Dialysis Patient Handbook

Dialysis Patient Handbook

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Welcome to dialysis!

We understand that this is a new and challenging experience for you. Your healthcare team is made up of many different care providers. We are all here to help you adjust to living with dialysis and to help you with your experience.

Your input is very important to us as we work together with you. We want to be sure that your treatment is designed with your individual healthcare needs and lifestyle in mind.

This handbook will help to answer some of your questions. Please feel free to ask if you have any other concerns.

As your dialysis begins, it is important for you to understand your treatments, medications, and blood test results. Knowing these things can help you feel more comfortable, cared for, and safe.

You may feel overwhelmed, but remember, you are not alone!

Your healthcare team is here to work with you.

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About The Renal Unit

Understanding your rights

Patients Rights

  • Right to get considerate and respectful care.
  • Right to information.
  • Right to give informed consent.
  • Right to privacy.
  • Right to conidentiality.
  • Right to obtain reasonable care and treatment.
  • Right to know whether patient is part of any trial or clinical research.
  • Right to get details of treatment costs/payments.
  • Right to expect continuity of care.
  • Right to obtain second opinion.

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Your first day of hemodialysis!!

When is the unit open?

Saturdays to Thursdays 8am to 8pm

Where can I park?

  • Car parking building available in Block C.
  • Valet parking available in front of Block B.
  • Municipality parkings are available on the main street .

Please ask the hospital cashier or the dialysis unit nurse for parking pass on your dialysis day so you won’t have to pay, if you are going to park in block C.

Please allow time to ind a spot as it can be quite busy .

For your first 3 to 6 treatments someone else should do the driving. You may feel tired or light-headed after your treatment or your blood pressure may be low. You may be at a higher risk of having a car accident. Some people are able to drive themselves once they get used to dialysis.

Where is the hemodialysis unit?

In NMC Royal Hospital Sharjah, the Dialysis Unit is in Block B, first floor.

When you take the elevator to the first floor, the laboratory is straight ahead and our unit is just opposite to the lab reception.

Living With Dialysis

What can I do while I am having treatment?

You can do some activities while having dialysis. For example, you may wish to :

  • Utilize our entertainment system, TV and internet
  • Read books or magazines
  • Do a crossword
  • Play cards

Keep in mind that you cannot stand up during your treatments. Your nurse can talk to you about how active you can be during your dialysis .

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What should I wear ?

  • Dressing in loose, warm, washable clothing is a good idea. It makes it easier to get to your (access site) “catheter or istula’’.
  • Front opening clothing works well with catheters. A short sleeved shirt will make it easy to get to a istula or graft.
  • Hospital gowns are available if you prefer to wear one.
  • You may bring whatever helps you feel comfortable and pass the time.

Are snacks available?

In NMC Royal Hospital Sharjah we provide coffee, tea, juice, sandwiches, yoghurt/custard. A set menu is already prepared so you can choose and enjoy your snack.

Can I have visitors?

Visitors are restricted in the dialysis unit.

Indoor Exercises for People on Dialysis

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Please note: Consult your doctor prior to beginning any exercise plan.

When you have chronic kidney disease (CKD) and are on dialysis, your doctor may recommend that you get outside for some exercise, such as walking for at least 30 minutes a day. But what if the weather isn’t exactly right for a walk around your neighbourhood or another outdoor workout? Even if it’s too cold or too hot outside, you can still get the exercise you need indoors.

Why is exercise important for people on dialysis?

Exercise is important for people on dialysis because it promotes a healthier lifestyle. Exercise can help you in numerous ways. If you are overweight and your doctor suggests that you lose extra pounds, exercise – along with a lower-calorie, kidney-friendly diet – can help. You can also strengthen your muscles with exercise. One of the most important muscles to exercise is your heart. A healthy heart is important, because when you have kidney disease you are at risk of getting heart disease. Exercise can also reduce depression and help you feel happier.

Here are some ways you can beneit from exercise:

  • Improves digestion
  • Increases energy level
  • Improves quality of sleep
  • Lowers cholesterol levels
  • Reduces stress
  • Decreases risk of heart disease
  • Lowers blood pressure and blood sugar levels

Why do I need to be on a special diet?

