LIFESTYLE

Overview

Now that you have had a transplant your quality of life should be better than during your illness. With this improvement come a great many changes and new responsibilities.

Until now you have been looked after by your medical team at the transplant centre, but now it is your turn to take responsibility for your future health and well being.

This section will help you in all these aspects, from health to finance, from holidays to relationships.

REMEMBER if you need help ask your transplant team or us!

Your support network

Your transplant will not only have a major impact on your life, it will also affect the lives of your family and friends.

Before the transplant

There may be times before and after the transplant when you feel nervous and even depressed.

• Ask about support groups in your area
• Ask for help from the transplant centre – they may refer you to talk to a psychologist or social worker
• Share your feelings
• Learn relaxation techniques

After the transplant

There will be times when relationships with your partner, close family or friends are difficult as everybody adjusts to the new situation.

If you were ill before the transplant, you may have become dependent on others, and they may feel hurt or lost as you get used to your newfound independence.

• Talk to your transplant team
• Make use of local support groups

Above all, ask for help – don’t suffer in silence!

Getting the phone call

As soon as you have received the phone call, you must stop eating or drinking as you are about to undergo an operation.

Once you have received the call, keep the line free so that the doctor can call you and give you any further instructions if necessary.

If you have a heavy cold, fever or you are ill in any way, you must inform the transplant team member calling IMMEDIATELY.

It may mean that you will have to wait again until a suitable donor is found, but it is for your own benefit.

Lifestyle Exercise and Sports

Exercise and Sports

Regular exercise is an important part of maintaining your overall health. Before the transplant, you may have experienced difficulty in maintaining a regular exercise program due to disability, fatigue, and problems related to your disease. Now that you have received your transplant, it is important that you begin a regular monitored exercise program in order to recover from your surgery, regain your strength, and keep your heart, lungs and body in shape.

Your transplant team may give you some limitations to exercise. Before beginning any exercise program, you need to discuss the specifics with your doctors and nurses. A good way to start your exercise program is by regular walking. If you have no limitations, walking at a moderate pace 1/2 to 1 mile per day as soon as you are able is a good way to build your endurance and maintain your cardiovascular health. Increasing the distance and pace over time will not only keep your heart and lungs in good shape but will help prevent weight gain and will make you feel better in general. Swimming is another excellent exercise and, as long as it is approved by your transplant team, swimming can be an excellent addition to your transplant program.

Once you are completely healed from your transplant, involvement in most recreational sports is allowed. We recommend avoiding heavy contact sports, but have found that patients who participate in individual and team sports after their transplant have a good sense of satisfaction and accomplishment.

In addition, you could think of participating in the transplant games each summer

Managing weight gain

You are likely to find that your appetite has increased after your transplant, especially as you start to return to a normal lifestyle. However, some of the immunosuppressant medications can increase your appetite dramatically, and you might find that you are putting on too much weight!

In hospital, the dietician will discuss with you an eating plan that provides a balanced diet to meet your individual needs.

Exercise will also help you to control any excessive weight gain.

Exercise and Sports

Regular exercise is an important part of maintaining your overall health. Before the transplant, you may have experienced difficulty in maintaining a regular exercise program due to disability, fatigue, and problems related to your disease. Now that you have received your transplant, it is important that you begin a regular monitored exercise program in order to recover from your surgery, regain your strength, and keep your heart, lungs and body in shape.

Your transplant team may give you some limitations to exercise. Before beginning any exercise program, you need to discuss the specifics with your doctors and nurses. A good way to start your exercise program is by regular walking. If you have no limitations, walking at a moderate pace 1/2 to 1 mile per day as soon as you are able is a good way to build your endurance and maintain your cardiovascular health. Increasing the distance and pace over time will not only keep your heart and lungs in good shape but will help prevent weight gain and will make you feel better in general. Swimming is another excellent exercise and, as long as it is approved by your transplant team, swimming can be an excellent addition to your transplant program.

Once you are completely healed from your transplant, involvement in most recreational sports is allowed. We recommend avoiding heavy contact sports, but have found that patients who participate in individual and team sports after their transplant have a good sense of satisfaction and accomplishment.

In addition, you could think of participating in the transplant games each summer.

Managing hair loss

Steroid treatments and illness can cause your hair to change condition – particularly if you use chemicals such as dyes or bleach. Use of good hair conditioners and covering your hair when in the sun or the swimming pool will help to minimise any hair loss that might occur.

Managing hair growth

Unwanted body hair is an unfortunate side effect of your medications, but one that can be controlled with cosmetic methods such as waxing or use of depilatory creams. Often a change in medication or dosage can solve this problem – so do discuss it with your doctors.

Managing dry skin

If your skin starts to become dry, try using soap-free cleansers and moisturising body lotions after washing.

Acne can be very distressing, but by keeping your skin clean and drinking lots of fluids you may help to reduce outbreaks. Don’t use soap – try using soap-free cleansers that are less drying to your skin.

