Who gets a Lung Transplant?
A lung transplant may be recommended for patients with advanced lung diseases including
- Cystic Fibrosis
- Pulmonary Fibrosis
- Chronic Obstructive Pulmonary Disease (a group of diseases that includes emphysema)
- Pulmonary Hypertension
In Ireland, there are significantly more potential recipients than there are donors. As such, there are strict criteria which must be met to ensure one is eligible for a transplant and that your body is strong enough to get through the surgery and that you have the social supports at home to make sure you can get through the follow up after surgery. To assess your other medical illnesses in detail and to ensure that you meet the criteria for undergoing a transplant, an inpatient detailed “Pre-transplant assessment” is undertaken which generally takes 7-14 days of testing (several radiology scans, blood tests, transplant multidisciplinary team reviews and heart tests). Not everybody assessed for transplant is deemed eligible for transplant listing either because of findings during the testing process (such as significant heart disease, serious infections, silent cancers, your weight is too high or too low) or because the potential risks and complications of the surgery itself for each patient. In this case the transplant team will clearly tell you the reasons you are not eligible.
If you are deemed eligible for lung transplantation you will be placed on an active lung transplant waiting list whilst awaiting a suitable donor. It is important to note that some patients while awaiting a lung transplant deteriorate to a level that they can be too sick to tolerate the surgery of the transplant. Some people use the term the “Transplant Window” to indicate that one is sick enough to gain benefit from a transplant but not so sick that one cannot tolerate the physical stress and strain a transplant will have on your body.
your weight (your body mass index (BMI) must be above 17.5 but below 28 to be actively listed for lung transplant in Ireland), your medical and surgical comorbidities, your psychological and social supports and your ability to adhere to very strict medication regimes after a transplant.
What is involved in the “lung transplant assessment”?
The lung transplant assessment is generally performed as an inpatient in the Mater Misericordiae University Hospital. This assessment is done to see if you are suitable for a lung transplant. Occasional some other specialised hospitals may be able to facilitate some of the transplant tests. There is a waiting list to come in for a transplant assessment and beds for assessment can become available outside of normal working hours and even on the weekend- these bests are offered to the sickest patients on the waiting list and their availability is dependent on a number of other factors within the hospital. Occasionally only some of the tests are done as an inpatient and either completed as an outpatient or if the transplant bed is needed for another emergency a patient may be discharged and brought back in again when the next suitable bed becomes available.
If you are not given a decision on your suitability to be placed on the active transplant list before you go home, the Transplant Co-ordinator (or another member of the transplant team) will contact you when your case has been discussed at the Transplant Conference.
There is a Mater Transplant handbook which you can read and throughout your assessment members of the medical and nursing team will ensure that you have an opportunity to discuss the contents of this booklet. The information enables you to go through the various stages of the transplant process to assist you to make an informed decision regarding transplantation. It is you and your families’ opportunity to discuss concerns or issues about the process.
Curing your assessment you will also meet a physiotherapist who will assess your condition and give you advice about activity and exercise. You may be advised to attend pulmonary rehabilitation to get fit enough for transplant (this is generally an requirement for patients with COPD to get onto the active lung transplant list).
As part of the process, a family meeting will be held during your stay. This is to ensure that there is clear communication regarding what is involved in the assessment process, life on the active transplant list, and events at the time of a donor offer.
The medical and nursing team will explain the tests and support you through the assessment process. Transplantation is a procedure with significant risks; therefore a thorough physical and psychosocial assessment is carried out. This is to ensure that Transplantation is the best option for you.
If you are accepted on to the transplant waiting list you will be reviewed regularly by the medical/nursing team in MMUH and/or your local hospital. If there is deterioration in your condition, or other issues arise, such as kidney problems, you may need further treatment to make you fit for the transplant operation. If a change in your medical condition adversely affects the chance of transplantation being a success, you may need to be taken off the list either temporarily or permanently.
Who is involved in the transplant Team?
The multidisciplinary Transplant Team consists of Transplant Surgeons, Transplant Physicians, Post Transplant Nurse, Transplant Co-ordinators, Nursing staff, Doctors, Social Worker, Physiotherapist, Pharmacist, Dietician and the Psychologist/Psychiatrists.
