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Life after a transplant

USEFUL TIPSfor long-term health

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Foreword

Dear patient,

You have recently received a donor organ. You will most likely have

experienced a long wait for it and an extended hospital stay. Now, normality

and a regular daily routine will slowly return. You should follow certain advice

in order to achieve a good long-term quality of life with your new organ, and

without developing any complications.

In this information brochure, we would like to give you a couple of tips for your

future everyday life, and dispel any worries or concerns you may have.

A good level of cooperation between you and the doctors looking after your

treatment is particularly important following your transplant. Take good care of

yourself and contact your transplant centre if you experience new complications.

You should remember to always have an adequate supply of your - now

essential - medication (immunosuppressants) at hand. As you will no longer

be able to do without these for the rest of your life and regular visits to the

doctor will be unavoidable, you are deemed to be a “chronically ill patient”.

It is also important when you go on holiday that you always take your

medication schedule and the contact address of your transplant centre with you.

Please remember that not all the advice in this brochure is universally

applicable, and individual experiences as well as the approach each centre

takes may vary.

We wish you all the best with your new donor organ.

Yours sincerely, Gesa Pamperin

Chairperson – ATX Pflege e.V.

Company details

Chiesi GmbH

Gasstraße 6

22761 Hamburg

www.chiesi.de

Gesa Pamperin

AKTX Pflege e.V.

Poppenbütteler Weg 128

22399 Hamburg

www.transplantationspflege.de

(www.transplant-care.de)

Editing and designKW medipoint

Röttgener Str. 162

53127 Bonn

www.kw-medipoint.de

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Table of Contents General information

Foreword ..........................................................................................................3

General information ..........................................................................................5

Tips for a healthy diet and lifestyle ...................................................................7

Drinking .......................................................................................................8

Nutrition ......................................................................................................9

Body weight ..............................................................................................13

Sport and exercise ....................................................................................14

Experiencing complications – what should I do in the event of…? ................15

Fever ........................................................................................................15

Gastrointestinal symptoms ......................................................................16

You can find further information at … .............................................................17

Own notes ......................................................................................................18

What risks are associated with an organ transplant?

► Rejection reactions

► Increased risk of infection

► Increased risk of developing diabetes

► Increased cholesterol levels

► High blood pressure

► Increased risk of developing skin cancer

► Blood vessel restriction (stenosis)

► Surgical complications

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Tips for a healthy diet and lifestyle

The following applies in principle:

► Low-microbe

► Low sugar and salt

► Low cholesterol

► Reduce saturated fats (e.g. in many animal products such as butter or meat)

► Rich in vitamins and fibre

► Adequate fluid intake

► Exercise

What is the best way to protect myself?

You can guard against risks by leading a healthy lifestyle and adhering to

certain dos and don’ts:

► Maintain your intake of prescribed medication

► Attend check-ups and preventative screenings

► Eat a healthy, balanced diet

► Take regular exercise

► Have your blood sugar and cholesterol levels as well as blood pressure

checked regularly

► Maintain a healthy body weight

► Get enough sleep

► Avoid excessive exposure to sunlight

► If you experience itching: Have your liver function checked

► Note the appearance of your urine (e.g. colour)

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Drinking

How much should I drink every day? ► The amount you should drink every day will be determined for you by the

doctor at the hospital. As a rule, this is approximately two litres, but may

also be higher.

What types of drink can I consume? ► Mineral water, coffee and tea. Juices (ideally sugar-free) can be consumed,

however diluted fruit juices are better.

► Tap water should only be drunk if it has been boiled first.

► Avoid cola (contains phosphates) and grapefruit juice (has an impact on the

effectiveness of some immunosuppressants).

► A single-source intake of liquids should be avoided (particularly only

low-sodium water).

May I drink alcohol? ► It is best to avoid alcohol completely, particularly when you are a liver

transplant recipient. When taken in conjunction with the medication, alcohol

damages the new organ additionally.

