Autologous Blood Stem Cell Transplant Program - In Hospital

 


Your Health Care Team

There are many health care professionals on the health care team and we consider you and your family as members of this team. As a team member, we encourage you to ask questions and share information with other members of the health care team.

 

The following-is a list of your professional health care team members and some information about their roles in your care.

 

Doctors

·         You will be admitted under one attending transplant doctor. Although this doctor may change during your hospital stay, there will always be an attending transplant doctor supervising your care

·         The attending doctor and his/her colleagues will be involved in all stages of your transplant

·         There are several other doctors who may be responsible for your care on the weekends

·         Some of the transplant doctors will also provide your care in the outpatient clinic at TBCC after your discharge.

 

All medical staff work together and each doctor that cares for you has knowledge about you and your transplant. There is a doctor "on call" 24 hours a day.

 

Nurses

·         The nursing staff work together as part of your health care team in caring for you through your transplant. They will teach you more about the transplant process, the care that you will receive during treatment and how to care for yourself.

·         The nurses encourage patients to take an active role in their own care and as well, encourage family members to assist with some of the care.

·         The nurses in hospital work eight hour shifts during the day, evening and night.

·         Nurses working with transplant patients at TBCC will continue to provide your care when you are an outpatient.

 

Dieticians

·         Dieticians are available to assist you throughout your transplant and after. They will assist you while you are an inpatient on PCU 57, or in the BMT clinic at TBCC.

·         The dieticians work together to share information and make sure that your nutritional needs are met, both in hospital and out.

 

Physical Therapists

·         Physical therapists work with the health care team to assess problems relating to muscles and bones, and use exercise to help treat these problems.

·         A physical therapist will see you before, during and possibly after your transplant

 

Occupational Therapists

·         The occupational therapist will help you regain independence, prevent disability and maintain health following your transplant. Because of your treatment and long hospitalization, you may need help to maintain everyday activities, or learn new skills to stay as independent as possible.

 

Spiritual Care Services

·         A spiritual care representative is available at all times and may be contacted through your nurse. Every effort will be made to put you in touch with a minister of your faith if you prefer.

 

Psychologists/Social Workers

·         Psychologists are involved in many aspects of patient and family care. This team member will help you deal with emotional concerns you or your family may have.

·         Social workers are available in both institutions.

·         The social worker acts as a resource counsellor. Issues such as financial and accommodation needs, as well as availability of community resources, can be addressed at your request.

 

Transfusion Medicine Technicians

·         These team members ^provide many services to you before, during and after your transplant.

·         They provide necessary transfusion products required before and after transplant, care for your stem cells; prepare the stem
cells for infusion and monitor your need for blood products in the days following the reinfusion of your stem cells.

 

Pharmacists

·         TBCC pharmacists prepare all intravenous medications given in the BMT outpatient clinic.

·         They teach patients about these drugs as well as about the bone marrow stimulants such as G-CSF Pharmacists on PCU 57
review and prepare the medications you receive while on PCU57 or 57B day hospital.

 

Laboratory Technicians

·         Laboratory technicians perform tests on your blood after it has been taken by the nurse. This includes tests done to determine stem cell counts and readiness for apheresis.

 

Apheresis Nurses

·         These team member is responsible for the collection or harvest of stem cells from the blood. More information about apheresis is found in the Appendix.

 

Rules and Guidelines for Family and Visitors to Protect Patients

·         The Foothills Medical Centre is a non-smoking environment.

·         There are no set visiting hours; however we encourage families not to become too tired. (Visiting hours for patients in rooms with 2 or 3 beds are generally between 11am and 9pm.)

·         Each day family members should leave the unit to get a break from the hospital, to care for their own hygiene and to get a restful sleep. Patients also need time to rest.You will be called if any problems occur

·         Please respect rest periods set up by the patient or nursing staff.

·         Family members should make sure that the nursing staff has their correct phone number(s) on file for emergency use.

·         Before entering and exiting a patient's room, everyone is expected to thoroughly wash their hands. Hand washing is the single most effective way to prevent the spread of infection.

·         Families and visitors are asked not to use the bathroom or shower in the patient's room. There is a danger of infection to both the patient and family member. There are public washrooms on PCU 57.

·         Patients and family members are asked not to visit other patient rooms. This helps to prevent the spread of infection. Transplant patients may walk around the nursing unit, but should avoid other patients and families, as well as areas where people gather.

