Living With a Heart Transplant

Bring this booklet with you when you come for your transplant.

FD.235.H3513.PHC (R.May-15) 1 Table of Contents

About Heart Transplants Introduction ...... 1 Stages of a Heart Transplant ...... 2 Waiting For Your Heart The Wait List ...... 3 Waiting for the call ...... 3 Planning what to bring to the hospital ...... 4 Planning to be away from home ...... 4 This page intentionally left blank Planning where to stay in the Lower Mainland after your surgery ...... 4 Keeping healthy during the wait ...... 5 Checking your finances ...... 5 Advance care planning ...... 5 Getting the call ...... 6 Going through a ‘dry run’ ...... 6 The Heart Transplant Surgery Loss of nerve supply to the heart ...... 7 What to expect when you wake up ...... 7 Heart transplant average recovery (chart) ...... 9 Family and visitors ...... 10 Getting ready to leave the hospital ...... 11 Complications of a Heart Transplant Rejection: Acute Rejection ...... 12 Rejection: Chronic Rejection ...... 14 Infection ...... 15 Cancer ...... 17

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The information in this document is intended solely for the person to whom it was given by the health care team.

Copyright © 2014, St. Paul’s Hospital Heart Transplant Program, Providence Health Care 2 3 About Heart Transplants Table of contents, continued

Taking Your Medications Introduction Where to get your medications ...... 18 Tips for taking transplant medications ...... 18 Taking other medications ...... 19 earning that you need a heart transplant can be very stressful. When you miss a dose of any medication ...... 19 WhetherL you have been sick for a short or long period of time, it can be Transplant Medications hard to imagine this has happened to you. You may have many questions. This booklet will try to answer your questions and guide you through Mycophenolate ...... 20 each stage of the heart transplant. Tacrolimus ...... 22 Prednisone ...... 23 A heart transplant can offer you a second chance at Living With Your New Heart life and hope for the future. Things will be different Recovery - The first weeks and months ...... 25 after your transplant. You will have to make some Living Life - Staying healthy ...... 27 major changes to your life. These changes give you Medical Alert ...... 28 and your new heart the best possible chance for a long and healthy life. Living Life – Returning to Daily Life ...... 29

Nutrition After Heart Transplant ...... 31 If you follow the transplant team’s advice and the tips in this manual, there is a very good chance you can have an active lifestyle, get back to Your Donor ...... 33 your old activities, and return to work. Your Clinic Schedule ...... 34 Science has advanced so that people who have a heart transplant are more When to Get Help ...... 34 likely to survive and live longer than in the past.

Appendices The first year after a heart transplant is a critical time. If a person lives A. Terms you might hear ...... 36 through the first year, that person has a very good chance of living for many years. B. Know your medications ...... 39 C. My Transplant Team Contact Sheet ...... 40 The transplant team is here to support you and your family as you face D. My Vital Signs Record ...... 41 the challenges of living with a new heart. E. Checklists Getting ready for the call ...... 42 Getting ready to go home ...... 43 Clinic, Pharmacy & Emergency telephone numbers ...... back cover

Note: Appendix A explains many terms that you might hear while you are in hospital or in the clinic.

