Transplant Assessment

(This process may differ at other cardiac centres)

Doctors are now able to offer surgery, medical interventions, and medication, which supports the half a heart to give adults a good, though not perfect, circulation. When one pump is doing the job of two, the heart will gradually tire, leading to increasing heart failure and the need for new treatment options. Transplantation, with all its challenges, is one of these options.

This information sheet is intended to describe what the process of being assessed for a transplant involves. The aim of this publication is to help anyone facing this treatment to gain a greater understanding of the assessment process. It will not give you an answer to every question you have. These in-depth questions can be answered by the Congenital Cardiac Doctors, Nurse Specialists and Transplant Teams during transplant assessment.

Reading this information may be difficult for people because transplant is an emotive subject. If you would like to receive support or further information, please do not hesitate to contact the LHM team on 0121 455 8982.

As you will know, there may come a time in your single ventricle journey when your cardiac team suggests you undergo a transplant assessment. This is a process which determines your heart function and the function of the other organs in your body, including your lungs, kidneys, and liver. The assessment process is conducted during a short admission to your nearest transplant centre. The process is undertaken to determine if you are suitable for a transplant, and if so, what type of transplant you need to undergo if you choose to follow this path.

The purpose of your admission is to determine if you might benefit from any advanced heart failure treatments that we offer, including transplantation. To make this decision it is important that we find out more information about you and your heart, and that you get to meet the team.

The assessment process can be likened to a car going into a garage having checks before its service and MOT: the assessment process does the same thing for your body & organs.

Your cardiac centre will refer you into the transplant centre for assessment, and the transplant team will contact you to inform you:

When you will be admitted
How long you will be admitted for
What you need to do with your tablets before you are admitted (this is normally your anticoagulation in case you need a cardiac catheter)

Before your admission

There are a few things you can do that will help with your assessment.

Ensure you have had a dental check within the last 6 months. Often this is required before any advanced heart failure care can be offered.
Be abstinent from smoking and recreational drug use. If this might be an issue for you, please get in touch and hopefully we will be able to direct you towards local support to get the help you need.
Identify someone to help you through the assessment process. There is a lot to take in during the assessment process and having a partner, relative or close friend with you is important. They should be someone who you feel comfortable discussing future care with and who understands your health issues.

If you are struggling to identify someone, or they cannot come for part of the assessment, please call and let us know.

Timeline

You are asked to attend the hospital at the beginning of or in the middle of a week.

You check in to your designated ward: most transplant patients are allocated a cubicle with ensuite facilities
You are introduced to the nursing team and orientated to the ward and your room.
You will have a medical history taken by one of the medical staff on the ward: you will need to be as thorough as possible providing these details.
You will meet your Adult Congenital Nurse Specialist and Congenital Consultant who check in on you each day throughout the assessment process
You will meet your designated transplant coordinator who will visit you daily

What tests will be done?

Transplant assessment involves lots of tests, some of which may have already been done at your local centre recently. The transplant assessment team occasionally undertake repeat testing to make sure they have all the correct information to discuss your suitability for transplant.

Although these tests may all be done, you may not need to undergo all these tests at your first assessment. Your own cardiac centre may have undertaken some of the tests prior to your initial assessment, or the transplant team may not feel that all tests are appropriate.

Tests – (spread out over 2.5 days)

Twelve lead ECG
ECHO
Lung function (spirometry)
6-minute walk test
Exercise tolerance testing
X-ray
Cardiac catheter (if needed because not necessary in all cases)
Dental screening (X-ray & dental review)
Liver team review and biopsy (this is not required for everyone)
Fontan patients – special Fontan bloods, abdominal ultrasound, FibroScan
Discussion and education with transplant coordinators
MRI or CT scan if required
Psychology referral
Social work referral

Following the assessment process patients normally go home after a couple of days. The results of your assessment will then be discussed at a multidisciplinary team meeting within 2-3 weeks.

