Your Lung Transplant

 

We cannot say how long you will be in the hospital after your lung transplant because each patient and each transplant is unique.  You should plan on at least 6 to 7 days.  While you are in the hospital you will be very busy.  You will be going to therapy, walking in the halls, going for chest x-rays and pulmonary function tests.  Your nurses will want to get you out of your bed and chair a number of times daily in order to prevent pneumonia and blood clots.  You may still be on the ventilator and the nurse may have you sit on the side of your bed.  The more time you spend out of bed, while having enough rest periods in between, the better your new lungs will perform.  You will begin to walk in the hallway 3 to 4 times a day.  Most of your day will be out of your bed, in a chair, or walking as you are able to increase your activity.  You will be offered pain medicine regularly.  Do not hesitate to use it if it helps you to keep moving.   Your nurses and transplant coordinators will begin to teach you about the medicines and treatments needed for a successful lung transplant recovery.  You will begin to take your own medicines while you are in the hospital, but you will need to check with your nurse each time you take a medicine.

 

◙ The Intensive Care Unit (ICU)

 

After the transplant, the surgical team will move you from the operating room to the ICU.  You will be asleep.  You will have a breathing tube, several intravenous (IV) lines, and drainage tubes.  These are all placed during the transplant.  These help you to breathe, monitor your vital signs, deliver medicines, and clear fluid from your chest.

 

As you wake up, you will hear the sounds of the ICU - beeps and alarms, bubbling from your chest drainage system, and people talking.  Often people can hear before they open their eyes and move their muscles.  Your nurse will be asking you to open your eyes and move your fingers and toes. 

 

Because patients are often drowsy and confused while waking up, your hands may be gently tied down to protect you from injury.  This will also prevent you from accidentally pulling out your lines and tubes.  This is needed the first night after surgery or until you are fully awake and your breathing tube is taken out.

 

Breathing (Endotracheal) Tube

 

While you are asleep, a breathing tube will be put through your mouth and windpipe.  The ventilator (also called a vent or respirator) is a machine that provides breaths of air through the tube until you are breathing well.  When you wake up, this tube will still be in place.  It will be uncomfortable.  During this time, it is vital to relax and let the ventilator help with your breathing.  You may feel like you are choking or a gagging.  The nurse can do things to make you more comfortable.  Your nurse or respiratory therapists will suction the breathing tube to keep your windpipe clear.  This can feel like your breath is being taken away, but your nurse will be constantly watching your oxygen levels during the suction procedure.  The breathing tube will be removed when your new lungs are ready to function on their own.

 

While the breathing tube is in place, you cannot eat, drink, or talk. The nurse will ask you simple yes or no questions so that you can nod your head to answer.  If you are able to, you can try to write notes with a pen and piece of paper.  Most people right after transplant have tremors in their hands which do not allow them to write notes legibly.  This will subside as the anti-rejection medicine levels decrease and your body gets used to new medicine.  Once the breathing tube is out, your diet will change slowly based on your ability to swallow and to digest food.  Most often, you are on a clear liquid diet for one day, and your diet is advanced as you can handle it.  

 

When the doctor decides you are ready to breathe on your own, the process of weaning will start. Weaning is when the respiratory therapist will turn the ventilator down to its lowest settings and the nurse will assess how well your new lung(s) do.  After a time, most often 30 minutes to 1 hour, lab values will be sent to see how you are doing, breathing almost on your own.  If the blood work returns with adequate values, the breathing tube will be removed.  This is a simple procedure, where the nurse will ask you to take a big breath and cough hard as he or she removes the breathing tube.

 

Breathing Treatments

 

Secretions or phlegm will be harder to cough out after having a transplant.  This is because small hairs in your lungs that help to move phlegm up have had their nerves cut.

 

A small device, called IPV (pulmonary percussive ventilation) will be used to help you remove the phlegm from your lungs.  This will give you small quick breaths that will help loosen the phlegm so you can cough it out.  You will also receive drugs called bronchodilators to help open up your lungs.  The respiratory therapist will be working with you every four hours while you are an ICU patient.

 

After the breathing tube comes out, you will be placed on oxygen – either by a small plastic tube in your nose or a mask.  You will need to work very hard at coughing and deep breathing to keep your lungs clear.  You will be shown how to measure the amount of air you can blow out of your lungs.  A small tool called a spirometer does this.  This test is very helpful in checking your lungs.