Eating properly is important when you are on dialysis. To feel well, you need to eat the right food. Your dietitian will help you with a diet for your special needs.

Because your kidneys are not able to get rid of enough waste products and luids, your blood and your body now have special needs. You will need to limit luids and change your intake of certain foods in your diet.

How well would you feel will depend on:

  • Eating the right kinds and amounts of food from your diet.
  • Having the hemodialysis treatments your doctor orders for you.
  • Taking the medications your doctor orders for you.

Your diet is very important to your care. It is important that you have the right amount of nutrients, luids, vitamins, and minerals each day. Some of the nutrients you may have to modify are potassium, phosphorus, calcium, protein and sodium.

Your dietitian will help you plan your meals to make sure you get the proper balance.

Fluids

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On dialysis, you may require a luid restriction. The goal of luid restriction is to help you feel comfortable before, during and after your dialysis sessions. Even though your dialysis gets rid of excess luids and waste in the body, it is not as effective as healthy kidneys. Going over your recommended luid allowance can lead to too much luid building up in your body between treatments. This build up causes swelling and increases your blood pressure, which makes your heart work harder. Too much luid can build up in the lungs, making it dificult for you to breathe. Some people experience muscle cramping during dialysis when they gain too much luid. Taking off too much luids can also cause a drop in blood pressure, which can leave you feeling nauseated, dizzy and weak after your treatment.

If you require a luid restriction, here are a few tips:

  • Use crushed ice mixed with very small amounts of fluid.
  • Use smaller cups and glasses.
  • Suck on hard candies or chew gum.
  • Rinse your mouth and brush teeth often.
  • Eat frozen grapes and other fruits that are low in potassium.
  • Eat less salt so you do not get thirsty.
  • Count frozen foods that melt when they are at room temperature as part of your fluid intake.

Should I wear a medical alert bracelet?

It is a good idea to wear a medical aert bracelet. This lets others know that you are on dialysis.

  • Your medical conditions such as renal patient or diabetic.
  • The medicine you take.
  • Your allergies
  • Your istula/graft/catheter location.

Is it OK to travel?

You can travel if dialysis is available at that location. If you plan to travel , speak to the Nurse Manager as early as possible. Arrangements are made well in advance.

Your dialysis report will be provided in the last day before your vacation.

Once you come back you should perform a virology test (Hepatitis B, Hepatitis C, HIV).

A dialysis report is expected from the place where you received dialysis.

Hepatitis B

Hepatitis B is a virus that infects the liver. The Hepatitis B 9vaccine is given in 3 shots. When your body gets the vaccine, it makes antibodies. These antibodies attack the Hepatitis B virus if it gets in your body. Some people already have the antibodies and don‘t need the vaccine.

Hepatitis C

Hepatitis C is an infectious diseases caused by the hepatitis C virus (HCV) that primarily affects the liver. During the initial infection people often have mild or no symptoms, occasionally a fever, dark urine, abdominal pain, and yellow tinged skin occurs.

Access Choice

You can be attached to the machine in several different ways. The most commonly used methods are :

  • Internal Fistula
  • Internal Graft
  • Central Venous Catheter

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Fistula

The istula is the best method for providing access to the bloodstream. To make a istula, an artery and a vein in your arm are surgically connected together. Fistulas can be used about 12 weeks after surgery. You will be encouraged to do some special exercise to help the istula develop or mature. One exercise you can do after your stitches are out, is to squeeze a tennis ball or sponge many times daily.

Advantages

  • Reduced incidence of clotting.
  • Reduced incidence of infection.
  • Requires less daily care from patient.
  • Avoids potential allergic responses to synthetic materials.
  • Has a great longevity (70% over 3 years).

A istula is considered to be the ideal choice of nephrologists and vascular surgeons.

Graft

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A graft is another common way of providing access to your bloodstream. A short piece of special tubing is placed under the skin to connect an artery and a vein. Grafts can normally be used within 2 to 4 week after surgery.

