check-ups
• Prolonged hopelessness, being unable to enjoy anything, withdrawing into oneself
• Unresolved tension in the family about living donation
• The caregiver feeling burnt out, constantly tearful or angry

Psychological assessment and support are often part of the process at transplant centres; do not hesitate to ask the team about this. If depressive symptoms are marked, an assessment by a psychiatrist may be needed. If thoughts such as "There's no point in living" or "Everyone would be better off if I died" appear in the patient or a relative, do not carry this alone; in an emergency, call 112 (emergency services) or go to the nearest emergency department.

How Is the Transplant Waiting Period Addressed in Therapy?

Psychological support does not interfere with the medical side of the transplant process, but it can help carry the emotional weight of this long wait. Within cognitive behavioural therapy, work can focus on coping with uncertainty, noticing catastrophic scenarios, reducing constant checking behaviours and continuing meaningful activities in daily life.

Guilt, moral dilemmas and difficult conversations within the family are also important themes in therapy. For example, how to talk to the family about living donation can be rehearsed together. Play-based approaches can be helpful for child patients, and conversations that respect the young person's autonomy for teenagers. For adults, individual therapy gives both the patient and the caregiving relative room for their own feelings. For people who need to stay close to the hospital or who cannot leave home because of fatigue, sessions can also continue online.

After the transplant takes place, a new period of adjustment begins; the article on psychology after an organ transplant can offer guidance for that stage.

Frequently Asked Questions

Is it wrong to make plans while on the waiting list?

No. Making flexible plans prevents life from being put entirely on hold. Consulting the transplant team about staying reachable before short trips or activities is a balanced way to protect both safety and quality of life.

What should I say if someone waiting for an organ transplant says they have lost hope?

Rather than replying straight away with "Don't say that", listen first: "This wait has really worn you out, I understand." Being able to talk about hopelessness means the person does not carry it alone. If these thoughts persist or turn into a wish to die, professional support should be sought.

Is it normal to feel disappointed after a false alarm?

Yes, it is entirely understandable. The drop that follows a sudden surge of hope can bring intense fatigue, anger or a need to cry. Rather than suppressing these feelings, going gently on yourself for a few days can help.

Can I feel gratitude towards the donor family and guilt at the same time?

Yes; these two feelings are often experienced side by side. Gratitude reflects the value of the gift that was given; guilt reflects sensitivity to another family's loss. Talking about these feelings with a professional or someone you trust can make them easier to carry.

• #organ transplant
• #transplant waiting list
• #family caregiver
• #patient psychology

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Eda Erkan Alapala

Klinik Psikolog. İstanbul Kent Üniversitesi Klinik Psikoloji Tezli Yüksek Lisans mezunu; bilişsel davranışçı terapi, çocuk merkezli oyun terapisi ve çocuk-ergen psikoterapisi alanlarında eğitimlerini tamamlamıştır.

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