The transplant centre contacts you directly to discuss the decision and the next process for you. When you come for assessment it is normally easy to determine if you are still well enough based on the medical history you give, your exercise tolerance etc. You do not always have to wait too long for an answer.

Luke’s transplant assessment journey:

I was born with HLHS and had a Fontan procedure when I was a child. My family and I knew for a long time that there was always the potential of needing a transplant; however, this still made me very anxious when I found out I needed the assessment. I was informed I would need to stay at the assessment centre for at least 2 nights and bring someone with me to help navigate the process.

Before attending the transplant clinic, I was contacted via telephone by the social work team. This call was to touch base and to get the ball rolling for the conversation they would have once I was in hospital. I was also advised by my doctor to stop taking Warfarin a few days before attending, as I required a cardiac catheter.

I first attended the transplant centre in July 2022 with my partner, who was fortunately able to stay in accommodation provided by the hospital. Though very nervous about the assessment, I was greeted by several staff members (including a special visit from Lorna!) who immediately assisted in putting me at ease.

On day one, I appeared to have more of an acclimatisation day. This consisted of familiarisation on the ward, getting to know the staff doctors, ending the day with a chest X-Ray and ECG.

On day two, I had several blood tests including Fontan-specific testing and blood grouping (I remarked they were the best that I’d ever had taken) and a cardiac catheter. The catheter was where most of my anxiety lay. Following a poor experience in a local hospital, I was extremely nervous. The team were brilliant, and not only provided excellent care throughout the catheterisation, but were able to prescribe some medication to help me relax. This left the experience as easy as possible and has massively reduced my anxiety around having future cardiac catheters – especially in the transplant centre! The rest of the day was spent recovering and checking in with the doctors to make sure I was okay.

On day three, I had an Echo, Ultrasound, Doppler and FibroScan. Due to the need for reduced movement after the catheter, the Fibroscan was completed bedside, and a porter collected me for the other scans. Another blood test was done before leaving to check my INR level due to reducing Warfarin levels for the catheter. Once these were checked, I was given some Heparin to take until my INR levels were back within normal range. The transplant co-ordinator came down to speak to my partner and me, to discuss what would happen if I needed to undergo a transplant. They gave us some documents to have a read through, but understood that due to my anxiety, going into too much detail wasn’t in my best interests at the time, and rearranged for a later date pending the result of the assessment. The social worker also stopped by, and discussed who would support me post-transplant, how I would get to appointments and what my working arrangements would be. They also discussed financial aid and spoke to my family to ensure I have the best level of support possible.

Upon discharge I was advised that an exercise test and CT scan would be undertaken at my local hospital, and that I would be contacted soon to find out how the assessment went. They also discussed bringing me back for bi-annual check-up appointments, which may change depending on the level of need at the time.

A few weeks later I received a call from the transplant clinic to discuss the findings of my assessments. They advised me that currently, I do not require a transplant, but this could change depending on the results of my exercise tests and CT scan. They gave me tips for staying as healthy as possibly to stave off the need for transplant and assured me that I’m currently ‘too well’ to need a transplant at this time. This was a huge relief for my family and me. Now I’m waiting to move into my new home and start a master’s degree. I’m in regular contact with my medical team, who will pass on any notable decline in my health to the transplant team.

Author

Lorna Carruthers RGN, BSc Practice Development

ACHD Nurse Specialist and SVH Adult Service lead for Little Hearts Matter

Editors

Suzie Hutchinson RGN, RSCN

Chief Executive and Service Lead for Little Hearts Matter

Medical Verification.

Stephanie Dunn

Transplant Coordinator – Heart and Lung Team

Proof-reader

David Beattie

References

Stephanie Dunn Transplant Coordinator – Heart & Lung Team

CT-TX@nuth.net

0191 2231132

Freeman Hospital, Newcastle Upon Tyne

Lorna Carruthers ACHD Nurse Specialist

l.carruthers1@nhs.net

0191 2448139