4 1 Waiting for your Heart Waiting for the call The Wait List Hearts must be transplanted quickly and there is no warning of when a suitable Once you and the heart will be found. Because of this, you transplant team have will need a cell phone and you will need Stages of a heart transplant decided to go ahead with to be contactable at all times. the heart transplant, your When a suitable heart is found, we will name is placed on the first try to contact you on either your cell waiting list. The search for phone or home phone. a suitable donor heart begins. You must carry your cell phone with How long will you be on the wait list? P you all the time, even if you are at home. It is hard to predict how long you will Always carry a spare charger with you Up to 1 year wait. Some people are matched with a in case the battery needs to be charged while you are out. Living life suitable heart within the month, while others could wait for over a year. The • Gradually return to Give us as many numbers of family Recovery normal routine and average wait time is 6 to 9 months. P daily life and friends as you can, in case we can’t • You stay in the • Come to the Heart contact you, perhaps they can help us hospital for 2 to 3 How long you wait depends on a few Transplant Clinic weeks find yougo to the nearest phone every month for a factors: Surgery • You return home if year, then once or 1 day to 1 year (or more), you live locally, Always call the transplant • You get the call or twice a year • your blood type P usually around 6 months • You live locally for • You get your • Live a heart healthy coordinator when: up to 3 months • how serious your current heart new heart lifestyle • Come to the Heart condition is • You are going to be away from Waiting • Take anti-rejection Transplant Clinic your home telephone for a period medications, • how easy you are to match • You are on the wait list every week • You need to stay in antibiotics, nutritional of time (such as vacation or visiting communication with the supplements overnight). hospital and other heart Blood Type Average wait time medications for life • You are going to be travelling outside the cell phone’s range Transplant assessment Blood Type A 3 months or more (traveling outside the lower • Is a heart transplant the right option for you? Blood Type B 3 months or more mainland). Contact your cell phone provider to find out what areas are Blood Type AB 1 to 3 months out of range. Blood Type O 9 months or more P Remember, if we are unable to contact you, there is a chance you could miss The reason people with Blood Type O out on a possible heart that matches. wait longer for a suitable heart is because It is your responsibility to make this blood type is the most common of sure we can find you at all times, so all blood types. Because it is the most always plan ahead. common, that means there are more people on the list with the same blood type. 2 3 Waiting for the call, continued Planning to be away from home Keeping healthy during the wait Eat healthy It is important that you eat a healthy Always call the transplant Arrange for someone to look after your Stay positive P diet to prepare for the procedure. This coordinator (or have someone call for pets, water your plants, and pick up your gives you the nutrition you need to keep you) if: mail while you are in the hospital. This Most people find the waiting as the most person needs to be available on short difficult part of the heart transplant healthy and help you recover. • You feel more unwell notice – you never know when you will process. You will feel worried, anxious, If the doctor has asked you to limit the • You are admitted to the hospital get the call. uncertain, or other emotions. This is amount of fluids and salt, continue to normal. While waiting can be frustrating, follow your doctor’s directions. P Have a plan for your travel to Make a list of the people you need to we encourage you to try to stay positive the hospital. We complete the tell that you are going for your heart and hopeful. If you need support Transportation Planning Sheet transplant. The less you have to do when during this time, the transplant team See the dentist (Appendix H) with you. the call comes, the better. psychologist and social worker are here If you have your own teeth and you to help you - just ask the clinic nurse. have not seen your dentist in the Planning what to bring to the Planning where to stay in the hospital last 6 months, book an appointment. Lower Mainland after your Keep active and healthy The transplant nurse will discuss the importance of having regular dental Pack your hospital surgery Stay as active as you can. visits with you. suitcase and have it ready If you do not live in the Lower Mainland, Ask your doctor about to go for when you get you will need to arrange to live locally what level of activity is best the call. Make a list of for up to 3 months after your surgery for you. Checking your finances any items you need to (sometimes longer). The social worker can help you make add at the last minute. Exercise every day, even a plan to manage your finances. We Last minute items usually include things if only for a short period. Exercise is If you do not have a place you can stay, want to make sure you are on all the you use every day such as your glasses, important for your heart and general our social worker will work with you to government programs that you qualify toothbrush, or shaving supplies. health. Slow down if you get short of help find a place. for and, if needed, approach other breath, have chest pain, or feel faint. Talk agencies with you. Try not to bring valuables as they may A group of heart transplant recipients with your doctor about which activities get lost during many transfers between have formed a charity called “The Heart are best for you. wards etc. Transplant Home Society”. They sublet Advance care planning two apartments close to the hospital. One If there is a cardiac rehabilitation As long as you can understand and Appendix E has a handy checklist to use of these apartments might be available program near you, the clinic nurse will communicate with your care team, you when packing your bag. to stay in. These homes are not always work with you to join the group. make your own decisions about your available and are rented on a first come, care and treatment. However, there first serve basis. So all patients should Do not smoke. Smoking could come a time when you are not able Do not bring a lot of cash or valuables. have a “plan B”. is deadly both before and after the transplant. If to express your treatment wishes to us. Talk to your family now about the care TIP: Use the checklist in Appendix E to you smoke, you will not you would agree to, or refuse, in case help you get ready for the call. be eligible for a heart transplant. You must have you cannot speak for yourself later. stopped smoking for at least 3 months before you will be considered for a heart By planning ahead, you can be sure your transplant. family, friends, and care providers know your wishes and use these wishes to guide your care and treatment. 4 5 Advance care planning, continued Going through a ‘dry run’ The Heart Transplant Your transplanted heart rate will not respond as quickly to such things as To learn more about this, talk to our Surgery Sometimes a person is called to the exercise, stress, or fear. It will also take social worker and read the booklet hospital and prepared for surgery only longer for your heart rate to return to (available online): ‘My Voice: Expressing Once we know for sure the donor heart is to find the donor heart is not suitable normal afterwards. My Wishes for Future Health Care a good match for you, we go ahead with and the transplant is cancelled. When Treatment’ from the BC Ministry of the surgery. this happens, we call it a ‘dry run’. Health (www.seniorsbc.ca) What to expect when you Unfortunately, dry runs happen about 1 The transplant surgery takes about 4 to wake up time out of 3 transplant calls. 6 hours, depending on your condition. Getting the call It could take longer if you have a After the surgery, we move you to our If this happens to you, it can be very Ventricular Assist Device (VAD) in place. Once you get the call: Cardiac Surgery Intensive Care Unit disappointing for you and your family. rd To do the surgery, the heart surgeon (CSICU) on the 3 floor to recover. But it is better to go through a dry run • do not take any medication, but opens your chest by cutting through your bring it with you. We will decide than have a heart transplanted that is not When you first wake up, you will hear breastbone (or sternum). The surgeon voices, and the sounds of medical which pills you should take. a good match. connects you to a heart-lung machine. equipment around you. You will be very • arrange a ride to the hospital or If the transplant is cancelled, usually you Your blood flow is routed through this sleepy for several hours. You might be machine and does the work of both your airport by either asking a family go home from the hospital the same day. a bit confused and not sure what has member or friend to drive you, or heart and lungs during the surgery. happened or where you are. We remind take a taxi you often where you are and what is Whenever you get the call, always ask The surgeon removes your old heart and happening. • do not eat or drink anything. your family, or support person, not to attaches the new heart. The surgeon wires • pack your last minute items into leave the hospital, or to stay close by, your breastbone together and sews or You will have a bandage on your your hospital suitcase until they know the transplant is going staples your incision closed. chest, and a number of tubes and lines ahead. connected to you. Once at the hospital, come to ward 5A. At night, go through the Emergency If you have a ‘dry run’: Endotracheal tube Department and tell them you are here • You need to arrange a way to get a This plastic tube goes through your for a heart transplant. ride back home. mouth and down into your windpipe. The tube is about the size of your little We put an intravenous line into your • For those with an implantable finger. arms so we can give you medications defibrillator in place, you will not and monitor you during the surgery. be able to go home until it is turned This ‘breathing tube’ keeps your back on. This is usually done during windpipe open so we can give oxygen the day. and help you breathe until you are • For those taking Coumadin (or fully awake. We connect this tube to a breathing machine called a ‘ventilator’. warfarin), you must wait until we Loss of nerve supply to the heart give you instructions about the If you get a build-up of mucus in your dose and extra blood work. This is The heart has many nerve connections. lungs, we can easily clear this with a small suction tube passed down through because we could have given you When your heart is removed, these nerves the endotracheal tube. medication to reverse the blood- are cut. thinning effects of Coumadin. This Because of this, your new heart will beat causes your INR tests to be too low. a little faster and this is normal. Your new ‘resting heart rate’ will be around 90 to 110 beats per minute. 6 7 What to expect when you wake up, continued Pacemaker You cannot speak with the endotracheal tube Small pacemaker wires that were attached in place. We will ask you “yes” and “no” to your new heart during the surgery may questions so you can answer with a nod be connected to a temporary pacemaker. The for “yes” and a shake of the head for “no”. pacemaker helps regulate your new heartbeat We remove the tube within 24 hours of the for the first few days. We usually remove these surgery. wires a few days after your surgery. Breathing tube Chest tubes A plastic tube goes through your mouth and These plastic tubes are placed around the heart down into your windpipe. The tube is about during surgery. They come out through small the size of your little finger. holes in the skin of your chest. They drain any blood from the site of the surgery. Once the This ‘breathing tube’ (medical term: tubes stop draining, we remove them. This is endotracheal tube) keeps your windpipe usually within 2 days of the surgery. open so we can give oxygen and help you breathe until you are fully awake. We Intravenous lines connect this tube to a breathing machine You will have intravenous lines (or I.V. lines) in (ventilator). your neck and arms. We use these to give you medications and fluids. You cannot speak with the endotracheal tube in place. We will ask you “yes” and We take out most of your intravenous lines “no” questions so you can nod or shake your within a week of your surgery. head to answer. We usually remove the tube Urinary catheter within 24 hours of the surgery. This small tube goes into your bladder. It Heart monitor empties urine from your bladder until you are able to go to the toilet yourself. We usually The heart monitor gives us a constant remove this tube within a few days of your display of your heart rhythm. surgery. Ventilator for breathing tubes Heart Transplant Average Recovery Average Transplant Heart Intravenous lines

Heart monitor

Breathing tubes This is a guide only. Each patient recovers differently. If you have any questions, please talk to the doctor please talk or nurse. questions, any you have If differently. recovers Each patient is a guide only. This

Pacemaker & chest tubes (not shown)

