Enjoy life with dialysis
Chronic kidney disease does not mean the end of a fulfilling life.
Try to maintain an optimistic mindset and make the most of what lies ahead. We have put together some points regarding important elements of everyday life.
Partner and family
Your family, partner, and friends are also affected by your diagnosis. The changes in your lifestyle are perceived by those around you. Don't exclude yourself, be open about your illness and involve the people who are important to you during these times.
Even the closest family members do not have the ability to read your mind. Expressing your needs is good for you. With the stress of kidney disease, it is important to maintain a sense of warmth and closeness with family and friends. Expressing feelings openly and honestly is important to your family's health and emotional well-being.
That way, those around you can get a better understanding of your feelings and react to your needs. However, it is important to not project your anger about your illness towards them. Give your loved ones the chance to grow into the new situation as well.
In addition, some patients may feel that they are a burden to their families. It is important to realise that kidney failure does not just affect individuals and has the potential to impact on the life of the family. Sharing your thoughts and feelings freely in an honest, respectful manner can help you and your family. This includes the negative feelings of sadness, anger, fear and resentment. Holding these thoughts and feelings inside may result in emotional distancing between family members.
Eventually, family life may return near to normal, with treatment included as more or less routine.
The following steps may be able to help you and your loved ones to reduce stress:
- Talking to the staff at the dialysis centres or transplant clinic.
- Writing down questions ahead of time and informing family members about changes in treatment.
- Finding out as much as possible about the illness through a National Kidney Association or Society, local or national support groups, written materials and educational classes.
- Staying involved in the pleasures, activities and responsibilities of daily living.
- Finding time to exercise at a level that suits your individual limits and to enjoy the outdoors. Please consult with your physician to find out appropriate exercise options for you.
- Sharing your feelings with family or close friends and other patients.
- Seeking help from a social worker at the dialysis unit, transplant clinic or from an outside counselor if family or personal problems need further attention.
- Setting realistic goals in adjusting to all lifestyle changes.
Leisure time
Leisure activities are important because they have been shown to increase mental and physical stability and have a positive effect on your general well-being. Find leisure activities that you enjoy and discuss with your dialysis team whether they are suitable for you. Spend time with family and friends, go on trips together and do not isolate yourself from social activities. It is important not to "”get lost” in your illness, but instead maintain a positive and optimistic attitude towards life.
During physical exercise, make sure that you maintain your strength and plan regular breaks. Do not force your body too much. The sports which are particularly suitable for you differ depending on the therapy modality. You can find out more about your possibilities here.
Travel
Doing dialysis regularly does not mean that you can no longer go on holiday. It is possible to have your dialysis performed in other dialysis centres or maybe even other places with peritoneal dialysis, including abroad. You can continue to lead an active life, discover new places or simply enjoy the sun!
Some important travel tips
Start planning your trip in good time. That way you can avoid stress and fully enjoy your holiday.
Check with your health insurance to find out which services are covered in which travel regions.
Always carry your medication and important medical reports in your hand luggage. That way you have everything close at hand in case of an emergency. Transparent zip bags are an easy way to store all your medicines.
Ask your care team for useful tips for your trip.
The most important facts in a nutshell
You will also need to continue your dialysis treatment while you are on holiday. Therefore, you need to make sure that dialysis is available and possible at your travel destination. Talk to both your current physician and your physician at the destination about what you need to keep in mind when travelling! Also, remember to make appointments at the holiday dialysis centre before you start your trip to avoid appointment bottlenecks there. If you perform the dialysis yourself (peritoneal dialysis or home haemodialysis), you also need to plan the transport of the necessary equipment. Your dialysis team can help you plan this.
General considerations
If you are planning a holiday, please talk to your care team about it early. By doing so, it can be checked whether the holiday destination meets the necessary requirements for your dialysis. Temperature conditions in your destination country may also have an impact on your well-being due to changes in sweat production. Please discuss the details with your healthcare team.
