Download Patient Information Map Kidney transplant

Patient Information Map
Kidney transplant
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TABLE OF CONTENTS
GUIDE CARD 1
PREFACE
2
CHECK-LIST
3
TELEPHONE NUMBERS
4
PERSONAL DETAILS
5
GENERAL INFORMATION
7
GUIDE CARD 2
PREPARING FOR THE OPERATION
10
THE OPERATION
12
GUIDE CARD 3
AFTER THE KIDNEY TRANSPLANT
14
MEDICATION
16
POSSIBLE COMPLICATIONS AFTER THE OPERATION
21
GUIDE CARD 4
DISCHARGE
25
SCIENTIFIC RESEARCH
35
GUIDE CARD 5
MEDICATION LIST
39
APPOINTMENT LIST OUTPATIENTCLINIC
40
SELF-TESTS
41
LIST OF QUESTIONS
42
1
PREFACE
You have been or will soon be admitted to hospital to undergo a kidney transplant. Almost
all patients experience this period as an exciting and emotional time. You will be confronted
with many new issues.
This folder gives you information about subjects that are important to you during and after the
kidney transplant. We compiled this folder to be able to give you information about the
kidney transplant in a structured way. Should any questions remain unanswered, please
note them down in the list of questions. This list is included in this folder.
You can keep this folder. Please bring this folder whenever you go to the outpatient clinic or
when you are admitted to hospital. All information that you and your specialist need can be
found in this folder. You can also read the information again once you are home.
This folder contains a check-list. When you are admitted to the ward we will discuss with you
the subjects on this check-list.
The period after the transplant is for all patients different. There is the chance that the
information given in this folder does not totally match your situation. The nurse will tailor the
information to your situation.
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CHECK LIST kidney transplant
Admission date:
Topics
patient sticker
Informed
Date
Initials
before the operation
information about the transplant
department F5 Noord
preparing for the operation
the operation
the first period after the kidney
transplant
yes
no
yes
yes
yes
no
no
no
yes
yes
yes
no
no
no
n/a
yes
yes
yes
no
no
no
n/a
yes
no
yes
yes
yes
yes
yes
yes
yes
yes
yes
yes
yes
no
no
no
no
no
no
no
no
no
no
no
yes
yes
yes
yes
yes
yes
yes
yes
no
no
no
no
no
no
no n/a
no
after the kidney transplant
examinations
frequent blood sampling
renogram
ultrasound imaging of the
kidney
cystography
medication curve
kidney biopsy
medication
immunosuppressive
medication
anticoagulant
antihypertensives
possible complications
rejection
infection
urologic complication
movement pattern
food
psychosocial aspects
gathering urine
scientific research
n/a
n/a
n/a
discharge
lifestyle advice
self tests
visits to outpatient clinic
sexuality
sports and exercise
working
anonymity of the donor
explanation lists
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Telephone numbers
General
-
AMC (general)
Nephrology outpatient clinic
Nursing ward F5 Noord
+31(0)20 56 69 111
020-5667032
020-5664170
In case of problems, please call:
-
the nephrology outpatient clinic (office hours 8 am-4.30 pm)
020-5667032
your General Practitioner (in the evening, at night, weekends, public holidays)
……………..
or in case of emergency departmernt F5 Noord
020-5664170
Telephone numbers healthcare providers
Physicians (Office hours 8:00-16:30)
- F.J. Bemelman
- Professor R.J. ten Berge
- K.A.M.I. van Donselaar-van der Pant
020-5667032
Nurse at outpatient clinic
Janneke Vervelde
020-5667032
Social work:
Mrs J. Jenniskens (Tuesday to Friday inclusive)
020-5662476
General Practitioner
.……………
Pharmacy
….…………
Patient Associations
Nierstichting Nederland [Netherlands Kidney Foundation (work days: 1:30-4 pm) 0356978000
Postbus 2020
1400 DA Bussum,
Groot Hertoginnelaan 34
1405 EE Bussum,
www:nierstichting.NL
Nierpatiëntenvereniging LVD [Kidney Patients Association]
Postbus 284
1400 AG Bussum
www.lvd.nlOrwww.nvn.nl
035-6937799
Stichting Transplantatie Nu! [Transplant Now! Association]
Postbus 284
1400 AG Bussum,
www:stnu.nl
035-6912668
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Personal details
Name: ……………………………………………………………………………………………..
Address: ………………………………………………………………………………….……….
City/town: …………………………………… Postal code: ……………………….………….
Telephone number: ……………………………………………………………………….…….
Email address: ………………………………………………………………………………......
Personal factors
Gender:
○ man
○ woman
Do you speak Dutch?
○ yes
○ no, but I, speak …………………………….
Do you understand Dutch:
○ yes
○ no, but I understand ……………………….
Religion/outlook on life:
○ none
○ Christian
○ Islam
○ Jewish
○ Hinduism
○ Humanism
○ other ………………………………………………………….
Personal support
Contact person 1
Name: ……………………………………….. ..
Telephone ………………………………………
Relation to patient ..........................................
Contact person 2
Name……………………..……………..
Telephone............................................
Relation to patient...............................
Medical information
transplants:
1e kidney transplant:………………○ living donor
2e kidney transplant:………………○ living donor
3e kidney transplant:………………○ living donor
○ post-mortem donor
○ post-morten donor
○ post-mortem donor
Dialysis treatment: haemodialysis/peritoneal dialysis/none
Secondary diagnosis:………………………………………………………………………….....
…………………………………………………………………………........................................
…………………………………………………………………………........................................
Allergies :
○ unknown
○ known, namely ………………………………………………………………..
Pharmacy
Name: ……………………………………………………………………………………………..
Address: ………………………………………………………………………………………......
Telephone: ………………………………………………………………………………………..
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General Practitioner: ……………………………
Telephone: …….……………..
Doctor in attendance AMC: ……………………………..
Telephone: …………………...
Nurse nephrology outpatient clinic nephrology: ………
Telephone: ……………………
Food status
Diet: ………………………………………………………………………………………….........
Present weight:………….. kg
Weight 6 months ago:…… kg
Target weight:……….….. kg
Other contacts at AMC
○ Medical Social Worker
contact:…………………….......................……………….......
telephone: …………………………………………..…………..
○ Diabetes nurse
contact: ……………………….............................……………
telephone: ………………………………………..……………..
○ Fistulu nurse:
contact person: ………………………………............………..
telephone: …………………………………………..…………..
○ Other, i.e. ……………
contact person: …………..…………………………………….
telephone: …………………………………………..…………..
Provision of care in the home situation
○ District nursing service
contact: …………………………………………………
telephone: …………………………………………..….
type of care:……………………………………..………
○ Home help
contact: …………………………………………………
telephone: …………………………………………..….
○ Provision of meals
Contact: ……………………..............……….………..
telephone: ………………………………………………
○ Other, i.e. ………….....…………
contact: ……............…………………………………..
telephone: ………………………………………………
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1 - GENERAL INFORMATION
1.1 Various types of donors
A transplant kidney can come from various types of donors. First there is a difference
between a deceased (post-mortem) donor and a living donor.
With a post-mortem donor, the kidney comes from a deceased person. These donors often
died of brain damage after an accident or a brain haemorrhage.
With a living donor, the kidney is from a relative, relation, friend or acquaintance who wants
to donate a kidney. A human being has two kidneys, but can live a normal life with one
kidney. This is because the kidneys have a large reserve capacity. However, there must be
"compatible" blood groups. The compatibility in tissue typing is nowadays less important on
account of better immunosuppressive medicines.
When a combination of donor and recipient cannot proceed, for instance because the blood
groups are not compatible or there is a "positive cross match" (when the patient rejects the
donor) there is still the possibility of an "exchange transplant". This happens via the socalled cross-over programme. This is a nation-wide programme whereby the kidneys are
exchanged between donors and recipients who cannot donate directly to each other.
1.2 What is Eurotransplant?
The Stichting Eurotransplant [Eurotransplant Foundation] in Leiden is an organisation that
mediates in the international exchange of organs. This organisation is affiliated with 160
transplant centres and 40 tissue typing laboratories from the Benelux, Germany, Austria and
Slovenia.
Eurotransplant's computer files store all data of people who are on the waiting list for an
organ transplant. When an organ becomes available, the donor's characteristics (such as
blood group and tissue typing) are compared with the data of possible recipients on the
waiting list. This way the best matching donor-recipient combination can be found. The time
that a person is listed is also taken into account. By international exchange there is a much
better chance of finding a good recipient.
1.3 Nursing department F5 Noord
The AMC is one of the eight Dutch centres for kidney transplant.
You have been admitted to the kidney transplant ward. Extensive information about the
hospital and the various wards are given in the 'Admission Booklet".
Department F5 noord is divided into two compartments separated by a sliding door, namely
the north-east and the north-SOE side.
The department has four specialisations: brachy-therapy (internal radiation) consisting of a
three-bed ward, nuclear medicine with a three to four bed ward, kidney transplant with an
eight-bed ward, and the SOE Special Research Unit with a four-bed ward.
At the F5 Noord department work medical, nursing and supporting disciplines. From the
organisational point of view, the F5 Noord Department falls within the department of internal
medicine.
1.4 Visiting hours
The ward has the following visiting hours: from 3 pm to 8 pm. We request that family and
friends do not visit outside these hours. Sometimes other visiting times can be arranged in
consultation with the nursing staff.