Intravenous lines Urinary catheter 8 9 Activity Medications We encourage you to ask at least one We also talk with you about returning person to join you in learning about life home. If you do not live locally, the Usually, on the first day after your From the time you have after your transplant. Together, you will social worker will talk about where you surgery, we get you sitting up on the your new heart, you learn about your medications, what to will stay for the next few months. edge of the bed. must take anti-rejection watch for when you go home, and how medications. We also to care for yourself at home. There is The Transplant Clinic nurse will talk About 2-3 days after your surgery, we give you medications a lot to remember and having another with you about your schedule for check- move you back to our cardiology unit to control your blood person learn it with you will help in ups and blood tests. (5A). It is here where you begin to eat, pressure and to manage extra fluid in your recovery. move about, and get your strength back. your body. TIP: If you need help, check the back page of this manual for important phone During this time, you will slowly numbers. increase your activity. This includes Family and visitors walking and doing exercises. Getting ready to leave the After your surgery, your hospital family will be anxious to Your incision and pain see you. Close family and You usually stay in the hospital for 2 to Your incision goes friends can visit you in 3 weeks. down the middle the CSICU at any time. of your breastbone. Remember you will be During this time, you will be learning We leave it covered tired and probably not feel like lots what you need to know to live with with a bandage for of visitors. It is best just to have close your new heart. about 2 days. family and friends and only for short periods. We will encourage you to do more for Your chest will hurt when you cough or yourself each day. move. To keep all your family and friends Your chest will feel bruised and it will informed, we ask you to appoint a We will teach you: hurt when you cough or move around. contact person for the family. −− how to do your exercises Coughing and moving are important to The contact person: your recovery. −− how to monitor your blood • talks with the doctor and nurse pressure, pulse, and temperature We regularly give you medication regularly about your condition −− how to take your medications for the pain to make sure you are as • gives the details of your condition to −− what to look for and what to do if comfortable as possible. other family and friends you are having problems at home By the end of your stay in the hospital, Eating and drinking Once you move to the cardiology unit you will be taking your medications on (5A), your family and visitors are You will not be eating or drinking your own with a nurse or pharmacist welcome to visit for short periods. anything for the first day or so. watching you. This is a good time to Remember you will get tired easily and review that medication and ask any On the day after your surgery you can you need your rest. questions you might have. start eating small amounts of food and fluids.

10 11 Complications of a Heart 1. Stopping acute rejection before it Signs of rejection To do a heart biopsy: starts Transplant Most rejection episodes are mild. You • you go to the radiology department. might not notice any signs of rejection. We want to focus on complications We give you a number of medications • the doctor injects freezing (local You might only find out when it is specific to your heart transplant, what to to weaken your body’s immune system. anaesthetic) around where the detected with a biopsy. watch for, how to prevent them, and how These are called anti-rejection or biopsy goes through your skin immunosuppressant medications. These we treat them. The main complications • the doctor threads a thin flexible medications help stop the damage to Signs to watch for and report right away: are: tube through a vein and into your your heart. −− decreased energy level heart. You might feel some pressure • Rejection We closely monitor the medications and −− reduced ability to exercise as the tube is inserted. - Acute rejection how much you are taking of each one. −− weight gain (more than 2kg (4lb) in • through the tube, the doctor inserts - Chronic rejection When you first start taking anti-rejection a day or 2.5kg (5lb) in a week) a small tool that can take tiny pieces medications, the doses will be high. After −− shortness of breath while doing of heart tissue. You might feel a • Infection a short period, as the risk of rejection normal activities gentle tugging in your chest as these • Cancer decreases, the doses are lowered. −− irregular heart rate or palpitations tiny pieces are taken. −− low blood pressure Rejection: Acute Rejection Your transplant doctor adjusts your medications so your body has just You might notice you feel a bit like you Acute rejection can happen any time enough to protect your heart but not too did before your heart transplant. after the transplant, but is most common much to stop your body from reacting to in the first 6 months. and fighting off infection. If you notice any of these, report them right away to the Transplant Clinic Your body’s immune system reacts to You must take anti-rejection medications nurse or doctor, anytime day or night. the new heart and tries to get rid of it like for the rest of your life or you will die. it would if it was a virus or bacteria. This Heart Biopsies is a way that the body tries to protect 2. Recognize acute rejection when it Currently, the most reliable way of itself from foreign invaders. If this happens protective process is not stopped, your detecting rejection early is with heart heart could be damaged, even destroyed. Rejection episodes can happen even biopsies. This is a safe test. It takes about This process is called rejection. if you are taking your anti-rejection 10 to 15 minutes to do. The pieces taken from your heart are so medications regularly and as directed. small the heart is not affected during or The best ways to fight rejection: We arrange for your heart biopsies to be after your biopsy. However, it is possible For most people, if we catch it early and done once a week for the first few weeks the biopsy could cause some bleeding or 1. Stop it before it starts. treat it right away, we should be able to after surgery, then once a month for the bruising. reverse the rejection episode completely. first five to six months. After the first 2. Recognize it when it happens. year, generally you do not need heart After a heart biopsy, if you notice any To prevent rejection episodes, take biopsies. pain in the chest, shortness of breath, 3. Treat it early. medications on schedule and as directed. or heart palpitations, report it to the Heart biopsies are also done after transplant team immediately. treatment of a rejection episode so we can make sure the rejection has been

completely reversed.

12 13 3. Treating rejection early Rejection: Chronic Rejection Infection That means: • do not get very close to, or kiss, a Usually, we treat the rejection by Chronic rejection is when the arteries of While helping your body accept person who is sick. increasing doses of prednisone (or your transplanted heart become thicker. your new heart, your anti-rejection steroids). You might get this medication As the arteries get thicker, the blood flow medications weaken your immune • if your spouse/partner has a cold, through an intravenous or by taking to the heart muscle decreases. You might system. A weakened immune system it might be best to sleep in another pills. This treatment is usually enough to hear us refer to this as ‘Cardiac Allograft means your body cannot fight off room until the coughing and reverse the rejection. Vasculopathy’ (CAV). infections the same way you could before sneezing stops. taking these medications. • ask people with colds to cover their There are different levels of rejection, Normally, a person would have chest nose and mouth when coughing or called grades. Get to know these grades. pain as a sign the heart muscle is not You are more likely to get infections after sneezing. After each heart biopsy, the transplant getting enough blood. However, the your transplant. As the doses of some • try not to visit people who are sick. nurse will you know the grade of nerves that allow you to feel the chest medications are lowered over time, the rejection. pain are often damaged during the risk of infection falls. The risk will be Others ways to help from getting an transplant surgery. This means you there for the rest of your life – as long as infection: might not feel any chest pain. you are on medication. • Take your medications that are Level of Grade Action We do yearly tests such as an angiogram, As with rejection, the best ways to fight meant to help prevent common Rejection or a special echo test called ‘dobutamine infection are to: infections. 0 No rejection stress echo’ where we use special dye to • Always tell your dentist you have see if your arteries are narrowing. 1. Stop it before it starts. had a heart transplant. Mild Usually not • Follow the food safety instructions 1R In most cases, the disease is mild and can 2. Recognize it when it happens. rejection treated outlined in this manual. be managed with medications. Usually treated 3. Treat it early. • Do not go into crowded, poorly 2R Moderate with steroids by Only the most severe cases may require ventilated areas. rejection intravenous or major treatment such as angioplasty (a pill 1. Stopping infection before it starts • Keep your pets clean and do not balloon to open the blockage), bypass allow them to lick your face. Wash Most infections are passed from hand to Treated with IV surgery, or, rarely, a second transplant. hands after petting animals. steroid mouth. Other infections are carried in To help prevent chronic rejection, take the air. Many infections are present in • If you have a cat, ask someone else Closely your medications as prescribed, exercise our bodies already and flare up when we to change the cat litter or wear a dust Severe mask and gloves. 3R rejection monitored and eat a heart healthy diet. take anti-rejection drugs. either 5A • Do not use public whirlpools or hot or CCU The best ways to prevent an infection are: depending on tubs. your condition • wash your hands often. • For the first 3 to 6 months after • ask others to wash their hands before surgery, do not go into public touching you. swimming pools. • try not to have ‘close contact’ with • Wear a dust mask when sanding people who have a cold or infection. paint, gardening in dry, dusty conditions, or when doing any other dusty activity.