·         Family members or visitors should not visit the unit if they:

·            have a cold (even a mild one)

·            have a fever or cough

·            are feeling unwell

·         Children are often exposed to many viruses. Ensure that a visiting child is well and has not been exposed to other children who may be ill (especially chicken-pox, measles, etc).

·         Fresh flowers, dried flowers, baskets and plants are not allowed in the patient's room. They may have germs on them that can cause infections. Balloons and silk flowers are good alternatives.

 

Daily Routine for the Transplant Patient in Hospital

 

The following information gives you an idea of what an average day is like following your transplant. Included in this information are the daily routines, as well as possible procedures and tests which may be done.

·         4:00 am - 5:00 am: daily blood specimens are drawn by the nurse, from your central venous catheter (CVC). Early morning testing is necessary so that the results are available early in the day. Results are reviewed by the medical staff who then make necessary adjustments in your care.

·         Daily weight check is done before eating, to see if you are retaining fluid and to make decisions about your need for fluids.

·         8:45 a.m. - 9:00 a.m.: usual breakfast time

·         Daily shower.

·         Your nurse will do an assessment of your condition. This includes the following:

·       Checking your vital signs. These are measurements of your temperature, pulse, respirations and blood pressure. Vital signs are routinely checked every four hours, and more often if your condition needs it.

·       Listening to your heart and lungs and possibly your abdomen with a stethoscope. This is done to check for normal and abnormal sounds in these organs.

·       Checking your mouth for signs of redness soreness or infection. About 7 to 14 days after your transplant it is expected that you will have some inflammation of the mucous membrane lining the mouth and throat. This is due to the effects of chemotherapy and/or radiotherapy. This inflammation may be reduced by frequent mouth care which you will be taught

·       Asking you about symptoms of pain, nausea, vomiting or diarrhea which you may have. Examining the central venous catheter (CVC) and the skin around the catheter.

·       Changing the dressing on your CVC as needed.

 

·         Doctors' visits (rounds) are usually done sometime in the morning. There may be a group of doctors involved with your care. They will come to check your condition, perhaps listen to your chest and talk about your progress. They will order any changes in your care as necessary.

·         12:45 p.m.: usual lunch time.

·         Procedures will be done at any time during the day as needed. These include:

·       drawing blood from your CVC for testing.

·       giving medications through your CVC (these are usually given to prevent or fight infection).

·       giving fluids through your CVC to maintain your body fluid needs.

·       giving blood products through your CVC such as blood or platelets. The need for either product depends on the result of your daily blood count. It is normal to have some transfusions after transplant. Blood products are given whenever they become available from the blood bank or at a time convenient to the schedule of that day.

·       chest x-ray, which is routinely done each week, or more often if necessary.

·       measurement of how much you drink is recorded every shift.

·       measurement of the amount of your urine, stool and emesis is also recorded every shift. Samples are taken and sent to the lab for testing as necessary.

 

·         A rest or quiet time is usually taken during the afternoon. You and your nurse can plan this time together.

·         It is recommended that you are up and about every day for at least a short period of time.

·         You may feel that you are always connected to an infusion through your CVC. You may arrange with your nurse to be "unhooked" for awhile so that you may go for a walk. If this is not possible, you may walk with the pump.

·         5:45 p.m.: usual supper time.

·         Repeat assessment by your nurse is done sometime in the evening shift

·         9:00 p.m. - 10:00 p.m.: settling in for the night.

·         If you have trouble sleeping, be sure to mention this to your nurse. 11:00 p.m. - 7:00 a.m.: hourly rounds done by the nurse.

·         Your nurse will check your vital signs again sometime during this shift.

·         If it is needed, nutritional formula, known as parenteral nutrition (TPN) is given at this time through the CVC. Usually this is started in the evening and runs through the night.

 


The Transplant Procedure

 
Conditioning

The conditioning part of the procedure involves the use of high doses of chemotherapy with or without radiotherapy.

 

High Dose Chemotherapy

·         Chemotherapy is used to "condition" or prepare your body to receive the stem cell transplant.

·         This preparation is given before transplant day and can take between one and seven days.

·         The drugs will be given in high doses to destroy cancer cells that cause your disease. However the high doses destroy the stem cells in your marrow causing your blood counts to drop. The doses and kinds of drugs that you receive will depend on the diagnosis that you have. The nurse or pharmacist will give you more information about the drugs you will be getting.

