You’ve been referred to the Freeman Hospital as your doctor thinks you may need a transplant. You may have been seen in one of our satellite clinics, where you had an initial meeting with members of the transplant team.

You’ve been invited to attend an in-patient assessment where we can determine your suitability for transplant. No one is accepted onto the witing list for a lung transplant until their condition has been assessed by the transplant team.

After reviewing your information you have been invited to attend an in-patient assessment. You’re required to come to the Freeman Hospital for an assessment as an in-patient. This assessment usually lasts between 3 and 5 days. Further tests may be required which involve a longer stay. Sometimes tests can be carried out at your local hospital.

During your stay you will have the opportunity to discuss the patient information and ask questions. Not only does the information enable you to make an informed decision regarding transplantation, but it is also a reference for you and your carer to go through the various stages of the transplant process.

It’s essential that your carer attends the assessment visit with you. We’ll talk more about your carer in the next chapter.

The assessment visit will help to determine:

• Whether you are in the ‘window of opportunity’ which would require a transplant
• If you require further investigations
• If you are presently ‘too good’ for transplant
• If you are a suitable candidate for transplant
• If you are ‘too sick’ for a transplant
• If transplant is an avenue that you want to pursue

You will not be on the transplant waiting list at the end of the assessment visit. There will be a number of vaccinations you will need to have locally and a dental check up to make sure your oral health is good.

You will be only be accepted onto the transplant waiting list if the benefits of a transplant outweigh the risks.

If you are not accepted onto the list then the transplant team will give you a full explanation and advise on what to do next.

On the week of your assessment visit, you should at the hospital on Monday between 10.30 – 11.00am where possible, depending on where you’re coming from and how you’re travelling to the hospital.

Getting to the hospital

The address for the Freeman Hospital is: Freeman Road, High Heaton, Newcastle upon Tyne, NE7 7DN.

Find the Freeman Hospital on Google maps.

If you’re travelling from outside of the area, you may require transport to be organised by your consultant secretary or GP.

Hospital map

Parking

If you need parking during your stay, there are 2 large car parks available at the hospital. Once you have paid for a parking ticket take it to the reception desk at cardio entrance, if you have a blue badge and you may be eligible for discount.

There are also disabled parking facilities for blue badge holders.

Oxygen

If you need oxygen, bring enough with you for the journey to and from Newcastle. We can provide refills for some oxygen cylinders but we are unable to provide you with hospital cylinders to travel home with You are advised to use hospital oxygen whilst within the hospital grounds.

During the assessment visit, you’ll stay in the Freeman Hospital as an in-patient. We have a small number of basic flats on site, we can accommodate only 1 carer per patient, the bathroom and kitchen facilities are shared with other carers. We can also provide a list of nearby hotels and B &B’s if preferred.

On the ward

You will stay on the ward for the duration of your stay. Your carer will be able to be with you for some of the time you are with us. There may be times when we ask you to leave the ward if required for patient privacy. Visiting times are 10am – 8pm, visitors may be asked to leave at meal times or during busy periods. Please check with the transplant co-ordinator when your carer needs to be present on the ward.

If you require any additional support from your carer whilst at the Freeman please contact a co-ordinator prior to admission.

Carer flats

Your carer can stay in a nearby hotel or B & B or in the hospital flats if available. They cannot stay in the hospital with you.

You and your carer should use the assessment visit as an opportunity to ask as many questions as possible. Our team are here to help and guide you through this process.

As you’re working through the content on this website, you might think of questions you’d like to ask during the assessment visit. Write them down somewhere and bring them with you to the Freeman.

Some tips from some of our previous patients:

• come prepared with any questions you have, written down so you don’t forget to ask
• take notes so you can remember things later
• take some time to chat to your carer (and share notes) every evening about what you’ve learned that day
• don’t worry if you think of a question you’d like to ask after the assessment visit is over – you can call the Transplant Team and they’ll help

It’s important that you have appropriate care and support throughout your transplant recovery.

We do not know how long your recovery will take, and your carer will provide essential practical and emotional support throughout your admission.

Most patients choose their partner, a close family member, or a close friend to be their carer.

Your carer is likely to be your nominated next of kin.

Your carer is a crucial part of your recovery team. If you are concerned about your carer support at any time during your transplant experience, please discuss with a member of the transplant team.

It’s important that your carer is well informed of all the details of the transplant process. They will need to attend the assessment visit with you at the start of your transplant journey.

Your carer will then be required to be present at the hospital throughout most of your post-transplant recovery.

Throughout your recovery, your carer will support you with your practical and emotional needs. As someone you’re close to, they will also provide vital encouragement and motivation.

During your initial recovery on the Intensive Care Unit, ward staff may need to discuss your progress and treatment with your carer if you are unable to communicate yourself.

As you continue your recovery on ward 38, your carer will have a greater role supporting your practical needs and gradual rehabilitation.