Advantages

  • Can be used sooner than a istula.
  • Provides large surface for cannulation.
  • Blood low not dependent on vein maturation.

Central venous catheter

This method is normally only used when the veins in the arms are too small to provide enough blood for hemodialysis, or when access to the bloodstream is needed quickly. It is used temporarily until a permanent access is ready. A central venous catheter is a soft tube which is inserted into a large vein. The most common used veins are the jugular vein at the side of the neck and the subclavian vein just underneath the collarbone.

The advantage of central venous catheter is that it can be used immediately.

How do I take care of my catheter ?

Central line catheters are not the optimal access for dialyzing due to the increased risk of infection. With the placement of the catheter tip in the right atrium of the heart the risk of infection is high, While showering, please place a covering over the catheter dressing to prevent it from getting wet and contaminating it.

Central venous catheters are made with a double- lumen design with one port designated as arterial low (red) and the other as venous low (blue).

  • Keep catheter dressing dry.
  • DO NOT allow anyone other than the hemodialysis nurse and / or nephrologist to access your catheter.

Signs and symptoms of infection and to Whom it should be reported:

  • Increased temperature.
  • Shaking/chills
  • Discharge noted at exit site.
  • Redness at exit site
  • Pain at exit site

Report these signs and symptoms to the dialysis nurse or to the nephrologist.

What to do in case of accidental removal or cutting of catheter?

  • Clamp the remaining tail of the catheter.
  • Direct pressure at the insertion site with occlusive dressing.
  • Seek medical attention.
  • Call the dialysis clinic for further instructions.

How do I take care of my Fistula/Graft?

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IMPORTANT! Your istula/graft feels as if it is buzzing. It also makes a swishing sound called a bruit. These are normal. If they stop, call the renal unit immediately.

It may mean that your istula/graft is clotted. We must act quickly to save your istula/graft.

Do not Let anyone use your istula/graft except the dialysis nurses and doctors.

Do not let anyone :

  • Take blood from your istula/graft arm.
  • Start an intravenous (IV) in your istula/graft arm.
  • Take blood pressure on your istula/graft arm.

Do not carry bags or pressure over your istula/graft arm.

Do not sleep on your istula/graft arm.

Do not wear clothes with tight sleeves/wrist watches.

Protect your istula/graft when lifting, playing sports, or working.

If you think your fistula/graft is infected , tell your nurse at your next dialysis.

Your fistula/graft may be infected if :

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  • Looks red
  • Swells
  • Hurts
  • Has fluid running from it
  • Feels tender

How to care for your istula after treatments?

We put a dressing over your istula/graft after your treatment.

Remove the dressing:

  • In the evening of your treatment if your treatment was in the morning.
  • The morning after dialysis if your dialysis was in the afternoon or evening.

The dressing or band-aid may stick to your istula/ graft ,if so try soaking the dressing with warm water. To avoid infection, remove the dressing and keep your istula / graft clean.

If a needle site bleeds after you leave the unit, put pressure on the site until the bleeding stops. It is a good idea to carry a few sterile gauze squares with you. Use the gauze squares to cover the site before you apply pressure. If bleeding does not stop, call the unit or go to the nearest emergency department.

What tests can I expect to have ?

We take blood from your istula / graft or dialysis catheter once a month. This is for your routine blood tests. Your doctor and nurse will talk to you about the test results.

How do I deal with common problems?

You can control or stop these problems if you catch them early. Make sure you tell your nurse or doctor if you notice changes.

Common problems like:

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  • Constipation
    This may be caused by some of your medicine or because you need to drink less luid . Talk to your doctor about laxatives that are safe for you to take. Also speak to your Dietician about incorporating more ibres into your individual Šeating plan .š
  • Too much luid in your body
    If you have too much luid in your body, you may get :
    • Swollen or puffy legs, ankles, eyes or hands
    • High blood pressure
    • Shortness of breath

    This can happen if you drink too much luid or eat too much salt.

  • Cramps

    You may get muscle cramps in your feet, lower legs, hands and abdomen during or after your treatments. This happens after you lose luid during dialysis, or when you reach your dry weight.

