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Information
Lung transplants
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Lung transplantation can improve your quality of life and help you live longer. But it is not a common lung fibrosis treatment. It involves major surgery that has significant risks and complications.
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Who can have a lung transplant?
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The decision your medical team makes to recommend lung transplantation depends on a careful assessment of balance of the benefits, risks and alternatives. The scarcity of suitable donor lungs means that selection is based both on your clinical need and capacity to benefit from a transplant. Decision making should be fair and transparent and all lung transplant centres use the same criteria to make their decisions.
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I lived with PF for eight years and, as my condition was deteriorating, my consultant suggested a transplant assessment. This is a rigorous process which examines you both medically and psychologically. You need to have the right mind set and support system to deal with the risks and the consequences of having a transplant.
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To improve your chances of having a lung transplant:
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- You have to be in good health otherwise, with no other major or life-threatening illnesses, such as kidney failure, heart failure, heart disease or cancer.
- You need to have stopped smoking for at least six months. The doctors can do blood tests to check if you’re still smoking.
- You should drink only small amounts of alcohol.
- You can’t have problems taking medications – after the transplant, you will be on a lot of tablets for the rest of your life.
- You must be at a healthy body weight. Being over or under weight puts you at risk of more complications from the transplantation.
- You must have good emotional and psychological support.
- Many of the risk factors are age-related and therefore typically, people over 65 are more likely to get complications from lung transplants and they are less likely to survive.
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Having a lung transplant
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- If your doctor thinks you may be suitable for a lung transplant, you’ll be referred to a transplant unit for a thorough assessment. This involves meeting the medical team as well as a number of tests including a bone scan, coronary angiogram and lung function tests.
- If the transplant team think you are suitable, you’ll join the lung transplant waiting list. It can take 12-18 months or longer to find a match for you.
- While you’re on the waiting list, you may become too unwell to have a lung transplant. For many people anti-fibrotics or other PF treatments may be a better option.
- If a donor lung(s) is found, the operation itself can take up to eight to ten hours. After the operation, you will be cared for on the intensive care unit and can be in hospital for up to two to four weeks – or longer, depending on how your body copes with the operation and new medications. You will need to take medication to stop your body rejecting the transplanted lung(s) and keep in touch with the lung transplant team for the rest of your life.
- Read more about lung transplants on the NHS website.
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Need to know about lung transplants
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Survival rates after lung transplantation are improving, but are not high. Just over half of the people who have a lung transplant will be alive five years after transplantation.
Only about 150-200 lung transplants are carried out in the UK each year. This includes people living with other chronic lung diseases as well as those with PF. There are not enough suitable donor lungs available in the UK and it can be hard to find the right match for an individual.
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I was on the waiting list for a year without a single call - and I was told this is normal. Unfortunately, I progressed too quickly and became no longer suitable for a transplant. But I found palliative care supported me brilliantly.
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Where to go for support
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- It can be distressing if your hopes have been dashed by a decision that you are not eligible for a lung transplant, or if you become ineligible while waiting for a donor (it can take 12-18 months to find a match). Please do reach out for support. You are also entitled to ask for a second opinion from a different transplant centre if you are dissatisfied with the decision.
- Help and support is available from our Transplant Patient Support Group which is for anyone with pulmonary fibrosis who has had or is waiting for a transplant.(insert details)
- You can also call our support line if you want to talk to someone in confidence.
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Our website and resources provide general information only. We cannot provide medical advice, treatment or prescriptions, nor can we assess/decide what services or clinicians you should be referred to. Support with these matters will need to be provided by your existing healthcare professional teams.
APF is not responsible for any errors or omissions or for any loss or damage suffered by users resulting from the information published on our website or in our resources.
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