You and your carer will learn about your transplant recovery together as you gradually prepare to return home. You’ll have a number of education sessions with the nursing staff, who’ll explain your medication regime and how to look after your transplanted organ. There’s a lot of information to take in, so it’s important that your carer is with you during all of these sessions.

Your carer will be required to keep to the visiting times of the different wards you’ll be on during your recovery.

Your carer may be required to take time off from work during your recovery, or to make arrangements for the care of other family members.

It’s important that you’ve made plans to enable your carer to be with you throughout the process, and these may have to be revised depending on the length of time you’re on the transplant waiting list.

It may be possible to share some of the responsibility of the carer role with another close family member or friend, especially if your admission is a long one.

This process can be stressful for carers. They’ll have supported you throughout your time on the waiting list and through the operation. They’ll now be concerned about your recovery. They’re also dealing with being away from home themselves.

Carers should regularly take time to rest and recuperate.

There’s easy access to walks, gyms and shops from the hospital. Should your carer need to see a G.P. during their stay, they can register at one of the local surgeries as a temporary resident.

The transplant team is here to support your carer too.  You and your carer will have met with the transplant team social worker during your assessment, and they will be available during your admission for advice and support.

Our transplant psychology service runs a monthly Carers’ Café, which provides an informal setting to meet with other transplant carers.

It can be difficult to talk to your family about your illness and your assessment for transplant.  

Your closest family and friends will be very concerned but may not know what to say and may not understand the implications of being referred for transplant.

If you have young children, it can be especially difficult to talk to them about transplant and to know how much to share with them. They may see transplant as a quick fix to make you better and wonder why you have not had your transplant yet. It’s always a good start to ask your child about what they understand and what they want to know. The conversations may be difficult, but your child will know that they can always share their feelings with you. Your child’s school may also have a good pastoral service you can access. If you’re still concerned about your child you may wish to discuss additional professional support with your GP.

It may be helpful if you share this website with those closest to you, or work through the content here together.

If you want further advice and support, please talk to a member of the transplant team.

If you’re accepted onto the waiting list, you will meet a surgeon and an anaesthetist.

The surgeon will go through the operation consent process with you. 

One of our anaesthetists will talk to you about the anaesthetic and pain relief.

You will have the opportunity to ask any questions about your surgery and recovery.

Please note that the surgeon and anaesthetist you meet won’t necessarily be the ones that will be meeting at the time of your transplant.

If you’re accepted onto the waiting list, your co-ordinator will phone you and send an information pack to you through the post.

This pack will contain:

• a letter for your GP, which will instruct them to bring you up to date with certain vaccinations
• a letter for your dentist, which will ask you to have a dental check-up if you haven’t recently had one

All dental work needs to be carried out before you are activated onto the list. Any teeth which could cause infection after the transplant need to be removed.

We’ll ask your GP to prescribe the necessary mouthwash for you to maintain good oral hygiene. Mouthwash can occasionally cause discolouration of the teeth, if this is the case, you can dilute the mouthwash or alternatively, you may buy a good quality mouthwash if you wish.

When you get called in for a potential transplant, it will be with short notice.

You should make arrangements for your children and pets to be cared for in your absence.

Checklists are useful for planning tasks in advance. Your list may include:

• turning off the heating and water
• stopping milk and newspaper deliveries
• emptying the fridge
• finding care for children and or pets

A neighbour or friend may attend to these while you’re away. 

You’ll need an appropriate supply of any medication you’re taking. It’s also important to bring any medication that your carer will need, as the hospital cannot supply their medications.

If you get called in for a transplant operation, you will have to leave home in a hurry. It’s a good idea for you and your carer to pack a hospital bag in readiness for your transplant.

Please remember that storage space is limited.  

The following list suggests some basic items you should pack:

Staying in our flats

If you’re coming from out of town, you may be staying in our flats after your initial recovery on the ward. You might want to pack essentials for living in self-catering facilities, such as food and cleaning products.

There is a well-stocked shop at the hospital, and local supermarkets are within a 10-15 minute walk. Bedding and crockery are provided.

Once you have completed your list of jobs, ring your coordinator and let them know.

Your co-ordinator will be waiting for some blood results before they can activate you onto the list. This process usually takes approximately 4 weeks. The microbiology team may also be analysing your sputum and creating a cocktail of antibiotics which will be given to you at the time of your transplant, this may also take a few weeks to put into place.

Once the co-ordinator has these results available they will ring you and make sure that your vaccinations and dental check is up to date. At this point you will go “live” on the active list.

The transplant waiting list is different from other surgical waiting lists. You do not start at the bottom of the list and work your way to the top. Organs are offered to patients who are the best size and tissue match, starting with the sickest patient first.

The active list is split into 2 categories, routine and priority. Those patients who are the most sick will be placed on the priority list. Other patients who are a bit more stable will go onto the routine list.

If your condition deteriorates while you are waiting for your transplant, you must let the co-ordinators know.

There is a national urgent waiting list for very sick patients, there is very strict criteria to meet before a patient can be placed on the urgent waiting list, but it does give the sickest patients a chance of being transplanted before they become too unwell.