    Dry weight is the weight at which you have no extra luid in your body. To reduce the cramps your dialysis staffs may infuse saline in your dialysis line. Saline is a sterile mix of salt and water. If you get cramps during or after your treatment, a light massage or a hot pack on the cramp may help. After treatment, try a light exercise such as walking. Remember that you cannot stand up during your treatment.

  • Itchy skin
    Your skin can get itchy if there is too much phosphate in your blood. Many foods contain phosphate. The dietician teaches you what foods have a lot of phosphate in them. To lower your phosphate, you may need to take medicine such as calcium carbonate or Renagel, these bind with phosphate so that less phosphate is absorbed. Dry skin also causes itchiness. Try using mild soap, bath oil, and skin cream to stop the itching.
  • Low Blood Pressure
    You may get low blood pressure near the end of your treatment. This makes you feel dizzy, tired and cold or as if people are talking to you through a tunnel. If you have these ‘funny’ feelings tell your nurse/technician
    Your nurse may:
    • Give you saline.
    • Stop or slow down luid removal.
    • Tilt your head back so that more blood gets to your head.
    • Give you a drink or something salty to eat.
  • Change in Appetite
    When you irst start dialysis, you may not feel like eating very much. As the dialysis removes the toxins from your body, your appetite should return. Please let the nurses know if you are having dificulty eating.
  • Changes in your energy level
    When you start irst dialysis, your energy level is low. Having less haemoglobin in your blood or high toxin levels in your body makes you feel this way. As the dialysis removes the toxins, your energy returns. Many people feel tired right after dialysis but feel better about 2 hours later. Many people return to their former activities after they start dialysis.

Answers to common questions

How can I gain so much weight if I do not drink anything ?

Without knowing it, you may eat too much salt. This makes your body retain luid. Also, you may eat food that have hidden water. Such food include :jelly, soup, gravy, and frozen foods that are liquid at room temperature, like ice cream.

Why is it so hard to remove 4-5 Kg in one dialysis treatment ?

It took you 3 days to drink that much luid. Removing it in a single treatment puts too much strain on your heart and the rest of your body. Repeating this frequently can lead to permanent heart damage.

Why is my potassium high? I do not eat food with much potassium in it.

You may have eaten many things with small amounts of potassium in them. Also, you may not know about some foods that contain potassium. It all adds up. Check with your dietitian.

Why do my bones hurt ?

When your phosphorus, calcium, and parathyroid levels are out of normal range, they can lead to problems with your bones and joints. These levels are monitored closely. Your doctor, or nurse can talk to you about how to control these levels.

What do I need to know about taking medications?

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Your doctor prescribes drugs for you to take while you are on dialysis. You need to know:

  • The reason for taking the drugs
  • How and when to take them
  • Their side effects
  • Which ones you cannot take right before dialysis
  • Which ones you cannot take after dialysis

If you take any other drugs, tell your nurse or nephrologist about all other drugs that you take.

This include :

  • Drugs that other doctors prescribe for you.
  • Drugs that you buy without a prescription such as allergy, pain, and cold pills. These are called over the counter drugs. Talk to your nephrologist before you take any over the counter drugs.

Your Nephrologist may order any of the following drugs for you.

Erythropoietin

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It helps your bones make red blood cells that increase your haemoglobin. Your nurse gives you the injection through your blood line at the end of your treatment. It takes 4 to 6 weeks to feel the effects.

Iron

Iron is needed to make red blood cells. Iron pills may upset your stomach and turn your stool black. Take iron when your stomach is empty before you go to bed. You also may get iron injection through the dialysis line during your treatments. Do not take iron at the same time that you take your phosphate binder. The phosphate binder binds with iron and makes the iron inactive.

Phosphate binders

These include calcium carbonate or Rengel. These drugs bind with the phosphate in your food to lower the amount of phosphate in your body, and must be taken with food to work properly. Keeping your phosphate levels under control helps your bones stay strong and healthy. Take your phosphate binders with your meals or snack. Talk to your dietitian about controlling your phosphorus level.

Multivitamins

These replace the vitamins that you are unable to get from your diet .They also replace vitamins that you lose during dialysis. Take vitamins after your treatments.

