Printable Liver Transplant Patient Guide - Henry Ford Health System

Your guide
to Transplant
and Recovery
Henry Ford Transplant Institute
CLINIC NUMBER
(313) 916-2911

Henry Ford Transplant Institute is one
of only two comprehensive multi-organ
transplant centers in Michigan. The
institute is responsible for many of the
first ever transplant procedures. Our
dedicated and experienced team ensures
patients receive an exceptional level of
knowledgeable support before, during,
and after transplantation.
Our mission is to improve and extend
life through excellence in the science
and the art of transplantation, one
patient at a time.
Congratulations on your new organ! Now that you have had a
transplant and are on the road to a full recovery, YOU are the
most important person on the transplant team. Your transplant
team will continue to care for you, but you are the star player
on the team. Your role is vital for a successful transplant.
Henry Ford Transplant Institute wants you to know that you
are not alone, we are always here to answer any questions and
assist you however possible.
Once you are discharged from the hospital your transplant
coordinator will serve as your main contact. He/she will have
contact with all the members of your transplant team, and can
assist you in almost all of your transplant needs.
Coordinator: ______________________________________
Phone: __________________________________________
Clinic Appointment: ________________________________
Other Appointment: ________________________________
Henry Ford HospitalTransplant Institute
2799 W. Grand Blvd.
Detroit, MI 48202
(313) 916-2911
24 hour hotline
1-800-999-4340
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This booklet is intended to prepare you for your journey to full
recovery and a healthy life after transplant. This booklet will assist
in making you knowledgeable about life with your new organ by
discussing:
What to expect after surgery……………………………….........................pg. 2
The Possibility of Infection & Rejection.…..……………….............pg. 3 - 6
• Types of infection
• Signs and symptoms of infection and/or rejection
• Treatment of infection and/or rejection
Medications……………………………………………….................................pg. 7, 8
Nutrition………………….……………………………….......................................pg. 9
Life after Transplant………………………………………........................pg. 10, 11
Summary ………………………………………………........................................pg. 17
Medical Terminology Glossary …………………………................…pg. 18, 19
At the time you are discharged you should be able to:
• Recognize and correctly identify your medications
• Be able to identify the schedule of each medication
• Be able to describe the signs/symptoms of infection or
rejection
• Verbalize when and how to contact your transplant team
• Identify proper health hygiene to care for your new organ
• Verbalize your clinic appointment date and time
• Be able to record your temperature, blood pressure and
pulse at home.
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What to expect after Surgery
How long will I be in the hospital?
Immediately following surgery you will be taken to the Intensive
Care Unit (ICU) for close monitoring. Once you are stable, you will
be moved to the transplant unit for the remainder of your stay.
What should I expect while I am recovering?
You will not be able to eat until your bowel function returns to
normal. Bowel function is slowed or stopped during the surgery, it
is important for bowel function to be normal for proper digestion.
One of the goals after transplantation is that your life returns to
normal as soon as safely possible. Moving and ambulating is an
important part of everyday life that will assist in your recovery.
Laying in bed poses a risk for developing blood clots. To reduce the
risk of developing blood clots the staff may apply a compressive
device to promote circulation. Also, your transplant team will
encourage and assist you in getting out of bed and ambulating in
the halls.
Developing pneumonia is another possible complication that could
occur as a result of staying in bed. To prevent pneumonia from
forming the nurses will assist you with deep breathing techniques,
coughing, and turning if you are unable to move.
The nurses and staff will assess your pain, and treat it appropriately
according to your doctor’s orders.
In addition to the nurses, the transplant pharmacist will also
visit you during your hospital stay to familiarize you with your
medications.
Taking your medications consistently is a vital
part in the success of your transplant
The possibility of Infection and/or Rejection
Rejection
Your immune system is designed to seek out and destroy any foreign
object that it finds in your body, such as viruses, bacteria and
even your new organ. The process of trying to destroy your transplanted
organ is called rejection. Rejection is a normal reaction between
your body’s immune system and your new organ. To protect
your new organ your immune system will need to be suppressed.
