Warning
Aboriginal and Torres Strait Islander viewers are warned that the following video series contains the image and voice of a deceased person.
In loving memory
Aunty Glenis Hastie
[April 2022]
Walkabout: moving towards kidney transplant
Glenis Hastie
My name is Glenis Hastie. My Mum is Gurditja tribe up in Normanton where she's from and my Dad is the Tagalak from Croydon.
Kidney disease diagnosis
Glenis Hastie
Well, I really didn't have much signs, you know, that something was wrong, it was the doctors that told me. I felt a bit of tiredness and stuff like that, bit of soreness in my muscles when I walked, you know, and I was getting slow in my walking and stuff. And I told the doctors about it when I had my appointments. And she was... She told me that, uh, my kidneys were playing up and that they probably would have gotten worse, you know, as time go on. And so... And she said I might go on dialysis later on in the future, which scared me, you know.
Doug Hastie
Once she found out she had to .. She had to go on dialysis, she said, okay, well, we need to we needed to make some adjustments in our lifestyles. And she had to make some changes. And basically, we still wanted to live a happy, long, healthy life. And so, we had to sit down and think about, well, how do we do that? That was our purpose and that's the direction we wanted to go in. So, we had to sit down and talk about, well, how are we going to do that?
Glenis Hastie
I didn't really think, you know, that it was too serious, you know, that I didn't… it wasn't going on for a long time. But it happened so quickly, because the kidney just deteriorated so quick. And before long, I was going on dialysis.
Doug Hastie
When we first started, I knew absolutely nothing. It was... and it was information overload. We had to slowly learn what we needed to do. So, we learned a bit about how the kidney was functioning and how it stopped functioning and then how the dialysis would do the work of a kidney. And so, we had to learn about the dialysing process. We had to learn about the different medication, what she needed, what medication she needed, why she needed them.
Kidney dialysis treatment
Glenis Hastie
The haemodialysis, at first and ah, yeah... So, I travel to Atherton three times a week for about three to four months before I went on the peritoneal dialysis then.
Doug Hastie
When she was first told that she had to go on dialysis, it was a shock to her. She felt that she lost a lot in her… in the way that she lived. She lost her freedom. She lost some of her power and her ability to meet her own needs. And at times it would get her down and she'd feel a bit depressed at times... She'd lose energy, she'd lose motivation and umm, she sometimes could be a bit lonely. But when we started on haemodialysis, once she actually started to receive treatment, it wasn't so bad... That she thought that a lot of people thought this was the end of a life.
She was going to go from sickness and maybe not too far down the track, you know, she was going to lose her life... Most of all, she was going to lose happiness. Once she started receiving hemo, she started to think, well, this isn't so bad because at least I'm going to live longer. And then she said it wasn't too bad because I could umm, have those days in between off to do the things that I'd like to do.
Four months later, she went on to peritoneal dialysis and then it was even better.
Dr David Mudge
One of the best teachers in that setting is patients who've been through that treatment, who come back to the local community and are able to share their experience with other patients.
And I saw that process be quite successful in getting more patients onto peritoneal dialysis, for example, in some of the remote islands up in the Torres Strait. So, where patients didn't have any experience about peritoneal dialysis and didn't really see dialysis as being an option for treatment for kidney failure, when one or two patients came down to Cairns and was started on peritoneal dialysis and then were able to go back to their local community and continue with the dialysis treatment, then other people in the community and other patients with kidney disease could see that this was a viable treatment. That was a treatment that they could do themselves back in their own community. And that was a very powerful learning experience for me.
Glenis Hastie
I was on that for about three and a half years maybe... the peritoneal dialysis.
Doug Hastie
She’d dialyse overnight and she's got all day to do whatever she wanted. She started to get an energy back. She started to get her motivation back, and she started to realise, well, maybe she can still be happy.
Understanding kidney transplant and making the decision
Glenis Hastie
I had a doctor's appointment in Cairns and the doctor told me, you know, that I might be capable of having a kidney, a new kidney, you know? I think I was over the moon when the doctor asked me because... Oh, I gave her a big hug and I said, are you for real? And she said, yes, you know, you're eligible to have a new kidney, you know, because you fit all the criteria of having a transplant.