14 15 Stopping infection before it starts, continued • Throwing up (vomiting). Cancer Other types of cancer • Diarrhea. It is very important to have a family • if you have birds or fish as pets, When people take anti-rejection • Pain in the stomach. doctor that is committed to regular have others clean the cages or tank. medications for a long time, they are cancer screening for you. Ideally, birds should not be in the • Headache that does not go away more vulnerable to other disease, with pain medicine. house due to the dust they create. including certain types of cancer. The Your family doctor should monitor you If you notice any of these signs, report most common type of cancer is skin closely for other types of cancer for the them right away to the Transplant Clinic cancer. rest of your life. 2. Recognizing infection when it nurse or doctor. See the phone numbers happens on the back cover. Helping to prevent skin cancer You should have regular PAP tests and breast exams if you are a woman. It is important to catch any infection All transplant recipients are more prone early. 3. Treating infection early to skin cancer. You should have regular prostate tests if you are a man. What to watch for: The medication we give depends on the type of infection and where it is. We To protect your skin: o o Regular bowel screening is also very • Fever above 37.5 C (99 F) two times might need to give you more than one important for both men and women. in 2 hours. medication. P Wear sun block with a sun protection factor (SPF) of 30 or higher. • Coughing up sputum, or a dry Report any sudden, unexpected weight If you are unwell, call the transplant loss or other unusual signs to your cough. Wear sunglasses when outdoors. clinic during office hours or the P doctor. • Burning or stinging sensation when emergency number on the back cover. you urinate. P Wear a hat with a wide brim. • Cold sores on the lips or cankers in If you or your loved one feels you are Wear protective clothing when the mouth. very ill, call an ambulance. P outdoors. • You notice redness, swelling, drainage, or pain around any cut or P Never use a tanning booth. scrape. Your doctor should refer you to a dermatologist to be checked at least every 6 months to a year, depending on your skin. If you prefer, the transplant doctor can refer you to a dermatologist at St Paul’s.

Signs of skin cancer If you notice any new skin spot or change to a mole, report it to your doctor.

16 17 Taking Your Medications Tips for taking transplant TIP Never eat grapefruit, pomegranate, • Medication to prevent stomach medications pomelo, or their juices. These fruits and ulcers, usually for the first 6 months You are taking medications their juices can affect how anti-rejection • NEVER stop taking any transplant • Aspirin to help keep the blood from to help keep your drugs work. clotting too quickly, for life transplanted heart working medication unless the transplant • Vitamins and minerals, for the first well and to keep you doctor has told you to stop. Always check with the Transplant Clinic 3-6 months healthy. When you take • Take your transplant medications doctor or nurse before taking: all your medications as at the same time in the same way • Anti-viral medication (acyclovir directed, you give yourself every day. This keeps the amount of • any new medications, or valganciclovir) to prevent the best chance of having a healthy medication in your body the same • over-the-counter medicines herpes virus (very common after transplanted heart for a long time. throughout the day. (medicines you can buy without a a transplant), or cytomegalovirus • Take your transplant medications prescription), (CMV, a common infection similar As you recover and gain your strength, exactly as directed on the label. to mononucleosis or mono), for 3-6 we reduce the doses of your medications • ANY natural health or herbal months Never change the dose of your products. to a minimum level. Some will be medications without the go ahead • Diuretics (water pills), can be stopped. from the transplant doctor. Some of these products can interact with stopped if fluid retention is no longer • Report side effects to the Transplant your transplant medications or cause an issue for you. The doctors will Where to get your medications Clinic. side effects. check you regularly. We give you a supply of your transplant • Men should not father a child medications (your anti-rejection without talking to the transplant Taking other medications medications) when you are ready to doctor. Some of the drugs can affect In addition to your transplant When you miss a dose of any leave the hospital. the unborn baby. medications, you will have a number medication • If you are a woman and could get of other medications you need to take All your anti-rejection and some anti- If you miss a dose and it is less than virus medications are supplied by BC pregnant, transplant medications can regularly. Take each medication as P harm the unborn baby. directed. half the time before you must take Transplant. This means you do not your next dose: have to pay for them. However, you are −− You must use birth control. Not everyone takes all these medications, responsible for the cost of all your other −− If you become pregnant while • take the missed dose, but you will be taking some of them: medications. taking this medication, call the • then take your next dose on transplant clinic right away. • Pain medication – usually stopped schedule. The key is to have a really good system after 3-6 weeks to keep track of when you need to P If you miss a dose and it is more than get refills. It can get confusing! The • Anti-bacterial medication called cotrimoxazole (Septra) to prevent half the time before you must take BC Transplant Pharmacy at St Paul’s your next dose: Hospital (located on the first floor of severe pneumonia. This drug is the Providence Building) needs at least usually stopped after 6 months • skip the missed dose, 3 days notice if a refill is needed. The • Medication to lower your blood • then take your next dose on phone number is on the back cover. pressure - most people are on this for schedule. life. Plan ahead. This will prevent many • Medication to lower your cholesterol, problems in the future. usually for life Buy all of your other medications at your local pharmacy.

18 19 Missing a dose of medication, continued Transplant Medications - call your doctor right away if you become pregnant. (Anti-Rejection Medications) P Never take 2 doses at the same time • If you are a man: or take any extra doses to make up for missed doses. - you should not father a child while Mycophenolate (my-ko-fen-oh-late) taking this medication. Example: Other names: CellCept® Novo-Mycophenolate - use some form of contraception. If you are to take a medication every 12 Myfortic® hours and you remember to take your Tell your transplant team if any of these medication within 6 hours of the time Capsules: 250 mg (blue and dark orange) side effects bother you or do not go you were to take it, take the missed dose. Tablets: 500 mg (lavender) away: If it is more than 6 hours after the time • diarrhea you were to take it, skip that dose. Wait What is it? • loss of appetite and take your next dose as scheduled. • headache Mycophenolate is an anti-rejection Examples of Mycophenolate • rash (not to scale) Worried about missing a dose? medication. • trouble breathing • Write down the time and date you Note: How to take • chest pain or pressure missed the dose. Numbers on tablet • Keep the pills in the supplied • dizziness or fainting do not necessarily • Contact the post transplant nurse. container sealed until ready to take • very tired or no energy indicate the dosage. them. Know your medications • swelling of the hands, feet, ankles, or • Take at the same time and the same lower legs We know it will take time to learn way every day. all your different medications. The • unusual bruising or bleeding • Usually take one dose every 12 commons ones are described on the next hours, in the morning and evening. few pages. Other notes • Swallow the pill whole. Do not Use the list of questions in Appendix crush, break, or chew the pill. • If other people handle the capsules, they must wash their hands. B to help you learn about all your • Wash your hands after touching the medications. pill. • Store this medication in dry, dark place at room temperature. What to watch for • If you take antacids containing aluminium & magnesium (Maalox) • This medication can cause birth or magnesium supplements, or defects. calcium supplements, take them 2 • If you are a woman and could get hours before or 4 hours after taking pregnant: this medication. - use birth control before beginning, during, and for 6 weeks after taking this medication.

