Donating your lungs; a choice for life
Organ donation is a sensitive issue for many people to think about and discuss but it is the difference between life and death for a person waiting for a transplant.
Many diseases can cause severe damage to the lungs that cannot be repaired by medication or surgery. The only hope for restoring normal lung function in this instance may be a lung transplant. In Europe, there is a long-standing shortage of organ donors, while the number of people waiting for a lung transplant is expected to rise.
This factsheet explains what organ donation is, how it can benefit people and how you can register to become a donor.
What is organ donation?
Organ donation is the removal of organs from the human body after a person has died. These are donated to people who have damaged organs that need replacing. Receiving an organ transplant can save their life, increase their life expectancy and significantly increase their quality of life.
Every person has the choice whether they want their organs to be donated after they die. In most countries, healthcare professionals need to check if a person who is in good health does not want their organs to be donated if they die.
There are no good or bad decisions in deciding to donate an organ. However, it is very important that your closest relatives are aware of your intentions as it will help them to agree or not agree with donating your lungs.
When can I become a donor?
Most organs are donated when a person has irreversible brain damage due to severe trauma or a stroke. This is called brain death. When it happens, the heart and the lungs cannot work on their own; a person’s heartbeat and breathing are maintained by a ventilator. The criteria to define brain death is determined by law and differs between countries.
In each country there are also strict legal criteria for when an organ can be donated and for how it is allocated to a recipient on a waiting list. This considers how compatible organs are and considers factors such as sex, age and blood group of both the donor and the recipient. It is also important to remember that the identity of the donor will remain anonymous and not be told to the person who receives an organ.
If a person with severe lung disease has tried all other treatment options and their condition has not improved, they may be eligible for a lung transplant.
The transplantation team make sure that lungs are donated to people who will receive the maximum benefit from the donation and who will take care of their lungs. For example, people who continue to smoke are not eligible for lung transplantation. According to a report from the International Society for Heart and Lung Transplantation in 2021, the chance of a lung transplant patient surviving at least 3 years was between 80–85 %.
A person on a lung transplant waiting list will be very unwell and usually has a life expectancy of 18 months or less. Their quality of life is likely to be significantly reduced. Their lungs will be badly damaged and they may require oxygen 24 hours a day to keep them breathing, or need a wheelchair to get around. They may receive a single or double lung transplant, or both a heart and lung transplant, depending on their condition.
This is the case for many lung conditions.
How can you change someone’s life?
Transplantation is the last option left to produce a major improvement in lung function and give someone a further chance at life. The three case studies below show personal stories of lung transplants:
“Living with IPF (idiopathic pulmonary fibrosis) is a major struggle – I am often extremely breathless. I compare it to breathing through a straw. This makes it a challenge to do minor things like having a shower, bending over or any gentle exercise. I experience long coughing fits in the morning, making getting up and out of bed an anxious time. I am on a double lung transplant waiting list. If I received a transplant, I would get my life back. I recognise what a precious gift this is. I have been a donor myself and given my good organs to others to give them that gift. My hope is that I receive this gift back one day.”
Ron Flewett, UK – member of EU-IPFF and the ELF Pulmonary Fibrosis Patient Advisory Group
“I was diagnosed with Idiopathic Pulmonary Fibrosis in 2016 and received a double lung transplant in April 2022. Before this, I relied heavily on oxygen therapy and was facing death with a progressively degenerative disease. The transplant represented a chance for a new life with my loved ones – it felt like a rebirth, like I was a baby discovering what’s possible again. I am slowly getting back to doing everything I did before I became seriously ill.
“Organ donation is an immeasurable gesture. From one life lost, many others can be saved. I would encourage everyone to leave clear messages for their family and friends about what they want to happen with their organs after death. I was a blood donor before the IPF diagnosis. Now I’m still listed as an organ donor. I hope that I can help someone in difficulty with what I no longer need when I get to that point.” Achille Abbondanza, Italy
“I was diagnosed with IPF in 2012. I was on the waiting list for 3 years and in that time had two lung transplants cancelled due to unhealthy donor organs. I received a double lung transplant in November 2020. I felt like I was given my life back. I consider these lungs now to be my own – I have a sense of duty to the donor to do everything to respect and protect the gift they have given me.” Albert, Belgium
“I became a full-time carer for Albert. We have fought this fight together and it has brought us closer. Before the transplant, Albert was terminally ill and needed a lot of oxygen support. We had 3 huge compressed oxygen tanks at home, refilled weekly and I was responsible for regulating the oxygen output. Life post-transplant is taken at a more sedate pace but it is relatively normal again. Albert will be on lifelong medication but we are able to travel to see family and friends and take outings. We have our life back. An organ donation is probably the most beautiful and selfless gift you can make to another human being.” Chantal Belgium, Albert’s wife.
People who receive transplants still have to take life-long medication for the rest of their lives to avoid infection and rejection of their new organ. They also have to make frequent visits to the hospital to check how their body has reacted to the new organ. In addition, these patients will take part in pulmonary rehabilitation programmes and are given advice on how to lead an active life to gain the full benefit of the lungs they received. However, this level of care is usually far less than a person needed prior to their transplant and they often see a significant improvement in their quality of life.
How can I donate my lungs?
The process for organ donation differs from one country to another. In some European countries, such as Spain, Austria and Belgium, citizens are automatically considered to be a donor, although your family will still be consulted when you die. You also have an option to actively opt in, which means the family will just be made aware of your decision, or you can opt out if you do not wish your organs to be used.
In other countries you must volunteer and opt in for your organs to be donated upon your death. It is important to know that a doctor, who has not been directly treating you, will make the decision whether your organs are suitable for donation. This ensures that decisions about your treatment are never linked to the decision to donate or not donate your organs.
Check how the policy in your country operates to find out how you can donate your lungs. One useful website to start with is the Global Observatory on Donation and Transplantation.
What factors could prevent my organs being used?
There are a number of reasons your organs might not be suitable for donation, even if you have agreed to donate them.
Medical conditions: Only well-functioning organs can be used. If you have cancer, HIV or an infectious disease, your organs are unlikely to be used for a transplant.
Damage: In the case of death by injury, organs may be too badly damaged to be used.
Family consent: In some European countries in the event of death, families are consulted and must also give permission for organs to be used. Even if you have agreed to donate your organs, this decision could still be overturned by the family. It is therefore essential to discuss your wishes with your family and friends in advance so they are aware of your wishes.
Organ donation across countries
Organ donation between European countries is a very complex issue. Some countries operate individually and do not allow organs donated in their country to be given to a patient in another country. Other countries, such as those in Scandanavia, belong to a network (in this case, the Scandiatransplant network), which allows the exchange or organs and tissue between participating transplant centres in five different countries. This is also the case for Austria, Belgium, Croatia, Germany, Luxembourg, the Netherlands and Slovenia, who belong to the Eurotransplant International Foundation.
The demand for organs outweighs supply all over the European territory. These shortages can generate organ trafficking, where criminals try to steal and traffic organs into other countries for money, which is strongly condemned by lung health and transplant societies across Europe.
To help combat this in 2008, the EU proposed an ‘Action plan on Organ Donation and Transplantation’ for 2009–2015. The have been calls for new action in recent years. You can find out more about the current EU strategy on their website.
The World Health Organization (WHO) has established a set of ‘Guiding Principles for Transplantation’. Visit the link below to understand more about the ethical principles surrounding transplantation, proposed by the WHO: