Pharmacy update: we have switched Homecare high cost drug provision from Lloyds  to Sciensus. This will involve a transition period over the next few months where you may still have outstanding deliveries from Lloyds whilst all patients  prescriptions move across. Apologies for any inconvenience during this transition.

If you have not had a delivery from Sciensus yet, you will unfortunately not know which company holds your current prescription. So for the next few months when arranging a delivery we ask that you contact  Lloyds first (Tel 0345 2636 123) followed by  Sciensus if Lloyds unable to help (Tel 0333 103 9499). If you experience any problems  please then contact your clinical team. Once you receive a delivery from Sciensus you will not need to contact Lloyds again.

We have experienced delays due to staffing shortages at both Homecare companies, so please plan your next delivery when you still have  3-4 weeks of medication left to avoid being left short.

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Lung Transplantation


Thinking about Transplantation surgery can seem very overwhelming – we hope that this flowchart can help you and your family  navigate through the process and help you understand the steps towards your decision making. Your team are there to answer any questions and support you every step of the way.

The Transplant Flowchart

This flowchart provides you an overview of what happens step by step throughout the transplant process.

The first successful heart -lung transplant for cystic fibrosis (CF) was performed in 1985. Since then, hundreds of transplants have been performed on patients with CF. Techniques have changed over the years as surgeons have become more technically skilled. The most common operation carried out today is called a double lung transplant, or Bilateral Sequential Lung Transplant.

Recently survival rates have improved to 85% at 1 year. There are still many patients who are alive and well over ten years after their operation. Transplantation can help some people live longer and bring them a better quality of life.


When is the right time?

Transplantation should be considered for everyone with CF well before it is actually needed.  There are many factors which are looked at to determine if someone should be referred for lung transplantation. The main criteria include:

  • FEV1 between 30-40% predicted
  • A rapid decline in lung function
  • An increase in the number of exacerbations requiring antibiotic therapy
  • Reduced quality of life prompted by patient or health professional – may be numerous / research/family =

Risks versus Benefits for you

Discussions with your CF team can help you to weigh up the possible risks and benefits of having a transplant.

The new lungs do not develop cystic fibrosis.  Hundreds of people with CF have had successful transplants. Transplantation is not for everyone but it can completely transform a life.  Many people with CF have benefited and their quality of life has been improved by transplantation.

Transplantation is a major operation and some people develop complications. These can be as a result of any operation.

Sometimes people do die from this type of major surgery, despite a high standard of care. It is important that you understand that there are risks involved with these types of operations and ensure that this is the right decision for you.

Sometimes the anti-rejection drugs are not fully effective and the new organs can be rejected either straight away or more slowly over a period of years. With modern medicines this has become less common.

Does CF “go away” after you have a lung transplant?

Transplanted lungs do not have CF because they come from people who do not have CF. However, after the transplant, the person still has CF in the sinuses, pancreas, intestines, sweat glands and reproductive tract.

The new lungs do not “get” CF, but immunosuppressive drugs may decrease the ability to fight germs like Pseudomonas aeruginosa. These germs may stay in the upper airways after a transplant and can infect the new lungs. The risks of infection are highest right after the transplant operation. This is because immunosuppressive drugs are given at the highest doses right after the transplant so the body will not reject the new lungs. These drugs make it hard for the body to fight infections, and this can lead to lung infections.

Medical Assessments

The transplant team request up to date information about you and your current health to help them decide the best management for you. Many of these are similar to your annual review assessments , but other tests include heart assessments (ECG and Echo), Respiratory assessments such as an arterial or capillary gas test to see how well you oxygenate, an overnight sleep study and an up to date Chest CT scan. Other tests include looking for Gastrooesophageal reflux disease using a PH or impedence study, which requires a nasogastric tube to be passed via your nose into your tummy for 24hrs . These tests can all usually be done locally. We may admit you to get the tests done efficiently or stagger them over a time period

There are factors that may affect whether or not you are eligible for transplantation although specific exclusion criteria are not set in stone. These include:

  • Being a healthy weight
  • Adherence to treatment and attendance at clinic appointments
  • Smoking, recreational drug use and high alcohol consumption
  • Certain bacteria in sputum
  • Diabetes control

Psychological Assessment

You will be invited to meet with the CF psychologist in the team.  The types of areas they may want to ask you about include: Emotional health, coping style, past trauma, family / friend support, beliefs about transplant, hopes for the future.