20 21 Tacrolimus, continued Tacrolimus (tah-crow-li-mus) Prednisone (pred-ni-zone) • very thirsty Other names: Prograf® Other names: Apo-prednisone®, • painful or difficult urination Novo-Prednisone, Capsules: 0.5 mg (yellow), 1.0 mg (white) • passing only small amounts of urine Winpred™ 5 mg (pink) • unusual bruising or bleeding Tablets: 1 mg, 5 mg, 50 mg What is it? Other notes Liquid: called Prednisone • Store this medication in dry, dark Tacrolimus is an anti-rejection drug. Examples of Tacrolimus place at room temperature. (not to scale) What is it? To work properly, this medication must • On the day you are scheduled for stay at a certain level in your blood. If blood tests: Prednisone is also sometimes called ‘steroids’. It is an anti-rejection drug. the level is too low, your body can reject What to watch for −− write down the last time you took your heart. If the level is too high, it can your medication and bring this This drug starts at a high dose and is damage your kidneys or liver. Most side effects either go away with with you. slowly lowered down over 4-6 months. In most people we are able to stop it after time or when the dose is reduced. −− Do Not take your morning dose of Over time, we allow the levels to get that time. Some people will take it for Tacrolimus until after your blood is lower. Although the doses will be Tell your transplant team if any of these the rest of their lives. drawn. dropped to a minimum over 12 months, side effects bother you or do not go you will be on this drug for the rest of away: −− take your medication as scheduled, How to take unless told differently. your life. • The dose of this medication can • vomiting • If you take antacids, take them 2 change often. Always take the dose hours before or 4 hours after taking How to take • diarrhea ordered for you. this medication. • Take at the same time and the same • headaches • Take this medication with food or a way every day. • feeling dizzy glass of milk to keep from getting an • Usually take one dose every • high blood pressure (over 140/85) upset stomach. 12 hours. You should take this • increased blood sugar • At first, this medication is taken medication the same way and same twice a day. After your condition • tremors (shaking) in the hands or time every day. stabilizes, the doctors will ask you to feet • Do not eat grapefruit, pomegranate, take this medication once a day. • trouble sleeping pomelo and their juices. These fruits • Prednisone tablets can be cut in half can change how this medication • rash, hives or skin blisters either by hand or with a pill cutter. works. • swelling of the mouth, face, lips, Sometimes you will have to take take • Swallow the pill whole. Do not tongue, or throat ½ tablets as your prednisone doses crush, break, or chew the pill. • very hoarse voice or sore throat are slowly dropped down. • trouble breathing • chest pain or pressure • swelling of the hands, feet, ankles, or lower legs

22 23 Prednisone, continued −− trouble breathing Living With Your New Heart P Check your weight: −− trouble thinking (confusion) • every morning at the same time What to watch for Recovery - The first weeks and (empty your bladder first) This medication has many side effects Other notes months If you gain more than 2 kg (4 lb) in 2 that depend on how much and how • Weigh yourself every day at the days, or 2.5 kg (5lb) in a week, contact often you take it. Some patients suffer Keeping safe same time. Empty your bladder the transplant clinic (see back cover for from diabetes after the transplant, even if before you weigh yourself. Keep a numbers). they didn’t before. Blood sugar levels are You need to have someone stay with record of your weight. you for at least the first month after much higher while on Prednisone. You Use the Vital Sign Record in Appendix may have to take insulin for a while. • Make sure you know your correct the transplant. You will need help with dose because this dose will change managing at home for the first while. D to keep track of your readings. People who are already diabetic will often. notice their sugar levels are more • Store this medication in a dry place Monitoring your heart Activity difficult to control. at room temperature. Rest often for the first few weeks. Check your blood pressure: P • If you take antacids, take them 2 P Save your energy. We will refer diabetic patients to a hours before or 4 hours after taking • once a day. for the first 3 months specialist if they don’t already have one Do your deep breathing and coughing this medication. • if you feel dizzy or have a headache P to help them manage. The diabetes exercises frequently. Remember to will change as the doses of Prednisone • Limit the amount of sweets you Check your blood pressure while protect your breastbone. changes, so you must be very careful eat or drink, such as candy, pop, sitting down. about measuring and treating your sugar desserts, and jams. Look for sugar- P Go for short walks. free substitutes. levels. P Check your pulse: P Start attending the Healthy Heart • once a day Program. The nurse will arrange this Tell your transplant team if any of these for you. side effects bother you or do not go • if you feel dizzy, feel a pounding or away: fluttering in your chest, or you feel your heart skipping beats −− more hungry than normal for you −− weight gain P Check your temperature: −− vomiting • once a day for the first 3 months −− mood swings • any time you do not feel well −− feeling anxious or paranoid −− pimples (acne) Always wait 20 minutes after eating or −− bruise easily drinking anything hot or cold before taking your temperature. −− pain in joints Examples of Prednisone o −− trouble sleeping (not to scale) If your temperature is more than 37.5 C −− headaches (99oF), take your temperature again −− swelling of the hands, feet, ankles, in one hour. If it is still high, call the or lower legs Note: transplant team. Numbers on tablet do not −− feeling dizzy or unwell Ù necessarily indicate the −− weak muscles dosage. −− mouth sores 24 25 Recovery - The first weeks and months, continued Sleeping Living life - Staying healthy Continue to take pain medication when You might have some Protect your breastbone The best way to stay healthy is to: you need it. Make sure you take pain trouble sleeping when you Your breastbone takes 6 to 8 weeks to medication at least one hour before you first get home. This can −− take your medications correctly fully heal. do any activities or exercises. Remember, be from the medications, −− get your health checked regularly it is important to keep moving. It helps discomfort from your by your GP or Family Doctor Brace your chest when coughing or you recover. P chest incision, changes in −− eat a healthy diet sneezing, especially for the first 2 your daily routine, or worry about being −− get plenty of exercise weeks. Eating and drinking out of the hospital. −− protect yourself from illness P Report any severe pain to the You must continue to Talk to the transplant doctor or nurse if transplant doctor or nurse. limit the amount of fluids you continue to have trouble sleeping. Get your health checked regularly you drink for the first few weeks. We check this Transplant Clinic Visits P Arrange to see your û Do not lift more than 8 pounds. each time you visit the family doctor every Transplant Clinic. P You must visit the Transplant Clinic 2 6 to 12 months. Your û Do not push or pull with your arms times a week for the first few weeks. family doctor is the such as when moving in bed and You will have learned by now how person who oversees getting out of bed. many calories you can eat and how P Your clinic visits can include: all your health care much fluids, salt, fats, cholesterol, and needs. Do not drive for at least 6 weeks û carbohydrates you can have. • blood tests after the surgery. After that, ask the • heart biopsies P See your dentist every 6 months to get transplant doctor if you are allowed If you find some of your medications your teeth checked and cleaned. • a visit with the Transplant Clinic to drive. make you feel sick to your stomach: nurse • Remind your dentist that you are a transplant patient and are taking Your incision and pain • make sure you have some food • an examination by the transplant anti-rejection drugs. in your stomach before taking You will have pain on the surface of your doctor your pills (unless the instruction chest. As your incision heals, expect to • a session with the physiotherapist in Eat healthy specifically says to take a certain pill feel itching, burning, or tingling along the Healthy Heart Program on an empty stomach). Continue to follow your diet, eating your incision. You might find your skin • meetings with other transplant team P • eat small amounts frequently. healthy foods. around your incision feels numb or members sensitive to touch. • take small sips of diluted juices, clear The Transplant Clinic nurse needs to Get plenty of exercise Contact the transplant doctor or nurse low salt soups, or diet-carbonated be able to contact you with instructions if you have any of the following signs of drinks such as diet ginger ale. Attend the Healthy Heart Program. after these tests are done. Make sure you P infection: • This program will get you exercising leave the correct contact details with the regularly. −− redness around the incision clerk. −− swelling around the incision • Nurses, doctors, and exercise specialists are there to keep track −− yellow or green drainage from the of your progress and help you if incision needed. −− severe pain around the incision o o Make time for exercise every day. −− a fever above 37.5 C (99 F) P