While on the waiting list you must try to carry on a normal.

It’s important that you maintain your fitness by attending pulmonary rehab classes where possible, or doing gentle exercise at home. You also need to make sure you continue to follow a recommended diet to maintain a healthy weight. You will be told what a healthy weight is for you when you come in for assessment.

While on the waiting list you are able to go away on holiday if you wish. We are still able to call you in for a transplant from anywhere in the UK but please let the co-ordinators know if you are planning to stay a long way from your home address. Holidays abroad are also permitted, however we would not be able to call you in for a transplant while you are out of the country.

The transplant team at the Freeman will keep in contact with you while you are on the list. We will try and review you in either a video appointment or telephone consultation. 

We need to make sure you are still fit enough for a transplant and no new issues have occurred.

Your referring team are still in charge of your care while you are waiting on the list, and they should make regular appointments to see you.

If you become unwell you must contact your GP or local team for advice. You should also inform your transplant co-ordinator of any changes in your condition.

It’s important to inform the co-ordinators if you need antibiotics for any reason, as we would not be able to transplant you if you have an active infection. When you complete the course of antibiotics please ring the coordinators and let them know.

On an average month, approximately 85 heart and lung offers are made. Most of these offers are not suitable for transplantation and are turned down.

During an average month, approximately 12 -14 organs are considered good enough to set up as a potential transplant. This is when a patient is called in to the Freeman in preparation for surgery. Approximately half of these cases will proceed to a transplant, although numbers can vary from month to month.

The quality of the organs we use must be of a very high standard and are inspected thoroughly before being accepted.

When you’re placed on the waiting list, you’re listed according to what operation you need. For example, double lung transplant ,single lung transplant., heart-lung or heart only.

Other important information we need to document is your:

• blood group
• height
• weight
• total lung capacity for lungs
• Right heart catheter results for hearts

We’ll also need the results of your tissue typing blood test (HLA). This is what helps us match you with the most suitable donor.

When you’re accepted onto the transplant list, you’ll be given some information about different types of donors.

The information describes the risk to you if you accepted organs from each of these categories. The risk is very small but you should take the information home with you and read it carefully. You can ring your co-ordinator and discuss anything that you might not understand.

You will also be given a form to complete which will allow you to decide if there are any donors in these categories that you would not like to accept. You can always change your mind about your choices but it is important to remember that the more donors you decline the less offers you will get.

All organs are thoroughly inspected by a team of transplant surgeons before being accepted for use and we would not accept anything we didn’t think would be good enough for you.

All donors will have been cared for in an I.C.U. setting.

Whatever happened to your donor, every effort will have been made to help them recover. Sadly, their I.C.U. team made the decision that any further care would be futile.

At this point, the donor’s family will be approached to discuss organ donation.

If the family agrees to donation, the National Organ Transplant Office is notified and they then allocate the organs appropriately to each transplant centre.  

You may experience very mixed feelings when you go onto the active list.

You may feel proud and excited that you’ve been listed, but also scared about what is to come.

Many patients say they have feelings of guilt about the donor and that they feel “bad” about waiting for someone to die in order to let them live.

It’s important to recognise that your donor will die regardless of your need for a transplant. The donor’s family have offered their loved one’s organs as a gift and it gives them hope and strength during their tragedy.    

When a donor organ becomes available, the transplant team at the Freeman Hospital will be notified.

Once the co-ordinator and surgeon on call have decided that the organ sounds good enough, a suitable patient is chosen from the waiting list.

The way to decide who is going to be the suitable recipient is as follows:

• height
• weight
• blood group
• tissue typing (HLA)
• clinical need

Based on blood group, size and tissue typing, a number of patients could be suitable for that particular donor. The sickest of these patients is chosen first.

If you are on the national urgent waiting list the central donation hub will contact the transplant coordinator with an offer for you specifically.

If you’re chosen, the co-ordinator will telephone you.

There are eight transplant co-ordinators who work as part of the transplant team at Newcastle. Each co-ordinator takes turns to be on call for donor offers.

You could be called by any one of the co-ordinators who work on a rota system, not necessarily the co-ordinator you met during your assessment.

The co-ordinator will ring you on either your landline or mobile phone. This call could happen at any time, day or night, so it’s important to keep your phone nearby, switched on and charged at all times.

When we call, we’ll ask if you are fit enough to come in for transplant. For example, do you have any new coughs, colds, temperature, antibiotics, or any new issues.

If you have a current infection, we would not bring you in for transplant as it would not be safe to do so. This is due to the anti-rejection medication (immunosuppression) that we give you at the time of transplant, which reduces your chance of fighting infection.

The co-ordinator will also let you know if you need to be nil by mouth at this point.

Once you go onto the active list, it’s important to have your bags packed and ready. We recommend that you should be able to leave the house within approximately 30 minutes, however timings can vary with each offer. The co-ordinator will discuss timings when they phone.

