Episode 48: Chronic Kidney Disease: A consumer perspective on navigating a new diagnosis

Dr. Kate Annear:

Hello and welcome. I'm Dr Kate Annear. I'm a GP and I'm also a medical advisor for NPS MedicineWise. Thanks for joining us on this podcast. Today, we are going to be turning our attention to chronic kidney disease. A common, but often silent and highly burdensome disease in our community. We'll be hearing from a young couple, Dan and Jodie who have a lived experience with chronic kidney disease. In 2021, at the age of 31, Dan was diagnosed with chronic kidney disease due to IgA nephropathy. Dan and Jodie will be talking to us about their journey as a family, navigating a new diagnosis of chronic kidney disease and how they've dealt with the challenge of living with this condition, including the need to make lifestyle modifications, take multiple medicines, and to learn about a complex condition in order to be able to advocate for themselves. We'll be hearing about the resources that they've found helpful and the advice they have for health professionals and for consumers in making this journey easier for others. Welcome, Dan and Jodie. Thanks for joining me today.

Jodie:
Thank you for having us.

Dan:
Thanks for having us.

Dr. Kate Annear:
Now, if we could start at the beginning of your story, how did your kidney condition present, Dan? Was it detected via screening, or did you have symptoms?

Dan:
No, I had symptoms. Well, we think it was after my vaccination, my second one. I had maybe a bit of a reaction to it and I just started getting joint pain, a lot of swelling. I didn't really think too much of it, I was actually seeing a chiropractor at the time, and he said, "No, you actually need to see a doctor." So I saw my local GP and he just did a dip test and was a bit suspicious, and then sent me off for some extra testing and blood tests and stuff like that to come up with the diagnosis. I think from the word go he knew or had a suspicion of what he thought it was, but he obviously had to be sure and cover all bases. That's the way it happened for us. It happened pretty quick and then just straight into seeing a specialist from there and trying to control it from there.

Dr. Kate Annear:
Yeah. He picked up that you had protein in your urine, you think at that early stage?

Dan:
Yeah. Very high. Yeah.

Dr. Kate Annear:
Yeah. Sure. Well, had you ever had your urine screened before? We know that for some people with chronic kidney disease, they have risk factors and they might have been screened at some point prior to that. Do you know?

Dan:
Well, I mean, did have an episode back in 2019 was it?

Jodie:
Yeah, it would've been 2019.

Dan:
2019. I actually had blood in the urine and went to the hospital. They did some tests there and then did follow-up tests with my GP and it all just went back to normal, and nothing was ever chased up. In respect to screening, no, I wasn't screened. It was just something that we just found by... Well, I don't know if it's good or bad luck there-

Dr. Kate Annear:
You're young and healthy, so you don't fit... Well, you don't have the traditional risk factors for CKD that we know about as health professionals. Things like high blood pressure, diabetes. Did you have any risk factors that you're aware of?

Dan: No. I think I've always been pretty healthy. My blood pressure's always been fine, pretty active jobs, so I don't think I, from off the top of my head, would've had any risk factors that I can think of. I was-

Jodie:
The only reason we were even really aware of what it was when IgA first started being thrown around was because he does have a cousin that also has it. We kind of knew it existed, but we've also been told it's not at all necessarily a genetic link, but in terms of health and fitness and all the rest of it, he’s a healthy weight. I mean, he's had the previous heart surgery, but that was a congenital thing so that was just another added layer of complication through the process. Yeah, no, it was probably a little bit like the heart thing. It was a bit like, oh, okay. This young guy that really shouldn't be diagnosed with something like this, here he is. But the more that we've come to learn about it and the more people we've actually connected with, there are a lot of young people that are diagnosed with IgA. It’s quite surprising.

Dr. Kate Annear:
It’s so important for GPs to be vigilant about testing people who have symptoms or who even have a family history so that’s really important. And how was the diagnosis... How was it made and conveyed to you both? Was that done by your GP or the specialist?

Dan:
Well-

Jodie:
No. I think a combination.

Dan: 
It was, yeah, a bit of a combination, but I suppose the actual diagnosis was from the kidney biopsy that I had.