26 27 Get plenty of exercise, continued Some men have trouble getting or Don’t smoke. If you Living Life – P keeping an erection, both before and used to smoke and are Returning to daily life after a heart transplant. Talk about this Take time to warm up before finding it difficult to P with your transplant doctor. There are a exercising. Warming up will help to stay off them, speak We encourage people to resume a normal number of treatments available to help. slowly increase your heart rate. with the transplant life as soon as they are well enough P Take time to cool down after nurse. They will be Women must not get pregnant for the Understanding your emotions exercising. This will help your heart able to link you with first year after transplant. Any planned some programs to keep you free of to slowly return to its normal rate. It is common for a person who has had pregnancy should be discussed with the smoking. a heart transplant to feel a range of transplant doctor as the medications may emotions, from high to low. This can last affect the unborn child. Protect yourself from illness Before you drink any alcohol or use P from days to months. Regular handwashing (both you recreational drugs, talk with your Men should not father children until P transplant doctor. Alcohol and drugs and your loved ones) is the best These feelings can be from the stress discussed with the transplant doctors. way to protect yourself from can interfere with how some your body has gone through, from the Some of the medications can affect the infections. medications work. stress of living with a health condition unborn child. and the medications, and/or from the Stay healthy by preparing food P side effects of the medications you are safely and avoid getting food Medical Alert Going back to work taking. poisoning. Let everyone know you have had a heart About 3 months after your • Always wash your hands before transplant and are taking anti-rejection If you are finding it hard to deal with transplant, you should be preparing food and before eating. medications. these emotions, let your transplant team able to get back to work. know. We can arrange for you to see a However, this depends • Always wash and sanitize the Wear a medical alert bracelet or psychologist or psychiatrist. They can on how you are doing surfaces you use to prepare food. P necklace. help you deal with your emotions and and what kind of work • Read ‘Food Safety: Easy Steps to find ways to live life to the fullest. you do. You might need to start slowly Make Food Safe’ (HealthLinkBC P Carry a medical alert card in and work part-time until you build up Health File Number 59a). your wallet next to your photo Sex and pregnancy your strength. Talk with your transplant identification. doctor about what works best for you. • Follow “boil water” alerts issued by It is fine to have sex after your heart local health authorities. transplant. How soon you return to Travel P Prevent disease. having sex depends on how you feel and how much energy you have. To give you As you recover and • Get a tetanus vaccine every ten years. an idea of the energy needed, sex can return to your daily life, You were given one before your take about as much energy as climbing you might want to go on transplant. two flights of stairs. a vacation or travel for • Get a flu vaccine each year. For 6 weeks after your transplant: longer periods. Once the • Always check with the Transplant transplant doctor has told • choose a position you are Clinic before getting any other you that your body has adjusted to your comfortable in. vaccines. new heart and you do not need blood Don’t forget that sexual contact is a tests as often, you can start planning. possible way of getting an infection. If you do not have a regular sexual partner, use condoms to decrease your chance of getting an infection. 28 29 It is best not to travel to places where • Choose pâtés, meat spreads, and Take enough of the rest of your Nutrition after heart sanitation is a concern. This is because P smoked seafood or salmon sold in medications to last your whole transplant there is a greater chance you could get cans or choose those that do not need trip plus some extra, in case of an an infection and the health services you This gives you general information on to be kept in the refrigerator until emergency or a delay. would need might not be available. eating a healthy diet. Before you leave after you open them. the hospital, your dietician gives you If travelling to a different time zone, • Never take chances with your food. Check with the Transplant Clinic first. P information specific to you. P ask the Transplant Clinic nurse if you Remember, foods may not look or We will let you know if it is safe to should adjust your medication times, smell bad so when in doubt, throw it travel. Certain fruits and transplant and if so, how. out. medications don’t mix Get a travel letter from the Transplant For more information on making food safe, read Food P Get your regular blood tests done Certain fruits and their Safety: Ten Easy Steps to Make Food Safe (#59a) from Clinic. This letter has: P HealthLinkBC before you go away. juices can make the −− a list your current medications blood levels of your anti- ? Eat a diet high in protein (useful when crossing borders) P Check with the transplant doctor rejection medication too −− recent blood work results before getting any vaccinations, high. or taking any tropical disease You need a diet high in protein for about −− Transplant Clinic phone number medication. 4 to 6 weeks after your heart transplant. −− phone number for the BC Do not eat grapefruit, pomegranate, Transplant Society answering pomelo and their juices Protein helps your body heal from service where you can contact your surgery. transplant doctor 24 hours a day Protect yourself from infection −− contact details for the closest Limit the amount of fluid you transplant centre where you are Raw or undercooked foods can drink and eat travelling carry harmful bacteria. With a lower P Buy travel health insurance. Make immune system from your transplant Right after your heart transplant, your sure it covers pre-existing illnesses. If medications, there is a greater chance body will still hold extra water. you have trouble getting travel health you could get very ill. Usually, people with a heart transplant insurance, contact the social worker. • Always fully cook meat, fish and are limited to 1500 mL (6.5 cups) of fluid eggs. Keep all medications in their original in a day. You might be able to drink more P • Choose dried deli meats such as containers. Make sure the medication fluids once your body stops retaining salami and pepperoni. Make sure name is clearly marked. This is very water – check with the transplant team they are low salt. important when crossing borders. before you do so. • Do not eat uncooked hot dog P Carry twice the amount of anti- wieners. rejection medication you will need. • Eat and drink only pasteurized dairy Keep half with you at all times and products such as hard cheeses and put the other half in your luggage. yogurts. Most products sold in stores That way, even if your luggage or are pasteurized. handbag is stolen or lost, you have −− do not eat unpasteurized dairy enough medications to get you products, including soft and through the trip. semi-soft cheeses such as Feta, Camembert, Brie, and blue-veined cheese. 30 31 Nutrition after heart transplant, continued Calcium and Bone Health • eat more high fibre foods such as vegetables, fruits, whole grains, and Follow a low salt diet When a person takes prednisone for beans. They are naturally low in Your Donor a long time, it can cause their bones fat and can help you from feeling High blood pressure is common for to become thin and breakable (called ou are alive today because someone hungry. decided to be an organ donor and people with heart transplants. Too much osteoporosis). Y salt in your diet increases the chances of • choose lean cuts of meat, fish, and give the gift of life. You might receive a you holding extra water in your body. • For at least the first 3 months after poultry. letter or card from the donor’s family, telling you something about the donor. You will need to follow a low-salt diet for your surgery, you must take a • choose non-fat dairy products. calcium and Vitamin D supplement the rest of your life. • limit how much animal fat and You are welcome to write and thank the to make sure you get enough saturated fats you eat. donor family. There is no time limit on calcium in your body. Limit the amount of salt or sodium in • exercise regularly - an excellent way when to write. You can write at any time. • Eat 4 servings of food high in your diet to 2000 mg or less. to control your weight, improve your calcium each day. If you choose to write to the donor cholesterol levels, and to keep your family, do not put details about yourself • If you find it hard to eat 4 servings of bones strong. One teaspoon of salt contains in the letter that could identify you, your foods high in calcium each day, talk family, where you live, or where you 2300mg of sodium! to your dietitian. work.

