From the first time you realise that you have a health problem, to the time that you are discharged from hospital after your transplant, the journey has many highs and lows, thrills and spills. The expert transplant team will look after you all the way through the journey, and help you to re-adjust to your new life.
We have split the journey into a number of parts, so take your time and read through them. We hope this will give you some idea and reassurance of the journey ahead.
When you first feel unwell you will normally go and see your GP, who will give you a thorough medical examination and will discuss with you any problems you may have. Your GP may send you for some tests and if he can see more major problems, refer you to a cardiology or respiratory specialist. After further examinations, and tests by your specialist, it may be suggested that you be referred to the specialists at a heart or lung transplant program.
Normally, your first contact with the Alfred transplant program will be an appointment with a cardiologist or respiratory physician working with the program. The doctor will take a medical history, conduct a physical examination, discuss with you what is involved in having a heart or lung transplant, and answer any questions you may have.
This is your opportunity to find out what is involved so that you can make an informed decision as to whether you wish to proceed with the formal assessment process. The timing of an assessment for transplant takes into account whether a patient is sick enough, but also quality of life is important. This is an individual decision. What also must be considered is the difficulty in finding suitable donor organs, taking into account your blood group, size and other matching factors. The patient and the medical team, together, must reach a decision about when to proceed to assessment. At this stage you are not on an official waiting list for a transplant, as there are still many steps to be taken before you reach that stage.
Assessment for transplant
The very significant risk of heart or lung transplantation usually needs a three day inpatient evaluation. This is to check firstly that a transplant is a feasible option and secondly, to make sure that the patient is sick enough to require transplantation and justify the substantial risk.
You'll undergo a large number of tests which look at not only your heart and/or lung condition, but will also determine whether you have other conditions which would exclude you from being suitable for transplantation.
When all your tests are completed the transplant team can decide on your suitability for transplantation. Not all people are suitable for organ transplantation. Continued smoking or significant alcohol intake, for example, will prevent you being considered for transplantation. If there is any other disease present, for example kidney disease or severe osteoporosis, you may not be suitable for transplantation. You will be given an appointment to attend the Transplant Assessment Clinic where all the treatment options are discussed with you. It is strongly recommended that you be accompanied by a family member or friend for this appointment.
During your assessment you will meet many members of the team including:
- Physicians (Cardiologists or Respiratory Physicians)
- Social Worker/Counsellor - Psychological Evaluation
- Occupational Therapist
- Nursing Staff
- Transplant Coordinator
- Pastoral Care
|More details on these roles can be found here|
The tests you will have during your assessment include:
- Gated Blood Pool ScanAngiogram (Cardio Catheterization)
- Right Heart Catheteriztion
- CT Scan
- Lung Function Test
- 24 Hour Urine Test
- Dobutamine Thallium Heart Stress Test
- VQ or Ventilation Perfusion Scan
- Dexa Scan
- OPG (Orthopandontogram)
|More details on these tests can be found here|
Prior to your transplant you should have, or be up to date with, the following vaccinations:
- annual flu
- polio booster
- hepatitis B
All these vaccinations can be arranged by your local doctor.
Making the transplant decision
When you make a decision to go on the waiting list for a heart or lung transplant, you are making a lifetime commitment to adhere to the medical regime prescribed by the transplant team. In addition, you are committing to:
- regular visits to the transplant outpatients clinic
- taking new medications as prescribed
- attending ongoing education and information sessions
- notifying the clinic of any changes in your condition
- adhering to the diet prescribed for you
|Patient support while you wait|
Recipient / donor matching
The matching of donor organs is a complicated process which takes into account:
- blood group
- recipient/donor size (when matching for lungs, the lung measurement is from apex to base of each lung then across both lungs together at the widest point)
- whether or not you have had Cytomegalovirus (CMV)
- compatibility tests between donor and recipient blood
- how sick a person is. A patient whose condition is deteriorating will be given priority where possible.
Being listed for a transplant - how long will you wait?
Waiting time for transplant varies greatly and it is impossible to give you an estimate. You should discuss this with the cardiologist or respiratory physician assessing you for a realistic estimate. You'll be reviewed regularly in the transplant outpatient clinic while you are waiting and you are advised to maintain contact with your own general practitioner and specialist. If there is any change in your condition or you go into hospital during this time, you or your doctor should contact the transplant team.
Transplant education sessions are conducted monthly to update and reinforce information while you wait for your operation. Monthly blood tests are also required while you are on the waiting list to ensure a fresh sample is available to cross match with the donor for compatibility.
Your transplant coordinator will aim to contact you by mobile phone - it's important to ensure you keep your phone charged and with you at all times.
If you miss a call, you can contact the transplant coordinator via the switchboard on 03 9276 2000. You will be given instructions when to arrive at the hospital.
At the hospital you will then be asked to sign consent forms.
|Next - Being An In-Patient >|