Preparing for a transplant

Suitability for a transplant

Medical suitability

To determine your suitability for a transplant we will assess your general health and medical history. Both the surgery and the medications required to prevent rejection place a strain on your body.

You will be asked to undertake an assessment (called “the workup”) which will include medical tests such as:

• Heart tests such as echocardiogram and heart stress test
• Blood vessel imaging (via ultrasound)
• Blood tests for viruses such as hepatitis B/C, HIV, CMV (cytomegalovirus), EBV (glandular fever) and VZV (chicken pox)
• VRE bacteria swab
• Tissue typing
• Blood tests for tissue matching

If you are placed on the deceased donor list you will need to repeat some of these tests on a regular basis in order to remain active on the list. Your Kidney specialist (Nephrologist) will advise how often these tests need repeating based on your individual situation.

It is important that all these tests are kept up to date.

There are many health issues that can increase the risk of problems after a transplant:

• Diabetes—this is associated with many health problems, including blood vessel and heart disease and a higher risk of infections. Some of the immunosuppressant medications will increase your blood sugars and you will need more diabetic medication or possibly need to start insulin after the transplant
• Obesity—being significantly overweight increases the technical difficulty of performing the transplant operation. There is also an increased risk of complications such as wound and chest infections. The transplant surgeons will carefully assess this at clinic to determine if it is possible to perform the transplant operation safely. They may give you a target weight to aim for.
• Previous heart disease or stroke—the history will need to carefully reviewed to determine if a transplant operation is safe for you.
• Blood vessel disease—the surgeons must attach the new kidney onto blood vessels in the abdomen and legs. In some patients these blood vessels are diseased or hardened. It is important that there is an area of vessel they can safely stitch into. The kidney uses blood that would have otherwise gone to your leg, and so if the blood flow to the leg is not very good, it may become even worse after a transplant.
• History of cancer—we will need to go through the details of this with you and your treating specialist. In general terms the cancer needs to be ‘cured’.
• Active infection—such as foot ulcers need to be healed before transplant, otherwise the immunosuppressant medications may make the infection more serious and difficult to treat.
• Smoking—is associated with an increased risk of complications after transplant including pneumonia, wound complications and blood clots, and reduces the life span of kidney transplants. It also increases the risk of heart disease. The current policy is that you need to have been a non-smoker for at least 3 months.
• Non-adherence—Transplantation is successful only because of drugs that suppress the immune system. You need to take these medications, every day for the rest of your life. Missing tablets means an increase in risk of rejection. Every year there are patients who reject their kidney and return to dialysis because they 'forgot' to take their medication or they ran out and did not refill their prescription. This is a tragic waste of a kidney that could have gone to someone else.
• Low blood pressure—some patients have a very low blood pressure, and this can mean that a kidney transplant will not recover after the stress of donation. Unless the blood pressure can be improved, this might prevent safe kidney transplantation.
• Other serious diseases that will impact on your survival or ability to have a successful transplant.
• Patients who are generally frail and have a low level of fitness often struggle greatly with the stress of a transplant

Some patients become very unwell as their kidneys fail and their general health and fitness is poor. It is better for those patients to have a period of time on dialysis to regain their health and fitness and go into a transplant in the best possible shape.

Social and mental suitability

For some, finding out that they have a serious medical condition that involves major changes to the way they live and work, is a very challenging time that requires many adjustments. There are a number of practical arrangements you will need to consider before you undertake the transplant. Putting off your transplant until you are 'ready' is a very sensible approach in these situations. That way you can then focus on making your transplant a success rather than struggling with many issues.

If you think that you are not ready to be transplanted right now, please let either your local kidney specialist (Nephrologist) or the PAH Transplant Assessment Coordinators know so we can discuss this further

You can choose to move to inactive on the list–this is a good option so that the issues can be sorted out and then when you are transplanted you can focus fully on the task at hand. You do not miss out any waiting time credit if you are inactive. Your waiting time starts the day you start dialysis and is not impacted if you are inactive on the list.

Donor options

Once you and your Kidney specialist (Nephrologist) have decided that transplantation is a good option for you, it will be possible to consider what donor sources are available for you. Kidneys for transplantation can be from living or deceased donors.

If you have a living donor (someone willing and able to donate a kidney) we will start a workup to assess their physical and mental suitability for donation including their compatibility with your blood and tissue type. If they are not a suitable match, options such as the Australian Paired Kidney Exchange will be explored.

We strongly recommend that living donors have a different doctor to you so that they can get independent advice about their risk.

If you do not have a living donor or your donor is unsuitable, then the deceased donor list may be an option. Most kidney transplants come from people who have died in hospital, and whose family have consented to the organs being donated for the specific purpose of transplantation.

Access to the list is the same regardless of where you live in Queensland. If you live in Northern NSW it is possible for you to choose to be transplanted at the PAH but you will go on the NSW list and the kidney will be sent to Brisbane when it becomes available.

The workup and initial appointment

Once the appropriate tests have been completed your Kidney specialist (Nephrologist) will send a referral to QKTS for review. When this referral is accepted we will then make an appointment for you at the QKTS outpatient clinic at the PA Hospital in Brisbane.

At this appointment you will meet the transplant assessment coordinators and nurses, and have a look around the transplant ward. You will be assessed by a physician and a surgeon. We will go through an in-depth review of your medical, surgical and personal history. We give an overview of the risks and benefits of kidney transplants and will identify specific issues that relate to you and your prospects for transplantation.