Weight Gain and High Send or bring your letter to the Cholesterol Transplant Clinic. The social worker will Control your blood sugar forward it to BC Transplant who will Transplant medications can cause then send it to the donor family. The medication prednisone could you to gain weight and give you high cause your blood sugars to increase. If cholesterol. you become diabetic (which happens The BC Human Tissue Gift Act sometimes after a transplant), the If you put on too much weight, it could protects the identities of donors, dietitian will talk to you in detail. cause: recipients and their families. This means you will not know who To help keep your blood sugar within −− high blood pressure your donor was, and the donor's normal range: −− hardening of the arteries family will not know who you are. −− problems with controlling blood • eat at least 3 meals a day with sugar, especially if you already regular snacks. have diabetes The person who • eat foods high in fibre and whole receives a heart grains. transplant is called To control your weight: the ‘recipient’ • limit foods that contain simple sugars like sweetened drinks, regular • eat 3 meals a day. pop, dried fruits, and ice cream. • eat a snack if your meals are more The person who than 4 to 6 hours apart. This helps gives the heart is control your hunger and help you to called the ‘donor’ not overeat at mealtime.

32 33 Your Clinic Schedule When to get help −− sores anywhere on your body, including cold sores If you live outside of the lower mainland, Call 9-1-1 for any of the following: you may be transferred to a clinic −− redness, swelling, drainage, or pain • Chest pain or pressure closer to home. BC Transplant has post around your incision or around transplant clinics in the Interior and • Feel faint or very dizzy for more any cut or scrape Victoria. than 5 minutes −− diarrhea • Have really bad stomach pain −− pain in your stomach

Clinic Visit and Biopsy Schedule • Severe bleeding (See Appendix C for contact phone numbers) • Weekly for the first month on a • All the normal reasons you would Thursday morning call an ambulance Contact your family doctor for any of • Once every two weeks for a month the following: Contact the Transplant Clinic nurse or • Monthly until 6 months doctor, anytime day or night (see back • Any health concerns not related to • Nine months cover for phone numbers) for any of the your heart or transplant medications following: • One year (an angiogram and echo • Any prescriptions for drugs that you tests will be done to monitor your • Signs of rejection: were on before your transplant for heart). No more biopsies will be conditions not related to your heart. −− decreased energy level done after one year unless you are −− reduced ability to exercise • With time, your family doctor sick will become responsible for more −− weight gain of two kilograms (4lb) and more of your health concerns. • Every six months in 2 days or more, sometimes with Especially when you are only swelling of the ankles coming to our clinic twice a year. −− shortness of breath while doing normal activities −− irregular or fast heart rate If in doubt, ask the clinic staff, they will spend time with you to answer any −− low blood pressure questions. • Signs of problems following a heart biopsy −− pain in the chest −− shortness of breath −− heart palpitations

• Signs of infection −− temperature above 37.5oC (99oF) for 2 hours in a row −− coughing up sputum −− a dry cough that does not go away −− a burning or stinging sensation when you urinate 34 35 Appendices Catheter Diuretic Fluid A small flexible tube that goes into or out Medicine that helps to remove excess Any food or drink that is liquid at room of the body. fluid from your body. temperature. This includes water, ice Appendix A cubes, milk, juices, soft drinks, hot When put into a vein or artery, it can Echocardiogram drinks, alcohol, soups, gelatin desserts, Terms you might hear be used to give fluids, nutrition, and ‘Echo’ meaning using sound waves, ice cream, popsicles, and liquid nutrition medications; or to take measurements or ‘cardio’ meaning heart, and ‘gram’ supplements (such as Ensure® or Boost®). blood samples. Acute meaning a print out. Can be used to drain fluid from the Hypertension Something that happens early or An echocardiogram (also called an echo) body such as a when one is placed into Sounds like ‘hi-per-ten-shun’. High blood suddenly. is an ultrasound test. High-pitched sound your bladder to remove urine (urinary pressure waves are bounced off different parts Anemia catheter). of the heart, creating pictures. This test Immune System Sounds like ‘an-ee-me-ya’. When you allows us to look at the heart muscle, the Chest Tube A special system of body cells that helps don’t have enough red blood cells in your valves of the heart, and the blood flow A large flexible tube put in through protect your body from infection, disease, body. through the heart. between the ribs into the chest. The end and other foreign matter such as a new Antibiotics sits at the operation site. We use a chest Edema organ. tube to remove fluid from around the Medicines used to treat or control Sounds like ‘eh-dee-ma’. Swelling of operation site. Immunization infections caused by bacteria or other body tissue. Seen around an injury or Sounds like ‘ih-mew-ni-za-shun’. When organisms. wound. Chronic you are given a vaccination to protect Antibody When a person has a disease for a long Can also be from too much fluid in the you from a certain disease. time, or it can get worse over time. Does body. This edema is seen in the feet, Sounds like ‘ant-ee-bod-ee’. A protein Immunosuppressed made by your immune system to fight not go away, but can be treated to lessen ankles, legs, belly, and hands. Fluid can infection and foreign invaders. the impact of the disease. also build up in your lungs, causing you Sounds like ‘ih-mew-no-suh-prest’. When to have trouble breathing. your immune system is weakened or Arteriogram CT Scan blocked from working by medication. CT stands for Computed Tomography Electrocardiogram (ECG) Sounds like ‘arh-t-ear-ee-oh-gram’. A Incision special xray to look at arteries. We inject (may also be called a CAT Scan). A ‘Electro’ meaning electrical activity, a special dye into an artery and watch CT Scan is a special xray test using ‘cardio’ meaning heart, and ‘gram’ The cut made in the skin with a scalpel the dye flood through the arteries in your a computer. The scan detects many meaning a print out. (a very sharp surgical knife). An incision conditions that do not show up on is made as part of a surgery to expose body. An electrocardiogram is a test that checks regular xrays. the organs under the skin. An incision is the electrical activity of the heart. The Biopsy closed with suture, skin staples, or wire. heart’s electrical activity is represented Crossmatch Sutures (commonly called stitches) can Sounds like ‘bye-op-see’. A procedure as lines printed on paper. The test can A blood test that checks to see if your dissolve over time or need to be removed that removes a small amount of tissue show problems with the heart’s natural blood is a good match for the donor’s at a later date. from the heart (or another part of the electrical system. body). The small tissue is examined blood. Extubate closely for signs of rejection, infection, or Diastolic disease. This is when we take the breathing tube The bottom number of blood pressure. out. This is the time when the heart is at rest and filling with blood.