We also request that you receive no more than two visitors at a time because of the peace
and quiet on the ward. In consultation with the nurse you may deviate from this rule in certain
circumstances.
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1.5 Procedure on the ward.
The nurses are on duty at the following hours:
- day duty: 7.30 am – 4 pm.
- evening duty: 2.30 pm - 11 pm.
- night duty: 10.45 pm - 7.45 am.
The nurses will delegate their duties at the following times:
- 7.30 pm - 7.45 am.
- 2.30 pm - 3 pm.
- 10.30 pm - 11 pm.
The meals are served at the following times:
- Breakfast at 8.30 am.
- Lunch at 12.30 pm.
- Dinner at 5.30 p.m.
1.6 Average admission time
The average length of admission for a patient who undergoes a kidney transplant in the AMC
is eight to ten days.
1.7 With whom will you deal on the ward?
There are lots of people milling around on a ward. Many different disciplines will cooperate to
make your stay on the ward as pleasant and comfortable as possible. Below is a survey of
people with whom you will deal directly or indirectly.
Physicians
During your stay on the ward we will inform you who the ward doctor is. The doctor's ward
round starts all days at about 9.30 am, except on Thursday. This is the day on which the
great doctors' ward round are held. The medical staff, the trainee fellows and interns will visit
you. This takes place at about 11.30 am. We request that you be present in your room.
Vascular surgeon
The vascular surgeon is the doctor who will perform the transplant. The vascular surgeon
visits the ward regularly. The vascular surgeon will try to see you before the operation to
inform you about the surgery.
Nurses
A number of nurses work in the F5 Noord Department. There is always one nurse
responsible for you during a shift. We also work with an EVV, the first nurse responsible.
This is usually the nurse who arranged your admission, together with a (trainee) nurse who
will often take care of you. You can discuss any complaints, questions and/or problems you
may have with these nurses during the course of your admission. If this nurse is not present,
you can always raise the subject with the nurse who is then taking care of you. The ward
also engages trainee nurses (students of the University of Applied Sciences). They always
work under supervision of a qualified nurse. In addition, there are often trainees from other
disciplines on the ward, for instance trainees dialysis nurse.
Social worker
There is a medical social worker attached to the unit who is particularly centred on patients
who have undergone a kidney transplant. Where necessary, she will offer emotional support
during admission. She also provides:
- information about practical matters after the transplant (work, income, insurance matters).
- information about the expected emotional dealing after the transplant.
- advice/support for the patient and the patient's relatives.
- assistance in other practical and emotional problems.
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You can contact the social worker via the doctor or the nurse. You can do this during your
admission, but also after you have been discharged from hospital.
The department secretary
Is responsible for the reception of the patients on the ward and carries out various
administrative activities.
The doctor's assistant
Takes blood from patients, makes appointments for the outpatient clinic and arranges
appointments for examinations. Where necessary, she also supports the doctor and the
nurse.
The department assistant
The department assistant is responsible for all kinds of jobs on the ward and elsewhere.
Nutrionist assistants
The nutritionist assistants are present on the ward during the day and evening shifts. They
bring the meals and drinks around and note down the choice of meals.
Cleaners
The cleaners are present on the ward during the day and evening shifts. They clean the
rooms, bathrooms and floors, and are responsible for replenishing the linens on your ward.
They will also ask you if they can clean your bedside table.
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2 - PREPARING FOR THE OPERATION
2.1 Introduction
Even if you have been on the waiting list for years, the notice of the transplant will always be
unexpected. Usually the physician of the dialysis centre advises you that there is a kidney
available for you. He will also tell you if you still have to have dialysis, what time you have to
be in hospital, and from what time you must fast. Fasting means that you are not allowed to
eat or to drink anything.
When there is a live donor, it is obvious that the operation will be planned a long time
beforehand.
2.2 Cross-matching
Before arriving at the kidney transplant ward, your blood has already been "crossed" with the
blood of the possible donor to check whether you have antibodies against the donor's blood.
The result of this cross-matching is usually not yet known when you arrive at the hospital.
This test will take about six to eight hours. A positive cross-matching means that you have
antibodies against the donor and that the operation cannot take place. So there is the
possibility that, despite the preparations, at the very last moment the transplant
cannot go through .
The cross-match is not required for patients who undergo their first kidney transplant and
who have no antibodies against Human Leukocyte Antigens (HLA).
2.3 Inspection of the kidney
The vascular surgeon will inspect the kidney before the operation. The inspection may
unexpectedly reveal that there are anomalies in the kidney (e.g. in the blood vessels), as a
result of which there is a great risk that the kidney will not function. For the surgeon, this
may be a reason for cancelling the transplant. There may be more reasons, such as an
infection, that cause the cancellation of the transplant. So there is a small chance that at the
very last moment the operation will not/cannot go throug.
2.4 Examination
On arrival on the ward, the following examinations will be first performed:
- Blood collection for examination of the organ functions, coagulation of the blood, viruses
- ECG (electrocardiogram)
- Thorax X-ray (a chest X-ray)
- Anamnesis (by the nurse) and physical examination (by the ward doctor)
- A conversation with the anaesthetist if you receive a kidney from a live donor
2.5 Other issues
Where necessary you will still be dialysed (e.g. when there is a high potassium content in
your blood)
Dialysis patients who undergo a peritoneal dialysis, will void their abdomen just before the
operation.
To check whether or not you have an infection that may cause problems after the kidney
transplant, they will take a culture of the dialysate (the flushed out PD fluid) and the skin
around the skin opening.
On admission the ward doctor will ask you to participate (voluntarily) in a scientific research.
We fully realise that this request will be made at a time that you are swamped with all kinds
of information, examinations, and that you are all keyed up in anticipation of the operation.
Unfortunately it is impossible to ask you this question well in advance. Try to think it over
calmly and consult your partner/relatives where necessary. After the operation and even at
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any other moment after the transplant you can withdraw your consent if you wish to. This will
not affect your treatment.
Before undergoing your kidney transplant, the (vascular) surgeon and the anaesthetist will
visit you. When there is little time before the operation starts, this will take place in the
recovery room.
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3 - THE OPERATION
3.1 General information
-
-
-
The transplant takes place while maintaining general anaesthesia, and takes about four
hours. The operation is carried out by the vascular surgeon.
The anaesthetist's assistant inserts a drip in the operation theatre. A small tube will be
inserted into your throat when you are put under an anaesthetic to have a free trachea
during the operation. The tube will be removed once you have regained consciousness.
This may cause some irritation in the first few days after the operation.
The new kidney will be put into the lower abdomen (left or right) on the front side; you can
feel the kidney yourself. The surgeon connects the kidney to the blood vessels and the
urinary tract. Usually, your own kidneys will remain in place.
After the operation, the surgeon will contact your contact person to inform about the
result of the operation. After the operation you will stay in the recovery room for one
night. where you will be intensively monitored for some time. Visiting hours are from 7.15
to 7.45 pm (not more than two persons).
If your condition allows it, you will be brought back to the ward on the day after the
operation.
3.2 The first period after the transplant
After having woken up from the anaesthesia you will observe that there are various tubes
on/in your body. Below is a short description of what purpose they serve.
- A wound drain. It is placed within the operation area. The wound drain draws off excess
fluid in order to prevent the area around the kidney from swelling. The wound drain will be
removed as soon as there is no more discharge from the wound. This usually is in de first
week after the transplant.
- A bladder catheter. This small tube is placed into the bladder via the usual way, and
allows the urine to be drained from the bladder thus giving the bladder the chance of
recovering from the operation. If the catheter is removed, usually on the seventh day
after the operation, you should not strain during urinating and not hold up your urine to
avoid leakage into the bladder where the ureter is placed..
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-
-
-
If you are the recipient of a living donor, a relative or a relation, you will get a splint during
the operation. This splint is placed into the renal pelvis of the new kidney and leads via
the bladder through the lower abdominal skin towards the outside. The urine that the new
kidney produces is drained off directly via this splint. This is the way in which the
connection of the ureter to the bladder can heal first and leakage of urine can be
prevented. Moreover, the urine of the new kidney is collected separately from the urine
that may still be produced by your 'own' kidneys. This is a way to check how the new
kidney is working. The splint will be attached with soluble sutures and removed on the
fifth day after the operation.
If you receive a kidney from a deceased donor you will not get a splint during the
operation, but a double-J stent. The double-J stent is an internal catheter connected to
the bladder and drains the urine produced by the new kidney from the new kidney's renal
pelvis to the bladder. About 6 weeks after the operation, the double-J stent will be
removed via cystoscopy.
A drip will be inserted into the arm. This is for administering fluid and medication.
There is the possibility that you will have a drip (central venous catheter) inserted into the
neck. This is for administering fluid, and for measuring whether you have a shortage or
an excess of fluid. The central venous catheter is usually removed before going back to
your ward.
After the transplant it often happens with kidneys of deceased donors that the kidney is not
working properly and that dialyses are still required. Further explanation is given in the
chapter "Possible complications".
3.3 Peritoneal dialysis catheter
A peritoneal dialysis catheter will generally stay in place for at most three months.
After the transplant, peritoneal dialysis may be needed when kidney function is still poor.