You will also meet with other members of the QKTS team such as a social worker, pharmacist, psychiatrist, and anaesthetist.

We encourage you to ask as many questions as you can think of. You may wish to bring a list of questions with you. It is helpful to bring your support person with you to ask questions relevant to their role as “carer”. You can expect the clinic assessment to take most of the day.

What happens next?

Following clinic some patients will then be activated on the waiting list or be booked for a live donor transplant.

Some patients who are seen at clinic have health issues identified that need to be further investigated or treated. We may need you to come back for another visit. Some patients are assessed as not being suitable for transplantation based on a very high risk of the surgery or likelihood that their health and quality of life is very likely to be worse following a transplant.

Physical preparation

It is important that you are in good health at the time of your transplant.

General health

This includes maintaining your dialysis schedule and being well dialysed. It also means good fluid and blood pressure control and well controlled potassium and phosphate levels. Transplants may be cancelled or delayed for patients with high potassium levels or excess fluid. All infections must be reported, as it is very important that these are checked if necessary and treated quickly.

Body weight

Maintaining target body weight through good diet and fluid control is essential when preparing for a transplant. Patients who are very obese may be excluded from transplantation because of their high risk of surgical complications like wound and chest infections.

Dental check ups

After the transplant you will be on drugs that suppress your immune system and increase your risk of dental infections. You should attend regular preventative dental check ups.

Skin checks

Queensland has the highest rate of skin cancer in the world. The immunosuppressant drugs will further increase your risk of skin cancers. Getting your skin checked and any suspicious 'spots' removed is a good idea. Also protect yourself from any further sun damage.

Vaccinations

Make sure all your vaccinations are up to date. It is recommended that you are vaccinated against Hepatitis B and Chicken pox (VZV). We recommend the flu vaccine every year.

Other screening tests

Make sure recommended bowel, breast and cervical screening tests are up to date (as applicable).

Physical fitness

Having a transplant is sometimes hard work. Getting regular exercise and staying as fit as possible helps you recover more quickly from the transplant operation and gets you up and about much earlier. It also helps decrease your risk of developing diabetes after the transplant. Walk more! Use the stairs!

Practical arrangements

Remain informed

Ask questions and seek out as much information as you can about your kidney disease and how transplantation might affect you and your family. The Transplant unit regularly run education seminars and it is important that you attend one of these. For patients in remote areas, you may be able to videoconference in to these seminars from your local kidney specialist unit.

Support person

We recommend one family member or friend be nominated as your contact person so they can be a contact point for the surgical team, take responsibility for passing information to others as appropriate, and passing well wishes back to you. See more information about Carers.

What to bring

Once you receive a call for a transplant you may find it difficult to think clearly about what to pack. It is a good idea to have a list prepared and maybe even a bag packed. Here is a checklist of items that you may wish to bring with you:

• Current medications or list
• Diabetes monitoring equipment (if applicable)
• Warm loose-fitting pyjamas and dressing gown
• Toiletries including soap, a toothbrush, toothpaste, shampoo and slippers (enclosed slippers required in hospital)
• Books and magazines to read

For those patients who live outside Brisbane, it is likely that you will be in Brisbane for about eight weeks, so it is important that you bring clothes to wear when you are out of hospital. A support person can bring the additional items down in the first week after the transplant.

Travel arrangements and accommodation

If you need to travel a significant distance to attend the clinic you may need to arrange travel for yourself and your support person, along with accommodation near to the hospital. The cost of travel and accommodation is subsidised through the Patient Travel Subsidy Scheme if you need to travel more than 50kms from your home to attend our service. The PA Hospital travel services team can provide information on accommodation options that may be suitable.

Costs and other financial matters

Kidney Transplantation is publicly funded in Australia, however you can expect to incur a range of expenses such as transport to attend appointments, medications, accommodation and travel if you do not live near the Queensland Kidney Transplant Service.

Explore sickness, disability and superannuation payment options thoroughly and seek legal and medical advice.

Employment

If you are working you will need to make arrangements for leave to undertake the clinical workup and the transplant. Most patients will need at least 3 months off work following the transplant.

You may also wish to talk to your employer about your options for returning to work after the transplant such as a gradual return to work, part-time or flexible arrangements.

Legal and Advance Care Planning

It is important to make sure any legal matters such as Enduring Power of Attorney and your will are up to date. You should also complete the Metro South “Statement of Choices” documents or an Advance Health Directive.

Getting the call for a transplant

Once you are on the organ waiting list, be prepared at all times for the phone call advising of a donor kidney, the call can come at any time of the day or night. The call is almost always from a “private number” or with caller ID blocked so it’s important that you keep your phone on you and be prepared to answer every call.

The phoning doctor will advise where to present to on arrival, but you are responsible for getting yourself to the transplant unit. It is important to have a transport plan in place. On arrival, proceed to ward 4BT (the transplant ward) on the 4^th floor of the main building (Building 1), or via the emergency department after hours.

There are cases where the transplant may not go ahead due to concerns about the quality of the donor kidney or any aspect of your current health status. This can be disappointing, but it is for your safety and we will fully explain the circumstances if this occurs.

Preparing for surgery

A general anaesthetic is required for the transplant operation.

Do not have anything to eat or drink after you get the call unless you are told it is OK to.

Once you have been admitted to the ward you will undergo a range of pre-operative checks and start on anti-rejection medications before being transferred to the operating theatre.