Blood pressure tablets

There are different kinds of blood pressure tablets. Do not take blood pressure tablets before your treatment unless your doctor tells you to take them. Side effects of blood pressure pills: dizziness, light-headedness, weakness, drowsiness and slow heart beat. Tell your nurse if you have one of these symptoms.

Dialysis routines

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Please stay in the waiting room until your chair (or bed ) in the hemodialysis unit is ready for you. Your name will be called. We are sorry that there will be times when your dialysis start time will be delayed due to unexpected problems. These may include machines breaking down, transportation delays, patient complications and other issues. We ask for your patience and understanding when this happens.

At NMC Royal Hospital Sharjah, the dialysis area is a secured location. The doors are locked. A button in the wall must be pressed in order to get clearance to enter the unit. During your irst visit, a nurse may meet you at the door.

Before dialysis, we will help you to Šweigh inš on scales located near the dialysis areas. Your blood pressure will be checked both standing and sitting (or lying down). Checking your blood pressure and weight helps to ind out the amount of luid that needs to be taken out or added during dialysis. Your doctor will establish an ideal weight with you. The medical team calls your ideal weight your Šdry weightšor Štarget weightš. You will be expected to keep this dry/ target weight through diet and luid intake, such as drinking less water or other luids,and cutting back on salt intake.

While on dialysis, you will be checked as often as necessary to assess your health problems and how you are feeling. Dialysis machines have built in monitors and beepers that help with this process.

If you feel any unusual symptoms during or after your treatment, such as light-headedness, headache, dizziness, nausea, blurred vision, loss of hearing, or leg cramps, please tell your nurse/technician right away so they can treat you.

After dialysis, your weight is checked again to show how much luid was taken away during your treatment. Keeping a consistent healthy weight for dialysis is very important for your treatment.

How can I speak with a member of the dialysis team?

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If you would like to speak to a speciic member of your dialysis healthcare team, please tell the dialysis unit staff. If the issue is urgent, please ask the nurse caring for you to call the team member while you are on dialysis. If you would like to speak privately with one of the healthcare team members, ask the charge nurse for an appointment.

What is the dialysis schedule?

There are speciic days and times for dialysis. Each session lasts about 4 to 5 hours.

Treatments are usually 3 times a week on :

Eg: Saturday, Monday, Wednesday
Sunday, Tuesday, Thursday

Please note : this schedule may change based on the needs of the patients receiving hemodialyis at the time your care is planned.

We will tell you if we need to change your schedule. Schedule changes can happen at any time. The schedule may change for the time of day of your treatment, or the day of the week .

When you irst start hemodialysis, you may be on a day shift for 3 treatments. You will then get a regular time in the dialysis schedule. Your preferred times or treatment days may not be available right away. Some days and times are more popular than others.

When making schedule changes, we consider:

  • Your level of wellness
  • Transportation availability
  • Work and study schedules
  • The length of time you have been waiting for a schedule change

If you wish to change your schedule, please ask the charge nurse.

If you wish to change your dialysis time for a special reason, please let the charge nurse know as soon as you can.

We will try to help you.

If you know you will be arriving late, please call the dialysis unit 06-5167171 or 06-5167170

Please remember that, when you arrive late, others who use the same chair or bed later in the day will be late too.

If you cannot come at all, please call the unit.

You will not have the same nurse for each treatment. You may not have the same chair for each treatment.

Physicians will do rounds daily while you are on hemodialysis. During those rounds they will address kidney/dialysis related concerns, including prescription reills and blood work review.

How do I handle problems after dialysis ?

If you notice a dialysis – related problem while at home (istula graft or central catheter), please let the dialysis unit know by calling 06-516 7171 or 06-516 7170.

Dialysis unit is closed on Fridays.

For any emergency please come to the emergency department as soon as possible.

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How does the schedule change on holidays?

During all public holidays we remain open from 8am to 8pm

If you have a medical emergency, call 998 or go to your local hospital Emergency Department.

For your safety, make sure the emergency room staff know the following:

  • That you are a hemodialysis patient
  • If you are on the transplant list
  • What medications you are on

What medications do I need to bring with me ?

