Frequently asked questions

Urine Collections

Why do I have to do urine collections?

The collection and measurement of urine passed by a patient between dialysis sessions is one way of tracking how the kidneys are performing. This particular measure is widely used in dialysis wards and clinics. It is one of several measures used by BISTRO to monitor kidney performance. It is important that participants in the trial complete all urine collections when asked so the study can assess how your kidneys are performing over time.

My collection canister is full, what do I do?

If you think that there is not enough room in the canister for another pee, you should note the time of the last pee that did go into the container and bring in what you have collected so far. If you fill up the canister mid-pee, you should note the time and let your research nurse know what happened.

What should I do if I forget to pee in my collection canister?

If you are more than half way through the time between sessions, you should stop collecting and write down the time when you last had a pee that did go into the container as best as you can remember. For example, if you forget you are collecting on the second morning (the day of session 2), you should note the time you last had a pee before going to bed.

If you are less than half way through the time between sessions, you can discard the urine collected already and start again. You should make a note of the time you restarted collections and tell your research nurse.


How can I find out more about the BISTRO Study?

There are a number of ways to learn more about BISTRO

  1. Ask your Research nurse, they will be able to answer many of your questions or ask someone else who can answer your questions
  2. Checkout updates to FAQs, https://www.keele.ac.uk/bistro/.
  3. Watch out for our BISTRO newsletter (starting shortly).
  4. If you would like to talk to other patients for support, we will shortly be launching a Facebook group).

Other questions

Coping with dialysis 3 times a week

Whether you have had plenty of time to prepare for starting hospital dialysis or you have had to start treatment at short notice, dialysis treatment is a significant milestone in a patient’s journey.

Patients often report feeling overwhelmed when starting dialysis. This normal, there are a lot of changes and information to take on board. Here are some suggestions of people who may be able to help.

Your dialysis team

Your dialysis team will be very experienced in helping new patients adapt to dialysis. Your dialysis nurses and doctors are there to help if you have concerns or questions. Your local hospital will have leaflets and information booklets to help you understand what is happening and the options available to you.

Renal dieticians

Hospital Renal Dieticians are a good source of information and advice about managing diet and liquid intake. You may have already met the renal dietician prior to starting dialysis. If not ask your dialysis team about speaking to a renal dietician.

Patients support groups

There may be a patient support group that meets near you. Alternatively, there are many support grounds online, typically Facebook. All the main UK renal charities run online patient forums.

Ask you research nurse about the BISTRO Facebook group, a group run by patients for patient who are starting dialysis and are a participant in the BISTRO study.

Counselling

Your hospital may run a counselling service. You should ask your local dialysis team about this.

Kidney Care UK, a national charity, provide a counselling service which you may find helpful.

Contact details: https://www.kcuk.org.uk/

Where can I find out further information about kidney failure & dialysis?

The best place to start is to talk to your local renal nurses and doctors, they can answer many of your questions or advise you where to go to find out more information.

UK charities KCUK & KRUK have produced a series of plain English booklets for Kidney patients about:

  • Kidney Conditions
  • Kidney Treatments
  • Living with Kidney Disease.

https://www.kcuk.org.uk/

https://www.kidneyresearchuk.org/

 

If you are a Polycystic Kidney Patient the PKD charity has information that would be particularly helpful to you.

https://www.pkdcharity.org.uk/

Coping with the transition to dialysis 3 times per week

Members of PAG are undergoing or have undergone dialysis treatment. These are a few suggestions that we found helpful when starting out on diaysis:

  • If possible, bring a partner or family member with you for support in those early weeks.
  • Do not be afraid to ask questions, your nurses and doctors will be able to help.
  • Your local hospital will have leaflets and Information sheets to explain to you the keys facts you need to know.
  • The national Kidney charities all have simple plain English guides about all aspect of dialysis and other kidney relating matters.
  • There are a number of online support groups locally and nationally to fit all age groups. Ask your local nurse for more information.
  • Contact PAG. We are kidney patients who have already experienced starting dialysis and are here to help if we can. Please note we cannot comment on any medical questions you may have. These questions should be directed to your renal doctor or nurse.

Coping with liquid restrictions

These top tips are taken from an article produced by the NCF charity. If you have any suggestions of your own please email them to us: BISTRO@devicesfordignity.org.uk.

What can I do to help manage my liquid intake?

  • Use small glasses, such as juice glasses, at meals. If you use larger glasses, don’t fill them up completely.
  • Limit the amount of salt in your diet. Salt makes your body hold on to water. Limiting salt helps control your thirst.
  • Keep a supply of hard candy, like mints or lemon drops. They lubricate your mouth and help decrease thirst.
  • Take sips, not gulps. Try to savour whatever liquid you’re drinking and make it an experience, not just a thirst quencher.
  • Divide your fluid allowance into manageable parts. For example, at 4 different times of the day, at 10 a.m., 2 p.m., 6 p.m. and 10 p.m.
  • If you plan to attend a social event in the evening, you can decrease your intake earlier in the day so you can enjoy a beverage at the event.
  • Use a refreshing mouthwash daily, and be sure to brush your tongue, since good oral hygiene habits also help get rid of that “dry mouth” feeling.
  • Liquid in gravy or sauces with your food will use up part of your liquid allowance so avoid them.

How do I keep cool in hot weather?

  • Salt makes you thirsty – to help control your thirst, limit the salty foods you eat.
  • Snack on low potassium vegetables and fruits that are ice cold, like chilled iced pears, apples, grapes or strawberries
  • Try freezing berries or grapes for a cold, refreshing snack.
  • Sip your drinks slowly. Sipping will help you savour the liquid longer
  • Use small cups or glasses for your drinks
  • Freeze your allowed water in an ice cube tray.
  • Freeze grapes, apple or Cranberry juice in an ice cube tray.
  • Try swallowing pills with cold apple sauce rather than liquid.
  • Wet or freeze washcloths to put on your neck to keep cool.
  • Place a bowl of ice in front of a fan to help cool the air.
  • Always wear a hat when out in the sun.
  • Wear loose and light cotton clothing.

Drinking more water is not the best way to keep cool and can lead to fluid overload. Check out our Top Tips section for ways to keep cool.

Where can I go to learn more about managing my liquid intake?

Kidney Care UK have useful information booklets on liquid management: http://www.kcuk.org.uk/


Questions about diet

Where can I find out more information about healthy eating for Kidney Patients?

Talk to your renal nurse in the first instance who can put you in contact with your local renal dietician. They will be able to help you with advice and recipe information.

Go online and check out the national Kidney charities who all have information about renal diets. Kidney Care UK have useful information booklets on diet, The National Kidney Federation have produced a recipe book written by Chef Martin Keogh.

Why is diet important to a kidney patient?

Dietary advice differs according to the stage of kidney failure and the type of treatment given. Kidney patients should only alter their diet when advised to do so by their doctor or dietician. Malnutrition is the major problem for many patients on dialysis - both peritoneal dialysis (PD) and haemodialysis. So, high protein intakes are recommended.

Potassium restriction is generally not needed on PD but may be needed on haemodialysis. Salt intake may need to be restricted. Most transplant patients will not have any dietary restrictions.


Coming to terms with kidney failure and dialysis

I would like to go away for a few days/go on holiday. What should I do?

Talk to your dialysis team, they will be able to advise you on health considerations and dialysis away from your local unit. The http://www.kcuk.org.uk/ has produced a leaflet with advice about holiday dialysis.