This is accomplished with “anti-rejection” medications. Your responsibility
in protecting your new organ from being rejected is to:
• Know all of your medications and take them consistently.
• Get your labs checked as instructed by the transplant team
• Avoid alcohol, illegal drugs, herbal supplements, and
alternative medicines
• Maintain good communication with your transplant team
The nurses will draw blood everyday so that your transplant team
can evaluate your status.
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Signs and symptoms of Rejection
One of the first signs that rejection is occurring is an increase in
liver function tests. Liver function tests are blood tests that will be
closely monitored everyday of your stay in the hospital and then
followed closely once you have been discharged.
• Fever of 100 degrees F or higher
• Flu-like symptoms such as chills, fatigue, nausea,
headaches, dizziness, body aches, vomiting, diarrhea,
• Abdominal pain or tenderness
• Dark urine
• Confusion
• Increased Fatigue
• Abdominal Swelling
• Jaundice
• Light clay colored stools
Signs of infection:
• Fever of 100 degrees or more
• Sore throat, or mouth sores
• Productive or persistent cough
• Flu-like symptoms: nausea, vomiting, diarrhea or headaches
• Pain and/or frequent urination
• Redness or tenderness at your incision site
You should call your doctor or transplant coordinator if any of
these symptoms occur.
Types of infection
Viral infections: A viral infection is caused by a live organism,
and requires a live host to survive. Once inside the body viruses
have the capability to replicate itself inside of the body. People who
are immunosuppressed are vulnerable to viral infections
Infection
As discussed in the previous section, anti-rejection medications
alter your natural defense system. This is accomplished is by
suppressing the activity of the white blood cells. White blood cells
are part of the body’s immune system that ward off foreign tissue
and fight off infections. Consequentially, by suppressing white
blood cell activity the risk for acquiring an infection increases. You
should notify the transplant team immediately if you experience
any signs of infection.
CMV
The most common viral infection among transplant patients is
cytomegalovirus (CMV). If diagnosed with this virus treatment may
include hospitalization, and receiving intravenous medications.
Fungal Infections
Transplant patients are vulnerable to fungal infections. The most
common fungal infection is Candida (yeast) infections. This
fungus can cause a wide variety of infections in the body. Fungal
infections most commonly start in the mouth or throat. Candida
in the mouth is referred to as thrush. It can cause white, patchy
lesions, pain, tenderness, difficulty swallowing, and a white film
over the tongue. Other places Candida can be found are in the
surgical wound, eyes, lungs, vaginal or urinary tract. Candida can
be severe if it reaches the blood stream. Treatment may include
hospitalization and IV medications.
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Bacterial Infections
Infections caused by bacteria are usually found in the surgical
wound. The most common way that wounds become contaminated
is by improper handling of the wound, and poor hand/health
hygiene. To avoid getting an infection you should:
• Wash your hands every time you use the bathroom, handle
food, and are in contact with frequently accessed public
places e.g., handrails, doorknobs, elevator buttons,
computers, public phones, etc.
• Do not share personal items i.g. eating utensils, razors,
toothbrushes, etc.
• Wear gloves if you will be working in the yard
• Do not handle your pets litter boxes, bird cages, etc. Exotic
pets should be avoided altogether
• Avoid large crowds
• Practice safe sex
• Educate your family and loved ones about following these
same practices.
Medications
Taking your medications is the single most important thing you can
do to maintain your new organ. You should NEVER stop taking your
transplant medications, or make any changes unless prescribed by your
transplant team. Your body recognizes your new organ as a foreign
object, and therefore naturally tries to attack it. The purpose of the
anti-rejection medications is to suppress the attack on the new organ.
The transplant pharmacist will meet with you to discuss your home
medication schedule before you are discharged from the hospital. Do
not take any over the counter medications or herbal medicines
(including green tea) without consulting your transplant team.
This could cause a potentially dangerous interaction.