Jodie: 
It was really our GP initially that when they first started testing him when he had the joint pain. It was actually our GP who really pushed, getting in touch with the... He got in touch with the specialist, he made the phone calls, he set us up with consults initially. Then from there, the biopsy. Booking the biopsy and everything happened within about a week and a half or about a... No. I think we had about a week's notice. They wanted to get him in and we were mid-lockdown here in Sydney, so that in itself was a bit of a challenge.

Dr. Kate Annear:
Through that process, did you have a bit of time to adjust to that potential diagnosis or did it come as quite a shock?

Dan: 
Well, no. I was suspicious that something was up. For me, I think I copped this one more on the chin than I did when I found out about my heart. It was a bit easier to swallow because the heart was like. Well, I was like, "Oh, well, that's the heart." I mean, I'd never even thought of a disease or anything like that with the kidney. I suppose when I was told it was a bit upsetting, cause for one, I was in the neurology ward at St George so they had no idea of anything to tell me and relay, "Oh, this is normal and this is normal.". They actually couldn't really relay any information, the nurses, because they weren't familiar with kidneys because it was the neurology ward because of COVID and the fact because of COVID my family couldn't be there. I mean, it wasn't easy- It was definitely easier than when I found out about my heart, that's for sure. It was change your diet and I got on with it, I suppose. From there it wasn't-

Jodie:
I think initially the diagnosis was fairly positive in that he hasn't progressed too far along. We've caught it relatively early. That could be a very different story in five or 10 years, but we were able to implement stuff straight away. They got him straight on the blood pressure medication, even though his blood pressure's fine. Never had an issue with it, but just as that preventative. I suppose probably because the kidney and the heart is so linked, that was a big thing. Just having a pre-existing heart thing, even though the heart's good now, it's been fixed up with the surgery that he had, but it was still-

Dr. Kate Annear:
That was valve surgery with the-

Dan:
Yeah.

Jodie:
Yeah. It was valve surgery. That was four years ago now for the open-heart surgery, I think it was.

Dan:
2000 and... Yeah.

Jodie:
That was probably scarier in the sense that they basically said to him, "If we don't do this now, you could literally drop dead." Because the heart was starting to be under so much pressure. At least with the kidneys, it was still... I probably took it harder I think because I was like, "Oh, God, again, here we go again with something." It was a bit more like, okay. We have more time to put a plan in place and to try and digest it and make the changes that we need to change rather than just, you're going in for open-heart surgery next week. Hang in there. It was a bit more easier, I guess. But in saying that, for someone else, it would be really hard, but we'd been on another end of the spectrum too.

Dr. Kate Annear:
That's right. As you said, it's so important that it has been picked up early so that you've got the opportunity to make those changes to your lifestyle and get on the right medication and all of that. Do you know what stage or did they tell you about what stage of kidney disease it was?

Jodie
He's literally stage one.

Dan:
Stage one.

Jodie:
He's got about 90... Well, we'll find out.

Dan:
Well, I don't know if they give it an actual number, but they just say it's above 90.

Jodie:
Yeah. His GFR or estimated GFR is what they call it, is 90 plus, but that can fluctuate over time.

Dr. Kate Annear:
Fluctuates. Right. Yeah. With episodes of proteinuria..

Jodie:
As you know, we've just come out of a week of COVID, Dan's had COVID and we've noticed some symptoms with his urine. One of them being well, frothy urine is a sign of protein in the urine, which was the concern last time. We were straight onto our GP having conversations about we've got to get tested. There might be a slight dip in that once we get some tests done. Again, we're more aware now of where we go to from here and what we can implement to try and bring it back sort of thing.

Dr. Kate Annear:
As you said, so you've obviously done a lot of reading and educated yourselves about the condition, but chronic kidney disease can be quite a complex thing to understand. How did you go about finding more information and what resources did you use or find helpful in that process?

Jodie:
Dan didn't do a lot of research. As soon as he rang me, I remember it was the Thursday that he got the diagnosis. It's funny what you can and can't remember sometimes. But I can remember the Thursday, him ringing me. He'd had a really rough time the Wednesday afternoon after the biopsy, he had some really horrible back pain because you got to lay still, and because he was on anticoagulants, blood thinners, even more so, and some pain that he'd had from the open-heart surgery returned. We didn't have a diagnosis on the Wednesday. It was the Thursday. As soon as we got it, I was on the computer, Dr. Google, as bad as it is. And you're right, is it a complex thing. I still couldn't even really give you a simple, this is what IgA means. Other than I know that it impacts the filters of the kidney and causes scarring and things like that. That's what we're dealing with. Kidney Health Australia, I definitely came across their website for different things, but also a Facebook group. I found a Facebook... Like a global IgA nephropathy Facebook group. From there I've connected with some other, or we've connected with some other people within Australia and I'm now on the Facebook group for Australia. We've got IgA Nephropathy Australia, and it's Australia/New Zealand. That's been good too, because that's just a lot of resource sharing and asking questions.