And I said, oh, she said just go home, you and your husband, and think about it and when you come down next week for your next appointment, then we can go through some stuff, you know, and they gave me some pamphlets to read.
Dr David Mudge
We run education seminars several times a year at this hospital that most patients who are either on the kidney transplant waiting lists or considering transplant would come down to do one of those sessions. For some of the patients who live more remotely, they can do that via telemedicine or by watching some of our other resources, like DVDs and things that explain some of that process as well. So there's quite a significant component of patient education involved with the transplant work up process, as well as all the testing and then getting patients ready for being able to be on the transplant wait list.
Glenis Hastie
It was a bit scary, because after watching the conference, I thought when I seen the... They were doing the operation and they were showing what connected to where and things like that and I thought to myself, what the heck I got myself into? And I said to my husband, what do you reckon mate, you know? And, he said, well, it's up to you and you're the one having it, you know... I then I said, Oh... Oh, let's go through with it, you know, I said, let's go through with it.
Doug Hastie
Then she thought about the benefits of having a kidney transplant and when the opportunity came up, she grabbed it with both hands. And now she feels that she's regained a lot of her freedom, a lot of her power and she's got the ability to meet her needs better than what she had to.
Glenis Hastie
The thing was, I just felt, oh, well, if I have a transplant, we can do more things together and my grandchildren, you know, and with them as well. I got a five-year old granddaughter and she's a live wire, you know, and she likes to do a lot. And she's with Nan and Pop sometimes on the weekends and she'd like to do a lot of things which I couldn't do much on the PD or the hemo, because I was tired and that, a lot of time.
Dr David Mudge
For some patients, the transplant sort of journey, if you like, doesn't really start until I get onto dialysis where transplantation might be something that gets discussed with them. So, that process for a patient who's already on dialysis, can be quite complicated. They need to go through a variety of specialised tests to assess whether they're going to be suitable for a kidney transplant in terms of making sure that they... their heart and blood vessels are going to be robust, that their immune system is going to be okay to deal with potential infective complications.
So, there's usually quite a long process when patients on dialysis, in terms of the transplant work up. That usually involves at least one visit to Brisbane to the transplant unit and there are special clinics that deal with patients who are looking to go onto the transplant wait list. They get assessed in that clinic and usually that involves correspondence with their local kidney specialist to facilitate getting some of that testing done, make sure the tests are up to date. Sometimes it involves seeing other specialists, if there are other medical problems identified along the way.
Linh Pham
When a patient is first either pre-dialysis or on dialysis and has mentioned to their medical team they would like to consider being worked-up for transplant, when they are referred to the transplant assessment clinic which is at the PA, I will see most patients - especially if they are out of town. And in my role it is to be able to assess socially aspects around transplant in terms of transplant preparation. Where they are from... what supports, financial support, they have. How are they going to get here when they get the phone call? Their ability to stay here post-transplant for 6-8 weeks and... emotionally, psychologically, where things are at for them. So, that's what I do in the transplant assessment clinic.
Going to Brisbane for a kidney transplant
Doug Hastie
When we left Cairns to come down, we didn't know where we were going… it was... we were coming in blind. We'd never been to.... hardly been to Brisbane, definitely hadn't been to Princess Alexandra Hospital. Didn't know the people... didn't know the place, didn't know what to expect once we got here.
Glenis Hastie
Coming down to Brisbane, it was a bit scary because I've never been to Brisbane... first time in a plane… I nearly took my husband's leg off… and bawling my eyes out, but yeah, you know... it was okay. It was a bit scary but... yeah, I thought it's for the best. Just look ahead - keep your focus up there, ahead of you.
Dr David Mudge
Kidney transplantation is one of those areas in medicine where you really need to have a good team and that includes surgeons who perform the operation, renal physicians (like myself) who look after the treatments like dialysis and immuno-suppression, but also, very importantly, social workers, nursing staff and then cultural support people, particularly for Indigenous Australians, I think that's very important. To help them with their accommodation requirements when they come to Brisbane. You know, most patients who come down for a kidney transplant will spend at least two months in Brisbane, which for some of them, is the longest time they've spent away from their community.