 

Arterial Line

 

This is similar to an IV.  It is placed in a wrist or leg artery to constantly measure your blood pressure.  Blood samples can be taken from this site without poking you with a needle.  This will be removed a couple of days after your transplant.

 

Pulmonary Artery Catheter

 

During your transplant, this soft, easy to bend tube is placed into a neck vein.  It goes into your heart.  It measures how well your heart is working and helps us make decisions about medicines and other treatments.  When your heart and lung pressures are stable, this is removed.

 

Chest Tubes

 

These are placed during the transplant to remove extra fluid and air from the chest.  The fluid drains into a collection chamber at the foot of your bed.  You may hear a soft bubbling sound coming from this chamber.  Some patients find this sound soothing.  The tubes remain in place for a number of days after transplant until the drainage stops and your lungs are fully inflated.

 

Bladder Catheter

 

This small tube is put into your bladder to collect urine into a bag.  Measuring the amount of urine you make helps us to know how well your kidneys are working.  Sometimes patients feel the urge to go to the bathroom even though a urinary catheter is draining their bladder.  This is normal.  The catheter will be removed once you are alert and can be helped to the bathroom.

 

Heart Monitor

 

This tells us about your heartbeat and your blood pressure.  It is normal for alarms to sound at times when you are moving around.  Your nurse will be closely watching the monitors both at your bedside and at the nurses’ station.  The nurses are able to interpret the importance of each alarm.

 

Stomach Tube

 

The tube passes through your nose or mouth and into your stomach.  The drugs you receive during transplant cause your bowels to stop working for a short while.  This tube drains your stomach secretions and prevents you from throwing up.  This tube will be removed when the breathing tube is removed.

 

Visiting in the ICU

 

It is important that family members talk with ICU nurses before visiting.  Patients in the ICU receive frequent monitoring and treatment.  The ICU nurse will help address the family’s needs without creating confusion or stress for the patient.  Sick family members (even just a cold) should not visit.  All visitors must wash their hands very well before going into the room. Children are allowed to visit on a case by case basis.  Please talk with the ICU nurse before bringing a child to visit.

 

Flowers in the ICU

 

Transplant patients are not able to have flowers or living plants in their room.  These can carry germs that can cause infections in new transplant patients.  Balloons are a nice alternative to flowers.

 

The next picture shows the ICU as it will appear right after transplant.  This picture is only a model.  Your surgery may be more complex.  If you or your family have any questions, please feel free to ask the staff.

 

 

 

 

 

In the Operating Room

 

Family may stay with you until you are taken to the operating room (OR).  Once you are in the OR, an OR nurse will answer questions, make sure you are comfortable, and explain what is happening.

 

While you are in the OR, there will be ECG (electrocardiogram) patches on your chest, a blood pressure cuff on your arm, and a plastic clip on your finger to check your heartbeat and oxygen levels.  The anesthesiologist will ask you to breathe oxygen through a soft plastic mask and medicines will be given through your IV.  After you are asleep, a breathing tube (endotracheal or ET tube) will be placed in your windpipe to breathe for you.  Other lines and monitors will be added after you are asleep.

 

A Note to Families

 

For most surgeries, patients are away from you for 6-8 hours.  During this time, you may wish to wait in the surgery waiting area.  Feel free to bring along a book or something to do since the time may seem to pass slowly.  If you wish to leave the waiting area, please sign out/in at the nurses’ station.  The cardiothoracic nurses will keep you informed during surgery.  After surgery, the surgeon will talk with you.

 

◙ Medicines

 

Key points to keep in mind

 

• Choose one drug store to fill your prescriptions.  This permits the pharmacist to keep a complete record of your drugs.  It also helps them to better watch for drug interactions and adverse effects.  This will make it easier to ensure that your drugs are in stock and ready for you each month.

 

• Store your drugs at room temperature unless told otherwise by your coordinator.  Keep them out of light and away from moisture.  Do not store medicine in the bathroom.

 

• Keep your drugs in their original bottles and tightly closed.  Keep all drugs away from children and pets.

 

• Do not share your medicine with others.  Do not take anyone else’s medicine.

 

• If you miss a dose of your medicine, take the missed dose as soon as you can.  Then, resume your normal dosing schedule.  If it almost time for the next dose, skip the missed dose and return to your regular schedule.  Never take a double dose or extra doses. 

 

• Be careful not to run out of your drugs.  Refill your prescriptions before you start running too low.  Plan ahead for weekends, holidays, and vacations.