The following medications are commonly prescribed medications
intended to prevent and the reduce the risk for rejection. They
are called immunosuppression or anti-rejection drugs
• Prograf (Tacrolimus)
• Cellcept (Mycophenolate Mofetil)
• Steroids (Prednisone or Medrol)
• Rapamune (Rapamycin or Sirolimus)
• Myfortic (Mycophenolic acid)
• Neoral (Cyclosporin)
Your transplant team will determine the best combination of
medications for you. Your transplant team may also prescribe other
medications to supplement the anti-rejection medications. Please
refer to the medication glossary at the end of this brochure for
further information about these medications.
These tips can help you to maintain your medication schedule.
• Use a medication scheduler (such as the one given to you by
the pharmacist)
• Coordinate your medications with other scheduled activities
such as dinner
• Use a pill dispenser to organize your pills
• Order your pills one week in advance so that you do not run out.
It is possible to have a reaction from your anti-rejection
medications. These side effects will be discussed by your
transplant pharmacist. Some side effects to be aware of are:
• Possible weight gain from steroids
• Heartburn that can be mild to moderate
• Muscle weakness (this will decrease as your steroid dose
decreases)
• Changes in behavior like trouble sleeping, depression,
• Tremors and/or headaches
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• Diarrhea, nausea, vomiting, or stomach cramps.
• Sensitivity to sun
• Acne
• Mouth ulcers (sores inside the mouth)
• White blood cell count too low.
• Dizziness
If you experience any of these side effects please notify the
transplant team and/or go to your local emergency room. Be
sure to inform your primary care provider of the transplant
medications that you are taking as well as keep the transplant
team current on your complete medication list.
Consult with the transplant team before taking over the counter
medications as they may interfere with the absorption or
breakdown of your immunosuppression medications. Some over the
counter medications should never be taken after transplant. Please
refer to the table below for a list of medications that are not safe.
Note: The medications listed below are NOT a complete list, it is just
to be used a guideline.
Pain relievers not safe after transplant:
• Advil
• Ibuprofen
• Aleve
• Midol
• Anaprox
• Nuprin
• Excedrin Ib
• Motrin IB
Nutrition
ORGAN TRANSPLANT NUTRITION TIPS:
Healthy eating means watching your Portion Size, Meal Timing,
AVOIDING: fried and processed foods (high in fat and sodium),
and concentrated sweets.
Remember MODERATION!
• NO Buffets/Salad Bars – Think Food Safety 1st!
NO SMOKING! You are at a higher risk for food poisoning
or colds from second hand smoke. Remember to WASH
your Hands, Cutting Boards, Counters and Utensils
often when preparing food, store food carefully, and thaw
meat in the fridge.
The following Foods should NEVER be eaten:
• Grapefruit, Grapefruit Juice, Squirt, Pomegranate,
Pomegranate Juice, and Seville oranges (marmalade).
Remember to check labels on juice for these items.
• Unpasteurized milk, cheese, cider or juices. NO raw milk
or cheese.
• Fresh sprouts (such as bean or alfalfa sprouts) – these can
be easily contaminated.
• Spoiled or moldy foods – check out expiration dates.
• No: raw, rare or undercooked meat, fish, or runny eggs,
Cough & Cold medicines not safe after transplant:
• Afrin tablets
• Comtrex Products
• Alka Seltzer Plus • Dayquil
• Benedryl allergy • Dimetapp
and cold or sinus • Drixoral
• Chlor-Trimeton Allergy • Neo-synephrine
• Decongestant
• Pamprin IB
• Claritin D
• Sudafed products
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INSTEAD:
> Heat cold cuts, hot dogs, deli meats and sausages
> Cook Seafood to 145°F
> Cook Roasts, Steaks, Ground Beef and Egg dishes
to 160°
> Cook Chicken to 170°
• Natural Products/Herbs to AVOID: Astragalus,
Evening Primrose oil, Echinacea, Ginseng, Garlic,
St. Johns Wort, Bilberry, Cayenne, Feverfew,
Ginko, Ginger, and Reishi.
• Depending on your Blood Level and Medication changes,
you may need to LIMIT the amount of POTASSIUM
rich foods you eat for awhile.