Nutrition

Do I have to follow a special diet? ► No, a normal diet can be consumed with some restrictions. However, your

meal plan should be healthy and balanced.

► Due to the increased risk of developing high blood pressure, a low-salt diet

is recommended.

► Particularly in the initial months following a transplant, it is recommended

that you follow a low-microbe diet.

Should I avoid certain foodstuffs? ► Do not consume grapefruits or grapefruit juice. Avoid consuming St John’s

wort and schisandra. These have an impact on the effectiveness of some

immunosuppressants.

What is a low-microbe diet? ► The body’s immune system and consequently its ability to fight infection

is significantly compromised due to the immunosuppressive therapy.

Immunosuppressives, therefore, increase the risk of becoming ill from

microbes such as bacteria, fungi or viruses. In order to avoid contracting infections, therefore, following a low-microbe diet is recommended. This includes not only the selection of foodstuffs, but also their correct purchase, storage and preparation.

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Which products should I avoid on a low-microbe diet? ► Avoid raw foods or meals containing raw products (e.g. eggs, raw milk

products, sushi, Mett [minced pork with raw onions], tiramisu etc.).

► Avoid raw mushrooms and sprouts.

► Avoid fresh, unprocessed pulses, nuts and seeds as these may be

contaminated with invisible mould fungus.

What should I be aware of when I go shopping and when I store products?

► Buy fresh food and use it up quickly, so for that reason buy the smallest

portions possible.

► Transport highly perishable products in a cool bag.

► Ideally, store cheese and cold meats in closed containers.

► Fish, poultry and meat should not be stored beside other raw foodstuffs

such as fruit and vegetables.

Drinks

Mineral water Tap water (not boiled)

Diluted fruit juice Cola

Coffee Grapefruit juice

Tea Tea containing St John’s wort

Alcohol

Foodstuffs/Non-nutritional items

Lean, cooked animal products Fatty and raw animal products (e.g. meat, fish, eggs etc.)

Pasteurised, low-fat milk products Fatty, animal-sourced raw milk products (e.g. raw milk cheese, probiotic yoghurts, non-heat-treated milk etc.)

Products containing edible mould (e.g. blue cheese and salami)

Marzipan Fresh, unprocessed nuts and seeds

Peelable fruit and vegetables Grapefruit

Wholegrain products Sugary foods

Smoking

Outside the house

Ice-cream with an uninterrupted cool chain

Soft ice-cream

Bottled drinks Opened drinks

Ice cubes

Salad

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What is it important to remember when preparing meals? ► Heating meals kills microbes. Wash fish and meat before preparing it and

cook it thoroughly.

► Do not use a microwave to heat up food as this process does not kill

listeria, for example.

► Raw fruit and vegetables should be washed thoroughly and subsequently

peeled before you consume them. Avoid fruit with brown patches and flaws.

► Do not cut off mould where it is spread over a large surface area; throw

away any affected foods immediately instead.

► Defrost frozen goods in the fridge; defrost water should not come into

contact with other foodstuffs.

► Always wash your hands before and after preparing food.

► Change dishcloths regularly and wash tea towels at temperatures of at

least 60°C.

► Always clean work surfaces as well as cooking and chopping utensils

thoroughly.

► Use a chopping board made from glass and not from wood or plastic.

► Clean your fridge regularly.

Body weight

Why am I putting on weight after my transplant? ► Returning appetite but also the intake of cortisone leads to weight gain.

This is normal; however care should be taken not to become overweight.

How can I prevent myself from becoming overweight?

► Eat slowly.

► Preferably choose low-fat products.

► Your meal plan should include sufficient carbohydrates, fruit and

vegetables; less meat and protein.

► Daily exercise.

► Avoid unnecessary sugar and products containing fat.

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Experiencing complications – what should I do in the event of…?