 

• Take all the medicines prescribed by your doctor.  Keep a list of all your medicines with you. 

 

• Take your transplant medicines at the same time each day.  The transplant medicines that are taken twice daily should be taken 12 hours apart.

 

• Talk with your transplant coordinator and your pharmacist if you or your local doctor recommends or prescribes a new drug (prescription, natural product, supplement, vitamin, over-the-counter).  They can ensure there will be no interactions with your transplant drugs and the new drug. 

 

• Wear a medical alert bracelet that lists the transplant drugs you take.  In case of an emergency, this would tell health care workers that you take these drugs.

 

• Never increase or decrease a drug dose without being told to do so.

 

• Your doctor will want to watch how you are doing on your drugs.  It is vital to keep all follow-up visits for check-ups and blood tests.

 

• On the days that you have blood tests scheduled, do not take your medicines until after you have your blood drawn at the lab.  You should go to the lab for the blood draw at about the time that you would take your morning medicines. 

 

• Call 911 if you ever have signs of a life-threatening reaction such as
  • Difficulty breathing.
  • Hives.
  • Swelling of the face, lips, tongue, or throat.

 

• Be sure to bring all of your drugs with you any time you come to the hospital.

 

A medicine class will be held to help you learn more about your medicines.  Also, a pharmacist will meet with you and your support person to help you learn to manage your medicines, including how and when to take them. 

 

Medication Checklist

 

8:00 AM

Dose

12:00Noon

Dose

4:00 PM

Dose

8:00 PM

Dose

 

◙ Vital Signs

 

• How often do I need to check my vital signs?
• When do I need to call my coordinator?

 

Vital signs are key in keeping an eye on your health and new lung(s).  Any changes in your vital signs can alert you and the transplant team to problems that may need to be looked at.  About 4-5 days after your transplant, your nurse will:

• Show you how to do your vital signs.
• Help you practice taking your vital signs.
• Watch you take your vital signs and record them in your log book. 

 

Check your temperature, blood pressure, and pulse rate twice a day.  You may be asked to do this more often if we are making changes to any of your drugs.  Most people do their vital signs before getting out of bed in the morning and before the evening meal or before bed.  You will also need to weigh yourself at the same time each morning.  You will work with your transplant team to set up a plan and a time that you should check your vital signs.  Be sure to write down all of your vital signs in your log book.  Bring this log book to all of your clinic visits.  This is very useful to the transplant team.  It helps them to see how you are doing and to make any needed drug changes.

 

• Blood Pressure

This can be higher in the early morning, which is why you will need to take it before getting up out of bed.  Be sure to look at upward or downward trends.  Call your coordinator if your blood pressure is greater than 150/90 or if you feel dizzy or lightheaded.

 

• Temperature

Call your transplant coordinator if you have a fever above 100° F.  Do not take Tylenol®, ibuprofen, or aspirin before talking to your coordinator.  These drugs lower fevers.  They may mask symptoms of infection or rejection.

 

• Pulse

Take your pulse for one full minute.  You will need to check your pulse both at rest and with activity.

 

• Weight

Weigh yourself after going to the bathroom in the morning.  You will need to learn what your normal weight is.  It is vital to watch for a sudden weight gain.  This may mean you are holding onto fluid.  You will also need to watch for a decrease in your normal weight.  Call if you have a weight gain of more than 3-5 pounds in 1-2 days.

 

◙ Diabetes

 

• What can cause this?
• What will be done if my levels are high?

 

High blood glucose levels can occur if you start to take certain drugs like steroids.  Even though your body still makes insulin, these drugs prevent insulin from working well enough to keep blood glucose levels normal.  Drugs that may raise blood glucose levels are

 

• Cyclosporine (Neoral®)
• Tacrolimus (Prograf®)
• Prednisone or dexamethasone

 

Normal blood glucose levels are 70 – 100 mg/dL when fasting and before meals.  The normal levels after meals are 70 – 140 mg/dL.  Keeping blood glucose levels as normal as possible will promote healing.  Also, there is less chance for problems like rejection and infection.  You might feel better and have more energy when blood glucose levels are normal.

 

Some people have high blood glucose levels only when taking these drugs.  Others may still need to check blood glucose levels after the drugs are stopped.  If you are taking medicines to lower your blood glucose level, it will important for you to have a local resource, like a diabetes teaching nurse or an endocrinologist to help you check these.