Travelling in an ambulance

You may be advised that we need to bring you in quickly, in which case the co-ordinator can arrange transport via blue light ambulance or air ambulance. 

If your operation does not go ahead, you may have an extended stay at the Freeman Hospital while we wait for an ambulance to become available to take you home. This could be a number of days. 

Driving

If timings allow, you can choose to drive to the Freeman if you would prefer.

The added advantage of this is if the transplant does not go ahead, you have your own transport to get back home. 

When you come in for your transplant, it may be possible to provide accommodation for your carer, this unfortunately cannot be guaranteed. We cannot accommodate more than one carer per patient. Your carer can also arrange to stay at a nearby hotel or B&B if that’s more suitable.

Once you’re discharged from the hospital, you can stay with your carer at the flats or in private accommodation nearby.

Do not call too many people when you receive the call for a possible transplant.

There’s always a chance that the donor organs may not be suitable, and you’ll be sent home again.

It’s best to wait before you tell people, until we can definitely tell you the operation is going ahead. 

Your carer will have plenty of time to make calls while you’re having the operation.

Before you set off for the hospital, we’ll tell you which ward to go to. On arrival, a member of the nursing staff will admit you, usually to a bed in the cardiothoracic centre or to ward 38 in the IOT. 

You’ll meet one of the transplant co-ordinators who’ll update you with the progress of the transplant.

A doctor will ask you questions about your health and medication. They’ll also take blood samples.

Clinical observations – such as temperature – will be checked, and you’ll have some tests like a CXR and an ECG.

The nursing staff will help you with a shower or bedside wash in antiseptic lotion. The staff will guide you in what areas will need to be shaved pre-op. You’ll be asked to wear a theatre gown and TED stockings.

Whilst the ward staff are getting you prepared, the transplant co-ordinator will be organising a team of surgeons who’ll travel to the hospital where the donor is being cared for.

Their job is to assess the quality of the organs, and decide if they’re suitable to use for your transplant.

Before this assessment can take place, the donor has to be moved from the intensive care into theatre at the donor hospital. The donor co-ordinator then organises the surgical teams who are there to assess all of the organs that have been offered. This process often takes a number of hours and quite often there are delays in the process.

If the decision is made not to use the donor organ, we appreciate that you’ll feel very upset and disappointed. Sometimes patients can experience a feeling of relief too. You and your carer will have very mixed emotions at this time.

The transplant co-ordinator will explain the reasons for not accepting the organ.

We only accept donor organs that we feel are good enough for use. A large number of organs are declined either at offer, or inspection, and only the very best are accepted for use in transplant. 

Remember that you may be called in for ‘no go’s’ before we find the organ that is suitable for you. You may be lucky and transplanted on your first call, however the highest number of calls one person has received is 17!

If the organ is not suitable for you, the co-ordinator will inform you of the reason. You’ll then be allowed to eat and drink until you are ready to go back home, depending on transport availability. 

If the organ is suitable on inspection and the transplant can go ahead, we’ll inform you. 

We may ask you to take some anti-rejection medication before moving you to the anaesthetic room. Your carer can accompany you to the theatre reception. 

Once you’ve been handed over to the anaesthetic team, they will then be in charge of your care.

The Transplant Co-ordinator team is primarily involved in the assessment, listing and transplantation phases of the patient’s journey. Following transplant, responsibility for the patient’s ongoing care and clinical management transfers to Intensive Care Team and Transplant Physicians.

Your carer

We’ll take contact details from your carer, which will be passed onto the intensive care staff. We’ll ensure they have somewhere to stay and they’re aware of the next stages. 

Intensive care will phone when your carer once the operation is over and you’ve been transferred to ward 21 (intensive care).

The transplant team will talk to you about the type of transplant that you need. This will depend on the nature of your illness, the results of various investigations and the likely outcome after the transplant.

Heart transplants

For heart transplant recipients, all cases will undergo what is known as an orthotopic heart transplant, where the recipient’s heart is removed and replaced with a donor’s heart.

Lung transplants

Lung transplants can take a variety of forms. Sometimes transplantation of just one lung is required, leaving one of the recipient’s own lungs in place. However, this is not appropriate or suitable for everyone.

Most frequently, a bilateral (or double) lung transplant is performed. This is where both lungs are removed and replaced with two lungs from the same donor.

Heart-lung transplants

Sometimes it’s necessary to transplant the heart and both lungs together, because the heart has been affected by the lung disease or vice versa. This is known as a ‘heart-lung transplant’. These operations are very rare in practice but necessary in some cases. Very few suitable donor organs are available for this operation, as priority is generally given to people who need an urgent heart transplant or an urgent lung transplant. This means that combined heart and lung organs from the same donor are infrequently available.

You can find more information about heart-lung transplants on the NHS website.

A heart-lung transplant is offered to people with both heart and lung failure.

Very few suitable donor organs are available for this operation, and priority is generally given to people who only need a heart transplant.

You can find more information about heart-lung transplants on the NHS website.