If you buy any acne preparations, remember to check with the pharmacist that it’s safe to use with your medications.

Bleeding gums

Good dental hygiene is vital after a transplant, as your mouth is an easy target for infections.

Regular check-ups with your dentist and hygienist will help to maintain oral health. Remember to tell your dentist about your medications.

Avoiding skin cancer

The use of immunosuppressive drugs puts you at an increased risk of developing skin and lip cancers. If you see any change in your skin, or are just not sure that it looks ‘right’, see you doctor straight away.

Always wear sunscreen on areas that are not covered, and keep a hat on when you’re outside in the sun.
Remember - the suns rays are the strongest between 10am and 3pm.

One of the potential complications of long-term immunosuppression is a higher risk of certain forms of cancer. About one in every ten transplant patients develops a form of cancer after their transplant.

Two forms of cancer occur more commonly in people who are taking immunosuppressants: skin cancer and lymph gland tumours.

Skin Cancer

is more common in people with sun-damaged skin and accounts for four out of every ten cancers seen after transplantation. As these are superficial it is relatively easy to treat them.

Lymph gland tumours (lymphomas)

also account for four in every ten cancers and may occur at any stage after a transplant. Some of these tumours shrink when the dose of immunosuppressant drugs is reduced, while others require chemotherapy.

Common forms of cancer,

such as cancer of the lung or bowel, or breast cancer, are no more common in transplant patients than they are in the general population.

New-onset diabetes after transplantation

What is new-onset diabetes after transplantation?

Diabetes (also known as diabetes mellitus) is a condition where the amount of glucose (sugar) in the blood is too high because of problems with insulin. Insulin is a hormone made and released by the pancreas, and helps to convert glucose into energy so that it can be used by the body.

There are two types of diabetes:

· Type 1 diabetes, is when the body cannot produce any insulin

· Type 2 diabetes, is more common¹ and develops when the body cannot make enough insulin, or when the insulin that is produced does not work properly (insulin resistance)

In the UK, diabetes affects at least 1.4 million people or 2-3% of the population², so some people have diabetes before they have a transplant. When the condition develops after a transplant operation, it is called new-onset diabetes after transplantation (NODAT) or post-transplant diabetes mellitus (PTDM).

The greatest risk of NODAT occurs in the first six months after transplantation, though at this time blood sugar may become normal without treatment². However, if NODAT develops a few years after the transplant, it must be treated³.

How common is NODAT?

It is difficult to give precise figures, but NODAT may affect as many as 53% of all transplant patients, though some studies report much lower figures⁴. However, it is possible to reduce the risks and possible adverse effects of NODAT.

What causes NODAT?

Some risk factors for NODAT are the same as those for diabetes in general¹, including:

·                       Age (people aged between 40-75)

·                       A family history of diabetes

·                       People with Afro-Caribbean or Asian backgrounds

·                       People who are very overweight

Transplant patients are also at risk because of:

· Hepatitis C virus

·    Treatment with immunosuppressive drugs, such as corticosteroids and calcineurin inhibitors, especially tacrolimus

Why is NODAT important?

NODAT is important because it:

·    Increases the risk that the transplanted organ will fail

·    Increases the risk of premature death, especially from heart disease and stroke¹⁰

·    May increase the risk of other complications seen in type 1 and type 2 diabetes, such as blindness (retinopathy), nerve damage (neuropathy), or kidney failure (nephropathy)

However, your risk of developing NODAT can be reduced, and treatment can lower the chance of serious complications if the condition does occur.

What are the symptoms of NODAT?

NODAT is similar to type 2 diabetes in that there can be no problems for years until complications (see above) or symptoms appear, so the condition may only be found after a routine clinic blood test.

However, you must tell your doctor if you are experiencing possible symptoms of untreated diabetes such as:

·                       Increased thirst

·                       Frequent urination, especially at night

·                       Extreme tiredness

·                       Weight loss

·                       Genital itching or regular episodes of thrush

·                       Blurred vision

How can NODAT be prevented?

You can reduce your risk of NODAT if you:

·                       Maintain a healthy weight

·                       Eat a healthy diet and take regular exercise

·                       Don’t smoke

Your doctor can advise you about a healthy diet and how to stop smoking.

If you develop NODAT, your doctor will work out the treatment that is right for you as an individual¹², but in general the approach is similar to that used to protect against possible long-term complications of type 2 diabetes¹²:

· Healthy lifestyle (see above)

· Tablets to control your blood sugar, though some people may need insulin injections

·  Tablets to control your blood pressure and cholesterol

·   Regular checks of your blood sugar. You should do this yourself at home, but your control will also be assessed at intervals by your unit, diabetes specialists or family doctor.

Your doctor may also suggest changing your immunosuppressive treatment, either by reducing the dose or switching to a similar drug. This is worth trying as it sometimes resolves NODAT.

Never stop or change any of your treatments without first talking to your doctor