 

◙ Basic Lab Values

 

• How often do I need to have lab work drawn?
• Why do I need to have lab work drawn for the rest of my life?
• What are the labs drawn?

 

The immunosuppressive drugs that you take for the rest of your life after transplant require that certain labs be drawn.  These will need to be done on a routine basis right after transplant and at least 4 times a year after that.  These can be drawn at your local clinic or doctor’s office.  Having these labs done is vital to your safety and long term health.  They are done to check for:

• Infection
• Drug side-effects
• High cholesterol
• Lipids
• Other organ damage

 

Complete Blood Count (CBC)

This test checks for infection and anemia.  It is not unheard of for lung transplant recipients to have borderline abnormalities in their white blood count (WBC), hematocrit, and platelet count.

 

Creatinine/BUN

These are test of your kidney function.  This may also be done before x-ray tests that require the injection of intravenous dye.

 

Potassium, Electrolytes, and Magnesium

These are done to ensure that certain drugs have not lowered the body’s store of these needed elements.  If your levels come back low, supplements may be needed.

 

Cholesterol, triglycerides, and lipid panel (LDL)

These tests are done to assess your risk of developing heart disease, stroke, and other circulatory problems.  These values may be increased by your immunosuppressive drugs.  Over time, high levels of these can affect your blood vessels and your transplanted organ.  Eating a heart-healthy diet and getting regular exercise can help to keep these levels in control.  You must fast for 12 hours before these tests are drawn.  Ideal lab values for transplant patients are:

• Cholesterol – less than 200 mg/dl
• Triglycerides – less than 100mg/dl
• LDL (the bad cholesterol) – less than 100mg/dl
• HDL (the good cholesterol) – higher than 40mg/dl

 

Liver function tests: AST, ALT, Bilirubin, alkaline phosphate, LDH

These tests are used to check for drug side effects and other disease processes.  A minor rise in these is common.  Serious problems will cause a rise of at least twice the normal range.

 

CMV DNA Capture

This test is used to see if you have active cytomegalovirus.  This is a virus in the herpes family that is common in transplant patients.  This test is done any time we think you may have the virus in your system.

 

Prostate Specific Antigen (PSA)

This is used to detect prostate cancer.  It is done on males as part of their annual testing.  Many conditions can cause a rise in this level.  If a high level is detected we will advise you how to follow-up on the results.

 

◙ Biopsy Results

 

• What is a biopsy?
• Why are biopsies done?
• When will I have a biopsy?
• What happens if a biopsy shows rejection?

 

Biopsies are done at regularly scheduled intervals after your transplant:

            1 week

            6 weeks

            3, 6, 9, and 12 months

 

The transplant team will decide on your bronchoscopy/biopsy schedule.  More biopsies may be required if rejection is suspected.

 

The biopsy procedure is done using a tiny forceps passed through a channel of the bronchoscope into your lungs.  You will be told to breathe out slowly as the pulmonologist obtains a small sample of lung tissue.  This step is most often repeated until a number of tissue samples have been obtained for analysis.  Sometimes, real-time chest x-rays (fluoroscopy) are used during the bronchoscopy to help direct the forceps to the desired site in the lung.  Based on these findings your biopsy is graded from 0 to 4.  Biopsy results are not impacted by the person doing the test or the technique used.  Pathologists use an internationally recognized standard for evaluating and grading the biopsy.  Test results are available the next afternoon.

 

A biopsy of grade 2 or higher most often requires treatment.  This may include high dose (IV) steroid therapy in the hospital.  You may be treated at home with a high dose of oral prednisone and/or an increase in your other immunosuppression medicines.  Another biopsy will be done 4-6 weeks later to see if the treatment worked.  

 

◙ Rejection

 

• What is rejection?
• When can this occur?
• What are the signs of rejection?
• What should I do if I have signs of rejection?

 

The risk of rejection is greatest the first 6 – 12 months after transplant.  It is common to have a rejection.  This is the body’s normal immune response to “foreign” tissue. 

 

Your immune system is a special group of cells that protect your body from foreign invaders. When you have an infection, these cells search out and destroy the germs.  Unfortunately, these cells view your transplanted lung as foreign.  This is called rejection.  Without immunopressive drugs these cells would harm your transplanted organ.  You need some immune system function to stay healthy.  These drugs do not fully eliminate your immune system.