Dr. Kate Annear:
So it's a good network

Jodie:
Yeah, it's just a good network, particularly... And I wish I'd found it... Well, to be fair, 12 months ago there was only about probably 20 or 30 of us in the group. I think we've got about 150 plus now. It's slowly growing. Back then, I probably wouldn't have had many people to ask questions of to be fair. Since I joined, the original member who started it, there's a couple of us that have stepped in to be admins. He's going through dialysis at the moment, so we've stepped in to help out. It was probably the internet. Then just general reading up on things. Trying to understand the medical report that came home from hospital with him as well, just all the medical jargon and trying to dumb down what it means.

Dr. Kate Annear:
Was that explained to you in much detail when you were in the hospital or was - you didn't know the questions to ask.

Dan:
No. I would say the information was just dumped on me. It was like, "You've got IgA." And then the doctor left and I was like, "Oh, okay." I didn't really... I think prior to that, my doctor did say, "Just watch your sodium intake." Straight off the bat, we did that before we even knew. He just said, "Watch that." And we've been doing that ever since. That's probably the major.

Jodie:
We definitely got good explanations from the specialist. Obviously, she's not going to sit there and go through the whole medical report with us and tell us absolutely everything that's in there but we got a fair idea. I guess also the fact that we know he's not too far progressed at the moment was obviously a comfort, but I don't think we felt like we needed to... We didn't really need to know much more than we've got it. This is our kidney function. At the time, the protein was still really high in his urine. I think it probably had peaked around that time. There wasn't too much that we needed to clarify from there other than what do we do from here? What are we going to do to fix... Not to fix-

Dr. Kate Annear:
To be proactive. Yeah.

Jodie:
To manage it and to be proactive moving forward with it. Yeah, we definitely had a lot of support from both our GP and our specialist. They were really good at communicating with each other, which made a huge difference. Because of lockdown, everything was telehealth or Zoom and the week he was in hospital... It's hard being the advocate for someone, but not being able to advocate for them because you're not there. Then you run the risk... And there was a couple of points when he rang me in absolute agony with his back, I was like, "Right, I'm calling the ward and they've got to give..." I knew what medication he could and couldn't have, because we'd been through it before, so I was, "You can't give him morphine, it's going to make him sick, blah, blah, blah, blah, blah." I didn't end up doing that because they were already under enough strain and they ended up giving you some stuff that did work in the end for the pain. That in itself was even just really hard.

Dr. Kate Annear:
That experience throughout the COVID pandemic is one I think a lot of people can relate to. Yeah. It's been quite isolating.

Jodie:
Yeah. And Dan doesn't always ask a lot of questions. I'm the question asker. I would've loved to have been in the room with the doctor going, "Right. What does this mean? What's this mean? What's this mean? Tell me about this." Getting all that, but it was what it was at the time and we just had to make do.

Dr. Kate Annear: 
You obviously are quite proactive and you made a lot of lifestyle changes early on. I think you said earlier the main one was diet. What changes did you make and how did you go about doing that?

Dan:
Well, as I said before, obviously salt intake was the major hurdle, I guess. Well, not a hurdle, but that was the major-

Jodie:
The main shift that we made.

Dan:
... that was the main shift. But off the bat, I wanted to take it pretty seriously so we did engage a dietician or renal dietician, which she definitely helped and just helped with my diet. I probably went a little bit hard with my diet because I was losing so much weight. I looked like a... Is it malnourished?

Jodie:
He'd lost about seven kilos in two weeks.Because we'd cut back the amount of protein he was eating, but because of work, you need the protein.

Dan:
Mainly just eating I guess probably what any doctor would want you to eat is the diet that I'm on. Just a healthy, well-balanced diet and just watching the sodium intake. That's probably the main things that we do now.