Sport and exercise

When can I take up sport again?After your transplant, you should wait for at least three months before you

engage in sporting activities. In principle, there is nothing to stop you engaging

in sport; however, you should start gradually and be guided by how you feel.

What sporting activities can I engage in?In principle, endurance sports are recommended (running, jogging, walking,

cycling etc.). Swimming is possible but should be done in indoor swimming

pools or in bathing water with adequate water movement (e.g. the sea).

Avoid stagnant water such as lakes for bathing. It is essential that you protect

yourself from cooling down too much, and change wet swimwear immediately.

Participation in intensive physical sports such as combat sport is not advised.

Fever

Symptoms ► Increase in body temperature to 38°C and over

► Chills

Possible causes ► Inflammation reaction as the result of infection

► Indication of a rejection reaction

What do I have to do? ► Contact a doctor, your transplant outpatient clinic or an emergency department.

Prevention ► Remember to adhere strictly to your medication intake schedule (always at

the same time).

► Do not take any other (even over-the-counter) medications without

consulting your doctor.

► Avoid locations where there is a high risk of infection (public transport,

shopping centres, mass events, saunas and jacuzzis, kindergartens etc.).

► Follow the aforementioned nutritional tips.

► Avoid contact with individuals who are ill.

► Attend regular check-ups.

► Seek advice about vaccinations (e.g. flu, pneumonia) and follow current

recommendations from the vaccination commission.

► Enquire about possible risks before starting a foreign trip.

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Additional information

Gastrointestinal symptoms

Symptoms ► Change in bowel movements: stool quantity, change in the colour or

consistency of the stools (too hard or too liquid), black stools, blood in the stools

► Nausea and vomiting

► Stomach pain

Possible causes ► Infection

► Indication of a rejection reaction

► Intolerance to the medication

What do I have to do? ► Ensure adequate intake of fluids.

► Do not change the dose of your medication yourself.

► Contact your doctor if you experience gastrointestinal symptoms.

Prevention ► Attend regular check-ups.

► Notify your treating doctor promptly if you notice physical changes.

► Enquire about possible risks before starting a foreign trip.

AKTX Pflege e. V.http://www.transplantationspflege.de/ (http://www.transplant-care.de/) Bundeszentrale für gesundheitliche Aufklärung (Federal Centre for Health Education) www.bzga.de Bundeszentrum für Ernährung (Federal Centre for Nutrition) www.bzfe.de/ Bundesverband für Gesundheitsinformation und Verbraucherschutz – Info Gesundheit e.V. (Federal Association for Health Information and Consumer Protection – Health Information) www.bgv-transplantation.de/danach.html (www.bgv-transplantation.de/afterwards.html) Deutsche Gesellschaft für Ernährung e. V. (German Nutrition Society) www.dge.de/ Deutsche Leberstiftung (German Liver Foundation) www.deutsche-leberstiftung.de/ Deutsche Stiftung für Organtransplantation (German Organ Transplant Foundation) www.dso.de/Deutsche Transplantationsgesellschaft (German Transplant Society) www.d-t-g-online.de/Eurotransplant www.eurotransplant.org/cms/ International Transplant Nurses Society www.itns.org/Kuratorium für Dialyse und Nierentransplantation e. V. (Dialysis and Kidney Transplant Advisory Board) www.kfh.de/ Lebertransplantierte Deutschland e.V. (Liver Transplant Recipients, Germany) https://lebertransplantation.eu/ Onkopedia www.onkopedia.com/de/onkopedia-p/guidelines/ernaehrung-von-patienten-mit-geschwaechtem-immunsystem (www.onkopedia.com/de/onkopedia-p/guidelines/nutrition-for-patients-with-weakened-immune-systems)Robert Koch Institute (RKI) www.rki.de “FÜRS LEBEN” (FOR LIFE) foundation www.fuers-leben.de/ TransDia e. V. https://transdiaev.de/

Glossary

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For your notes

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