Transplant
There may come a time when your CF clinic team talks to you about the option of transplant. Transplant is a very personal decision and there are a number of things for you to consider before you decide on the best option for your individual situation.
The most common type of transplant people living with CF have is a lung transplant, which is what the following information focuses on. However, people living with CF may also need to have other organs transplanted, such as the liver and pancreas.
”A post-transplant patient once said ‘even when you’re fully ready, you’re not ready’... this captures the feelings related to the transplant process. No one can completely prepare for such an overwhelming experience. Often, it’s like plunging into the deep end of the pool – a relief when you surface and it’s over. Some of the emotions that revolve around transplant include denial, fear, panic, sadness, regret, hopefulness and excitement. The process of being ‘worked-up’ and listed is a rollercoaster of emotions and it helps to keep life as normal as possible – a good routine, plenty of sleep, healthy eating and exercise. Social support is very important – make sure you involve your loved ones in this process and give them an opportunity to support you.
CF psychologist on preparing for a transplant
Lung transplant in Australia
The first lung transplant was performed in Australia in 1990 and there are now about 150 performed around the country each year. Australia has some of the best transplant results in the world and survival after a lung transplant is higher in Australia than anywhere else. Most transplant recipients report being able to return to a relatively normal life afterwards.
The four centres for lung transplantation in Australia are
- The Alfred Hospital, Melbourne, VIC
*Paediatric and adult - St Vincent’s Hospital, Sydney, NSW
- The Prince Charles Hospital, Brisbane, QLD
- Fiona Stanley Hospital, Perth, WA.
A treatment, not a cure
While a successful lung transplant can make a significant difference in how you feel on a daily basis because it provides you with a healthier set of lungs, it’s a treatment, not a cure for cystic fibrosis. Lung transplants may bring other complications, such as the risk of organ rejection.
The workup for transplant is extremely thorough and extensive. All the body’s systems are screened and treatment is provided to optimise lung function, nutrition and mental wellbeing.
The guidelines for consideration for a lung transplant in people with CF are
- Low lung function (FEV1 <30% predicted or a rapid decline, especially in females)
- Exacerbation requiring intensive care unit (ICU) admission
- Increasing requirements for antibiotics
- Pneumothorax (when air leaks into the space between the lung and chest wall)
- Uncontrolled coughing of blood
- A significant decline in quality of life.
However, you, your family and your CF Clinic team should talk about the transplant, including what is involved and whether it is something that you would like to consider if needed, well before you reach the guidelines. Deciding whether to be considered or even having a transplant is a personal decision that depends on each person’s individual circumstances.
Some of the questions you should consider about transplant include
- What treatments and medications will I cease and begin after transplant?
- What is involved in post-transplant recovery?
- How long will I be in the hospital for?
- What rehabilitation is involved?
- Which clinic team will I have regular appointments with after my transplant? Will it be my CF Clinic team, the transplant team or both?
- What health-related things should I do to prepare for a transplant?
- What home-related tasks do I need to prepare for?
- Who will be my support team while I recover?
- What support and information are there for my partner/family/support team?
Life before transplant
Evaluation and preparation
”My team spoke to me about transplant for a few years, but I was in denial. I did everything I could not to think about it. I wish now, I had had that discussion earlier. It’s hard to hear, but the team only raises this when it’s time."
Adult with CF
There may be reasons why you would choose not to have a transplant or may not be a suitable candidate. It is important to discuss your options with your CF team. Some people do not wish to go through the process of being considered for a lung transplant and wish to live their lives without intervention. It is okay to choose this path.
If you do decide to go through the transplant assessment to see if it is the best option for you, you will be referred to the lung transplant team. This time can be overwhelming even for people who are already well versed in medical lingo and the hospital environment. The assessment process for transplant is extensive and involves many tests, including:
- Lung, heart, and kidney function
- Bone scans
- Blood tests
- Exercise testing
- Social work consultation
- Psychiatric assessment
These tests assess whether you are suitable for transplant and are ideally performed before your condition deteriorates which can make them difficult to conduct.
Prior to transplant, it is important to establish your core support network. They can help support with care and difficult decisions such as discussing advanced care directives, wills, and accessing superannuation.
Comments from lung recipients:
“Do it as early as possible. It’s an exhausting three-day process and when you’re unwell, some of the tests are hard to complete. They try to capture every detail about you to ensure they have it covered post-transplant”.