Jodie:
Well, we basically... We don't add any extra salt. When it says season we'll season with a bit of pepper, we might put a little bit of onion powder in, but we don't add any extra salt onto anything. I mean, there's obviously occasions where we go out to dinner or we're at an event and you can only control so much.

Dr. Kate Annear:
Control so much. That's right.

Jodie:
That's also just about planning ahead going, "Okay, for example oh, we've got a wedding this weekend." So just make sure leading up to the wedding we're eating really, really well and then have your little blowout on the weekend and then you come back and we're good.

Dan:
Yeah. That's fine.

Jodie:
I think probably one of the biggest things too was just not as much packaged food and stuff. As Dan said, we're really just eating the way most medical professionals tell us to eat, fresh food made from scratch. We make all our stocks ourself now. We'll do a big batch of chicken and beef stock every month or so, and just freeze it in portions and when we need stock, we've got it there, but it's got no extra salt in it. It's actually been really interesting. I was finding it overwhelming, because I tend to do most of the grocery shopping and I was finding it really overwhelming at the shops going, "Well, I don't know what to... What can I buy?"

Dr. Kate Annear:
Reading labels.

Jodie:
Yeah. That was why we got Bridget, the dietician involved. We got an EPC, I think it's called an enhanced primary care plan. That was something that they suggested, which is essentially-

Dr. Kate Annear:
Gave you access to the-

Jodie:
..subsidized, yeah, dietician

Dr. Kate Annear:
The dietician. Yeah.

Jodie:
... for a chronic patient. She was really good. She just gave us a bunch of resources that okay, he likes to snack during the day at work as a builder so it's, what Muesli bars for example are okay? What diced tomatoes can I buy for when I make spaghetti bolognese? Because when you actually look at the back of labels, it's quite surprising how much salt is in stuff.Yeah. That's been the biggest shift that we've made, and water, we were told definitely keep the water up, but he's never really had an issue with that. Just trying to keep your stress levels down is the other one that we've been told is an important one.

Dr. Kate Annear:
And what about medication? I know that you said you were on something for your blood pressure, Dan. Did you go on any other medications initially?

Dan:
For my kidneys, long term is ramipril, which is a blood pressure medication and short term was Forxiga. Is that how you say it?

Jodie:
Yeah. Forxiga.

Dan:
The actual Forxiga, which is a diabetic medication. When I went on it, she said there's been some studies, it had proven to work and she said, "Oh, would you be willing to go on it?" I said, "Well, I don't really have much of a choice, so yeah, that's fine

Dan:

 It actually brought me back to normal with my protein.

Jodie:

Yeah. There was no protein leak or anything.

Dr. Kate Annear:
Dapagliflozin is the other name for it. It is one of the newer medications that has been shown to be quite beneficial in slowing down the progression of chronic kidney disease for a lot of people.

Jodie:
It took about four months to work. It wasn't an immediate thing, which is something that in conversations I've had since with some of these people that we've met on this Facebook group who have said, "Oh, my doctors mentioned this." That's my biggest point is you're not going to go on it and see a change in a week. It could take months. You could see a decline in your kidney function and then it will bounce back up. You've just got to give it time and he didn't have any side effects either, which was good.

Dan:
My sugar level was raised or something like that, which is normal-

Jodie:
Oh, yeah, but that's just because of... Yeah.

Dan:
... she said. That was about it.

Jodie:
That wasn't much.

Dr. Kate Annear:
Do you feel like through that process with starting medication that you were able to take an active role in, I guess, making your own decisions about treatment and what was best for you? Were you given that opportunity, I guess, to be at the center of your own care and say, "This is what I want."

Dan:
Well, for me, I really wanted to take it seriously. I did basically everything that they asked of me. For me, I said to my specialist, I said, "I don't want to die at 50 from this. I want to live as long as I can." She said, "Well, you just need to watch your diet." To be honest, it wasn't major changes like for some people it would be but-

Jodie:
I think initially it was. It probably took us... You say it probably wasn't a major change because you weren't doing the cooking.

Dan:
No.

Jodie:
It changed for me.

Dr. Kate Annear:
It does affect- With all these conditions, it does affect the whole family. Doesn't it?

Dan:  
Yeah. It does.

Jodie:
I think we've been really lucky with both our GP and our specialist. Some people aren't, but thankfully we are or have been.