 

The side effects that have been discussed earlier will begin to occur and last until your normal body cells repair themselves. In the meantime, many side effects can be well controlled with medications.

 

Side Effects of Conditioning

 

Nausea and Vomiting

Most transplant patients experience nausea and/or vomiting at some time during their transplant.

 

Both nausea and vomiting are controlled by certain centers in your brain, and cannot be controlled by you.

 

Some causes of nausea and vomiting during transplant are:

·         chemotherapy

·         pain

·         some medications

 

Medications used to treat nausea and vomiting are called antiemetics. They are given before you receive radiation and chemotherapy, and may continue to be given on a regular schedule. You may only need antiemetics occasionally, in which case please let your nurse know when you do.

 

Some medications used to control nausea are:

·         Stemetil®

·         Ondansetron (Zofran®)

·         Maxeran®

 

Antiemetics have some side effects. Usually they cause sleepiness or tiredness, but can cause restlessness, shakiness or a jittery feeling. If you experience any side-effects, please inform your nurse. Some reactions can be controlled by lowering the drug dose, switching to another antiemetic, or treating the reaction with medication.

 

Diarrhea

Diarrhea can be a side effect of the conditioning therapy you receive. Treatment will include the use of medications, fluid replacement and changes in your diet.

 

Hair Loss

All transplant patients have some hair loss. This usually occurs ten to fourteen days after conditioning treatment, and the loss is usually complete in a short period of time. Patients who have had only chemotherapy for conditioning, will likely have their hair grow back. However, there may be a color change, or a change between curly and straight.

 

Bleeding

Until the stem cells restore your marrow, your blood counts will be low. Bleeding may occur as the result of a low platelet count, usually below 20 (20,000). It is important that you tell your nurse if any of the following signs and symptoms occur:

·         easy bruising

·         presence of petechiae (tiny red spots on the skin)

·         bleeding from the nose or gums

·         blood in the urine or stool

·         pain in the abdomen

·         headache

 

You will be given a platelet infusion to keep your platelet count high enough to reduce the risk of bleeding.

To reduce the risk of bleeding, it is important to:

·         use only a soft toothbrush

·         always blow your nose gently

·         shave only with an electric razor

·         never take aspirin® or products containing aspirin®

·         avoid straining when having a bowel movement

·         avoid enemas, douches, using rectal thermometers or intramuscular injections a avoid any stressful physical activity such as contact sports.

 

Medications for Supportive Core

Most of the medications you receive during your transplant are given to help relieve the side effects of treatment.

Medications include those which treat or prevent:

·         nausea and vomiting

·         diarrhea

·         pain

·         infection

·         side effects of blood products

 

Side effects can occur with most medications. Because each person is unique, the same drugs can cause different reactions in different people.

 

Infusion of Stem Cells

You family and friends are welcome to be with you during your stem cell infusion. Taking pictures is allowed and encouraged.

 

On the day that your stem cells are infused, you will receive intravenous fluids and medications to prepare for this. Stem cells are infused into your CVC much like a blood transfusion.

 

During the infusion, several health team members will be present. Blood bank staff will thaw the stem cells in your room. Nursing staff will infuse these and check your vital signs. If the stem cell product has been frozen, there will be an odour and an unpleasant taste with the infusion. This may last 24 hours. Staff will provide mints for you to suck, which help you to manage the taste.

 

You may cough or have a tickle in the throat.

 

If you experience shortness of breath, you may be given oxygen and a drug called Ventolin® to help you breathe.

 

Some patients feel anxious at this time. A medication can be given to control this symptom.

 

Recovery

Your recovery is monitored by checking your blood counts every day.

 

Blood Counts and Engraftment

The stem cells that were infused on transplant day begin to establish themselves in your bone marrow.

 

They multiply in number and grow from immature to mature cells, before entering your blood. Although this process varies from person to person, it usually starts from two to three weeks after transplant.

·         You may receive G-CSF to "prompt" your white blood cells to recover. This is a delicate stage of your recovery. During this time, you have very few cells to protect you from infection or bleeding. However as time passes, your counts will increase giving you more protection.

·         White blood cells (WBC) usually begin to recover first. These cells help the body fight infection.