What diet should I eat whilst awaiting transplant assessment?
Every patient has different requirements for their needs. A patients body mass index (a weight to height index) has to be in a specific range for a transplant. For example, the lung transplant program requires one’s BMI to be above 17.5 but below 28.0 to be on the active lung transplant list. During the assessment you will meet the dietician who will advise you on a diet that is nutritionally balanced depending on your needs; this will support your recovery from surgery. Patients with lung disease have a variety of problems including poor appetite and weight loss, obesity, diabetes management and high cholesterol. It is important that you stay within the healthy weight range for transplant.
How can I prepare myself whilst waiting for a Transplant?
Waiting for a donor organ can be a stressful experience, especially because the amount of time you’ll have to wait is unknown. There are many things you can do to prepare yourself while you wait for a donor lung to become available. Changing your lifestyle before your transplant will help you adjust after the transplant.
Below are some guidelines to follow:
- Try to stay as healthy and physically fit/conditioned as possible by carefully following the recommendations of the Lung Transplant Team.
- Take your medicines as they are prescribed and notify your transplant coordinator if antibiotics are prescribed, if your steroid dose changes or if you are hospitalized for any reason.
- Notify the transplant coordinator of any medications that can thin out the blood- some of these medications mean one needs to come off the transplant list (eg Apixaban, Clopidogrel, Dabigatran, Ticagrelor)
- Weight management is very important while waiting for your transplant. You should ask your doctor what your weight in kilo’s should be between to have your body mass index kept between above 17.5 but below 28.0 for the lung transplant patients.
- We require that you quit drinking alcohol for minimum of 6 months if you drank excessively in the past (this is defined as two or more drinks per day such as beer and wine).
- Perform your breathing exercises and maintain your exercise program, as directed by your physician.
- Stop and rest if you experience any discomfort, shortness of breath or chest pain during any activity.
- A physiotherapist can work with you to plan and develop an exercise program that will give you the greatest benefit before and after transplantation.
- Continue your enrolment in a local pulmonary rehabilitation program and remain firm in your commitment to the pulmonary rehabilitation program- it is a requirement that patients with COPD being referred for lung transplant have completed pulmonary rehabilitation within the previous 1 year when it is available locally.
How long will I be waiting for a transplant?
We don’t know how long you will have to wait for a lung that is suitable for you will take. This will depend on us finding you suitable donor organs and is not determined by the length of time that you have been waiting on the transplant list.
We select recipients mainly based on blood group, recipient size (height and weight), results of antibody tests and tissue typing, and your own underlying clinical condition.
Once you are placed on the transplant list it could take anytime from days to years for the right organ to come available along for you. During this waiting period your condition will be reviewed by your local hospital and the Mater Transplant Team. Your referring doctor will still be responsible for your care during this period. If your condition changes, new treatment started, or if you deteriorate between your visits, you and your referring consultant and/or general practitioner should keep us informed.
If there are changes in your condition whilst you are on the list, the doctors may need to re-evaluate your suitability for a transplant and remove your name from the transplant list, either temporarily (to allow for your treatment), or permanently. If this happens you will be informed and given an explanation and a follow up plan. Unfortunately suitable organs do not become available in time for everybody on the transplant list.
I have Cystic Fibrosis, Is a Lung transplant referral the right decision for me right now?
The time of transplant can be a difficult question and your primary respiratory consultant usually is the best person to discuss this with you. The Canadian and Australia CF doctors have developed a link and patient education resource for this question via the link: https://decisionaid.ohri.ca/decaids.html
Are there tips for helping to cope whilst awaiting a lung transplant?
Undergoing a transplant can be a time of great emotional and practical upheaval with many patients experiencing issues of concern.
One particular stage during the transplantation process that patients can find difficult is the time on the waiting list. Patients cope with life on the waiting list in very different ways, some of which can make this time easier for you and your family.
Here are some points that may help:
- Make plans about being called for a transplant from day you are put on the waiting list. It is never too soon to prepare.
- Keep a bag packed and make plans with your family about who would accompany you to the hospital. Upon listing the Transplant Co-ordinator will discuss the travel details with you if you were to be brought in for a donor offer.