• Prograf and Prednisone can raise blood sugars which will
slow down your healing – HEALTHY meal choices
are helpful in limiting elevated blood sugars.
PLEASE ASK TO SEE THE DIETITIAN IF QUESTIONS!
Life after transplant
Wound care
You may be discharged home with sutures, staples, or steri stripes in
your abdominal incision. Staples/sutures are removed 3-4 weeks after
surgery. Steri strips are paper like strips placed over the incision that
will come off independently. If the edges of the steri strips lift, and
become uncomfortable you may snip the part that is lifting with a
clean pair of scissors, but do pull up on any part that is still stuck on
the skin. After showering pat these strips dry, do not rub them. Also,
avoid wearing clothes that will irritate the incision. Your incision may
be slightly red at the site, that is normal. If the redness spreads, the
incision becomes more than mildly tender to the touch, or there is a
pus like discharge call your transplant team.
Activity
As a newly transplanted patient the goal is for you to resume a
lifestyle that is as close to normal possible without compromising
your healing and health. Once you return home you should
implement exercise into your daily routine. Walking is an excellent
way to get in some exercise. You should avoid doing sit-ups, push
ups, or any other activity that involves using your core muscles or
muscles around the site of your incision. Also you should not lift
anything over 10lbs when working out or even in everyday activity.
You are able to resume sexual activity as soon as you feel
comfortable. You should be aware that some of the medications
may have a side effect resulting in the lack of interest in sex. If
you have any issues or concerns about sex your should talk to your
transplant coordinator. You should take care to only have protected
sex, always use a condom and contraceptive birth control. If you
are planning on becoming pregnant please consult the transplant
team so that your and your unborn child’s risk can be assessed
and discussed. If you think you may already be pregnant is VERY
IMPORTANT to contact your coordinator immediately.
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Your transplant team will inform you of when it is ok to return to work.
DO NOT SMOKE or DO NOT DRINK ALCOHOL. If smoking or drinking
are areas of concern for you please consult with your coordinator.
You should not travel for at least three months. Traveling may be unsafe.
Before you plan a trip you should consult with your transplant team.
Because of your immunosuppressant medications you are at an
increased risk for skin cancer. You must use sunscreen that is at
least 30 SPF daily. If you will be outside in direct sunlight you
should protect yourself by wearing a large brim hat. You should see
dermatologist twice per year for screenings.
Dealing with emotions after transplant
Getting a new organ and a second chance at life is a joyous cause.
However, recovery is a slow process and may be stressful at times.
Sometimes there may be negative feelings such as anger, depression,
guilt, frustration, dissatisfaction, or anxiety. Its possible that you will
not have any of these feelings, but if you do The Henry Ford Transplant
Institute wants you to know you are not alone. Please inform your
coordinator about any negative feelings you may have so that we may
assess your needs and offer help. You are not the only person affected
during the recovery period. Your family members are also affected. It
is important that you establish a good support system and keep your
family informed about changes and emotions that you are experiencing.
The following tips may help you get through some troubling
times during your recovery.
• Be active; exercise regularly, participate in safe social activities.
• Get enough rest
• Maintain a healthy diet
• Get involved in a transplant support group (please pg for some
support suggestions)
Medication Glossary
You will be prescribed medications according to your
specific transplant needs. You must take medications
exactly as prescribed by your transplant team.
ANTI-REJECTION MEDICATIONS
Prograf (Tacrolimus or FK506)
Helps to prevent rejection. If taking prograf two times per day, IT
MUST BE TAKEN 12 HOURS APART. Prograf should be held prior to
getting labs drawn. If you are coming in for a lab draw it is ok to
take your nighttime dose, but do not take your morning dose
the day of your lab appointment. Bring your medications with you
and take them after your blood is drawn.
Possible side effects: increased creatinine, tremors, thinning of hair,
diarrhea, elevated potassium or blood sugar.
Precaution: Remember to keep all clinic and lab visits so that your
prograf blood levels can be monitored. If you think you may be pregnant,
or are breast feeding consult your transplant team immediately.
