Heart transplantation - A patient's guide
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A patient’s guide
Heart
transplantation
A patient’s guide
1A patient’s guide
Heart transplantation Waiting list
Heart transplantation has If accepted onto the heart
the potential to significantly transplant waiting list,
improve the length and quality potential recipients need
of life for patients with severe ongoing review approximately
heart failure. every three to six months
to ensure suitability for
Most patients return to a near transplantation. This
normal life, including exercise, may include blood tests,
work, education and travel. echocardiography, X-rays and
Before agreeing to being right heart catheterisation.
placed on the list for heart
transplantation, it is important Once on the list, patients wait
to understand the complexities for periods that may vary from
and complications of the whole a few months to several years
transplant process: choosing for a suitable heart. Factors
the donor heart, the transplant affecting waiting times include
operation, the problems patients specific blood group
encountered immediately and their size. Patients may be
after the operation and in the removed from the waiting list
subsequent weeks, months and if their condition changes or
years. deteriorates such that the risk
of transplantation would be
As with all forms of medical too high.
intervention, there are risks
and benefits of transplantation Some patients may be suitable
and these have to be to consider either listing
compared with the risks of no urgently for transplantation
intervention. Transplantation as an inpatient or surgical
is associated with an increased placement of a heart pump
risk of death in the short-term known as a ventricular
but a significantly increased assist device (VAD) to help
chance of survival in the longer support the heart in case of
term. deterioration. Despite these
options, some patients die
whilst on the waiting list for a
heart transplant.
1A patient’s guide
Donor organs is free of risk but the recipient
Accepting a donor organ for has the right to decline offered
a recipient is complex and organs where there is evidence
the decision is based on many of significant increased risk
factors including the donor, the (which may be difficult to
organ and the recipient. quantify) or there are factors
they find unacceptable. This
Before accepting a donor heart may occur either when going
for transplantation, extensive onto a transplant waiting list or
information is obtained about at the time of offer.
the potential donor. This
includes their general health The recipient must understand
including; alcohol and smoking that declining an organ may
history; specific diseases (eg put them at increased risk of
diabetes, cancer); and previous dying before an ‘acceptable’
or significant risk of infection one becomes available.
(eg hepatitis, HIV, CJD) in order
to prevent transmission to At the time of transplant or
the recipient. Despite these afterwards, the recipient may
precautions, there is still the feel they would like to know
possibility of transmitting more about the donor but
unknown chronic infection due to confidentiality this
(usually viral) at the time of information may be limited to:
transplant surgery. age range (by decade), gender
and how the donor died.
Specific details are generally
only passed to the recipient Transplant operation
when this would increase the The transplant procedure
risk or complicate the outcome itself carries a significant
of the transplant. risk (approximately 10% risk
of dying in the first month
This could include whether following the operation). The
the donor poses a greater risk main contributors to this are
of transmission of infection the function of the donor
or malignancy or whether the heart, other organs failing and
donor organ has a particular infection.
risk of poor function. No organ
2A patient’s guide
Some evidence of reduced year survival at Papworth
function of the heart or kidney Hospital during 2008 to 2011
in the early post-operative was approximately 90% but
period is common, but usually individual centre results may
resolves with appropriate vary over time.
support including temporary
kidney dialysis. Patients may Frequent follow-up at the
have to return to theatre if transplant centre is important
problems such as bleeding during the first year, but this
occur. may be no more than every six
months after the second year.
Occasionally a heart may Readmission to hospital, other
appear to function well when than for planned investigations
studied in the donor but very is infrequent.
poorly after transplantation.
Despite support including Drugs and side-effects
mechanical pumps and Transplant recipients need to
treatment some hearts will take immunosuppressant drugs
not recover leading to death. to suppress the immune system
Most patients are not in a and prevent rejection from the
suitable condition for a second time that have the operation
transplant to be considered. for the rest of their lives.
