Heart Transplant

Your heart is a muscular organ that sits in the middle of your rib cage. About the size of a clenched fist, your heart pumps blood around your body providing circulation to the major organs.

Blood that is pumped out from your heart delivers oxygen and nutrients around your body while absorbing waste products and carbon dioxide. The deoxygenated blood then travels back to your lungs to be replenished with oxygen and nutrients.   If disease or injury weakens your heart, your body’s organs won’t receive enough blood to work efficiently at the optimal level. 2

Effects of a non-functioning heart

If you have been diagnosed with heart failure this means your heart can’t pump enough blood to meet your body’s needs.  The two main problems that occur are when the heart can’t pump with enough force or if the heart can’t fill with enough blood.  Heart failure can affect either the left or right side of the heart and in many cases both sides of the heart.1

Symptoms that patients can experience are: breathlessness, fatigue, swelling around the feet, ankles, stomach and neck veins.1  Other symptoms include reduced appetite and need to urinate at night. In more advanced cases, it can make you breathless after very little physical activity or even when you are resting.  Sometimes the breathlessness can become so bad that it wakes you up from sleep or you can’t lie flat.5

Diseases resulting in heart failure

Heart failure can occur when other conditions have damaged or weakened your heart, or the main pumping chambers in your heart become stiff and not fill appropriately between beats. As your heart becomes weaker, over time, it will not be able to keep up with the demands of pumping the blood to the rest of your body. The most common conditions that cause heart failure are given below:

  • Coronary artery disease
  • Cardiomyopathy
  • Viral infections
  • Inherited (familial) forms of heart disease
  • Leaking heart valves.
  • High blood pressure
  • Congenital heart disease
high blood pressure

Treatments

Transplantation

A small percentage of those with heart failure where conventional medical therapy no longer helps will need a transplant.

A team of transplant doctors will assess your eligibility for a transplant, and if you are suitable and willing to have a transplant, you will be put on a waiting list.

When a suitable donor is available, you will be called to have a heart transplant. To see more on transplant waiting lists and allocation of organs click here.

Donation of a heart

Donation of a heart – Deceased Donors

In Australia, many people sign up to donate their organs after their death. Donor heart transplants are from individuals that have died from brain death or circulatory death and have consented through the Organ Donor Register or their next of kin have agreed to the donation. Donors cannot be directed to a specific recipient, and enter into a rigorous and unbiased patient matching scheme. (Appendix at the end of the section provides more on the types of deceased donations).

The average waiting time for a heart in Australia is 6 months 8 and depends on your blood group, cross match and size.

Getting on to the waiting list

You will be placed on the waiting list once you have been assessed to be suitable and have given your consent for a transplant.  At any point while you are waiting, you have the choice to reverse your decision to go ahead with the transplant. The transplant team may also take you off the list or put you on hold for medical reasons. These reasons will be clearly explained to you.

The Transplant Society of Australia and New Zealand (TSANZ) have specific criteria that determine if you would be eligible to be on the waiting list.

Below is some information on the criteria specified in the TSANZ protocol for you to be put on the waiting list. For more information, please click here.

getting onto the waiting list

Heart recipient suitability criteria

Inclusion criteria for heart transplantation are:

The essential indication for heart transplantation is the presence of end-stage heart disease for which no alternative therapy is available. End-stage heart disease may be manifested as:

  • Irreversible cardiogenic shock (e.g. complicating acute myocardial infarction)
  • Intractable symptomatic heart failure (NYHA Class III-IV) despite maximally tolerated evidence-based medical therapy
  • The need for permanent mechanical cardiac support, i.e. ventricular assist device (VAD) or total artificial heart (TAH)
  • Frequent discharges from an AICD or recurrent ventricular arrhythmias
  • Intractable angina despite optimal medical, interventional and surgical treatment.

Exclusion Criteria7

  • Active malignancy
  • Complicated diabetes
  • Morbid obesity – [BMI] > 30
  • Uncontrolled infection

Inability to comply with complex medical therapy

  • Active substance abuse.
  • Irreversible degeneration/damage of other organ systems that precludes rehabilitation after heart transplantation
  • Acute medical conditions

Recipient preparation for transplant

While on the waiting list:

  • You must have monthly blood samples sent to the Australian Red Cross Transplantation services for antibody tissue tests to be carried out.
  • Ensure that you are contactable at ALL TIMES via telephone or mobile phone.
  • If you are going away/traveling, or have been admitted/discharged from the hospital, please notify your transplant coordinator.