 

There are two types of rejection: 

• Acute
• Chronic 

 

Chronic rejection most often happens more than one year after transplant.  We watch for signs of chronic rejection.

 

Acute rejection is the most common type of rejection.  This occurs at random times after transplant.  It is found and confirmed by a bronchoscopy.

 

Most people with lung transplants have 1 to 2 rejection episodes.  You are most vulnerable to this in the first three months after transplant.  The chances of rejection begin to drop after the first three months and then decrease sharply after that.  Despite this, you are always at risk for rejection.  The best thing you can do to prevent this is to take your medicines exactly as ordered.

 

Rejection may cause your lung(s) to work less efficiently.  This can produce symptoms.  These are often the same symptoms of advanced lung disease that you had before the transplant.  With the use of medicines we can reduce the immune system activity and reverse the rejection.  These drugs have side effects that can cause new health concerns.  High blood pressure, high cholesterol, diabetes, and osteoporosis can occur.  Most of these side effects can be treated.  Diet, exercise, and how well you follow your treatment plan all affect how you will be able to manage the side effects. 

 

It is vital to be aware of the signs and symptoms of rejection. Call your transplant coordinator right away if you have

• Shortness of breath
• Feeling more tired than usual
• 10% decrease in spirometry over 2 days
• Increase coughing
• Change in sputum color to yellow or green
• Sudden rise or drop in blood pressure
• Lightheaded or dizzy feeling
• Low-grade fever (100° F) for 2 days

 

Do not ignore these symptoms.  Call your transplant coordinator to discuss your concerns.  Timely diagnosis and treatment of rejection is critical in protecting your transplanted lung(s).

 

◙ Pulmonary Rehabilitation

 

• Why do I need this?
• What will this consist of?

 

The goal of pulmonary rehabilitation, after your lung transplant, is to make sure you do not become weak.  A quick start is vital!  You will begin exercises very soon after transplant.  This will

• Increase your strength.
• Reduce your risk of pneumonia.
• Reduce your risk of developing blood clots in your legs.
• Shorten your length of stay in the hospital. 

 

A member of the rehab team will visit you the day after your transplant.  Your sessions will begin by the rehab staff checking your blood pressure while you are seated and standing.  Your heart rate and heart rhythm will be watched throughout the whole session.  You will start by taking short walks.  These will increase in time and distance as you get stronger.  Day 2 through the day of discharge may also include seated biking or treadmill walking.  Our goal is to have you perform upwards of 20 minutes of activity each day before you go home.  Keep in mind, each person will recover at a different rate.  Your plan will be made to suit you and your specific needs.

 

◙ Activity

 

• Why is this important?
• What will being active help me to do?

 

Over time, most patients are able to resume their normal routines.  It will take some time to gain strength and endurance.  Keeping up with an exercise routine once you’ve finished rehab is the best way to manage your weight and improve your well-being.

 

◙ Incision Care

 

• What will I need to do to care for my incision when I go home?
• What do I need to do to protect my incision?

 

Your rejection drugs can cause wounds or sores to take longer to heal.  Your incision may take 1-2 months to fully heal.  The staples may stay in place for up to three weeks.  After the staples are taken out, paper tape strips (steri-strips) are put on your wound for extra support. 

 

It is OK to shower once your staples are taken out.  Use a washcloth with mild soap and water to gently clean the incision.  Do not rub over the area.  Do not put any creams, ointments, or powders on the site.  You do not need to cover your incision unless it is draining. 

 

As your wound heals, you may notice some redness, soreness, numbness, and itching.  This is normal.  Call your coordinator for any increase in swelling, tenderness, redness, or drainage. These are signs of infection.

 

Your medicines make you more at risk for sunburn and skin cancer.  Avoid the sun and always protect your skin with sunscreen of at least SPF 30.

 

◙ Infection

 

• When and who should I call if I think I have an infection?
• What can I do to prevent infection?
• When do I have to wear a mask? 