“Maybe tack it onto the end of an admission when you’re feeling stronger. It’s an intense three days.”
“They do so many tests, so be prepared physically if you can.”
“I was really anxious about the assessment. I was so worried they’d find another issue that would prevent the transplant or that I wouldn’t be eligible. Worry was a big thing.”
“Waiting for the call from the team caused me anxiety. It takes about two weeks to get the results and waiting was hard.”
“If you have an assessment a year or so before, you may need tests done again.”
Waiting
If you are suitable and decide to proceed you will be placed on a waitlist. In Australia, some patients only wait a few days or weeks for their transplant, but most wait between six and 18 months. A shortage of suitable donors is an issue that can delay lung transplantation. Compatibility issues such as blood type, size of organs and antibody screening impact suitability.
During this time, you will need to be living within two hours of the transplant centre while you’re on the wait list. You may be eligible for financial assistance to relocate from rural areas or interstate.
It is important to maintain your health, including your weight, while waiting for your transplant. You will have regular appointments with your transplant team, approximately every four to eight weeks, depending on the transplant centre. Some centres require patients to participate in an exercise program.
While on the wait list, changes to your health may mean that you come off the wait list either because your health improves or because your circumstances change and you are not suitable for a transplant.
Waiting can be a very emotional and stressful time for you and your family. You may want to ask the transplant team if you can talk with others who have gone through the experience.
Comments from lung recipients:
“Keep yourself busy with another project outside of CF. It can feel like CF starts to dominate life, so having a distraction helps.”
“Try to remain positive. Think ‘this will happen and it will be great’.”
“Keep as fit as you can. The stronger your body is, the quicker the recovery.”
“Get any dental work done prior to transplant. There are issues around what you can get done for a period after transplant. Talk to your dentist about a plan for before and after.”
“Do something you find relaxing that isn’t related to CF. Whatever it is to help keep your mind occupied. You can feel like you’re going crazy otherwise.”
“Some people wait nine months, others less than a week. It can happen really quickly.”
“Humour helps! Dark humour is great and helped me get through this period.”
“List out what needs to be done while you’re recovering: things like bills, items for hospital and general life stuff. It makes it easier for those caring for you.”
“You have to nominate a carer/s. I nominated four to spread the load. The first three months of recovery are intense and it’s too much for one person.”
The operation
People with CF will receive a bilateral or double lung transplant. This will take from four to ten hours, depending on the complexity of removing your lungs and inserting new ones.
When performing a double lung transplant, the surgical team usually makes a horizontal incision below your breast/chest area. Your damaged lungs are removed and then replaced with donor’s lungs. All the blood vessels and airways between your body and your donor’s lungs will be connected. In some cases, a heart-lung bypass machine may be used to keep oxygen flowing through your body during the operation.
The surgical team will then close your chest using stitches or staples. Your incision wound will be dressed, leaving a few tubes in to allow fluids to drain. These tubes are temporary. You’ll also have a breathing tube that will stay in until you can breathe independently. Some patients have mentioned that loved ones can find this time distressing because of the amount of support and equipment initially required.
Comments from lung recipients:
“It can be overwhelming seeing so many people in the theatre room. For me, there were about 20. They were all so friendly and supportive and put me at ease.”
“They are the best of the best. You are in the best hands in the world.”
“I can’t remember much before the operation. Some people recall everything and others nothing.”
“I felt really pumped when I was in the waiting room. I was so excited.”
Post transplant
After the transplant, you will need to take immunosuppressive medications for life to prevent organ rejection. While the risk of this happening is highest within the first six months after your surgery, you’ll have to take anti-rejection drugs to suppress your immune system for the rest of your life.
It is important that you develop a routine for taking all your medications at the correct time and dosage, as failing to take medications is a common cause of transplant failure.
You will also be on medications such as antibiotics to prevent and control the common infections that people who have had transplants are susceptible to.
After a transplant, there will be increased reviews and assessments as part of rehabilitation. Each state will have different financial grants available to assist you through this process. You may need to relocate to be closer to your clinic depending on your situation.
It is important to familiarise yourself with your specific state’s recommendations regarding post-transplant care and the frequency of follow-up appointments.
NSW: CF patients return to their referring CF Specialist Service clinic three months post-transplant.
VIC: All patients will be treated at the Alfred, and all ongoing care will be managed by the Alfred transplant team.
