Thank you to everybody who took part in our recent kidney care in Scotland webinar. Once again Living Donation Scotland and Kidney Care UK were delighted to host their second free webinar held on Wednesday 16 June and hosted via Zoom.
This webinar focused on answering your questions about living donation. Questions were submitted in advance or address during the event by attendees, who were a mix of kidney patients, carers, family and health professionals.
Questions were put to the panel by Jen Lumsdaine, Living donation Scotland, and was answered by panel members which included healthcare professionals, a live donor and recipient and an advocacy officer.
The webinar was chaired by Mark Clancy, Lead Transplant Surgeon and he was joined by Lorna Henderson, Consultant Nephrologist, Julie Glen, Living Donor Transplant Co-ordinator, Orla Hobson, Renal Education and Choices at Home Nurse, Ewen MacLean, Kidney Care UK Lead Advocacy Officer for Devolved Countries and John and Chris Kelso, Live donor and recipient.
What are the views on pre-emptive transplantation?
A pre-emptive transplant is highly desirable if possible, as it stops deterioration that can happen to patients whilst on dialysis. However, the benefits for those who receive a transplant after dialysis is still very substantial.
For the quality of life and general health, if people are fortunate enough to be able to have these discussions before going on dialysis, then that is ideal. Talks for a transplant should start between stage 4 and stage 5 of chronic kidney disease. This allows time for a suitable donor to be assessed at an early stage and a greater chance of having a pre-emptive transplant. It is not always possible for those whose kidneys deteriorate quickly, so in those cases, a transplant after dialysis is also very beneficial.
Chris Kelso, a patient who received a kidney from his brother John Kelso, shared how fortunate he was for being able to get a pre-emptive transplant, he was able to maintain a good quality of life without having to go onto dialysis and the transition for him was very seamless.
I’m booked for a live donor transplant in two weeks, I am wondering what people wished they had known before the operation?
Ewen MacLean recalls being very active and not being able to sleep for the first few nights following the transplant. He later realised this was due to steroids and wished he had known this beforehand as he would have handled it a little better.
Chris felt well prepared, he was informed of receiving steroids. Going through the process and the various meetings before transplantation, Chris felt well informed. Chris was trained on taking his medication and tablet management as this is something all patients post-transplant have to take.
A transplant operation is a complex series of events, there are so many different parts of the process where intrinsic changes are happening, it’s difficult to predict everything. Leaflets and booklets are provided but patients are encouraged to educate themselves. There will be something that surprises you, it’s inevitable but listen to the testimony of those who have been through and are living the benefit of it and take comfort and have faith in that.
Does a live donor transplant change the Covid-19 death rate risk for a recipient?
Based on the data we have, compared with dialysis, it improves it, but having major surgery would be a bad time to catch Covid-19, and post-surgery would be a period of increased risk. However, as we stand today, a vast majority of people who will be coming forward for this will have had both immunisations and are unlikely to get severely ill from it. Currently, despite the Delta variant, the overall prevalence has been much lower than it has been previously.
The risk will also be dependent on other factors such as age, immunosuppressed vs not immunosuppressed, there’s isn’t strong evidence that suggests it’s putting you at increased risk, but your team will discuss and guide you.
I’ve been approved as a living donor for a father, my test process started in March 2020, what sort of delays is Covid-19 causing for the living donor programme?
John Kelso, a living donor for his brother Chris Kelso, said tests took around nine months to a year but this was 5 years ago.
Colleagues in Edinburgh and Glasgow are working to streamline the process, ideally, a year is long but sometimes necessary. A straightforward donor, who has time to commit to the process and is flexible, can be worked up within 4 months but it also depends if it’s the right time for the recipient. There are a lot of factors that contribute to the length of time a workup process takes.
Covid-19 can cause delays for complex cases where additional tests are required for donors because many departments are looking after really sick people.
Covid-19 has caused enormous problems for the health service as a whole. All The organisations are under great strain across multiple avenues. Fifteen months of elective surgery has been set back, clinic appointment setbacks and the system is under great strain. It is a difficult environment to be seamless in but transplantation is relatively protected from that for various reasons.
Do donors mind entering the kidney sharing scheme if they are unable to donate to their partner, friend or relative?
It’s a very personal decision for a donor and some donors do not feel comfortable with it, but overall, it’s a positive thing for many and are usually very engaged with the process. The assessment process for a donor is the same, regardless if they are donating to a loved one or joining the sharing scheme, the result is the same because the person you want to get transplanted does receive a transplant so generally, it’s a very positive experience. Many compatible people are also joining the sharing scheme because they may want a better-matched kidney or one with simple anatomy. The sharing scheme is becoming the norm and it benefits everybody who is joining.
The real risk for live donors and if there is a higher risk than average for the donor developing diabetes following donation if there is any family history?
There is no data to suggest that by donating a kidney you are at an increased risk of developing type 2 diabetes.
When a potential donor with a family history of diabetes is presented, blood sugar checks and a careful history check is done, followed by detailed tests such as a glucose tolerance test which would indicate with greater certainty, if someone is at higher risk of developing diabetes. The testing process is very rigorous and maintaining a healthy lifestyle before and after transplant is very important.
Long term likelihood of developing diabetes is also determined by lifestyle factors that individuals choose, and if it’s clear that lifestyle choices will lead to diabetes and these are not changing, then it would not be appropriate to donate a kidney. This is something that any individual has the capacity to change by choosing a healthy lifestyle.
I would like to donate but I don’t think I can due to my family and work circumstances is there any support for my case?
For anybody donating it has to be the right time to donate, you can speak to your coordinators who will support you through the process. You can also speak to advocacy officers at Kidney Care UK if you wanted to talk to someone independently.
There is a scheme for reimbursement for loss of earnings for those who are self-employed so there are mechanisms in place for support.
Kidney Care UK offer a telephone counselling service with trained renal councillors who can provide support. Kidney Care UK can also introduce potential donors and recipients to others who have been through the process to help them clarify matters.
If you cannot donate it is not a failure, you can only volunteer to be a kidney donor and the vast majority of those who do volunteer do not go through to donating.
Thank you to all attendees and supporters for attending the webinar. She confirmed we are hoping to run more of these events in the future and would welcome feedback on topics you would like to see discussed.
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