The peritoneum stays intact during the operation, so you can still dialyse via the abdomen
after the operation. If the kidney does not work properly straight away, it will no longer be
necessary to do abdomen dialyses and you can simply unscrew the cap of the catheter. It is
not necessary to rinse the catheter every day. The mini-cap (cap) of the catheter must be
changed every week.
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4 - AFTER THE KIDNEY TRANSPLANT
As has been stated: you will stay in the recovery room on the first night after the operation.
The morning after you will go back to the F5 Noord ward.
The following examinations will be done during your stay on the ward.
4.1 Frequent blood sampling
To monitor kidney function, blood samples will be taken from you every day on weekdays. If
necessary, blood samples will also be taken in the weekends.
4.2 Renogram
To examine you, the doctor will inject a light-radioactive substance in the vein, which is
promptly discharged by the kidneys. When you have a drip, this will be injected via the drip.
Then they will make pictures of the kidney with a large camera. The images show how the
blood goes round in the bloodstream and how the kidney functions.
- Duration of the examination: approximately thirty minutes.
- Burden: an injection into the vein, if any, is slightly painful.
- Location: Nuclear medicine department F2
4.3 Ultrasound imaging of the kidney
The form, the size and any damming up in the kidney are established with the help of an
ultrasound scan.
- Duration of the examination: approximately five minutes.
- Burden: in the first week, the operation wound may be slightly painful during the ultrasound
scan.
- Location: Department F5Noord
4.4 Mictiocystogram
Contrast fluid is instilled into the bladder via the bladder catheter in order to make the bladder
visible in the X-ray images. This is the way to detect any leakages near the connection of the
ureter to the bladder. When this is not the case, the bladder catheter can be removed.
- Duration of the examination: approximately thirty minutes.
- Burden/side effects: an unpleasant urge to urinate may develop when the fluid is in the
bladder and when the catheter has just been removed.
- Location: X-ray department C1.
4.5 Medication curve
To determine whether you are getting enough medicines, the level/concentration of the
immunosuppressive medication in the blood is regularly determined. Blood samples are
taken before taking the medicine, and a couple of times after taking it. In this manner, the
medication curve can be determined. The medicines of which we make curves are
cyclosporine (Neoral), tacrolimus (Prograft), Myfortic, Cellcept, sirolimus (Rapamycine) and
everolimus (Certican).
Prior to the examination, an infusion needle will be inserted to make it unnecessary to insert
a needle every time again.
- Duration of the examination: three to six hours.
- Burden: inserting the infusion needle can be painful.
- Location: Department F5Noord
4.6 Kidney biopsy
In some cases it may be that the doctor deems a biopsy required. This is an injection in the
kidney whereby a small piece of kidney tissue is taken. This procedure is carried out under
local anaesthetic. The material can be assessed under the microscope and gives information
about what is happening in the kidneys.
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- Duration of the surgery: approximately fifteen minutes.
- Burden: the injection for the local anaesthetic can be painful.
- Location: Department F5Noord, in some cases at the X-ray department C1
Follow-up care: as there is the risk of subsequent bleeding, you have to stay in bed until two
hours after the examination. The nurses will regularly check your blood pressure and pulse
rate.
4.7 Cystoscopy
When you have been the recipient of a kidney from a deceased donor, a cystoscopy will be
carried out to remove the double-J catheter about 6 weeks after the operation. The double-J
catheter will be removed with the help of a scope via the urethra and the bladder. Prior to the
examination and during one of your visits to the outpatient clinic, they will prescribe you extra
antibiotics to prevent complications, e.g. a bladder infection.
- Duration of the examination: Approximately 30 minutes including the preparations.
- Burden / side effects: Inserting the scope via the urethra can be painful. After the scope
you may temporarily have a burning feeling when urinating. Your urine may also contain
some blood/blood clots.
- Location: Department C2, endoscopy
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5 - MEDICATION
This chapter gives a description of the medicines that are usually given when performing a
kidney transplant. Apart from the immunosuppressive medication you may be prescribed
haemodilutants, gastric acid inhibitors, and medication to lower your blood pressure and/or
cholesterol level. The possible side effects are also given. To avoid rejection of the kidney it
is important that you take the medicines in the right way.
Never decrease or stop the intake of medicines against rejection of your own accord
as this may result in a rejection reaction.
5.1 Immunosuppressiva
Immunosuppressiva are medicines that suppress the immune system. The immune system
(defence system) protects the body against infections; it detects bacteria and other foreign
tissues and tries to destroy them. The immune system reacts the same way to a transplanted
organ: it attacks the organ, as a result of which it may be rejected. White blood cells play an
important role in this defence.
To prevent rejection, the donor kidney must first be "matched" with the recipient. This means
that the blood groups correspond and that the tissue specifications agree as much as
possible. But no matter how good the match is, you must always take immunosuppressive
agents except when the transplant is between identical twins.
General measures
- Immunosuppressive agents have a number of side effects. In addition to the medicines,
there are also a number of general side effects. First of all, you will be more susceptible
to certain infections, also to bacteria that are not normally pathogenic for humans
(opportunistic infections). Proper hygiene is therefore of the essence.
- In addition, taking immunosuppressive agents for years and years may increase the risk
of developing skin conditions. Some are caused by viruses: (For example: warts, fever
blisters, shingles, chicken pox). Please notify the doctor about these complaints; most
viral infections must be treated with medication. Other skin disorders are caused by
sunbathing. Do not expose yourself too much to sunlight and avoid the sun between 11
am and 3 pm. Wear a hat or cap, and use suntan cream with a high protection factor
(higher than factor 20).
- Malignant tumours often occur due to the immunosuppressives that you are taking,
especially in or on the skin. Lymph nodes cancer and other kinds of cancer are often
seen as well.
- Oral care is essential to prevent infection. If you must undergo dental surgery, such as
pulling teeth and/or molars, please tell your dentist that you have undergone a transplant.
Due to the transplant it is sometimes necessary to have a short antibiotics therapy for the
prevention of infection.
General directions for use
- Have you forgotten to take your immunosuppressives? You can still take them. This
does not apply if it is almost time to take the following dose.
- You must take this medication again when you have vomited within 3 hours after having
taken it. Please contact a doctor in case of protracted vomiting or diarrhoea.
- Ensure that you have a sufficient supply of the medicines at home.
- Ensure that you always have your medicine card with you, and one set of spare pills.
- Ensure that you always take a few days' supply of your own medicines with you when
you must be admitted to hospital.
Kinds of immunosuppressive agents
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Below is a description of the various kinds of immunosuppressive agents with their possible
side effects. You will take a combination of two to three kinds of medicines. This combination
will be determined for you by your physician. So you will not be using all of the medicines
mentioned below. Each medicine has a long list with side effects. However, you will probably
not be affected by these side effects. Please note: this list of side effects is not exhaustive
and does not replace the manufacturer's instruction leaflet.
Prednisone
- 5 mg tablet
- Effect: suppresses the general immune system and inhibits inflammation.
- Dosage: 1x per day (the physician determines the dosage for each patient.
- Intake: preferably during the meal with milk or water.
- Side effects: delayed healing of wounds, moon face, thin skin, diabetes, increased
appetite; de-calcification of the bones, stomach complaints, elevated blood pressure,
ocular hypertension with risk of cataracts, fluid retention, redistribution of body fat, night
sweats, pimples/acne, mood swings.
Neoral (cyclosporine)
- Tablet of 25 or 100 mg each, liquid 100mg/ml.
- Effects: immunosuppressive agent, it has an effect specifically on the white blood cells.
- Dosage: twice a day, the quantity is determined by levels/curves of the substance in the
blood.
- Intake: every day at a fixed time with the same liquid to get a steady content of it in the
blood.
- Never in combination with grapefruit, grapefruit juice or St John's wort. These substances
affect the content in the blood.
- Once the pills have been taken from the strip they must be taken in as soon as possible,
otherwise the effect may decrease.
- the blood compounds and therefore the effect of Neoral may be affected by other
medicines, such as anti-dermatophyte preparations. Consult your General Practitioner if
you take Neoral and you get a prescription for other medicines.
- side effects:elevated blood pressure, kidney function disorder, swollen gums, excessive
hair growth, headache, stomach/abdomen complaints, nerve damage, uncontrolled
movements,elevated potassium level, increased sensitivity to the sun.
Prograft (tacrolimus)
- Capsules ad 0.5 or 1 or 5 mg
- Effects: inhibits the immune system, it effects specifically the white blood cells
- Dosage: twice a day. The transplant surgeon determines the quantity.
- Intake: during the meal. Every day at a fixed time with the same liquid to get a steady
level of it in the blood.
- Never in combination with grapefruit, grapefruit juice or St John's wort. These substances
affect the contents of the medicine in the blood.
- Once the pills have been taken from the strip they must be taken in as soon as possible,
otherwise the effect may decrease.
- Side-effects: Diabetes, elevated blood pressure, kidney function disorders, headache,
stomach/abdomen complaints, loss of sensation in hands and feet, trembling hands,
increased sensitivity to infections.
Imuran (azathioprine)
-
Tablet of 25 or 100 mg
-
Effect: inhibits the function of bone marrow and consequently the forming of white blood
cells.
Dosage: 1 per day
Intake: during the meal.
-
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-
Side effects: Hair loss, stomach/abdomen complaints, liver function disorders, blood cells
abnormalities.
CellCept (mycofenolaat mofetil)
- Tablet of 250 or 500 mg
- Effect: inhibits the white blood cells in their growth.