You will be required to visit the hospital frequently for the first few months after your transplant surgery and can plan ahead while you are waiting on:

  • How you will travel to and from the clinic during this time
  • Accommodation during this period if you are a rural patient
  • Accessing IPTAAS (Isolated Patients Transport and Accommodation Assistance Scheme for those staying in NSW) or equivalent schemes in other states (VTAAS etc)
  • Taking time off work, if you are in the workforce
  • What you will need to carry with you if you are going to stay away from home during this period
  • Care for your dependents (children or pets) while you are away                      

The call!

When there is a possibility of a transplant, you will receive a call. You can receive this call any time of the day or week. Your transplant unit will advise you on what you need to do when you receive the call. It is exciting to be on your way to a new beginning to your life.  Also receiving a call does not guarantee that you will be receiving the transplant, as a number of factors may result in the organ not being suitable for you (e.g. infection or disease of the donor heart).

The surgical operation

surgery operation

Heart transplant operations can take from 4 up to 10 hours. This depends on your medical condition, any previous heart or lung surgery and the condition of the donor organs. There are two types of heart transplants:

  • Orthotopic heart transplants: This involves removing your diseased heart through an incision in the middle of your chest, and replacing your old heart with the donor’s heart. This is the most common type of transplant carried out.5
  • Heterotopic heart transplants: This involves attaching the donor’s heart to your old heart. In this case, the donor’s heart acts as an assist pump for your diseased heart.5

After your surgery, you will remain in ICU and monitored closely, and will be moved to the ward when you no longer need intensive care.

Medications

After your transplant you will immediately start taking a host of medications to keep your new organ healthy. These medicines will keep your immunity low, so that your body does not reject the new heart. Over time, the doses of the medicines will drop but you will have to take some of them throughout the life of your transplant.

Ensure you always have a ready supply of medications especially when you are traveling because these medications are not available easily. Ensure you carry a doctor’s letter if traveling overseas.

In many instances, you will need to keep track of all your medication spending through the Pharmaceutical Benefits Scheme.  Once you reach a certain limit each year, the price of the medicines will be significantly reduced or free (e.g. for those with a Health Benefits card or a Pensioner Concession Card).

Discharge from hospital

Your hospital stay can last from 10 – 14 days depending on the post-operative complications that can extend your stay. Your transplant nurses will encourage you to participate in your health care and physiotherapists will help you mobilise and get you ready for discharge.

Discharge from hospital is often an exciting and significant step in your road to recovery.  A lot has gone on behind the scenes to ensure you have been able to receive this transplant, enabling you to regain your health or improve your quality of life.

Be sure to thank all the staff at the hospital, who were involved in your care, as they would surely appreciate it.

Blood tests and monitoring

You will be required to visit your doctor on a regular basis.  Initially you will need to visit the hospital for tests frequently for a few months and then less frequently over time. If seeing multiple doctors for different things, please ensure that all doctors know what medications you are taking.  Some medicines interact with other medications and must be taken with care.

Recovering at home

For at least a few weeks afterwards, do not over-do things.  But also do not lounge around all day.  The aim of the transplant is for you to return to a normal life style. Start socialising with friends, family and meeting new people as soon as you feel well enough.

Healthy lifestyle

Let good nutrition and exercise be part of your healthy lifestyle. Everything and anything in moderation until you are completely stable.

  • Avoid foods that may interact adversely with your medication.
  • Maintain good food hygiene while preparing your meals.
  • Maintain personal hygiene, including dental hygiene
  • Clean open wounds and cuts with antiseptic. Consult your GP if your wound becomes red and painful.
  • Always check with your transplant doctor if another doctor suggests you should receive any immunisations. The Mantoux test for tuberculosis and immunisations for yellow fever and polio for example are not recommended as are any other immunisations using live or weakened bacteria or viruses.  However, influenza vaccinations or immunoglobulins are okay.
  • Reduce the risk of infection by maintaining your hygiene and reporting symptoms early. If possible, avoid coming into contact with people who have a cold or the flu.
  • Avoid coming into close contact with children or people with chicken pox or measles and other viral and bacterial infections.

