Lung Transplant Assessment
What to Expect – Information For Patients And Family
We would like to welcome you to the Mater Hospital. We hope that the following information will be informative and reassuring. As a team, we aim to provide a friendly and relaxed atmosphere where we hope to answer all your questions as openly and honestly as possible.
What shall I bring to hospital?
Many people prefer to wear their own clothes during the assessment period as they feel more comfortable, however, you will need nightclothes and toiletries for your stay in hospital. Tracksuits and gym shoes are often useful especially if an exercise or walk test is indicated.
Although there are busy periods during the assessment period there are also quiet times. You may wish to use the time resting, although some people bring books, magazines, walkman, etc. Please bring with you a list of your current medications including tablets, syrups, creams, sprays etc.
It is advisable that a family member accompanies you during the assessment period.
Where can my family stay?
Unfortunately there are limited accommodation facilities in the Mater Hospital at present. If you are travelling from outside of Dublin and have relatives or friends in the Dublin area, you may wish to make arrangements to stay with them. Alternatively you may contact the transplant co-ordinator and arrange a time for you family to meet members of the team.
During the assessment period, visiting times are not strict; your partner may stay with you throughout the assessment period. However, when you arrive on the ward please check this arrangement with the nurse in charge.
What are the visiting times?
The normal visiting times for other family members are as follows:
- Daytime 2-4pm
- Evening 6-8pm
Facilities are available in the hospital to make your family’s stay as comfortable as possible:
Level 3 Coffee Shop: (New Mater Building) -Mon – Friday
Coffee Shop: (Ground Floor of New Mater Building) Mon.-Friday: 08.30am – 5.00pm, Sat & Sun.: 12.00pm – 5.00pm
Hospital Shop: (Ground Floor of New Mater Building)
Mon.- Saturday. 08.30am -8.00pm
Sunday: ‘Hospital Round 08.30am – 5.00pm
There are many shops and banks close by to the Mater Hospital, the nursing staff will assist you with directions.
What will happen during the Assessment?
To be told that a transplant is the only treatment available is confirmation of the severity of your illness, so don’t be afraid to ask questions, your transplant team will answer them as openly and honestly as possible. During your stay, a series of investigations may be performed, some of which you may have had done before. Here is a list.
An x-ray machine will photograph your heart. This will show the doctor the size and exact position of your heart.
CT Scans high resolution CT scanning
Detailed Lung Function Tests
This machine will record the rate and rhythm of your heart.
This is a scan, which will show the internal structure of your heart.
Cardiac catheter – this is normally performed under a local anaesthetic
A small drip is inserted into the top of the leg; the catheter then moves along with the blood flow through the large blood vessels and the various chambers of the heart.
This will indicate if there are any blockages in the large blood vessels and will allow pressures to be measured within each chamber of the heart and the various arteries. This test gives important results, which are vital in assessing whether a heart transplant operation is feasible.
Kidney test [24hr urine collection]
This involves your urine being collected in a bottle over a 24hr period. This is then sent to the laboratory for examination. The results will indicate how well your kidneys are working. This is also a very important test.
A variety of blood tests will be taken. An important one will measure your antibodies [this will be discussed at the assessment]. Blood will also be taken to find out your blood group.
What will the results tests tell?
- Whether you need to have a transplant
- Whether your body is fit enough to tolerate the operation and the medication which is required after a transplant operation.
- Whether transplant is not a suitable or safe operation for you
What happens after the Assessment?
The transplant team will decide on the best option for you as follows:
- You may be offered a transplant operation and should you wish to take this step you may be placed on the “active waiting list”
- You may be suitable for a heart transplant operation but are too well at present. In this case you may be placed on a “provisional waiting list”.
- Further investigations may required therefore the decision will be deferred and discussed at a later date.
- Transplantation may not be a suitable form of treatment
What is the Active Waiting List?
The ‘active waiting list’ is for those patients whose condition is deteriorating and not likely to get better; therefore a transplant operation is advised. Should you decide to take this step you will be placed on the active list. However, this process normally takes 2-4 weeks as several steps must be taken first:
1. A visit to the dentist is essential; any dental work required must be completed before you go onto the active list.
2. Cytotoxic Antibodies: This is a special blood test required before we can proceed with the operation.
We will help you organise a bleep and discuss travel arrangements for the night of transplant. A visit to the intensive care unit can also be arranged, should you wish.
What is the “provisional list”?
A ‘provisional waiting list’ is for those people whose condition is not imminently life threatening but may at some point require a heart transplant. Your referring cardiologist is responsible for your care and if or when your condition deteriorates he/she may refer you back to the transplant team.
Who will I meet during the assessment period?
There are many people who will look after you during the assessment and throughout the transplant period. The following is a list of the transplant team and their role.
The Consultant Surgeon: During the assessment, you will meet a Consultant Surgeon. The Consultant will make the final decision regarding the feasibility of a heart transplant operation.
Transplant Co-ordinator: The transplant co-ordinator will organise you assessment week and will discuss the risks and benefits of transplantation. She will support you and your family throughout this difficult period and will visit every day to answer your questions.
Transplant Nurse: The transplant nurse will also visit during the assessment period and discuss the medication you will need to take after transplant. She will also discuss the lifestyle changes and recommendations after transplant. The nurse is responsible for your care after transplant.
Social Worker: The social worker is an important non-medical member of the transplant team and will discuss any financial or family concerns you may have.
Physiotherapist: The Physiotherapist will visit and explain the importance of chest physiotherapy and exercises to prepare you for the transplant operation.
Dietician: advice from the dietician is very important and will help you prepare for a transplant operation.
Psychiatrist: The psychiatrist will assess your suitability for a transplant operation.
Post Operative patients: It is always helpful to chat to someone who has had a transplant. The transplant co-ordinator will try to arrange this meeting should you wish to meet a member of the heart transplant association.
Remember, until all the investigations are complete and discussed with you, no final decision can be made regarding the feasibility of a transplant operation. Transplantation may or may not be the best choice of treatment.
We are well aware that this is an anxious time for you and your family. You may have waited a while for transplant assessment and if a transplant is the best option for you the waiting period continues. The one question we can never answer is how long you will have to wait before a suitable organ is matched for you. Matching of organs is based on Height/Weight and Blood Group; you are unique so finding an organ that is right for your body takes time. It could take weeks, months, or longer. While you are waiting, use the time wisely and remember how important it is to stay positive and as fit as possible. We do understand that there may be good days and bad days and that moods can be changeable.
The transplant team are here to support you and your family throughout this difficult time, so if you have any concerns or more importantly just wish to chat – give us a ring.
We look forward to meeting you and helping you towards a better and healthier life.
Barbara Parlon (01) 8034274, bleep 3229
Emer Ryan (01) 8032986, bleep 2988
Mater Hospital Switchboard (01) 803200