36 37 Terms you might hear, continued Pneumonia Urine, urinary, urinate Appendix B Intravenous (IV) Sounds like ‘new-moan-yah’. Pneumonia It means to ‘pee’. Some people refer to An intravenous is commonly called an IV. is an infection of one or both lungs. this as ‘passing water’. Know your medications Three common causes of the infection are ‘Intra’ meaning into, and ‘venous’ meaning It is good to ask yourself these questions bacterial, virus, and fungi. Ventilator (breathing machine) vein. often: A machine that helps you breathe, We give most medications through the Pre-Transplant either when you are not strong enough FF Do I know the names of each intravenous because they might not be Means before the transplant. to breathe, or when you are not able to medication? able to be given in any other way, or they breathe. The machine is attached to an work faster than pills. Post-Transplant breathing tube. It may also be called ‘life FF Do I know why I am taking each Means after the transplant. support’. medication? Isolation FF Do I know what each of my Some infections are easily spread. Pulmonary Vital Signs medications looks like? Critically ill patients have a greater chance Sounds like ‘pull-mon-air-ee’. Means The measuring of a person’s temperature, of becoming infected with germs and anything to do with the lungs. heart rate, blood pressure, and breathing FF Do I know when to take each put their health at greater risk. For this rate. medication? reason, we may ‘isolate’ patients. This Recipient FF Do I know how to take each involves keeping patients separate from The person receiving the donor organ. Vomit other patients and using extra equipment Sounds like ‘vaw-mit’. Means to throw medication? and clothes (such as an isolation gown, Rejection up. FF Do I know how long I am to take gloves, and maybe a face mask) to protect When your body attacks the transplanted each medication? everyone. organ. If not treated, it can result in Wean FF Do I know what to do if I have any Magnetic Resonance Imaging (MRI) damage to the transplanted organ. When we slowly reduce or take away something such as a medication side effects? A special kind of x-ray, commonly refer Renal FF Do I know which medications have to this as having an ‘MRI’. Uses a large Refers to the kidney. magnet, radio waves, and a computer to special instructions such as taking look inside the body. Creates clear pictures Sepsis on an empty stomach or taking with or images of bones, organs, and soft food? Sepsis is a serious infection in the blood tissues. Does not use xrays or radiation. or body tissues. FF Do I know what to do if I am late Nausea taking a dose, miss a dose, or forget Sternum to take a dose? Sounds like ‘naw-zee-yah’. You feel sick to Your breastbone. your stomach or feel like you are going to FF Do I know how and when to throw up. Systolic re-order my medications? The top number of blood pressure. This Pacemaker If you answered ‘no’ to any of these is the time when the heart is pumping A device that helps the heart to beat questions, ask us to review your blood around the body. regularly. Small electrical leads are medication during your next Transplant threaded into the heart and attached to Trachea Clinic appointment. the heart muscle. When triggered, the Your windpipe. pacemaker sends a small electrical charge into the heart muscle. This triggers the heart to beat. A pacemaker can be either temporary or permanent. 38 39 Appendix C Appendix D My Transplant Team Contact Sheet My Vital Signs Record Normal Values: Pre-Heart Transplant Clinic For emergencies Weight (Wt) ______Blood Pressure (BP) ______8:30 am to 3:30 pm, Monday to Friday Outside of clinic hours Appointments 604-806-8374 and days: Heart Rate (HR) ______Temperature (Temp) Less than 37.5 oCelsius

Temp Temp Post-Heart Transplant Clinic 1. Call BC Transplant 604-877-2240 Date Time Wt HR BP Date Time Wt HR BP 8:30 am to 3:30 pm, Monday to Friday or 1-800-663-6189 / / Appointments 604-806-8374 / / 2. Ask for the ‘Heart Transplant Clinic Nurse Pager 604-252-4843 Cardiologist on call’. / / Outpatient Pharmacy 604-806-8151 - or, if urgent - / / 3. Call 911. / / / / / / Name Phone Email / / Transplant / / clinic / / / / Social worker / / Pharmacist / / / / Psychologist / / / / Dietitian / / / / / / / / / / / / / / / / / / 40 41 Appendix E Check List - Getting ready for the call Check List - Getting ready to go home

I know how to: Get a dental check up  In my wallet: weigh myself  Make an Advance Care Plan ......  BC Services Card / CareCard  take my blood pressure  Cell phone and charger ready ......  Photo Identification ......  take my temperature . . .  Add Small amount of cash check my blood sugar  In last ($15-20) ......  Pack suitcase: suitcase minute do my exercises ......  Toothbrush ......  . . .  . . Arrange for someone to care I know:  Toothpaste  . . .  . . for my pet(s) the signs of rejection  Dentures with case . . . . .  . . .  . . Make a list of people to call, the signs of infection ......  Shaving supplies ......  . . .  . . before I go to the hospital, the names of all my medications, how much I take, Comb or brush ......  . . .  . . with phone numbers . . . . .  when I take them, and why I must take them    I can take my medications correctly with Slippers (with non-slip soles) . . . . . Arrange for a place to stay for little or no help from my nurse ......  Glasses ......  . . .  . . 3 months after surgery    I have my schedule for appointments at Glasses case ...... the Transplant Clinic and blood tests ......  Make my plan for travelling to Hearing aid(s)  . . .  . . the hospital (Transportation how to contact the Transplant Hearing aid case ......  . . .  . . Plan) with the social worker . .  Clinic if I have questions or concerns ......   Spare hearing aid batteries .  . . .  . . ______. . . . .  when to get help Something to read ......  . . .  . . I have: ______. . . . .  Underwear ......  . . .  . . a supply of all my transplant medications . . .   Loose-fitting shirt  . . .  . . ______. . . . . prescriptions for all my other medications . .  Loose-fitting pants ......  . . .  . . ______. . . . .  someone to drive me from the hospital  Socks  . . .  . . someone who can get my prescriptions filled .  Supportive walking or . . . . . someone to stay with me ......  running shoes  . . .  . . a place to stay for the next 3 months ......  Cane or walker ......  . . .  . . I have where I am staying:

Heart Transplant booklet . .   an answering machine or voicemail  . . . . . ______ . . .  . . a blood pressure machine ...... 

______  weigh scales ......  . . . . .

42 43

Pre-Heart Transplant Clinic 8:30 am to 3:30 pm, Monday to Friday Appointments 604-806-8374

Post-Heart Transplant Clinic 8:30 am to 3:30 pm, Monday to Friday Appointments 604-806-8374 Clinic Nurse Pager 604-252-4843

Outpatient Pharmacy 604-806-8151

FOR EMERGENCIES Outside of clinic hours and days:

1. Call BC Transplant 604-877-2240 or 1-800-663-6189 2. Ask for the ‘Heart Transplant Cardiologist on call’. or, if urgent 3. Call 911

Copyright © 2014, St. Paul’s Hospital Heart Transplant Program, Providence Health Care Layout & illustrations - Gary Cody

Thanks to Astellas Pharma Canada, Inc.

NT IE This material has been T

A D reviewed and approved by P patients, families and staff. A E P V P R O

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