For your own safety, you should always carry copies of medical reports with important information. Although it may be difficult for you, please remember to stick to your dietary guidelines, even when you are on holiday. The best thing to do is to consult with your clinical team or nutritionist to discuss whether diet adaptations are advisable for your destination country. This is the only way you can enjoy your holiday fit and strong. It may help if you inform the hotel in advance of your requirements, such as special dietary requirements.
Haemodialysis on holiday
A holiday with haemodialysis needs to be planned well. To start your holiday relaxed, we explain in three steps what you should pay attention to:
To perform haemodialysis while you are on holiday, you need to find a dialysis centre in your holiday destination. Here are some options:
- Health insurance companies: Some health insurance companies in some countries have signed contracts with foreign dialysis centres. Your health insurance company may have a list.
- Travel providers: Some travel providers offer trips specially tailored to dialysis patients. To find them, search for the term "dialysis travel offers" in search engines.
- Dialysis patients: Other dialysis patients have already been on holiday - exchange ideas with them to benefit from their experiences.
For the European Union, health insurance companies are obliged to cover the treatment costs in countries where the European Health Insurance Card is valid. This does not always work smoothly. Contact your health insurance company in advance to check whether all costs will be covered. Some health insurance companies keep lists of which foreign dialysis centres cover the costs completely and without any effort or advance payment. Other countries may have different regulations. Please check with your healthcare team.
Generally, in countries where the European Health Insurance Card is valid, costs are covered for:
- Treatments that are also offered in your home country
- Up to the amount that would have been covered in your home country
- For a maximum of six weeks within a calendar year
If you need financial assistance to plan your trip, dialysis travel assistance funds may be able to help.
Once you have found a dialysis centre and clarified the costs, you can continue to prepare your holiday:
- Ask your dialysis centre at home to prepare a letter for the dialysis centre at your holiday destination. This letter should contain all important information, including information about your dialysis treatment, your latest laboratory values and medications.
- Make appointments with the dialysis centre at your holiday destination - leave enough time for organisational aspects during the first visit.
- If necessary, your dialysis centre at home may be able to also translate the physician's letter into the language of the holiday destination. This makes communication easier.
- If necessary, inform your hotel about your diet so that they can adapt to it.
Some of your required medications may not be available abroad. It is therefore important that you carry them with you. If necessary, use a cooler for this purpose. If you are crossing a border, please inform yourself beforehand about regulatory requirements that may apply when crossing the border with medications. Talk to your dialysis team about it!
Peritoneal Dialysis (PD)
As peritoneal dialysis patient, you are also relatively flexible when travelling. Nevertheless, a holiday with peritoneal dialysis must be well planned. To start your holiday relaxed, we explain in three steps what you should pay attention to:
With peritoneal dialysis, travelling is possible. We would like to address some important points with regard to choosing your holiday destination:
- High hygienic standards at the holiday destination reduce the risk of infections and complications.
- Quick access to quality medical care: in the event of a complication, it is important that you receive high-quality care fast. Inform yourself in advance to make sure that high-quality medical care is nearby.
- Perform treatments in a clean and bright room and perform your dialysis as carefully on holiday as at your home.
- Know your holiday spot(s): Other dialysis patients have already been on holiday - exchange ideas with them to benefit from others’ experiences.
For the European Union, health insurance companies are obliged to cover the treatment costs in countries where the European Health Insurance Card is valid. This does not always work smoothly. Contact your health insurance company in advance to check whether all costs will be covered. Some health insurance companies keep lists of which foreign dialysis centres cover the costs completely and without any effort or advance payment. Other countries may have different regulations. Please check with your healthcare team.
Generally, in countries where the European Health Insurance Card is valid, costs are covered for:
- Treatments that are also possibly offered in your home country
- Up to the amount that would have been covered in your home country
- For a maximum of six weeks within a calendar year
If you need financial assistance to plan your trip, dialysis travel assistance funds may be able to help.