- Dosage: twice a day.
- Intake: take the tablets whole at meals with plenty of water.
Side effects: stomach/abdomen complaints, anomalies of the blood picture (anaemia,
shortage of white blood cells), sleeping problems, pains (stomach-ache, muscular pain,
pain in the joints), diminished appetite, hair loss.
Myfortic (mycophenolic acid)
- Tablet of 360 mg
- Effect: like Cellcept, and may be used when Cellcept does not agree with you.
- Dosage: twice a day.
- Intake: take the tablets whole at meals with plenty of water.
- Side effects: stomach/abdomen complaints, anomalies of blood picture (anaemia,
shortage of white blood cells, shortage of platelets), headache, liver function disorders,
hair loss.
Rapamune (sirolimus)
- Tablet of 1 and 2 mg, in liquid form 1mg/mL
- Effect: inhibits the tissue-rejecting activities of a certain kind of white blood cells.
- Dosage: 1 per day
- Intake: at breakfast.
- Side effects: diarrhoea, skin disorders, itching, shortness of breath, increased cholesterol
level, sensitivity disorders, trembling, faster heartbeat, decreased vision, accumulation of
fluid, poor healing of wounds.
Certican (everolimus)
- Tablet of 0.25 and 0.75 mg
- Effect: suppresses the tissue-rejecting activity of a certain kind of white blood cells.
- Dosage: twice a day.
- Intake: take it with the same liquid at a fixed time to get a steady content of in the blood.
- Side effects: increased blood pressure, blood cells abnormalities (shortage of platelets,
anaemia), acne, elevated cholesterol level.
5.3 Other medication
Nexium
- Tablet of 20 mg
- Effect: this medicine is a gastric acid inhibitor. It protects the stomach from the adverse
effects of the other medicines
- Dosage: 1 per day
- Intake: take it without chewing, do not break it.
- Side effects: headache, abdominal pain, flatulence, rash and/or itching, dizziness, dry
mouth
Selokeen ZOC (Metoprolol)
- Tablet of 50 and 100 mg
- Effect: reduction of blood pressure
- Dosage:once or twice a day.
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-
Side effects: deviations of the blood picture (shortage of platelets), depression,
decreased alertness, sleepiness, - dizziness, headache, muscle cramp, buzzing in the
ears, cardiac arrhythmia; accumulation of fluid, cold hands and feet, abdominal
complaints, dry and/or irritating eyes, inflammation of the nasal mucous membrane, rash,
oversensitivity to light or sunlight.
Adalat oros (nifedipine)
- tablet of 30 and 60 mg
- Effect: reduction of blood pressure because it has a delating effect on the blood vessels.
- Dosage:once or twice a day.
- Side effects: headache, feeling of heat, blushing, hart palpitations, accumulation of fluid
in the legs, dizziness, stomach/abdominal complaints, rash, swelling of the gums.
Lipitor (Atorvastatine)
- Tablet of 10 mg
- Effect: cholesterol reduction
- Dosage: 1 x per day before sleeping
- Intake: you are strongly discouraged from consuming grapefruit or grapefruit juice as it
can elevate the medication level in the blood.
- Side effects: stomach/abdominal complaints, flatulence, disturbed blood picture (shortage
of platelets), inflammation of the liver, rash, itching, buzzing in the ears, general malaise,
accumulation of fluid in arms and/or legs, muscle pain, pain in the joints,increase in
weight.
5.4 Medication under your own management
Why medication under your own management?
You have recently undergone or will undergo a kidney transplant at the AMC. In order to let
the transition between the hospital and your home go as smoothly as possible, the medicines
you are taking will gradually be placed under your own management during your admission.
Medication is very important for the best possible functioning and care of the transplant
kidney. It is important that the medicines be taken in the right quantity and at the right time.
You can practise this at the hospital with the nurses and doctors nearby to answer any
questions you may have.
Procedure
- On the third day after the transplant, and if everything goes according to wish, the nurse
will explained to you about the medicines and the procedure you have to follow during the
medication training. Please read again the information about the medication in this
patient information map. You will also receive a medication chart on which the medicines
that you are taking are mentioned along with the quantities and the times that you should
take them. Should you have any questions after having received the information, please
do not hesitate to ask the nurse.
- The next day, that is on the fourth day after the operation, you will start with getting the
medication ready yourself, under the nurse's guidance. This day is selected because
then all medicines are usually administered orally, that is to say, in tablet form. Should
this take longer for any reason, it could be that you will start later.
The medicines that you must take in the morning will still be given by the nurse.
- The nurse will give you the medicine compartment and the nurse will ask you to ready the
medicines for the following intake time yourself. The nurse will also check whether the
medicines have been taken in time. The painkillers and any "psycho-pharmaceuticals"
(they are sleeping pills, among other things) will remain under the nurse's management.
- If there are any changes in the medication you will be informed as soon as possible, and
your medicine card will be adapted.
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-
-
The nurse will take the medicine chart so that the night nurse can check it. The medicine
box will also be taken, and where necessary will be replenished by the night nurse.
You will keep the medicine compartment. (preferably in a safe place so that visitors,
especially children, cannot easily reach it). For instance, you may keep the medicine
compartment in the upper drawer of your night table.
If the guided medication has been successfully delegated for 3 days, you will have the
medicines completely under your own management. This means that they will no longer
check at every intake time whether you have put out the medication properly. But once a
day the nurse will ask if everything goes well, if you have any questions and if you still
need medicines. Do not hesitate to ask questions. But the medicine chart and the
medicine compartment will be taken at night for checking.
When there are any changes in your physical condition as a result of which you are no
longer able to manage your medication yourself, e.g. when you get high fever, the
medication will be put temporarily under the nurse's management.
If you have any questions after reading this information or during the medication training,
please do not hesitate to ask the nurse for more information.
5.5 Prescriptions
When you are discharged the nurse will give you a discharge prescription with a description
of all medicines that you are using at the time. You can go to the pharmacist of AMC's
outpatient clinic which is in the outpatient clinic building A. This pharmacist is open 24 hours
a day, 7 days a week. At the outpatient clinic pharmacist you will get the medication for the
first days after your discharge.
When you are discharged, your nurse also arranges for you that your own pharmacist
receives the prescriptions via AMC's Pharmacy Service Point (ASP - Apotheek ServicePunt).
Then your own pharmacist can supply further medications that have been prescribed by the
hospital. Your General Practitioner will also be informed about your dismissal and your
medication list. Renewal of the prescriptions must always take place by the General
Practitioner. If you need new medicines, this will be prescribed once by the outpatient's clinic
and then the General Practitioner will ensure renewals.
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6 - POSSIBLE COMPLICATIONS AFTER THE OPERATION
6.1 Subsequent bleeding
In de first days after the operation, blood loss may develop from the connections between the
blood vessels of the kidney and your body's blood vessels.
The symptoms of this are:
- low blood pressure
- iron deficiency
- dizziness
- bruises near the surgery wound
A new surgery may be required
6.2 Urine leakage in the abdomen
Urine leakage may develop at the location where the ureter is connected to the bladder. This
problem may automatically disappear. New surgery is often required. The symptoms of this
are:
- abdominal pain
- accumulation of fluid
- deterioration of urine production and kidney function
If there is urine leakage in the abdomen, this must be remedied by inserting a tube into the
renal pelvis (nephro drain) to let the urine drain away via this tube.
6.3 Constriction (stenosis) of the ureter.
This is an obstruction of the urine discharge from the kidney to the bladder by a constriction
of the ureter. This will cause engorgement in the kidney. This constriction is often caused by
a disturbance in the blood supply after removing the donor kidney. This will first be treated
with a tube in the kidney, which will be inserted under local anaesthetic. This requires in most
cases a new operation at a later stage.
6.4 Transplant damage of the kidney (acute tubulus necrosis)
The urine filters and drainage tubes of the kidney may become damaged during removal and
during the time that the kidney is outside the body. It may happen that urine production does
not get started at once after the transplant. This symptom often occurs. The duration of the
recovery ranges from a few days to even more than six weeks. You will have to dialyse
during this period until the kidney has begun operating well again and dialysis is no longer
required.
6.5 Rejection of the transplant
Rejection is the most common complication in kidney transplants.
The human immune system is made up of various cells that cooperate to keep the body
healthy and to protect it against pathogenic organisms. The white cells are part of this.
The donor kidney is regarded as foreign tissue, and the immune system will therefore try to
cast it out of the body.
Over half of all patients will have to deal with a rejection sooner or later after a kidney
transplant. In most cases, this situation cannot be called hopeless!
Therapy with medication can treat rejection well.
To notice a rejection, your blood will be tested regularly and, where necessary, a biopsy will
be done to determine the seriousness of the rejection.
There are various stages at which the transplant can be rejected by the body:
a) hyper-acute
b) postponed hyper-acute
c) acute
d) chronic
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Hyper-acute
This is a rejection that takes place within minutes or hours after the operation; the kidney will
be lost. This type of rejection seldom occurs.
Postponed hyper-acute
This rejection often takes place three or four days after the operation. Here, too, the kidney
will often be lost.
Acute
This rejection usually takes place between five to ninety days after the operation.
If there is any damage in the kidney tissue and infiltrated white blood cells are present these
are indications of a rejection. Infections must be excluded in the process. There are a few
classical symptoms of acute rejection. They are:
- reduced urine production
- loss of kidney function
- accumulation of fluid
- fever
This type of rejection can often be treated well.