Bring all your medication with you on your irst visit and whenever you are asked to bring them. This includes any medications given to you by a kidney doctor or by any other healthcare provider. It also includes any medications you buy over the counter (Panadol, Adol. Brufen etc.). Please follow the directions for taking your medication.

Let your nurse know if you cannot take your medication for reason such as :

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  • Nausea
  • You are not sure about when or why to take them
  • You cannot pay for them

During the irst week of dialysis, your medications will be reviewed and changes may be made by the kidney doctor. The reason for these changes will be explained to you. If an outside doctor or other healthcare provider changes your medication, please tell the dialysis unit staff so your medical records can be updated.

Who is on the dialysis team?

YOU!

You are part of the team and we want you to be as independent as you can.

We ask that you be involved in your own care. There are many things you can learn to do to help with your treatment. You play an important part in keeping yourself safe. When you are at our clinics, please remember to wash your hands often. Having clean hands is one of the best ways to keep you safe.

Please tell us if you have been admitted to the hospital or Emergency Department, or if you are feeling unwell.

We review your medication on a regular basis. When we do the reviews, it is important that you bring in all medications you take (including patches, vitamins, inhalers, creams, herbal, and over the counter medications).

If you do not think something is right, please call us.

Head of department (HOD) can help with issues that are not resolved within the dialysis unit.

Registered Nurse

Dialysis Nurses are specially trained to give professional, personalized care. They will look after your well-being and plan your care with you during dialysis. They will answer any questions or concerns you may have.

Charge Nurse

If you have any concern about your dialysis care or scheduling, please let the charge nurse know and she /he will try to help you.

Nephrologist (kidney doctor)

Nephrologists can see patients on dialysis as needed. Nephrologists can also handle any dialysis problems. He or she will work with you to develop your goals of care and manage your overall care, including following regular bloodwork. Please speak to the nephrologist about dialysis related issues.

You should talk with the doctor or nurse before taking any over-the-counter medications (laxatives, antacids, pain pills, herbal remedies etc.). These medications may be harmful to people on dialysis. Help us keep your record up to date by telling your nurse of any changes in your medications, including those you are no longer taking. Make sure your community healthcare providers, including your pharmacist, know that you are on dialysis.

Dialysis Technician

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Dialysis technicians are specially studied and trained regarding all aspects of dialysis technology to give proper healthcare in a professional way. They will look after your well being and also will answer any questions or concern you may have. They will take care of all the dialysis machines and Reverse Osmosis units to provide safe and quality hemodialysis.

Dietitian

Your diet is an important part of your treatment. When you come to dialysis, your dietitian will talk about a diet that will work for you. By following the dialysis diet given to you by the dietitian, you will be able to help keep your phosphorus and potassium levels in check. When your levels are regulated, you are on your way to feeling better.

You will learn about :

  • Calories
  • Potassium
  • Fluid
  • Protein
  • Phosphorus and calcium
  • Sodium(salt)

Traveling while on dialysis

Hemodialysis patients who want to travel must plan in advance to be sure there will be room in the dialysis unit where they are going. Traveling within UAE needs one week notice, while outside the country may take longer. There are units around the world and they are even available on some cruises. HD report will be provided to ease the dialysis in other unit.

The hemodialysis patient or family member must call ahead to arrange dates for dialysis. Medical tests will be needed, so please allow plenty of time for these to be done and for the results to be sent. Most places will not conirm your visit until all information is received.

Stopping dialysis -What if I change my mind about dialysis?

If you decide that you no longer want to continue with dialysis, we will help you to explore this idea and prepare for the changes that will result from stopping treatments.

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Dialysis unit evacuation

In an emergency, the dialysis unit may be evacuated. This could mean that your dialysis treatment is stopped so that we can move you outside or to another area of the hospital until the emergency has ended. The nursing staff will continue to monitor and take care of you.

Conclusion

We hope this pamphlet has answered some of your questions, but we know you may have other questions. Feel free to tell us about your dialysis issues and what you may need so that we can better help you. You are the reason we are here and we would like to work with you.