If you plan a short trip or travel by car, you can easily transport the materials needed yourself. If you are going on a longer trip, you will need to make some preparations in order to comfortably perform peritoneal dialysis at your holiday destination. If you are crossing a border, please inform yourself beforehand about regulatory requirements that may apply when crossing the border with dialysis materials.
There are several ways in which all the necessary supplies can be provided at the holiday destination:
- Home dialysis centre: Your dialysis team at your home dialysis centre may be able to ship the necessary supplies for treatment directly to your holiday destination.
- Home dialysis provider: Your home dialysis provider (such as Fresenius Medical Care) may be able to arrange for delivery to your holiday destination. Please enquire when planning your travel.
- Dialysis centre at your holiday destination: The dialysis centre at your holiday destination may be able to provide you with the necessary materials at your holiday destination. Please enquire when planning your travel.
- Your own transportation: You transport your required material to your holiday destination. If you are crossing a border, please inform yourself beforehand about regulatory requirements that may apply when crossing the border with dialysis materials.
Check with your dialysis team to find out what options are available for you.
Despite these options, you should always carry a three-day supply with you to be prepared for unforeseen situations. For air travel, this should be carried in your hand luggage.
Find out more about travelling on dialysis within the NephroCare network
Managing your emotions
It is normal for kidney patients to have mood swings. Moodiness can be a result of build-up waste products in the blood causing irritation to the nervous system. Some medications may also reduce emotional stability.
The stress caused by chronic diseases explains a wide range of feelings and moods, including irritability, anger, frustration towards problems caused by the illness and feelings of hopelessness.
Each step you've experienced - finding out your kidneys are failing, needing to choose a type of dialysis and the ongoing nature of dialysis itself - comes with a series of emotions. Recognising how normal this is can be reassuring, help you stay on your treatment plan and keep up the relationships most important to you. Always keep in mind that you're not alone and can lean on your dialysis care team if needed.
1. Share your feelings
Share your feelings with someone - a friend, family member, social worker or someone you turn to for spiritual guidance. Talking to someone else will help you to see some things differently.
2. Feel your emotions
Allow yourself to feel whatever you’re feeling without judging or blaming yourself.
3. Focus on today
Focus on today instead of worrying about the future. Being in the moment will feel less overwhelming.
4. Start an exercise routine
Take a short, brisk walk or begin daily exercise. Countless studies have shown the positive emotional benefits of even the simplest exercise. Always check with your physician before you begin any exercise program.
5. Get support
Get support by building a community. People with chronic conditions who have strong support networks live longer and manage their health better. That’s a fact.
Read more about life as a family member of a dialysis patient in the next section
What is an Adverse Event (AE)
Any untoward medical occurrence in a patient or clinical trial subject administered a medicinal product and which does not necessarily have a causal relationship with this treatment [Dir 2001/20/EC Art 2(m)].
An adverse event can therefore be any unfavourable and unintended sign (e.g. an abnormal laboratory finding), symptom, or disease temporarily associated with the use of a medicinal product, whether or not considered related to the medicinal product (Annex 4 Guideline on good pharmacovigilance practices (GVP) Rev 4).
Reporting Side Effects
If you get any side effects, talk to your Doctor, Pharmacist or Nurse. This includes any possible side effects not listed in the package leaflet. You can also report side effects directly via the Yellow Card Scheme at www.mhra.gov.uk/yellowcard.
By reporting side effects, you can help provide more information on the safety of this medicine.
Report an Adverse Event
Adverse events should be reported. Reporting forms and information can be found at www.mhra.gov.uk/yellowcard. Adverse events should also be reported to Fresenius Medical Care on 01623 445 215 and via medinfo-uk@freseniusmedicalcare.com
Medical Information
Call 01623 445 100 (please choose option 5). Opening times are Monday - Friday 9am - 5pm.
UK/HEMA/FME/0922/0002 – Date of Preparation September 2022.
