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Life as a family member

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(at)fmc-ag.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.

As a family member, you too may be affected by your loved one’s chronic kidney disease. 

You probably wonder how your family life will change from now on, how the treatment can be integrated into everyday life and are concerned about the well-being of your family members.

It is perfectly understandable if you are initially nervous about the decisions that need to be done. Try to realise that neither your loved one nor you have to walk the path alone in finding a suitable therapy.

You can get a lot of information from the care team and other contacts at the dialysis centre. Other patients can share their own experiences and give insights into life with chronic kidney disease with their own personal stories.

Together with your loved one, you will find ways to live a fulfilling family life despite having the disease.

What does chronic kidney disease feel like?

There are many and various symptoms of chronic kidney disease and as a family member, it is not always easy to empathise with the person affected. For this reason, we would like to explain possible symptoms for you. However, please note that only a physician can make a clear diagnosis and assessment and not all symptoms necessarily occur or are a sign of kidney disease. Do not burden yourself with self-diagnosis of your family member but rather consult a specialist.

Read more about how chronic kidney disease or dialysis might affect your relative or friend.

Changes in your daily life

The complexities of dialysis treatment cause changes in the daily lives of both the person concerned and their family members/friends. You can find the differences between the individual therapy options here.

We have listed aspects for you that could change within their new everyday lives with dialysis. For example, it may be that:

  • You work more than your relative/friend
    Because of their health condition, your loved one may find it difficult to continue to work as usual. If they are working, they may have to change from a full-time to a part-time job, or they may have to stop working temporarily. This may mean a drop in income for both of you.
  • You do the majority of the housework
    After dialysis, your loved one may feel very exhausted and no longer able to help you as usual. It is also important that your relative/friend be cautious and protect the catheter or shunt.
  • There might be a change their diet
    Dialysis patients must often pay attention to certain ingredients in their diet, such as potassium, phosphate and salt, as well as fluid intake. In this case, it is important not to take in too much of these respective ingredients, as they can worsen kidney performance or lead to complications. You may have to reinvent old family recipes or cook two different dishes. A dietitian can help with setting up a diet plan and with the adaptation phase. At the following link, you will find recipes that are well-suited for dialysis patients.
  • There is psychological support for family members
    Living with chronic kidney disease is a challenge for everyone involved. Your loved one may be frustrated with the disease or with the fact that their health has deteriorated. Perhaps cherished hobbies need to be given up. It is also possible that events at the dialysis centre are upsetting. Perhaps a patient friend has had complications or a good friend has died. Look for psychological support if needed; your care team may be able to help you with this. 
  • You need to set up new time management
    To maintain the best possible quality of life, it is essential for your loved one to follow the physician's instructions and keep appointments. The treatment itself also takes some time, no matter whether the choice is for in-centre or home therapy. Try to look at the treatment from a different perspective: dialysis time is lifetime! Popular and relaxing activities such as reading, Sudoku, listening to music, etc. can still be done by your loved one during treatment. It can help to embed the necessary treatment into structures that are always the same, as this can provide security and help reduce stress.
  • You will experience a new form of cohesion
    It is understandable that dealing with a chronic illness can be scary. Thoughts such as "Why my family?" or "How are we going to manage all of this?" are also very understandable. Close cohesion among the family members is indispensable, especially now. Speak openly about your worries and do not hold back as a relative/friend. Open communication creates clear conditions and provides the basis for finding solutions together. Once your new daily routine is established, you will be proud of what you have achieved together.

Finding solutions as a team

Dealing with upcoming changes and accepting the disease is not easy. Fears and worries can put a strain on family life and the increased stress can make it difficult to always put yourself in the patient's shoes. As a family member or friend, you also face difficult decisions and certainly do not always know what the right thing to do is.

But remember, the choice of a suitable therapy option is based on a well-considered decision, which was made together with a specialist. It is not a decision that you or your loved one has to make alone.

It is certainly helpful for the person affected if you are there to support them. Facing a disease together can bring you even closer together as a family or friends and create the basis for new, positive experiences. Over time, your family member/friend will get used to the "new normal". This is certainly different than before but can still correspond to their desired lifestyle.

Read more about support possibilities in the next section.