·         Red blood cells (RBC) Hemoglobin (hgb) is the substance of the RBC that carries oxygen to all body tissues. Carbon dioxide waste is removed from the tissues by this cell. Anemia occurs when there are not enough red blood cells in the body.

·         Platelets (Pits) These cells help control bleeding. They generally take longer to recover than WBC.

·         Each morning blood will be drawn from your CVC and sent to the lab for a count to measure the white count, hemoglobin and platelets. You may wish to keep your own record of your daily counts and watch them rise. Remember that a blood count does not have to be normal, values can be somewhat low without significant risk.

·         Normal values for these counts are:

WBC        4.0 - 10.0

Hgb         120 - 160

Pits         140 - 440

Based on the results of your counts, you may receive a blood product transfusion.

 


Nutrition During Transplant

Good nutrition is needed for healing and helping your new marrow grow. Getting enough calories, proteins, vitamins and minerals will help prevent muscle and weight loss and may help you feel better. Every patient having a stem cell transplant is assessed by a dietician in hospital before the transplant is done. As part of the health care team, the dietician’s role is to assist you with your nutritional needs.

 

While in hospital, you will be given three meals a day following guidelines for the immunosuppressed patient. As well, snacks are available from a special fridge on the patient care unit which are suitable when one is immunosuppressed.

 

You will be asked to help record the fluid that you drink. This is written on an "In and Out" sheet. Recording this information is important and becomes part of your daily assessment. It allows us to calculate the amount of fluid you consume.

 

 

Eating Problems

During transplant, people develop varying degrees of nausea, mouth pain, dry mouth, taste changes and loss of appetite. The dietician will be available to discuss ways you can meet your nutritional needs with nutritional supplements and food selections.

 

You may need added nutritional support

If you are unable to eat for several days or have severe diarrhea, your body can become depleted of important nutrients and fluid. When this situation arises, total parenteral nutrition (TPN) will be given. TPN is a liquid source of calories, protein, fats, vitamins and minerals. It provides you with the necessary nutrients until you are able to get these from your diet. TPN is given through your central venous catheter, usually late evening and during the night.

 


Self Care

 

Hygiene

 

Hand washing

·         Careful hand washing by you and your family is very important. Good hand washing can decrease and even prevent the spread of infection.

·         It is important to wash your hands before eating, before caring for your central venous catheter, after using the washroom and after touching anything in a public place

·         Hand washing prior to touching your eyes, mouth and nose is very important because viruses and bacteria can enter through these areas.

 

Good hand washing includes:

·         plenty of warm water and soap

·         washing hands using friction for 15 seconds

·         drying hands well

·         a clean dry towel

 

Bathing/Showering

·         We encourage bathing or showering on a daily basis, using a mild soap. If you choose to have a bath, be sure not to get your central venous catheter wet. Your catheter should never be soaking in the bath. Ask your nurse to show you how to protect your catheter.

 

Skin Care

·         Skin care is important.

·         Changes in the skin may occur as a result of the chemotherapy and/or radiotherapy given before transplant.

·         You will need to inspect your body for rashes, bruises, tenderness, excessive drying or peeling.

·         Report any skin changes as soon as possible.

·         It is important that you avoid the sun, but if this is not always possible, use a sunscreen lotion of at least SPF15 to protect your skin.

·         If you are having problems with diarrhea, pay special attention to the skin around the rectum as it may become sensitive and sore. Be sure to clean this area carefully and apply a barrier cream if needed.          

·       If you have bleeding or sore hemorrhoids, please report this to your doctor. Common remedies for this problem include Tucks™ pads, Anusol® or Preparation H®.

 

Mouth Care

·         The mouth is a site where problems can occur.

·         Normally the mucous membrane in the mouth prevents bacteria from entering the body. Conditioning treatment causes the mucous membrane in the mouth to become thinner and more delicate. When these changes occur, there is a risk of irritation and ulceration known as mucositis. The presence of mucositis increases the risk of infection and bleeding.

·         Mucositis may appear from five to seven days after transplant, and last until day fourteen to twenty. Dryness can last longer.

 

Exercise

 

Being inactive can lead to problems such as skin irritation, weakness, loss of muscle mass, poor bowel function and poof appetite. Your nurse will help you plan for a balance between activity and rest.

 

Some days you will find that your energy level is low, and you will not feel like being active. This may be because your hemoglobin is low, or because you are feeling unwell.