 

The anti-rejection drugs you will take after transplant place you at risk for infection.  You will need to watch for signs and symptoms of infection.  These would include

 

• Redness
• Increased cough
• Decrease in spirometry
• Swelling
• Pain
• Fever – Please call with any temperature greater than 100° F.  Do not take any drugs for fever unless told to by your coordinator or doctor.
• Fatigue
• Odd colored drainage (For example – yellow or green sputum or sinus secretions, cloudy urine, cloudy wound drainage)
• Rash  There are four types of rashes to watch for:
  • Steroid rash – This looks like pimples or acne.  Common on the face, chest, and back where skin is more likely to be oily.  Treatment is good hygiene and may include medicine for acne.
  • Yeast infection – This is a red raised rash with a burning and itching feeling.  It is common in the groin area (jock itch), on the feet (athlete’s foot), under the breast, in the under arm region, or between any folds of skin.  Antifungal cream or powder is the common treatment.  You can prevent this with good hygiene and by wearing loose breathable clothing.
  • Shingles – This looks like a fluid filled raised rash.  It will be clustered in places such as the shoulder, face, back, or leg.  This is caused by a herpes virus and can be very painful.  It is treated and prevented with antiviral medicines such as acyclovir or valacyclovir.  This is caused by the same virus as chicken pox.  You should stay away from anyone who has active chicken pox.
  • Hives – This is an allergic reaction.  With this you will see large raised lumps.  These can be very itchy.  Treatment is based on the cause and how severe the reaction.

 

You are always at risk for infection. There are things you can do to help prevent this. 

 

• Good hygiene - Wash your hands after using rest rooms, before you eat, before you put on make-up or insert contacts, before and during food preparation.  Using anti-bacterial hand gel is also a good choice.  If you are not in a long-term monogamous relationship, you should always use latex condoms during sexual contact.  The condoms will reduce your exposure to CMV, hepatitis B and C, HIV, HSV and other sexually transmitted diseases.
• Wear a Mask – You need to wear a spore filter mask when:
  • You are in hospitals, clinics and laboratory areas.  These places are often under construction and they have other ill patients.  You may have your mask off if you are in a private room and the room is hepa-filtered.
  • You are working in dusty environments or working with soil or mulch. Gardening, yard work, farming or working in a barn, construction type work, cleaning very dusty rooms such as basements, attics, or garages all require you to wear a mask. 
  • You are flying.  Airplanes use re-circulated air during flights.  Anyone on the plane who is ill may be passing it on through the air.
  • You are in a large crowd in poorly ventilated areas.  You do not need to wear a mask if there is good air circulation—such as at concerts, church, movies, or outdoor activities.
• Gloves - Wear proper work gloves when working with dirty engines, in barns, in soil, mulch, or doing yard work.  If you fish, use a gripper glove.  This will prevent you from having direct contact with the slime and scales.  These can carry bacteria.
• Plants and flowers - Fresh cut bouquets can form mold in the standing water.  You can enjoy being in or around flower gardens.  It is okay to have potted plants at home.  If they need re-potting or you are bringing in new plants, please have someone else pot them. This should be done outside with good potting soil before bringing them inside your home.  New plants from the florist or garden center are mixed with vermiculite. This holds lots of water and the plants can have higher amounts of mold.  This also holds true for seasonal plants such as Easter lilies and poinsettias.  If you want to have these live plants you will need to have them repotted.  We suggest that you also use an insect repellant.
• Pets:    Many families enjoy having pets.  You should follow these guidelines.
  • Have all pets seen by a vet before bringing them into your home.
  • Do not change litter boxes or bird cages.  The waste can increase risk of infections.
  • Make sure your pets have regular check ups and get all of their vaccines.
  • Wash your hands after petting or playing with any pet. 
• Travel Safety - Travel to developing or third-world countries poses a major risk for you.  This is very true during times when you are at your highest level of immunosuppression.  You should discuss your travel plans with your doctor at least 2 months before you plan to leave.  You must follow your standard safety precautions while you travel.  It is a good idea to get the travel advisory for your country from the CDC website www.cdc.gov.  You should make sure that your vaccinations are up-to-date.  Follow the guidelines you have been given for these.  Keep in mind, you should not have live virus vaccines.  Routine vaccinations may not always be effective.
• Water Safety – Transplant patients should not drink water directly from lakes or rivers.  There is a risk of cryptosporidiosis, giardiasis, and bacterial pathogens.  Infection might also occur from swallowing water while swimming in lakes, rivers or pools, or going on water rides at amusement parks.

 

CMV

 

One type of infection that may occur is CMV (Cytomegalovirus).  This is a type of herpes virus that is common in 50-80% of the population.  It can occur in the first 3-6 months after a transplant.  It is often found in the lungs.  It can also be found in the eyes, liver, and stomach.  CMV is treated with an antiviral drug for 12 weeks.  Many patients will receive a medicine to prevent CMV infection.  This medicine can also be used at higher doses if a transplant patient gets CMV infection.