The operation

This operation is rare but combines elements of both the heart only and double lung transplants. It is done through an incision down the centre of the chest (sternotomy).

During the operation for a heart-lung transplant, your heart and both lungs are removed whilst you are supported by the heart-lung (cardiopulmonary bypass machine). A portion of your own heart is left behind to attach the new heart in a similar fashion to a heart only transplant.

The lungs are attached as a pair rather than separately and the airway is joined at the lower end of the windpipe (trachea) rather than to each bronchus as in a double lung transplant.

The operation is conducted and concludes in the same way as for the heart and lung transplant operations described earlier.

The transplanted organs will not have the usual nerve supply, so you will not feel irritation below the connection with your new lungs. Therefore, you will not be stimulated to cough spontaneously by the presence of infection or mucus in your lungs.

It is important that if you feel mucus or fluid at the back of your throat you make a conscious effort to clear it. The physiotherapist will teach you various routines and techniques to help maintain a clear airway soon after your operation.

After the operation you’ll be moved to the Intensive Care Unit (ICU). You’ll be nursed in a single cubicle, with nursing staff in attendance at all times.

Vikrant Pathania, Consultant Cardiac Anaesthetist at the Freeman Hospital, explains a little more about the ICU and how the team provides post-operative care to transplant patients.

When you wake up in the ICU, your bedside will be surrounded by a lot of essential technical equipment. The equipment is there to help you recover, and allow the nursing staff to keep monitoring you. For a while, you’ll be kept sedated using drugs.

Ventilator

You’ll be attached to a breathing machine (ventilator) through a tube in your mouth, and will be unable to speak. You may need suction down this tube at frequent intervals. This can sound unpleasant and feel uncomfortable but it helps keep your chest clear.

Gradually over a few hours, the sedation will be reduced and you’ll start breathing on your own. The tube will then be removed from your mouth and you’ll be able to speak. You’ll still need to breathe in oxygen through a facemask.

Intravenous drips

There will also be a few intravenous drips and machines at your bedside, and these will contain drugs which help maintain your vital signs (blood pressure and heart rate).

Pain management

Pain will be kept to a minimum by a continuous drip infusion of a pain-killing drug (this also makes you sleepy). An epidural drip may be inserted into you spine for pain control.

Catheter

At the time of the operation, we place a catheter into your bladder so we can monitor how your kidneys are working. This is normally removed after a couple of days.

Drains

You will have several drains in place. These are thin pipes which allow blood to drain in bottles. These will be removed after a couple of days.

In intensive care, you’ll be nursed in a single cubicle, with nursing staff in attendance at all times.

Because of the risk of chest infection following a general anaesthetic, you’ll be visited frequently by the physiotherapist, who will help you with chest physiotherapy and breathing exercises. When you’re well enough, they’ll help you start gradual exercises around the cubicle.

When your condition is stable enough, you’ll be transferred from the ICU to Ward 38, where you’ll spend most of your recovery period.

This transfer normally occurs in the week after your operation, but this depends on each patient’s needs.

A maximum of two visitors will be allowed into your room for the first seven days and this must be the same two people.

Reducing the number of people entering your room reduces the risk of infection.

Visiting times on I.C.U are 10 am – 2 pm daily. Children under the age of 16 years are not encouraged to visit this department.

When your condition is stable enough, you’ll be transferred to Ward 38 where you’ll spend the rest of your recovery period.

This transfer normally occurs in the week after your operation. This depends on each patient’s needs.

Patients typically spend between 3 and 6 weeks recovering on the ward, before being discharged home.

We want your stay in hospital to be as comfortable as possible. All of the food we serve in the wards is cooked fresh on-site and we have a wide range of options for you to choose from, including dishes that cater to specific allergies/intolerances and to cultural or religious diets.

Food on the ward

On the ward, you’ll be provided with a menu questionnaire each week. You can fill this in to tell us what you’d like to eat, and also notify us about any allergens, intolerances, or special dietary requirements. You can see a sample menu questionnaire below:

Chattery restaurant

A warm welcome awaits staff, patients, and visitors at our Chattery restaurant, which is situated on level 1 of the main ward block. We serve both hot and cold meals, sandwiches, snacks and beverages. Food and drink is also available for takeaway. Opening times are as follows:

• Breakfast served from 7:30am – 11am
• Main meals served from 11:30am – 7pm

Freeman shop

We also have a shop, situated on level 2 near the main entrance of the hospital, which offers a large range of snacks, confectionery, and magazines. It also sells items like toiletries, groceries, and freshly-baked bread. Opening times are as follows:

• 7:30am – 7:45pm, Monday to Friday
• 8am – 7pm, Saturday and Sunday

Visiting times on the ward are usually 10am to 8pm.

Visiting ‘out of hours’ will only be allowed with the permission of the senior nurse on duty.