Long-term care We will monitor you regularly
Transplant patients are cared after surgery to look for
for life-long by the transplant evidence of acute rejection
team. Patients and their carers (damage to the heart by the
may contact the team at any immune system) and side
time for advice. effects of therapy including
infection.
Internationally and
nationally, overall survival Rejection is looked for by
after heart transplantation taking small samples of heart
is approximately 80% at one muscle under local anaesthetic
year, 70% at five years, and and is known as a biopsy of the
50% at 10 years. The one heart. Biopsies are performed
3A patient’s guide
routinely during the first 12 after the transplant and
months after a transplant with may require chemotherapy.
decreasing frequency. Many of these are curable
with appropriate treatment.
Rejection is usually successfully Cancers successfully treated
treated by increasing before transplant may also
your immunosuppression. recur.
Patients normally take three
immunosuppressive drugs 2. Reduced kidney function is
each of which has specific seen in most patients who
side effects. The number of receive the commonly used
drugs and the dose usually immunosuppressive drugs.
decrease significantly between Approximately 15% have
three and 12 months after severe kidney failure after
transplantation. The specific 10 years and a minority
side effects will be discussed (5% over 10 years) require
following the transplant, dialysis.
dependant on which drugs are
used. 3. Infection including bacterial
and viral infections.
There are a number of long- Cytomegalovirus (CMV) is
term side effects common to all commonly transmitted from
of the drugs which include: the donor. Preventative
drugs against infection are
1. An increased incidence of routinely given during the
cancer in patients on long- first three to 12 months but
term immunosuppression. CMV disease can occur later
Approximately 30% of after the transplant.
patients over 10 years
will develop a cancer; 4. Very common, but less
over half of these are skin serious side effects include
cancers which are rarely high blood pressure, raised
fatal. Lymph gland cancers cholesterol, diabetes,
(lymphoma) are also related weight gain, gout and
to immunosuppression osteoporosis.
and can occur at any time
4A patient’s guide
Chronic rejection It is important to remember
The other major long-term that despite these potential
problem associated with a problems most patients have an
heart transplant is chronic excellent quality of life after a
rejection which is damage to heart transplant.
the hearts blood vessels by the
immune system that occurs The best outcomes after
despite immunosuppression. transplantation are in patients
This results in a form of who have a healthy lifestyle;
coronary artery disease and is including maintaining a
seen in approximately 50% of healthy diet and weight; not
patients after 10 years. smoking or taking illegal
drugs; drinking alcohol in
You will have angiograms moderation; exercising; taking
to look for this condition at all medication as suggested
varying intervals. The disease by the transplant centre; and
tends to be diffuse, affecting attending outpatient visits and
small and large vessels in the tests as necessary to monitor
heart. Conventional methods the success of the transplant.
of dealing with coronary artery
disease (angioplasty and bypass Please feel free to ask a
surgery) are rarely feasible member of the transplant
because of the diffuse nature team if you have further
of the disease. questions or concerns about
the procedure.
Coronary artery disease rarely
causes problems in the first five
years after the transplant but
is the single biggest problem
after ten years and may lead
to heart failure. Unfortunately
re-transplantation is the only
option and for most patients
this is not possible for a
number of reasons.
5A patient’s guide Papworth Hospital NHS Foundation Trust Papworth Everard, Cambridge, CB23 3RE Tel: 01480 830541 Fax: 01480 831315 www.papworthhospital.nhs.uk A member of Cambridge University Health Partners Papworth Hospital is a smokefree site Follow us on Keep in touch with Papworth Hospital and receive a quarterly newsletter. Join our membership free of charge at www.papworthmembership.com Tel: 01480 364657 Author ID: Consultant Cardiologist Large print copies and Department: TCCU Printed: May 2013 alternative language Review due: May 2015 versions of this leaflet Version: 1 Leaflet number: PI 100 can be made available © Papworth Hospital NHS Foundation Trust on request.
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