 

Learning to save energy during daily activities will help keep you active. The following tips will help you conserve energy during daily activities and prevent the problems caused by not being active:

·         Change your position often while sitting or lying in bed to relieve pressure and encourage blood flow.

·         Avoid sitting for long periods with your legs hanging down to help prevent swelling in the ankles and feet.

·         Wear loose clothing that is free of tight elastic. Tight clothes can slow the flow of blood or fluid in the body.

·         Take frequent, short walks. A long walk may exhaust you.

·         Plan activities that last no more than 15 to 20 minutes at a time, then take a rest.

·         Plan a rest period during the day, to ensure that you are rested.

·         Regaining your energy takes time. Be patient with yourself and get enough rest to help your body recover from the transplant.

·         If you have any problems with your muscles or bones, the physical therapist may recommend specific exercises for you to do.

·         Various exercise machines are available for patient use on PCU 57.

 

 

Central Venous Catheter Care

It is important to take special care of your central venous catheter to help prevent infection. Your nurse will teach you about this care. Once you are feeling well enough, you or a family member are encouraged to be responsible for the care. You will need to know what supplies are needed, the procedure to follow, and how often to do it.

 

CVC care involves:

·         regular flushing with heparin solution to keep the line free from clots

·         changing the injection caps

·        regular dressing changes and proper cleansing of the skin

·        watching for any problems with the catheter or the skin around the catheter.

More information about CVC care, including a list of necessary equipment will be given to you by your nurse.

 

 

Emotional Adjustment and Support

 

During your transplant, you are likely to experience a wide range of emotions and feelings. Feelings that you may have at different times include hope, fear, anger, confusion, frustration, guilt and love. Some days you may feel powerful, strong and in control, whereas other days you may feel powerless and out of control. These are normal reactions when going through such intense treatment.

 

Family members can also struggle to deal with the stress that they experience.

 

Everyone deals with stress in a personal way, you must find what works best for you. Members of the transplant team will do their best to help you and your family during this difficult time.

 

Relaxation techniques may help you gain a sense of control over your emotions and help you relax.

 

You may want to try some of the following:

·         relaxation tapes

·         use of imagery

·         listening to music

·         a quiet time by yourself

·         time alone with a person(s) important to you

·         using the humour cart

 

Please ask for help when you need it. Your nurse or the psychologist can help you find the relaxation method that works best for you.

 

Your family and friends may be the first to notice that you need help. They can be very helpful, and may be able to remind you of successful ways that you have dealt with stress in the past.

 

 

Complications of Transplant

 

a) Infection

 

Infection is a major complication of transplant. When the white blood count drops after conditioning, your immune system does not work well and you are at risk for infection. Infections can be caused by viruses, bacteria or fungi. Often they arise from germs you carry within your own body. Some sources of infections can be other people, food, your surroundings or plants.

 

It is important to notify your nurse if you have any of the following signs and symptoms of infection:

·         a temperature of 38.0°C (100.4°F) lasting four hours or more, or one which is over 38.5°C (101.3°F)

·         a feverish feeling, chills, sweating or shaking

·         a cough, that may produce sputum,  a runny nose,

·         shortness of breath, chest tightness or discomfort

·         frequent urination, burning when urinating, cloudy urine

·         rectal pain, diarrhea

·         vaginal or penile pain

·         tenderness, redness, swelling or drainage around your CVC site s pain, redness or swelling of the throat, mouth, eyes, skin, joints or abdomen

 

If an infection is suspected, you will have some blood drawn from your catheter and from your arm. Your blood will be examined to identify the infection and a medication will be given through your CVC. The kind of medication given will depend on the kind of infection you have.

 

Some sources of infections can be other people, food, your surroundings or plants.

 


Getting Ready for Discharge

There are certain things that you must be able to do before you are ready for discharge from hospital.

These include the following:

·         You are able to identify all aspects of "safety" related to your central venous catheter (CVC).

·         If required, you are able to care for your CVC.

·         You are able to take your medications by mouth. You no longer need Intravenous medication.

·         You have no infection which requires hospital treatment.

·         You are able to eat and drink enough to maintain your weight. (This may be individualized)

 

Once you are discharged, you will visit the outpatient clinic in TBCC on a regular schedule. When you are ready, you will return to your referring doctor.

 

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