Ciclosporin is an immunosuppressant medicine which requires regular blood tests to check the level in your blood. This dose is then adjusted to suit you personally over a period of time and it is important to take it exactly as you have been instructed. The dose you will take will change  regularly to begin with so it is very important that you get your blood levels checked when asked and you keep a record of the change of dose.

The medication is taken twice daily at 12 hour intervals. You must not stop taking this medication unless told to do so by your transplant team.

Ciclosporin should not be removed from packaging until you are ready to take it.

Do not eat or drink grapefruit juice while on Ciclosporin as it can increase the levels of the drug in your blood in an unpredictable manner.

Side-effects of Ciclosporin

Side-effects of Ciclosporin can include:

• a slight shaking of hands, muscle cramps
• decreased kidney function – the dose is adjusted over time to minimise this problem but it is something that your transplant team will be vigilant for whilst you are taking this medication
• increased body hair
• swollen or bleeding gums
• nausea and vomiting.
• changes in taste
• high blood pressure – this will be monitored closely and can be treated with anti hypertensive drugs
• raised cholesterol levels
• headaches, tingling hands and feet
• gout

Tacrolimus is also an immunosuppressant medicine used as an alternative to Ciclosporin. It also requires regular blood tests to monitor the level in your blood stream. The dose is adjusted to suit you personally over a period of time and it is important that you take it exactly as instructed.

Tacrolimus should be taken twice a day, either 1 hour before food or 2 hours after as food can reduce the amount of drug that is absorbed into the blood.

Do not eat or drink grapefruit juice while taking this medicine.

Side-effects of Tacrolimus

• A slight shaking of hands and muscle cramps.
• Increased blood sugar ( diabetes), this will be closely monitored and possibly treated with medication.
• Nausea, vomiting.
• High blood pressure.
• Raised cholesterol.
• Decreased kidney function.
• Hair loss.
• Gout.

Azathioprine is an immunosuppressant medication used in combination with other medicines.

Regular blood tests are performed and the dose altered accordingly. It is usually taken once a day in the evening with or after food. The tablets should not be broken or crushed but are small enough to swallow.

Side-effects of Azathioprine

• Nausea, vomiting.
• Liver dysfunction.
• Blood disorders with increased risk of bleeding, blood tests will be performed to monitor this.
• Rashes, hair loss.

MMF is an immunosuppressant medicine used as an alternative to Azathioprine.

Regular blood tests are performed and the dose altered accordingly. It is usually taken once a day with or after food.

Side-effects of Mycophenolate Mofetil (MMF)

• Nausea, vomiting.
• Blood disorders with increased risk of bleeding.

Immunosuppressant medicines can help stop your body from rejecting your new organ but the make you less able to fight infections. To try and prevent infections occurring a combination of anti – infective medicines may be used. Some are to fight off bacteria and some will fight off viruses and some will help fight off fungal infections.

Aciclovir

Acicolovir is used to prevent viral infections which can cause shingles, cold sores and chickenpox. The transplant team will instruct you when to take these and for how long.

Side effects can include: diarrhoea, stomach upset, nausea, occasionally dizziness and confusion.

Gancyclovir/Valgancyclovir

These are used to treat or prevent cytomegalovirus (CMV) You may be prescribed this if you are more susceptible to the virus and it may be administered via a drip or tablet form.

Co-trimoxaxole

Co – trimoxazole is an antibiotic. It is used at a low dose to prevent a type of pneumonia called pneumoncystis. It is taken once a day as instructed by your transplant team.

Side effects can include nausea and vomiting.

Nystatin

Nystatin is an anti fungal drug used to prevent fungal infections of the mouth like thrush. It can be given as a mouth wash.

Prednisolone /methylprednisolone are steroids which are used as immunosuppressants.

Methylprednisolone is used as an infusion during your operation and immediately after until you can take tablets.

It can also be used to treat acute rejection over a period of 3 days.

Methylprednisolne is normally followed by high dose of prednisolone tablets. The dose is gradually reduced over time to a low maintenance dose.

Prednisolone is usually taken in the morning with or after food.

Side-effects of steroids

• High blood pressure and swelling of the ankles if water is retained.
• Muscle wasting.
• Osteoporosis (weak bones) This can occur after a long time on steroids. Bone medicine may be prescribed to prevent this.
• Stomach upsets.
• Fullness of face (moon face) Can disappear over time once the dose is reduced.
• Increased appetite.
• Thinning of skin making cuts harder to heal.
• Increased blood sugar (diabetes).
• Mood swings feelings of depression or difficulty in sleeping/restlessness.
• Eye problems.

Listed below are examples of the other most common medicines you may be prescribed .

Painkillers

Most patients experience some pain and discomfort after the operation. There are a number of methods that can be used to make you as comfortable as possible. Immediately after surgery you may given an epidural or an continuous infusion of a morphine based drug. As soon as you can eat and drink you will be changed to appropriate pain control tablets or solution. When you are discharged home your transplant team will ensure you have a supply of painkillers. There are certain painkillers you must avoid as they can cause kidney dysfunction and stomach upsets, Ibuprofen and aspirin based medicines should be avoided. As with all painkillers you must not take more than the recommended daily amount .