 

Thrush

 

An infection that can occur after transplant is called oral candidiasis (thrush).  This is a fungus infection.  It causes white lesions on the tongue and mouth.  Your throat may also be red and sore. You may find that things taste differently.  You are taking clotrimazole-troche to try to prevent this infection.  If thrush does occur, you may need to change to another antifungal medicine such as nystatin or fluconazole.  Proper mouth care may help to prevent this.

 

Vaccines:  Annual influenza vaccine is recommended for all transplant patients and their household contacts, including children.  Other vaccines may be recommended by your transplant team. 

 

◙ Medical Alert Bracelet

 

• Why is this needed?
• Where do I get one?
• What information should be on this?

 

You should buy some type of medical identification jewelry.  This is needed in case you are found during a medical emergency and are not able to talk.  This will ensure that UWHC can be called right away to guide those caring for you.

 

Suggested Wording (5 line, 20 character per line limit):

 

S/P Lung Transplant

UWHC 608-265-5658

Ask for the

Lung Transplant

Coordinator

 

American Medical Identifications

• 1-800-363-5985 or www.americanmedical-id.com
• $21.95 – $189.95
• Access to your complete medical information 24 hrs/day
• Bracelets and necklaces

 

Lauren’s Hope

• 1-800-360-8680 or www.laurenshope.com
• $39.95+
• Available in sterling silver with crystals or beads

 

If you choose to use the Medic Alert brand, please note that they will not engrave our direct phone number on the item.  Rather, they will engrave their phone number and charge a yearly fee to keep your information and the hospital’s phone number on file.

 

Other options may be available at your local pharmacy.

 

◙ Appointment with Local Medical Doctor

 

• When do I need to see my local doctor after transplant?
• What do I need to call my local doctor for after transplant?

 

You must have a local doctor to follow your care.  Plan to see your local MD shortly after your transplant.  We rely on the local doctor to address routine health issues such as blood pressure, diabetes, and minor infections.  We’ll work closely with your doctor to give you the best care.  The Transplant Team will manage your transplant medicines and address any issues about your lung.  Before starting any new medicines, it is important for you to contact your lung transplant coordinator.  You will need to follow the advice of your local doctor and the transplant team in regards to diet, exercise, and other health needs.  We want you to live a normal, healthy life after transplant.

 

◙ Commitment to follow-up care

 

• What things do I need to do after my transplant?
• What support will I need from family and friends to meet these commitments?

 

Keeping the commitment

 

For a transplant to be a success, you need to commit to:

• Follow the treatment plan prescribed by your doctors.
• Call your nurse transplant coordinator about any problems and/or symptoms.
• Take all prescription drugs as prescribed.
• Follow the diet and exercise plan advised by your doctor.
• Keep your appointments, clinic visits, lab draws, and biopsies.
• Do not abuse your body by smoking, drinking, or using non-prescribed medicines and herbals.

 

You will need close follow up especially during the first few months after transplant.  You will need routine transplant follow up for the rest of your life.

 

 

 

 

Important Phone Numbers

 

Lung Transplant Office                                                  608.265.5658

Toll-free                                                                      888.522.2501

(Monday through Friday, 8:00am-4:30pm)

Fax                                                                             608.263.0597

 

G7/105 Transplant Clinic                                               608.262.5420

Nursing Staff-B4/5                                                        608.263.8720

 

Lung Transplant Social Worker                                       608.890.9209

Patient Housing                                                             608.263.0315

Financial Advisor                                                           608.263.1505

 

In a medical EMERGENCY, please proceed to the nearest emergency room or call 911. Always have the ER doctor call the coordinator on call.

 

608.262.0486 is the number for the University Hospital paging operator. When you call this number be sure to:

• Call this number after 4:30pm and on weekends and holidays for emergencies only.
• Tell the operator you are a lung transplant patient.
• Ask for the cardio-pulmonary transplant coordinator on call.
• Give your name and phone number with the area code.

 

If you do not hear from someone in 20 minutes, call back.

 

To reach your coordinator for questions, prescription refills or other problems, please call 608.265.5658 and ask for your coordinator by name Monday through Friday, 8am-4:30om. Please reserve the “after business hours” calls for urgent calls only. Prescriptions will only be filled during business hours, so please watch your medicines carefully.

 

 

The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.

Last Updated: 12/16/2011

Copyright © 12/16/2011 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. UWH #6686

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