Chronic
A chronic rejection may occur after an acute rejection by other causes. A chronic rejection
can develop from six months after the operation. It may cause tissue damage in the kidney,
and can shorten the lifespan of the kidney.
Treatment
The treatment depends on the type of rejection. The treatment usually consist of high
dosages of (methyl)prednisolone (MPNS) via a drip for 3 to 6 days. A still more forceful
treatment may sometimes be required.
There is no treatment available for chronic rejection.
6.6 Thrombosis
Thrombosis may occur by pressure on the veins during the operation or by a lack of exercise
after the operation. Thrombosis is a blood clot in the vein. If this clot comes free there is the
risk that this clot obstructs another vein or artery as a result of which blood is no longer
received in the area past the point of injury. Thrombosis of the kidney artery is a rare but
serious complication. The kidney will be lost in almost all cases.
6.7 Elevated blood pressure
Patients who had high blood pressure before the operation will have it also after the
operation but it may disappear as and when the kidney has started functioning better. If this
does not happen, you will be given medication for it.
6.8 Infections
You are more susceptible to various infections after the operation. This is caused by the
medicines that you are taking for the immune system; they substantially reduce your own
immune system. The most frequent infections are airways infection, bladder infection and
the cytomegalovirus (CMV).
6.9 Bedsores (decubitus)
Bedsores are cause by pressure, friction and shearing forces. Due to forces of pressure,
friction and shearing the skin becomes damaged as a result of obstruction of the blood
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circulation in the skin and possibly the underlying tissue. This may cause a wound. These
sores often occur in patients that lay in bed or sit in wheelchair for a prolonged time. The
nurse will monitor your skin for bedsores every day The nurse will particularly check the
places where the bedsores occur most frequently: heels, tail bone, hips, ears and nose. To
prevent getting bedsores you must:
- Regularly change your position and move; as soon as you can move you are advised to
build this up gradually.
- Change your position once in four hours.
- The nurse will order for you an antidecubitus mattress when necessary. This mattress
distributes the pressure over your whole body.
- The nurse may also order a special pillow for in the wheelchair.
- Wear towelling socks in bed to prevent damage to the heels.
- Slide as little as possible when repositioning in bed.
- Lift your body as much as possible when repositioning in bed.
Points of attention after the operation
6.10 Collect urine
After the transplant, urine is collected daily for 24 hours in jars during your admission.
Examinations are carried out to see whether you have produced enough urine and whether
there is enough waste matter in the urine.
The fluid balance is monitored. You must keep count yourself of how much you drink on a
day. To do this, you will receive a fluid list that you can fill in easily. This is to check whether
the kidney functions sufficiently and that you do not retain any fluid.
In addition to the 24-hour urine collection, they will regularly take a urine culture and urine
sediment to be examined for possible infections, proteins and sugars in the urine.
6.11 Physical exercise
From the first day after the operation you may start mobilising, that is to say, leaving your
bed. It will be good to do this twice a day for 15 minutes and to walk around a bit. Depending
on your condition, you can increase this slowly. Mobilising substantially reduces the risk of
bedsores (decubitus) and thrombosis. When you move sufficiently, the doctor will advise to
stop the Fraxiparine injections against thrombosis.
6.12 Food
Just after the operation you will start with a clear liquid diet. They will wait with extending the
diet until the intestines have started working again. It also depends on the blood picture
what restrictions to your diet are prescribed. If the kidney has started working well again,
your diet can be extended slowly to a normal diet (albeit slightly sodium-restricted).
If the kidney does not work properly, it has difficulties with the excretion of proteins, sodium
(salt), potassium and water. Proteins are large molecules that function as building blocks. In
the breakdown of proteins, the substance of urea is released, which is toxic for the human
body. If the kidney does not function well, too little urea is excreted. A protein-limited diet can
then be prescribed to prevent an excess of urea.
All transplant patients need to follow a sodium-restricted diet. As it is, sodium retains fluids.
When the kidney does not excrete the fluids properly, you will follow a fluid-restricted diet.
It is advisable even for other reasons to call in a dietician. A dietician can give you advice
about the choice of foods that you are allowed to eat.
Prednisone has the characteristic that it can result in decalcification of the bones and
consequently in fractures. Calcium can remedy this. The dietician will take this into account
in the food advice.
Some patients benefit from food products that contain extra calcium.
Extensive nutritional advice for after your discharge from hospital is given in section 7.2, on
page 25.
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6.13 Psychosocial aspects
The period around a kidney transplant is an exciting period for you and for those close to
you.
There is always the uncertainty as to whether the kidney will survive after the transplant.
After the kidney transplant, you can participate in social life, you can plan your day, perhaps
even work again, and the need for sexuality may change.
Uncertainty about the question if the kidney will function or be lost may have a great
influence on your life. Experience shows that it may sometimes be difficult to live a “normal
life”. Talking about this may help.
The social worker may offer you support you if you want.
The telephone number is given at the beginning of this folder.
When you want to exchange ideas with other kidney transplant patients, you can contact´De
Landelijke Vereniging voor Dialyserenden en getransplanteerden (LVD)´, a Dutch
association for dialysing and transplant patients. The telephone number is given in the list
with important telephone numbers on page 4.
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7 - DISCHARGE
7.1 In case of medical problems at home: when to contact the hospital and/or
the General Practitioner.
Are there any medical problems at home? Contact the outpatient clinic in the first three
months after the kidney transplant. The outpatient clinic can be reached every day from 8 am
to 4.30 pm.
When there are urgent complaints outside the opening times of the outpatient clinic you can
call the General Practitioner (in attendance) or call F5noord when necessary. You are
advised to contact the outpatient clinic/F5noord in case of:
- fever and cold shivers
- violent vomiting or watery diarrhoea; for more than one day
- blood in your urine
- changes in medication if you have doubts about it, or if your medication is possibly not
right
- if you have gained over 2 kg of body weight in one day
The kidney function is usually stable after three months, and then you can call your General
Practitioner first. In case of any psychosocial problems you can contact Social Work.
7.2 Lifestyle advice
Medication
It is important that you take your medication in the right way and every day. The right
dosage, in the right way, at the right times.
The doctor attending you prescribes the medication. The chapter on 'Admission' describes
how the medication should be taken. During your admission we will show you how to
manage your medication.
You can find your medication list at the back of this folder. This is an overview of all
medicines you are taking.
When you are discharged, the nurse will send the prescriptions to pharmacy 'Apotheek
Service Punt'. They will then send the prescriptions to your own pharmacy. You can collect
the medicines within two days. When you are discharged, the nurse will give you a
prescription to collect the medication from the pharmacy of the AMC outpatient clinic for the
first days after your discharge.
The other information is given under the heading ´Medication´ in the chapter after the kidney
transplant.
Food
Much changes after having a new kidney. So has your food. When the transplant kidney
works well, in principle all diet restrictions that you had before the transplant have lapsed. As
it is, all waste matter is excreted with your urine. Then you can have "normal" healthy food as
applies to all healthy adults.
If the transplant kidney has not yet functioned well, it is required to watch your food. The diet
restrictions will be determined on the basis of the blood results and your blood pressure.
Good food
Our food is composed of the following nutritive substances: proteins, fats, carbohydrates,
dietary fibres, vitamins, minerals and water. Healthy food means that you take in all these
nutritive substances to a sufficient degree. This can be achieved by eating varied food. The
fact is that there is not one nutritive substance that contains all necessary nutrients.
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Recommended quantities of nutritive substances for adults per day:
Bread
Potatoes or substitute (rice, pasta, etc.)
Vegetables
Fruit
Milk and milk products
Cheese
Meat, fish, chicken, egg, tofu and tempeh
Meat products
Low-fat margarine
Margarine for preparing the food
Drinking fluids
5 - 7 slices
3 - 5 pieces (150 – 250 grams)
3 - 4 tablespoons of vegetables (150 - 200
grams)
2 pieces of fruit
2 - 3 glasses (300-450 ml)
1 - 2 slices (20 - 40 grams)
raw 100 grams (cooked 75 grams)
1 - 2 slices (15 - 30 grams)
5 grams per slice of bread
15 grams
2 litres (about 16 cups)
Body weight
Some medicines that you must take to counteract the rejection of the new kidney can give a
hungry feeling. An example of this is Prednisolone. These kinds of medicines affect the
hormonal regulation and interfere with the signals of hunger and satiation. It therefore takes
much longer before feeling that you have had enough. If this is the reason that you are
eating more than the energy need of your body, you will gain weight.
The most considerable weight increase is usually seen in the first 6 months after the
transplant. To keep an eye on your body weight you are advised to weigh yourself once
week on the same day under similar circumstances. So weigh yourself with the same pair of
scales, at the same time (preferably in the morning before breakfast and after having been to
the toilet) and with similar clothes on (e.g. nightclothes/without shoes or naked).
Tips to maintain your weight:
- Take low-calorie soft drinks or mineral water instead of ordinary soft drinks. Do not drink
too much fruit juice as these drinks also contain calories.
- Butter your bread with diet low-fat margarine instead of diet margarine or butter.
- Opt for low fat kinds of meats, such as fricandeau, rolled meat, roast beef, fillet of chicken
or turkey and cured side or pork. Try also low fat cheese, such as 20+/30+ cheese,
cottage cheese or Swiss grated cheese instead of full-cream 48+cheese.