Lipid lowering medicines

These medicines are used to lower the cholesterol level in your blood which might be raised as a side effect of some immunosuppressant medicines.

Possible side effects of these medicines include headaches, altered liver function, stomach upset. Muscle pain and weakness should be reported to the transplant team immediately.

Anti-reflux medicines

Some of the important immunosuppressant medicines can cause irritation of the stomach lining that may lead to stomach ulcers. To prevent this happening you will be given anti-reflux medication. The most commonly used are:

• Rantidine – side effects can include headaches, tiredness, skin rashes.
• Omeprazole/lansoprazole/esomeprazole – side effects can include diarrhoea, constipation, stomach upset, dizziness, headaches, and changes in liver function.

Antibiotics/anti-fungal medication

Lung transplant patients can often be prescribed nebulised antibiotic/anti fungal medication. You will be taught how to administer this medicine before you go home.

There are a number of medicines that may interact with your transplant medicines. There are some over the counter medicines that you can buy without prescription that should be avoided. These include any medication that contains aspirin and ibuprofen, taking these medications can affect your kidney function.

Low dose aspirin prescribed by the transplant team is safe to take as it should not affect your kidney function and will be closely monitored.

Herbal medicines can interact with your immunosuppressant medicines. St Johns Wart in particular can interfere with the potency of your transplant medicines. Do not take any medications without discussing it with your transplant team first.

You may need a course of antibiotics in the future which can be prescribed by your GP, again it is always important to check with the transplant team before taking them.

The dose of your transplant medicines will change regularly to begin with but will be reduced over time, it is important to keep a record of your current dose and keep in touch with the transplant team to keep up with any changes.

If you require any vaccinations after your transplant for any reason you must check with the transplant team if it’s safe to have. You must have the dead variety of vaccinations not the live variety.

Before your eventual discharge home, you’ll be given help and advice to enable you to build on your restored fitness.

Provided you’re feeling well enough, you can continue to attend the gym until discharged home.

If you live locally, and are discharged home within the first 2-3 weeks after your operation, you’ll be expected to continue attending the gym as an outpatient.

Because of the risk of chest infection following a general anaesthetic, you will be visited frequently by the physiotherapist, who will help you with chest physiotherapy and breathing exercises. When you’re well enough, you’ll start gradual exercises around the cubicle.

One week following you transplant, you’ll have your first routine cardiac biopsy/bronchoscopy. If all is well, you’ll be able to start attending the physiotherapy gym. Gym sessions are held daily.

You’ll be given a progressive exercise programme. Because your operation wounds need time to heal, only very gentle exercises are prescribed to begin with.

You will need appropriate footwear and loose clothing for these sessions. 

It’s likely that your general fitness will have suffered before your transplant surgery. To build your general fitness back up, you must exercise on a regular basis.

To help you do this, we’ll work with you to develop an exercise programme that fits your individual needs.

You’ll be instructed in simple leg and arm exercises, which help to maintain joint mobility and enhance your muscle strength. You’ll also receive advice on simple exercises which will help avoid problems with poor circulation as a result of being inactive. 

Typically, patients are able to sit in a chair to exercise by the second day after their operation. By the third day, many patients are able to start walking around the cubicle. 

As your health improves, the distance you walk will increase. Once you’re well enough, you’ll be able to leave your cubicle for longer walks. You’ll also be shown how to use the static exercise cycle, and encouraged to pedal for longer periods as you become stronger.

Each time you attend clinic you will have your bloods taken, so do not take your ciclosporin/tacrolimus before you come to
clinic. Please bring it with you to take after your blood test. If you prefer you may take your other medication before clinic or later when you take your ciclosporin/tacrolimus.

You will be seen by a transplant nurse. The nurse will check your weight, blood pressure, temperature, heart rate and oxygen saturation. They will also go through your current medication with you and discuss any issues you may have. Please bring your medication list with you (red book/file).

After having our bloods taken and seeing the nurse you will have a chest x-ray and lung function tests or an ECG. Occasionally an ultrasound scan of your heart (echo) may be needed.

After having these tests you will return to transplant outpatients to be seen by a member of the medical team.

If you live in England, you will also be given a prescription to take to our pharmacy for your immunosuppressant medication.

Occasionally you may need to come to clinic just for blood tests. This appointment takes approximately one hour. You will be seen by a transplant nurse and the phlebotomist will take your blood. If you do not live close enough to the hospital to attend for a bloods only appointment we will tell you how to get these done at your GP’s surgery.

A year after transplant all patients have their coronary arteries checked for coronary disease and this continues on a yearly basis.

This involves having a CT scan. The CT scan will be scheduled on a routine clinic appointment. The procedure takes place in the x-ray department and takes about 30 minutes. If you have an allergy to iodine please tell the nurse.

After each appointment at the Outpatient Clinic, you’ll be given a day and time to ring for any changes in your medications and for your next clinic appointments.