Comments from lung recipients:
“I kept visitors to a minimum. I was really concerned about cross-infection, so I only had immediate family visit.”
“Keep a journal to document all the information and results. You meet so many new doctors, allied health and nurses that it’s information overload. All your meds are new too. It’s easier to write it all down.”
“Have your carer/s write in the journal too. How you are feeling? What’s working? What’s not? You’re recovering, so it’s hard to recall everything.”
“You’ll be told you can’t eat certain foods anymore. It’s the ‘pregnancy diet’ for life.”
“You’ll have one to two bronchoscopies done to check for rejection, and lots of blood tests.”
“You spend time with a psychologist, which is really helpful. There were days I was overwhelmed.”
“Celebrate the small wins. Your first shower is amazing!”
Others share their experience
Life afterwards
Most patients report feeling a new sense of life after receiving their transplant and go on to enjoy all the things they can and should.
Initially upon your return home, you will be asked to monitor your temperature and measure your FEV1 to identify any problems early. It is important to do your daily lung function testing, so any infection or possible rejection can be identified and treated early.
After a lung transplant, you’re at increased risk of infection due to the anti-rejection drugs you need to take.
You should call your doctor straightaway if you experience
• A fever of 38ºc or higher
• Fluids leaking from your incision
• Worsening pain at your incision site
• Shortness of breath or trouble breathing.
Comments from lung recipients:
“Some of the transplant meds can make your skin sensitive, so get your skin checked at six monthly intervals for sun spots.”
“Infections can start in the mouth, so it is imperative you have a good dentist and diligent oral routine.”
“It’s unbelievable, amazing. New life is incredible.”
“I had my transplant 21 years ago and haven’t had any issues at all. I’m very blessed.”
“You no longer have ups and downs with health, you just move along. It’s so different.”
“I felt a sense of loss not seeing my CF team anymore. I really miss them, but the transplant team is great. It’s just different.”
The donor
Despite the challenges faced leading up to transplant, recognising and processing the events that enable a transplant can be confronting and emotional. It is recommended you speak to professionals and loved ones about your experience.
Comments from lung recipients:
“It was hard because I was so happy, but knew another family was devastated. This was hard.”
“The donor isn’t mentioned in the process. When I started to reflect on them, I had to take time out to process what had happened.”
“I wrote a letter. I took me several months, but I had to.”
“I get really emotional thinking about it. It’s hard to explain. I’m so grateful, but I feel very emotional around this. It’s so foreign and complex.”
“This was the most challenging process of the whole experience.”
“I went to the hospital chapel and just sat and reflected. This really helped me.”
DonateLife Thank You Day is a national day to recognise all Australians who make organ and tissue donation possible. It is an important opportunity for the Australian community to collectively say Thank You to all the individuals and their families who make donation possible.
Carers
The transplant process is overwhelming and confronting for all involved. Often carers, partners, siblings and friends deal with the emotional rollercoaster on their own. It’s important to recognise that those caring for someone who is waiting for, or has received a transplant also need to focus on self-care and ensuring they receive the support they need. Usually there is time to become informed and prepare for a transplant with your loved one, however occasionally there isn’t. Either way, different challenges can arise for those who are caring.
Most state organisations have services to assist carers during this time. Contact your services team/social worker at your state organisation for more information.
Carers and friends often want to help but aren’t sure how to. Here are some suggestions from people who have had trasplants on helping during this time:
- Keep informed during and after the transplant. Join appointments and ask questions that can assist in decision making.
- Help the person write a plan beforehand. What can be done whilst the person is recovering? Bills, cooking, plants, pets, cleaning, updates to friends.
- Share the load, one person shouldn’t be responsible for everything so spread tasks over family and friends. This reduces feelings of guilt or stress for being a burden.
- Understand it is a major operation that can be overwhelming.
- Take notes on health changes, rehabilitation and new medications. After a major operation, it’s hard to recall all the information you are given.
- There will be hard days where you can’t see people.
- Recognise new lungs can bring different complications, the journey isn’t over.
Resource for carers
‘The Carer: Partnering a Transplant Recipient‘, a book about one Australian couple’s transplant journey and the vital role that carers play. Although this book is not about cystic fibrosis, it still shares valuable insight into this journey and has lots of practical advice and support information for carers.
Resources
It is recommended you speak directly to your state-based organisation regarding the assistance and support they provide during this process.