- With hot meals, take low fat meats, such as roast beef, rolled meat, lean braising steak,
raw minced steak, fricandeau, pork steak, beef olives and fillets of chicken and turkey.
- Try not to eat too many sweets and/or fatty snacks, such as pastries, cookies, sweets,
chocolate, peanuts, crisps, cubes of sausage or cheese. Choose instead a piece of fruit
or a slice of bread with lean spread if you are hungry.
- Replace sugar in your tea or coffee by sweeteners if desired.
- Make sure you get sufficient physical exercise; 30 minutes a day would suffice. You will
get quick favourable results with a (stiff) walk, taking the stairs instead of the lift,
gardening, swimming, doing the windows, taking the bike more often instead of the car,
etcetera.
Taking Prednisone results in an increased risk of developing diabetes. It is therefore all the
more important to watch your weight, as being overweight increases the risk of diabetes.
Sodium
If you have high blood pressure or if you retain fluid after the transplant, it is required that you
follow a low-sodium (low-salt) diet. You may achieve this by:
- Not using any salt, broth (cubes), soy sauce, fluid aroma, mixed herbs/spices from a
package (such as 'nasimix') and the like when preparing dishes.
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Not eating any salty products and snacks, like ready-to-eat sauces and soups, ready-toeat meals, saly meat products (raw ham and smoke-dried meat), smoked sausage,
hamburgers, herring, anchovy, smoked herring, savoury snacks, cocktail snacks and
salty crisps. Do not eat too much liquorice either, as this may also increase the blood
pressure. This is not caused by the salt but by the glycerine substance. This substance
is present in both sweet and salty liquorice.
To flavour hot meals you can add the following substances:
- Fresh or dried herbs/spices (for tips see the book "eten met plezier" [eat with pleasure]
published by "Nierstichting" [Kidney Foundation).
- Verstegen has a herbs assortment with no salt added.
- Low-sodium seasoning. These products are available in health food shops and large
supermarkets. But pay attention, as these products may contain much potassium.
Consult with your doctor or dietician whether these products are suitable for you.
- Vinegar, lemon juice, ginger, garlic, bouquet garni, mustard powder, mustard seed, onion
and wine. You can also flavour your meat by frying it together with tomato cubes and
mushrooms.
- Make as much possible use of fresh products. For tasty recipes, see the book "eten met
plezier" [eat with pleasure] published by "Nierstichting" [Kidney Foundation), or visit the
Internet (for instance: www.lvd.nlorwww.nvn.nl). There are also low-sodium cookery
books available, such as "lekker zonder zout" [tasty without salt] published by the Heart
Foundation [Hartstichting].
In summary, a low-natrium daily menu may consist of the following:
- ordinary bread
- unsalted margarine/low-fat margarine
- slightly salted savoury of sweet sandwich filling.
- ordinary milk and milk products; 3 to 4 products a day at the most.
- prepare dinner or supper without salt or salty seasoning.
- snacks and something between meals that contain little or no salt.
Even if your doctor did not tell you that you must follow a low-sodium diet it would be better
to use salt sparingly. This is much better for your new kidney and reduces the risk of high
blood pressure.
Fats
As a result of the medicines that you must take to counteract rejection of the new kidney,
there is a greater chance of increasing your cholesterol level. It is therefore important to
watch fats in food. With fat you must make a distinction between saturated and unsaturated
fat.
Saturated fat is primarily present in (animal) products like butter, hard margarine and some
wrapped vegetable margarines, fat meats and fat meat products, full-cream cheese and
cream cheese (products), coffee creamer, pastries, biscuits, chocolate, coconuts and
snacks.
Unsaturated fat is primarily present in all sorts of (vegetable) oil, liquid (diet) baking and
cooking fat, liquid frying fat, diet (low-fat), nuts, fatty fish and oil-based savoury sauces, like
salad dressing.
To reduce the risk of an elevated cholesterol level it is important to be sparing with saturated
fat.
Tips to limit the intake of saturated fat:
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choose low-fat or skimmed products, like skimmed or semi-skimmed milk (products)
instead of full-cream milk (products), and take 30+ cheese instead of 48+ cheese.
Prefer products that are rich in unsaturated fat (read the information on the package).
Spread the butter on the bread thinly and preferably with low-fat margarine.
Select meat and meat products that are less fat (examples are given earlier in this folder).
Eat (fat) fish instead of meat once or twice a week.
Be moderate with products that contain much fat, such as savoury snacks, cheese,
sausage, cake, pastry, etcetera.
Use oil, liquid margarine and/or liquid cooking and frying fat for preparing the hot meals.
Do not eat more than 3 eggs a week.
Calcium
Prednisolone presents an increased risk of decalcification. It is therefore important that your
food contains sufficient calcium, that is to say, chalk. Milk (products) and cheese are the
chief sources of calcium in the food and it is advisable to take daily at least four of these
products. If this is not possible you can also opt for calcium-enriched products, like calciumenriched milk. Apart from calcium, physical exercise and vitamin D are also important. It is a
fact that physical exercise enhances the formation of bone tissue. Vitamin D is required for
the absorption of calcium from the food and serves as building material for the bones. Lowfat margarine, margarine, and cooking products, meat and fish are the most important
sources of vitamin D in the food. The body also forms vitamin D with the help of sunlight.
Fluids
To ensure that the new kidney is properly "flushed", it is important to drink sufficiently. With
your urine production you can check whether you have a sufficient intake of fluid. Your urine
production must be at least 1.5 litres in 24 hour. Considering the increased risk of weight
increase after a kidney transplant, the drinks that supply no (or hardly any) calories are
preferred. Examples of this are coffee and tea without sugar (if so desired with a sweetener),
(mineral) water and diet or low-calorie soft drinks.
Hygiene
After the kidney transplant you must take immunosuppressive medicines to prevent rejection
of the new kidney. As a result, you are also more susceptible to food poisoning. It is
paramount to take proper hygiene measures when preparing and consuming food.
- Wash your hands well with soap before and after contact with food; dry them with a towel
and take a clean towel every day.
- Read the packing for the best-before date and storing advice. Do not use any foodstuffs
that have passed the best-before date. Put perishable products like meat and cool-fresh
products as soon as possible in the refrigerator.
- Use clean kitchen utensils made of glass and plastic; not made of wood.
- When cooking, avoid any contact between raw and prepared food, also via the hands
and kitchen utensils.
- Heat chicken, eggs and meat until they are throroughly cooked.
- Always wash and peel vegetables and fruit.
- Cover leftover food well and store it at the most for two days in the refrigerator. Heat
these leftovers thoroughly before consuming them.
- Clean dishes, saucers, carving boards, the sink, etc. in or on which raw food was held
before using them again.
- Do not keep perishable products, including meat and meat products and similar food for
long outside the refrigerator when the weather is hot. Think also of meat products on the
bread and meat for the barbecue.
- Use clean tea towels for drying every day, and use clean kitchen towels for the sink every
day.
- The temperature in the refrigerator should not be higher than 4 degrees Celsius.
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Summary
- Ensure that you have a healthy and varied food pattern.
- Prepare dinner or supper without salt or salty seasoning. Leave out snacks that contain
much salt.
- Watch your weight.
- Be sparing with fat, especially saturated fat.
- Eat sufficient calcium-rich products.
- Ensure that you drink sufficiently.
- Watch the hygiene when you prepare food.
Further information
Should you require more information about healthy food and/or additional food advice,
please contact your specialist and/or General Practitioner, who may refer you to a dietician.
The nutrition centre ('voedingscentrum') in The Hague (www.voedingscentrum.nl) has
numerous leaflets and other information sources that may give you further advice about
healthy food and food safety.
Infection risks
As you take medication that reduces your physical defences you have a greater risk of
infections. You can take measures to limit these risks of infections:
- You are advised to get the influenza vaccination from your General Practitioner every
year.
- Wash your hands regularly.
- Do not use any wooden or plastic chopping or carving boards in the kitchen, and change
the tea towels and dishcloths regularly.
- Do not eat any foodstuffs that have passed the best-before date; neither any raw meat
nor products containing unpasteurized milk.
- Avoid contact with animal excrements; do not clean the cat's litter box, birdcage or
chicken coop.
- Put on gloves when gardening if you have wounds on your hands.
- Do not drink any tap water when you are abroad, and be cautious about your food.
- The outpatient clinic will test you for the cytomegaloviros (CMV) every two weeks.
- You will be tested once for the herpes virus if this has not been done already during
dialysis.
Body hygiene
- Good body hygiene is also important to prevent infections.
- Avoid excessive use of soap so as not to dehydrate the skin.
- Take care of a proper hygiene of your teeth and visit the dentist for a check-up every 6
months.
- Prevent and be on the alert for wounds on hands and feet.
- Women who have frequent bladder infections are advised to drink much and to urinate
frequently, also after intercourse.
Alcohol
Do not take more than two units a day. Excessive use of alcohol may cause irritation of
gastric juice, liver damage and oesophageal bleeding.
Smoking
Stop smoking! Due to your kidney disorder and the use of medication (Neoral, Prograft and
Prednisone) you have an increased risk of hardening of the arteries. Smoking increases this.