Initially, appointments will be frequent – weekly in the first month after transplant – and the frequency reduces gradually to monthly after three months and every three months after one year. This is only a guide and can be more frequent depending on the needs of the individual patient but will certainly not be less frequent.

There is a psychology service five days a week which can be coordinated with your clinic visit. Patients can be seen via referral from the nursing team.

Usually, patients are ready for discharge about 4 weeks after the operation.

When you’re ready to be discharged, the outpatient team will explain the discharge routine.

Once you’re discharged from the ward, you will still need to make regular visits to the hospital. Visits will be organised to meet individual needs, but will be very frequent at first. You may be seen every other day in the clinic to begin with, but eventually your visits will reduce to monthly or six weekly.

Feeling nervous about being discharged

Although you will have been looking forward to the day when you leave the hospital, it’s normal to feel slightly apprehensive and insecure when the time comes. However, you’ll soon regain your confidence and independence.

Having a transplant is both physically and emotionally demanding for you and your family. You may find you’re more edgy and temperamental for a while, and this is totally normal. 

Please don’t hesitate to talk to us if you’re feeling low or finding things difficult to cope with.

Checking your temperature

When you record your temperature at home, if it’s above 37c, you should check it one hour later and let us know if it is still raised. You may be asked to report to the hospital or get your GP to see you. A rise in temperature may be a sign of rejection or infection

Maintaining good hygiene

When you go home you should maintain a high standard of personal hygiene. Washing hands after using the toilet, keeping eating utensils clean and maintaining a clean food area.

Dental care

If you wear dentures, you may find they lose their fit due to gum changes. If you experience any ulceration seek treatment immediately.

The dietitian will tell you your ideal weight, and you should try to maintain this ideal weight as closely as possible. Your weight will be measured at 8.00am each day, as fluid retention causes an increase in weight.

Extra weight can cause strain on the heart and cause other problems.

A continuous decrease in weight will leave you inadequate fat and protein reserves for your body to use during infection or rejection.

After you’re discharged home, it’ll be necessary for heart transplants to weigh themselves each morning and let us know should weight increase by 2 kg in 24 hours. This could be a sign of rejection.

Typically, patients are able to return to work about 3 months after the transplant operation, provided the medical staff approve.

Even when you’re back at work, you’ll need to attend the outpatients’ clinic regularly, so having a supportive employer helps.

We know that writing can feel daunting and finding the right words can be difficult.

Remember, your letter is about thanking and acknowledging your donor family, it is not an English exam! Simply say what you feel: doesn’t matter if your communication is long or short, the fact you have written will mean so much.

If you feel nervous writing, your Recipient Coordinator will be happy to help you, or perhaps you could involve a family member and include their thoughts about how your transplant has affected the whole family.

Many recipients worry that writing will add to their donor family’s grief or that talking of their hopes for a new and better life would be inappropriate when their donor family are grieving. Please know that this is not the case.

Every family has the choice of when to open your letter so it will never be read at the wrong time. Donor families make the brave decision to support donation because they want their loved one to save others. Your news will show they have achieved this and most take great comfort from that knowledge.

When you write to your donor family maintaining your confidentiality is of great importance. Therefore it is important that the information contained in your letter helps maintain this. The tick box below is an easy way to ensure you achieve this and also gives you some ideas about information you may wish to share in your letter, simply tick off as you write your letter.

We want writing to your donor’s family to be as easy as possible. We appreciate that not everyone has a writing set with paper and envelopes at home, and it’s important that you can communicate in the way which is easiest for you.

Personal information

Regardless of whether you choose to write a physical letter or a digital one, you should include the following information on a separate sheet or document:

• Your name
• Your date of birth
• The date and type of your transplant
• The hospital where you received your transplant

This information will be used to make sure we can identify your donor family correctly.

Sending a physical letter or card

Put your letter or card in an envelope, along with the above information on a separate sheet of paper. Leave the letter open and hand it into clinic or reception who will pass it onto your transplant coordinator. They will then check the content and send it onto the donor family care service who in turn will contact your donor family.

If your donor family wishes to contact you, the same process will happen in reverse, your transplant coordinator will contact you to let you know a letter from your donor family has arrived in the office and then send it onto you if you’re happy to receive it.

Sending a letter electronically

Write your letter either as an email or as a Word attachment to an email, and send it to: transplant.recipientcare@nhsbt.nhs.uk

Ensure you include on the email the personal information listed above to help us identify your donor family. We will then either print your letter onto high quality stationery and send it to your donor family on your behalf, or if they prefer we will send it as an email from our NHS account.

We live in an increasingly digital age, and you may want to share news of your transplant across social media.

Please remember that your good news is your donor families’ bereavement and we don’t want the privacy of either of you to be compromised.

Therefore, please do not share the date and hospital of your transplant and treat any information you have about your donor family in strictest confidence. If you want to make contact with your donor family please do this via NHSBT so we can ensure it’s done in a way that works for you and your donor family.