Cellcept (Mycophenolate Mofetil)
This drug is usually given in either 250 mg or 500 mg, twice a day.
This medication must be taken every 12 hours consistently. Side
effects with this medication are common.
Possible side effects: Diarrhea, nausea, vomiting, decreased white
blood cell count, and bruising.
Precautions: If you experience any of these side effects treatment
may include medication changes, and/or hospitalization.
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Myfortic (Mycophenolic acid)
In cases where the side effects of Cellcept are intolerable, Myfortic
is given. It should be taken just as Cellcept is taken; usually twice
each day and 12 hrs apart.
Possible Side Effects: constipation, nausea
Precautions: A stool softener may be prescribed. Myfortic is best
absorbed on an empty stomach.
Steroids
There are several brands of steroids. Medrol and Prednisone are
the two brands commonly prescribed for transplant. The steroids
that your transplant team prescribes for you will aid in the antirejection
process. The dose will be high in the beginning, and will
taper down. It is possible that you may be able to stop taking
them all together, but you should NEVER stop taking them unless
directed to do so by your transplant team.
Possible side effects: Increased appetite, muscle weakness, calcium
loss in bones, elevated blood sugar levels, delayed wound healing,
acne, mood swings, anxiety, weight gain.
Precautions: Your transplant team may monitor your blood sugar
levels while in the hospital, and while at home.
Rapamune (Sirolimus, Rapamycin)
Usually prescribed to be taken once a day. It works by preventing your
white blood cells from increasing and possibly attacking your new
organ. If you are scheduled for a lab blood draw then you should not
take your rapamune until after your blood draw. Take your medication
with you so that you can take it after your labs are drawn.
Possible side effects: Low blood cell counts, mouth sores, skin rash
or acne, and low potassium levels.
Cyclosporin
This medication aids in preventing rejection by selectively
suppressing the T-Cells. It is usually prescribed twice per day, and
should be taken 12 hours apart.
Possible side effects: Elevated blood pressure, excessive hair
growth, swelling of the gums, increased potassium, increased
cholesterol, tremors.
Precautions: Do not eat or drink grapefruit or grapefruit products.
Do not take any herbal medications including green tea. Check
your blood pressure regularly, maintain good dental hygiene and
see your dentist routinely.
ANTIBACTERIAL MEDICATIONS
Bactrim (Trimethoprim/sulfamethoxazole)
This medication is used to prevent and treat pneumocystis carinii
pneumonia and other bacterial infections such as urinary tract
infections. It is usually prescribed once per day for about three
months after transplant.
Possible side effects: Nausea, rash, vomiting, itching, poor
appetite, and increased risk of sunburn.
Precautions: You should not take this medication if you are allergic to
Sulfa. Sun block should be applied daily to prevent becoming sunburned.
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ANTIVIRAL MEDICATIONS
Valcyte (Valganciclovir) or Acyclovir
This medication is given to prevent or treat infections that are
caused by a virus called cytomegalovirus (CMV). This virus is present
in about 50% of Americans, although most people are unaware
of it. This medication is usually given twice each day, and is to be
taken 12 hours apart.
Possible side effects: Decreased platelet count, resulting in
bruising. Decreased red and white blood cell count. Nausea,
vomiting, diarrhea, and headache.
Precautions: Do not break this pill, it must be taken whole.
ANTIFUNGAL MEDICATIONS
Medications such as Diflucan, Nystatin, and Clotrimazole are
antifungal medications used to treat or prevent fungal infections.
Please take these medications as directed by your transplant team.
OTHER MEDICATIONS
Protonix, Prevacid, Nexium, Prilosec- These medications
are used to prevent and/or treat stomach ulcers
Actigall- used to dissolve gallstones, and to keep the bile from
becoming too thick and causing an obstruction.
*It may be necessary for you to be on an electrolyte replacement
medication. Your transplant pharmacist will help you to understand
electrolyte replacement medications.