The AMC has an outpatient lifestyle clinic concentrated on advice about stopping with
smoking, excessive consumption of alcohol, drugs and medication. Should you wish to have
advice or an intake interview, you, your doctor or your nurse may apply via the following
email address: [email protected]
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The sun
Be cautious about exposing yourself to direct sunlight. Certain medicines that suppress your
resistance make your skin thinner. This increases the chance of getting skin cancer. Your
skin may also become sunburnt more easily. Using a cream with a high UV protection factor,
at least factor 30, can greatly reduce this risk. It is also advisable to inspect your body for
changes in the skin every six months. Pay special attention to newly developed spots when
you inspect yourself. Inspect also existing moles that have changed in size or colour.
Skin cancer can usually be treated well. It may be required that the dermatologist removes
the spots.
Travelling after a kidney transplant
When to go on a trip?
If your health allows it, you can go on holidays six months after the transplant. It is not
advisable to travel to far countries in the first six months or when the kidney function is not
stable. This applies to countries with bad hygienic conditions or where good healthcare is not
available.
Who to inform about your travelling plans?
Consult the specialist attending you about your journey well ahead of time. Contact the
'Tropenpoli" [outpatient clinic for the tropics] at the AMC three to six months before starting
your journey.
Where to?
To you, as a transplant patient, there are countries for which a negative advice applies
because you cannot get the necessary vaccinations for these countries. Make thorough
enquiries before going on a journey. Contact the 'Tropenpoli" [outpatient clinic for the tropics]
at the AMC. Also the GG&GD municipal health service can provide advice.
What extras do you take in your suitcase?
- The Medical Passport Kidney Transplant, with all recent medical details. This is handed
to you at the (nursing) transplant outpatient clinic.
- A Medication Passport. This can be obtained via your pharmacy.
- A copy of the travel enclosure in this Patient Information Folder.
- ORS in case you get diarrhoea. ORS is available in your pharmacy or drugstore.
- Proper UV A+B protection; at least factor 30 if you travel to sunny areas.
- A sun hat or cap.
- Shirts with long sleeves. and trousers with long legs.
- Good sunglasses with sufficient UV protection.
- Betadine iodine for disinfecting small injuries;
- Tick tweezers. When you have been out in the open, inspect your skin for ticks.
- Sufficient medicines for the total trip. It is advisable to take extra medicines in case of
emergency.
- Ciproxin 250mg. A 14-tablet cure
Precautions when in the sun
Apart from using good sun cream and a good pair of sunglasses it is important that you stay
out of the sun between midday and 3 pm. Always wear a sun hat or cap.
Travel insurance:
Check beforehand with your healthcare and travel insurers if there is global coverage and for
what maximum amount.
Medication use
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Take your Medical Kidney Transplant Passport and also a recent Medicine Passport. Ensure
that the medication suffices and take extra medicines for at least two weeks. Distribute the
medication over various suitcases and put medication for at least one week in your hand
luggage.
Take an antibiotics cure (Ciproxin) for preventative treatment. You can obtain this with a
prescription from your GP.
Emergency situation
If, in spite of your preparations, you have no medicines and the local pharmacy only has
Prednisolone and no Prograft or Cellcept, then take 25 mg Prednisolone and try to return
home as soon as possible.
Time difference
In case of time difference, a golden rule of medicine intake is: “taking them too early is no
problem, but taking them too late is”.
When making a long journey, remember that you have to adjust your medication times if
there is time difference. The following examples show you how to deal with these time
differences.
Travelling eastward:
A time difference of + 5 hours (Asia) in case of a medication intake of twice a day:
In the Netherlands: intake time at 8 am and 8 pm.
Then it is 1 pm and 1 am local time in Asia.
Day of departure: adhere to the Dutch intake times
The next days: intake time at 8 am and 8 pm.
You take them 5 hours earlier once, so after 7 am instead of 2 pm.
Travelling westward:
A time difference of – 5 hours (USA) with a medication intake of twice a day:
In the Netherlands: intake time at 8 am and 8 pm.
Then it is 3 am and 3 pm local time in the United States.
Day of departure: adhere to the Dutch intake times
Please note: Add extra intake times: about 8 hours after the last intake 4 pm Dutch time and
11 am USA time:
The next days you must take your medication again at the local USA times (8 am and 8 pm).
Hygiene abroad
It is essential to watch your personal hygiene and the hygiene with food (see also chapter
7.2). Always take packed ice, packed fruit juices and self-peeled fruits. Do not take
unwashed salad, tap water or ice cubes. Golden rule: Cook it, Peel it, Boil it or Forget it.
Infections on the trip
Due to their decreased defence system, transplant patients run extra risks:
- Increased susceptibility to infections such as bronchial infections, intestinal infections,
Tuberculosis and infections by: parasites
- Decreased effectiveness of the vaccinations.
- Contraindications for "live" vaccinations.
If you have diarrhoea for more than two days, you should take 1 tablet of 250 mg Ciproxin
twice a day.
Stomach/intestinal infections
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If you get diarrhoea that persists for over a week or gets worse after taking Ciproxin, you
should contact a hospital. Be sure to drink enough. You can take ORS (oral rehydration
solution) to maintain sufficient salt and sugar levels. Coca cola with a lump of sugar is an
alternative if no ORS is available.
If you vomit within 3 hours after having taken your medicines, you should take your
medicines again.
Vaccinations
Vaccinations are recommended for travelling to some countries. Taking immunosuppressives
(defence inhibitors) affects the vaccinations. Vaccines from a live, weakened virus should not
be used for people after a transplant. The Tropics Centre at the AMC or the GG&GD
Municipal Health Service can give you extensive information about this.
For making an appointment for the medical travellers' consulting hours, you can contact the
Tropics Centre at telephone 020-5663800 between 8 am and 4 pm. They are specialised in
giving advice and vaccinations to people with a decreased defence system. Always inform
them of your medical history and use of medication.
The following vaccines are from live, weakened viruses and should not be used for
transplant patients.
- BMR
- BCG
- Typhoid fever (no tablets)
- Yellow fever
The vaccines, which are allowed to be given are:
- DTP
- Typhoid fever (via an intramuscular infection)
- Hepatitis A
- Meningococcus
- Pneumococcus
- Influenza
- Rabies
Hospital
Before going on holidays it is sensible to investigate where a good hospital is in the place of
destination (or in the surroundings). For example a hospital that is also specialised in
transplants.
When you have a medical problem abroad:
- Always mention your complete medical history and show the Kidney Transplant Medical
Passport.
- Always contact your specialist in attendance in the Netherlands in case of treatment or
hospital admission in foreign countries.
- It is important that you contact first the kidney transplant outpatient clinic in connection
with a possible MRSA (multiresistant bacteria) infection after your return to the
Netherlands.
Sport and exercise on holidays
If there are no medical problems there is no objection if you want to do other sports and
exercises during your holidays than you are used to. The rules that apply to doing sports
and exercises in the Netherlands are the same as doing sports and exercises during your
holidays.
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Self tests
- It is not necessary to check your temperature every day. Take your temperature when
you feel feverish. If you have fever and cold shivers, contact your GP or nephrologist via
the outpatient clinic.
- Check your weight twice a week in the first three months after your operation. If you gain
two kilos in one day there is the chance that you are retaining fluid. Contact the doctor in
attendance via the outpatient clinic. Weigh yourself once a month from three months after
the operation.
- We recommend that you measure your blood pressure at home twice a week. Measuring
your blood pressure at home is often more reliable than the values measured at the
outpatient clinic. That is why we recommend that you purchase a blood pressure monitor
for yourself. Check your blood pressure once a month three months after the operation.
Visiting the outpatient clinic
You will have an appointment with your doctor in attendance at the outpatient clinic twice a
week in the first few weeks after the operation. The frequency of the number of appointments
will be less after six to eight weeks and when your kidney function is stable. When you go to
the outpatient clinic, you bring the following items:
- two 10 ml portions of urine in 24 hours
- completed list of questions
- completed check-list
- outpatient clinic check-list
- your Patient Information Folder
Do not take your prograft or neoralin in the morning when you visit the outpatient clinic. Bring
the medication with you, and take it after a blood sample has been taken.
The doctor in attendance at the outpatient clinic will prescribe new medicines when you
receive new medicines. The repeat prescription will be prescribed by your GP.
We would also like to point out that the appointment at the outpatient clinic will take ten
minutes. Whenever you have any questions it advisable to note them in the list of questions
beforehand so that we can answer these questions within ten minutes.
The check-ups at the outpatient clinic will in principle be transferred to the nephrologist who
treated you for your kidney conditions before transplanting you. If problems that are related
to the kidney transplant still occur after this period, your nephrologist can always contact the
doctors at the AMC for consultation.
We, the transplant department, started with nurse consultations for kidney transplant patients
in June 2011.
You received information about the medication and the health regimes after a kidney
transplant during your admission. Coping with all you went through during your admission to
the AMC often starts after your dismissal. Questions may arise or problems may be
encountered that you have not experienced before. In order to answer your questions and to
support you, we started nurse consultations as an addition to the medical consultation by the
nephrologist that treated you. It concerns three appointments (after 2 weeks, 3 months and
9 months) in the first year after your transplant.
Apart from the check-up appointment with the nephrologist that treated you, you will have an
appointment for the nurse kidney transplant consultation after your dismissal.
During the nurse consultation you can ask questions or discuss your problems that result
from your kidney transplant. A nurse consultant who is specialised in supporting patients
after a kidney transplant will discuss various topics with you, such as health regimen and
medicine intake after a kidney transplant.