The purpose of this assessment is to identify if there are any areas of concern that may warrant the need for additional support.  This means that we can optimise the chances of someone coping well with the demands of going through a transplant.

Referral sent to Transplant centre

When all the assessments have been undertaken and the team and yourself are happy to proceed, then your referral and these reports will be sent to Harefield Hospital, London from your consultant.

Patient offered First and often Second Assessment Appointments at Transplant Centre

What does the transplant centre do?

Your surgeon and transplant team will want to get to know you. They will discuss options to help you decide whether to be considered for a transplant. If the team agrees that transplantation may help you and you agree, you will be placed on the waiting list. A number of medical tests will be performed at this stage.

You will be offered transplant when a suitable donor becomes available. Remember you can say no at any stage in this process. There are not enough donor lungs for everyone who needs a transplant and many people never have the opportunity.  This is why we aim to place you on the waiting list approximately two years before you need a transplant but this does vary considerably.

Importantly, at any point you can choose to come off the transplant list if you feel it is not right for you.

Listed for transplant

Once listed for transplant, you will be reviewed by telephone every 3 months and invited for a clinic review at Harefield every 6 months.  You can change your mind about transplant at any stage.

Importantly, at any point you can choose to come off the transplant  list if you feel it is not right for you.

Placed on the ‘wait and see’ list

When placed on the ‘wait and see’ list, you will be reviewed at Harefield every 6 months to determine whether it is timely for you to move on to the transplant list itself.

Importantly, at any point you can choose to come off the transplant  list if you feel it is not right for you.

Not Eligible or Decided against transplant

Your team will support you with your on going care if you are felt not to be eligible at this time. Here is a CF Trust resource that you may find helpful in supporting end of life care.

Successful donor

If a potential donor is found then you will be called straight away and asked to travel to the transplant centre immediately.

What does the operation involve?

In double lung transplantation the surgeon will remove your two damaged lungs and put two new lungs into your chest. They will stitch them to your windpipe and attach them to your heart. To prevent rejection of the new organs you will have to take medication which partially suppresses your immune system. You must always take these exactly as prescribed.

Any procedure will only be carried out with your consent and you will be asked to sign a consent form.

Importantly, at any point you can choose to come off the list if you feel it is not right for you, right up to the time of operation.

Unsuccessful donor

For a number of reasons it is possible for the donor lungs to end up not being appropriate for you, or occasionally the family may change their mind about donating. This is what we call a ‘false alarm’, and can feel very disappointing and frustrating for patients when this happens. On average, patients can experience 2 false alarms before finding a successful donor.

Aftercare

The transplant team will expect you to strictly stick to the treatment regime given post operation, including frequent follow ups, initially involving many attendances and short stays at your transplant centre for surveillance and investigations. Ongoing treatment will include immunosuppressants – these drugs increase the risk of infection in all your bodily systems but work to give your lungs the best chance of survival and avoid rejection where possible.

The team will discuss this with you before the operation to help you plan. Remember you will still have CF even though your new lungs don’t so much of your CF care will continue with support from your team.

Role of Transplant Centre

If you encounter any complications relating to your lung transplant, you will need to see the team at Harefield who will keep a close eye on you post operatively.  They will ensure you have access to contact details and easy access to advice. Travelling to and from the transplant centre will need to be factored into your thoughts.

Role of Exeter CF Centre

As you will still have CF you will continue to be reviewed by members of the team at Exeter CF Centre for ongoing routine care and the team will remain very much part of your life.

Cystic fibrosis and transplant booklet 2018