SUMMARY
As you begin your journey to a full recovery, and a normal life it
is absolutely vital that your remember to take your medications
EVERYDAY and to take them on time. Also, remember to keep in close
communication with your transplant team. Communication is key!
At the time you are discharged you should be able to:
• Recognize and correctly identify your medications
• Be able to identify the schedule of each medication
• Be able to describe the signs/symptoms of infection/rejection
• Verbalize when and how to contact your transplant team
• Identify proper health hygiene to care for your new organ
• Verbalize your clinic appointment date and time
• Be able to record your temperature, blood pressure and
pulse at home.
At the time you are discharged you should be able to easily
identify these sign and symptoms of infection and/or rejection:
• Fever of 100 F or more
• Increased wound pain or drainage from your wound
• Fluid retention- weight gain of more than 3 lbs in a 24
hour period, swelling of the ankles or hands or puffiness
around the eyes.
• Decreased urinary output
• Change in color of urine
• Foul smelling urine
• Painful urination
• Increased frequency of urine
• Nausea, vomiting, or diarrhea for more than 24 hours
• Blood present in your urine or stool
• Blood pressure changes
If any of these symptoms occur you should contact
your transplant team immediately.
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SUPPORT
The Henry Ford Transplant Institute offers a variety of support
systems for transplant recipients and their families. Please contact
your transplant coordinator for more information about the
following services:
• Scheduled support groups led by a transplant social worker
• Access to psychologists who specialize in transplant concerns
• Access to a chemical dependency specialist and support group
• On site Henry Ford Hospital chaplin services
Additional support is offered through The Transplant Living Community
of Henry Ford Hospital (TLC). TLC is an organization equiped to offer
lifestyle resources as well as support education. This organization is
comprised of tranpsplant recipients who volunteer daily to offer support
to patients and families throughout the transplant experience. Among
other things, TLC address crucial lifestyle components that contribute to
a positive transplant outcome and long term success with mentorship
from fellow transplant recipients. TLC can be contacted at
TLC@hfhs.org, or by leaving a voicemail at 313-916-2395. You may
also request a refferal from your transplant coordinator or doctor.
Helpful online resources
www.transweb.org.
www.transplantliving.org
www.unos.org
Transplant Living Community (TLC):
Email: TLC@hfhs.org
MEDICAL TERMONOLOGY GLOSSARY
Bicarbonate (HC03)- An electrolyte regulated by your kidneys that
is used to indicate acid/base balance in your blood.
Blood Urea Nitrogen (BUN)- A left over or waste product after
protein is broken down in your body. The kidneys are responsible
for filtering out the BUN.
Calcium (Ca)- The body needs calcium to maintain strong bones,
normal nerve and muscle function ,and blood clotting.
Creatinine (Cr)- A left over or waste product that comes from
muscle. The kidney’s are responsible for removing creatinine from
the blood. A high or rising creatinine level may indicate that the
kidney is not working properly.
Diabetes- A disease caused by high blood sugars.
Hemoglobin (Hgb)- Red blood cells that are responsible for
supplying organs with oxygen from the lungs, and removes carbon
dioxide from the body.
Immunosuppression- reducing the body’s normal response to
invasion by foreign objects such as a new organ.
Infection- a condition caused by a bacteria, virus, or fungus that
enters the body.
Kidney Biopsy- A test to check for rejection. This test is performed
by inserting a small needle into the kidney and extracting a small
sample of tissue.
Magnesium (Mg)- Helps blood to clot and breaks down starches
and proteins. Also helps with nerve pulses.
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Notes
Phosphorus (Po4)- Aids in strong bones.
Platelets- Help control bleeding by forming clots.
Potassium (K)- Changes starch into energy and builds protein.
Kidneys get rid of extra potassium.
Pneumonia- an infection that is in the lung.
Sodium (Na)- The amount of salt that is in the blood stream,
cleared through the kidneys.
White blood cells (WBC)- aid in fighting off infection. A rise
in wbc’s may indicate infection or could be a side effect of a
medication. A low wbc count could also be a side effect.
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HENRY FORD
TRANSPLANT INSTITUTE