There is the possibility that issues may be raised that cannot be solved by your nephrologist
or nurse consultant. Together with you they will look into referral possibilities to solve your
problem.
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Gathering 24-hour urine
- You must gather urine for 24 hours before visiting the outpatient clinic. You can use the
jars that are used on the ward and that were given to you when you were discharged.
- Mix the urine when the 24 hours are passed. Then you fill two ampoules/tubes from the
jar and bring them along. This means that you do not need to take the whole jar to the
outpatient clinic. Carefully note down the total volume of the urine on the form. Ensure
that your name, date of birth and patient number are indicated on the tubes.
- If you have filled two jars, take for each tube some urine from both jars.
- After the appointment with the outpatient clinic, some blood and fresh urine will be taken
at the outpatient clinic's laboratory. The 24-hour urine will also be delivered here.
Sexuality and pregnancy
Your physical and mental condition will often improve after the operation, and the need for
sexuality may gradually increase as a result. Some men may suffer from impotence during
the dialysis period. There is the chance that this is remedied after the transplant. If you need
to talk about this please notify the doctor attending you. The social worker can also be
contacted for this issue.
If you wish to have children you need to consult the doctor attending you about this. The
doctor will usually advise you to wait with getting pregnant until 1 year after the kidney
transplant.
The medicines you are taking may be harmful to your child. They may be adapted when
there is a wish for children/pregnancy. Pregnancy always means an increased burden on the
kidneys, also in healthy women. The pregnant woman with a transplant will have to be
checked more often. During pregnancy it happens that the transplant will work less well or
that a seriously high pressure will develop.
The location of the transplant in the abdomen will not cause any problem. More than 80% of
the pregnancies ends successfully.
Sports and exercise
After your discharge, sports and exercise may be important for building up a good condition
to prevent excessive increase in weight and bone decalcification as a result of the
Prednisolone. In the first year, you are discouraged from doing contact sports like football,
martial sports, basketball, etc. With these sports, there is the risk of damaging the
transplant. After this first year we do not discourage this but you have to stay alert.
Naturally, the following sports are suitable: swimming, cycling, walking, working out, fitness
or aerobics.
Working
You can start working again some time after the operation. You are advised to find a
suitable way to return to work together with your employer/supervisor.
It is important that you listen to your own body. You are the one who feels best whether you
are able to manage.
Anonymity of the donor
It is possible to thank the donor's next of kin via an anonymous letter. That is why you
should not mention a name, address and telephone number in your letter. You can pass the
letter to the information desk at the F5Noord department or to the doctor attending you at the
outpatient clinic. They will ensure that the letter is sent to Eurotransplant and they will
forward the letter to the donor's next of kin. You can thank the donor's next of kin only once.
You cannot get in contact with them.
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8 - MEDICAL RESEARCH
Introduction
You have been asked to cooperate in a medical research. This information helps you decide
whether you want to cooperate in the research. The decision is up to you.
There is a researcher who conducts the research. You will have a discussion with him or her
about the research. He or she will also give written information about the research. If
something is not clear you can always ask the researcher for extra information.
Discuss the information with your partner, family, friends or your GP or physician. You may
also address an independent person. This person knows much about the subject but is not
involved in the research.
Take your time. Usually you need not decide right away.
Medical research
What is a medical research?
There are two types of research. If you have health problems, you go for examination to the
hospital. A physician examines you to find the cause of your complaints. The aim is to make
you better. This is called diagnostic examination.
There is also medical research. There are three types of medical research:
- to find a better treatment for illnesses.
- to understand more about an illness.
- to detect an illness
Medical research is not primarily aimed at making you better. More information about
medical research is given below.
What are human subjects?
All persons participating in medical research are human subjects. There are two types of
human subjects: healthy volunteers and patients. Patients may benefit from the research.
Who conducts the research?
The researcher conducts the research. He or she is a scientist and knows much about the
research and the topic. Also the nurses of the department are often involved in the
performance of the research. At the F5Noord department there is a research nurse who is
involved in the set-up and the performance of the research in almost all cases.
How does the research work?
A new treatment, operation or medicine may be tested during the research. For
convenience's sake we use here the word 'treatment'.
The researcher usually compares a new treatment with an existing treatment. The
researcher selects what person gets which treatment by drawing lots. This is called
randomisation It depends on chance to which group you will belong.
The researcher often does not know himself/herself to what group you have been assigned.
In such case, the research is called double-blind. In this way, he or she is able to compare
the results between the groups more fairly. However, if so required, the researcher can find
out to which group you are assigned.
The researcher sometimes compares a new treatment with a 'fake treatment'. Such fake
treatment is called placebo. Everything in the placebo looks like the new treatment but in
case of a medicine it does not contain the possible active constituent. One group of human
subjects do indeed receive the new treatment, and the other group of human subjects
receive the fake treatment; the placebo.
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Participation
Who decides whether you participate?
You always decide yourself whether you participate in this research. It is voluntary. This
means that you are never obliged to participate. You only decide when you know enough
about the content, the possible risks and advantages and disadvantages of the research.
What result does the medical research yield for you?
- You contribute to the progress of medical science.
- You may benefit from the new treatment, and sometimes you may not. The researcher
can tell you more about this.
- You will not earn any money with the research, but you usually get a refund for possible
travelling expenses.
What must you take into consideration?
- Usually you must come for check-ups more often when you participate. This means that
participation will require your effort and time.
- You may run a risk when you participate as the treatment is new and is still being
examined. Not all effects and side effects are known. Furthermore, the researcher often
does extra tests or takes blood tests. The seriousness of the risk depends on the type of
research and on your health. The researcher will explain this to you.
What happens if you have decided to participate?
If you have decided to participate you will sign a declaration. This is called a declaration of
consent. With your signature you have indicated that you voluntarily participate in the
research. You will get a copy of the signed declaration.
Your signature does not mean that you have to complete the research. You always have the
right to stop participation after all.
You will often be examined first. The researcher will examine whether you are physically
suitable for the research. There is the possibility that you cannot participate in the end, for
example because your blood pressure is too high.
What happens if you do not want to participate?
If you decide not to participate, you do not need to do anything. You need not sign anything.
You even need not tell why you do not want to participate. You will still get the treatment that
you would get otherwise.
Rights and Duties
What are your rights and obligations as a human subject?
A human subject has rights. These rights are laid down by law. The most important rights
are:
- the right to decide yourself,
- the right to information and to ask questions,
- the right to time for reflection,
- the right to stop the research before it has been completed, and
- the right to protection of your personal data.
What are your obligations as a human subject?
You must adhere to the rules of the research. These rules are different for each research.
You must sometimes start the research with an empty stomach. This means that you are not
allowed to eat anything from the evening before. You are only allowed to drink water. You
must sometimes take a pill daily at a fixed time.
It is important that you adhere to the rules. If not, the researcher cannot conduct the research
properly, and the results will not be reliable. The researcher may even decide that you can
no longer participate in the research.
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Checking
Who checks if the research goes well?
There are strict rules for research with human subjects in the Netherlands. These rules are
prescribed in the Medical Research Human Subjects Act. A special committee assess all
researches beforehand. This committee is called the review committee. A research can only
be started when the review committee has approved it.
What happens if something goes wrong?
The researchers naturally do not want that something goes wrong, but there is the risk that
problems occur. That is why an insurance policy has been taken out. If you suffer damage as
a result of the research, the insurer will compensate the damage. The researcher will inform
you about this.
What happens with your personal data?
Personal data that is gathered about you during the research will stay confidential. The
researcher will store your data with a code. This code is used in reports about the research.
Only the researcher knows the code.
Reliability
Only a few others can inspect your data. They must check whether the research is good and
reliable. The Personal Data Protection Act prescribes how this should happen.
During the research
The researcher stores your data during the research. He or she will tell you how the data are
used. You only give permission for using your data for this research. After completion of the
research, the data must be stored for a certain period. Your personal data will be destroyed
later.
Later research
You may also give permission for using your personal data for later research. Then the
researcher will keep your data. If your personal data are used for another research with
another purpose, your permission will be asked again.
This information was borrowed from the leaflet about Medical research (general information for human
subjects) by the Ministry of Public Health, Wellfare and Sports.
Studies at F5Noord
ELEVATE study
The ELEVATE research is a multicentre, randomised 24-month research with the aim to
study the efficacy, safety and the effect of the medicine Certican (everolimus) on the
cardiovascular system in kidney transplant patients.
ALLEGRO study
You will take medicines against rejection after the kidney transplant. You start with a
combination of three different medicines, but in the course of time, one of these medicines
will be phased out when the transplant has been accepted for some time . Then you will
continue with two different medicines.
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The ALLEGRO study is a study into the best therapy (comination of medicines) after a kidney
transplant; Advagraf and Cellcept, Advagraf and Prednisolone or Cellcept and Prednisolone.
When you have decided to participate in one of the above studies, the researcher and/or the
research nurse at F5Noord will give you extensive information.
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MEDICATION LIST
name
strength
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Intake time(s)
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LIST OF APPOINTMENTS AT THE OUTPATIENT CLINIC
Date
Time
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Physician
Telephone no.
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SELFTESTS
Date
Blood
pressure
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Temperature
(where
necessary)
Blood sugar
(where
necessary)
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QUESTIONS (outpatient clinic appointments)
Questions:
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