For more on caring for your new heart after discharge and the precautions to take, please refer to the section on “After your Transplant”.

Stages of returning to normal activity, including work

Resuming normal activities gradually, only if you feel up to it.  Engage in normal activities like catching the bus and going to the movies, and attending parties.

It is recommended you start slowly in the first instance.  This also includes sexual activity. If in doubt, ask your doctor.  Don’t be shy – they have heard it all before.  It is also important that female recipients discuss contraception methods to prevent pregnancy in the early months following a heart transplant.

Returning back to work is a big step and you should carefully consider and plan your return well in advance. Consult with your transplant team before you resume work. There may aspects of your job that you may not be able to resume immediately or even in the near future. Please refer to the section on “life Skills” (Place link here) for more information.

Driving after Transplant Surgery

You may wish to resume driving as soon as possible after your surgery. You must check with your doctor to clarify when it is safe to drive. You can resume driving after six weeks post-transplant depending on the type of surgery you have had and the size of the wound. Before driving, ensure that your wound is healing well, that you are alert and not fatigued, no longer experiencing significant pain or taking medications that can cause drowsiness.

For information on assessing fitness to drive, please visit the website www.austroads.com.au . The guidelines on this website outline the responsibility drivers, health professionals and the licensing authorities. The rules for driving are very clear and are set out to protect you, the transplant doctors and the general public.

Respect your new organ

Smoking increases the risk of chronic rejection, cancer and heart disease. Do not smoke!

During the first few months after the surgery it is advisable not to consume any alcohol as you are monitored for drug levels and liver and kidney functions. After 3 months, once your transplant team approve, you can have alcohol in moderation. Two standard drinks per day is usually acceptable.

Enjoy life

After dealing with the effects of long-term illness, you may feel exhilarated when you awake after surgery to find those symptoms gone. Transplant is major surgery. It may take time to get back to eating and sleeping normally, moving around, and managing your own care. Don’t be discouraged. Most recipients report feeling much better after transplant, while others take longer to feel better, move around, and manage their care.

You should live your life to the fullest and respect your donor’s gift.

Make the most of life!

Saying “Thank You”

For the family of a donor, receiving a message of thanks is very special. The decision to write to your donor family is your own choice. It may help you to know the donor family will find comfort from the letters they receive from the recipients of their loved one’s organs. Your transplant coordinator/nurse/social worker will help you write the message. Keep in mind that the donor family has suffered the loss of a loved one and may choose not to respond for a long time, or at all. Don’t let that keep you from writing again.

Bibliography

  1. National Heart, Lung and Blood Institute: “What is the Heart” updated on Nov 17 2011. Referred to the link https://www.nhlbi.nih.gov/health/health-topics/topics/hhw viewed on 6/06/2016
  1. org: http://www.heartfailurematters.org/en_GB/Understanding-heart-failure/What-goes-wrong-in-heart-failure
  1. org:http://www.heartfailurematters.org/en_GB/Understanding-heart-failure/Symptoms-of-heart-failure
  1. Mayo Clinic: Diseases and Conditions: Heart Failure – http://www.mayoclinic.org/diseases-conditions/heart-failure/basics/causes/con-20029801 link viewed on 27 June 2016
  1. Heart Foundation: Heart Transplants and Organ Donation – https://heartfoundation.org.au/images/uploads/publications/Heart-Transplants-Donations.pdf Link viewed on 27 June 2016
  1. Information Manual for Heart, Heart Lung and Lung Transplant Recipients – Heart and Lung Transplant Unit – St. Vincent’s Hospital, Sydney
  2. The Transplantation Society of Australia and New Zealand Clinical Guidelines for Organ Transplantation from Deceased Donors. Version 1.0 April 2016
  3. Australian and New Zealand Cardiothoracic Organ transplant registry

This page has been produced in consultation with and approved by St Vincent’s Hospital Transplant Unit.