Doug Hastie
But, from the very beginning they were very, very helpful... they were very supportive. They listened to what we wanted, they understood what we wanted and they basically, gave us the care and support that was required.
Linh Pham
Within the renal team we have the surgeons and the transplant medical assessments, we have the nephrologist, we have nursing staff, we also have allied health and also including our Indigenous health worker Brett, who's part of our team.
Dr David Mudge
We were lucky to be able to appoint Brett Mooney who's now been working with us for six months nearly and he has been fantastic so far in the position. He has brought a lot to the role, he's very enthusiastic. He gets on very well with all of the patients and he's able to link them in with local services and with other healthcare workers that they need to be linked in with. And he's able to see them on a regular basis through their whole journey - both of coming down to visit the transplant unit before their transplant and then when they get called down for the transplant itself. He's able to help them through that process and then hopefully facilitate them going back to their local community and continuing on with their treatment as well.
Glenis Hastie
It felt good. Brett was a down-to-earth person that he could talk to you without being all 'official' you know... and Brett talked to me like he was family, like he knew me for a long time... and he just spoke and you know, we got on really well.
Doug Hastie
Brett and the Indigenous team have been... they gave us a lot of support. The pharmacist, the nutritionist, the education.... diabetic educator and the social worker, as well as all the other staff. We've been more than happy with their service and support. That was from the very first day and all the way through the different stages - of being an inpatient and then attending outpatients and then attending A.R.T.S [Ambulatory and Renal Transplant Services] - we've been more than happy with the support that we've been provided by the hospital and by the medical staff.
Jessica Rankine
As a Pharmacist within the renal and transplant team, we have a big role working with patients to improve patient safety with regards to medications. Giving them education about their medications and to help them take their medications without side effects and get good health outcomes.
After a kidney transplant
Linh Pham
To see the difference... to be able to come to a pre-transplant assessment with a patient who is coming to dialysis three times a week, is unable to work... is unable to feel like they've got good quality of life, is unable to look after the grandchildren, feeling poorly, unable to eat the food that they want… pre-transplant.
And then to be able to see them post-transplant - after having a kidney, going through this journey, going 'oh, I just feel a hundred percent better. I'm so motivated when, as soon as I get home, to do all these things... to travel, to enjoy life.' And to see the change that that transplant has done for that person - that's really rewarding.
Glenis Hastie
With the kidney, the new kidney, I can do these things and I've got more energy, you know. I might have more energy to do these things and no hooking up late at night, nine o'clock you know, things like that and umm... and we can go out, you know to football matches down in Townsville and go away, you know without carrying big boxes or things like that and staying just one night or two nights and then going back. Yeah, so... it was more freedom and things like that.
Doug Hastie
It was an interesting journey. I had to learn a lot about dialysis and umm.... I had to take a lot of the duties and responsibilities, but it's been a rewarding journey as well, hey.... To come through a difficult period, but to slowly get things improve again and the quality of life get back on track.
Glenis Hastie
Yes, it's improved the quality of my life that I can do a lot of things and I feel a lot better. I've got more energy.... eating alot more, you know.
Doug Hastie
It's good to see her healthy, fit, strong again and she can enjoy herself again.
Glenis Hastie
You can look ahead and see that there's more for you there you know... I mean... A kidney transplant to... isn't a cure but it keeps you longer, you know and this is longer time to spend with your family, you know and do more things that you want to do, you know. And this is what I wanted, so I just said yeah, I'm going for it, you know and that was it.
Advice for viewers
These video interviews were filmed in 2020, several weeks after Aunty Glenis Hastie had her successful kidney transplant.
For two years Aunty Glenis enjoyed a better quality of life surrounded by her family, until she sadly passed away in April 2022 - due to health matters unrelated to kidney disease.
In accordance with her families wishes, these patient journey videos remain publicly available to inform and assist others who are also considering kidney transplantation.
Special thanks to Glenis and Doug Hastie for sharing their stories.
In loving memory
Aunty Glenis Hastie
[April 2022]