Dr. Kate Annear:
That's really good. Because we do... Well, we also know that people with chronic disease who often have to take a lot of medications, it can be very difficult to make those decisions. It's important that you as the patient or the consumer at the center of that decision and that you can do what's right for you in your life, because often a lot is asked of you when you have a chronic illness. Yeah, it sounds like you've had a good specialist and a good GP that's kind of helped you through it all.

Dan:  
Absolutely.

Dr. Kate Annear:  
That makes a big difference too. Now, Dan, my understanding too, is that some people with your condition, IgA nephropathy, respond really well to treatment and remain stable for a long time, which is really great. But the future can also be uncertain when you're dealing with chronic kidney disease. How do you both manage this uncertainty and plan for the future?

Dan:  
Well, I don't think about it. I just take it day by day because speaking with my specialist, so I asked the questions initially like probably a little bit scared, I guess. She said, "It's really hard to put a number on it." It's not like you've been diagnosed with cancer. Average says that you've got five years. It's not like that. She said really she couldn't put a figure on it, so for me I was like, "Oh, okay, it's a bit of the unknown." But she just said the best thing you can do, which is what I've said all along, is just eat healthy, stay healthy and that will do the best thing for you. She, however also said that she's got a patient that had transplant and he's coming up 40 years with the transplant.

Jodie:   
There's options.

Dan:  
Yeah. There was options  

Jodie:  
There's lots of options.I mean, thankfully we're living in a time where things just keep getting better and better and they're doing things more quickly. As I said, we've linked in with people now that have been down that road, are going down that road currently. That's the other thing, as you said, it's so different for so many different people. I'm the one that thinks about things... Not that Dan doesn't think logically, he does, but I'm always the one that thinks, "Okay. What does this mean for other things?" We'd already got a lot of things like our personal insurances and stuff all in order after the heart surgery, which thank God we did because he's basically uninsurable now. It's even just having things like that. Just planning for the worst in a way, but not-

Dr. Kate Annear:  
Staying optimistic.

Jodie:  
Yeah. But being optimistic at the same time. Particularly for us, we've got two young kids and it's even a situation around we've gone and had the girls checked for their hearts because Dan's is a genetic and congenital thing. It's even just being really aware of, okay, this is our family history now, this is what's floating around maybe in the gene pool, just so that we know for future for the girls as well. Yeah, I don't know. I think initially it was a shock.

Dan:  
Yeah. Initially it was a shock, as I said, like probably a bit scary.

Jodie:  
It was kind of like get back up and then you get kicked down again pretty soon after, but-

Dan:
To be honest, don't really think about it too much now after the initial-

Jodie:
The only time we've really been thinking about it is the last week or so with you having COVID and potentially showing some... But even that in itself, we are educated now. While we might get some results back in the next couple of weeks that we go, "Oh, that's a bit of a bummer."

Dr. Kate Annear:  
You feel prepared.

Jodie:  
We feel more prepared than we did the first time around, definitely.

Dr. Kate Annear:
Yeah, that's right. It sounds like... I mean, obviously, Jodie, you particularly found the Facebook groups and that's been a source of support for you as well. Is there anything that you would, or any messages that you have for other consumers on what you think was helpful and what they should take home from this as to help support them if somebody's in a similar situation to what you both are?

Jodie:
I think asking a lot of questions. I've done that both times now with the different things with Dan. As I said, it was hard this time because of not being able to be in the hospital, but I made sure that as his partner, I was on every consult, like telehealth or Zoom consult with a specialist or GP that I could be. Obviously sometimes I couldn't, but tried as much to be at all the appointments. Even now I still try and do that where I can just because it's always good having the person that's not being spoken about, who's probably trying to take it all in just to have that other set of ears to listen. Also, you're always going to have different questions. As I said, I will look at things very differently to Dan, so just being able to ask questions and not thinking that a question is stupid, because it's not. I think my other biggest thing, and this would be off the back of hearing some other people's experiences. That is to make sure you're happy with your specialist and your GP. It's okay if you're not and you need to move to someone else that can be of better service to you. At the end of the day, you're paying them when you go in and have a consult. You want to make sure you're comfortable with them, happy with them and making sure they're up to date with what is-

Dr. Kate Annear:  
With your condition.

Jodie:  
... new and going on and what medications are available

Dr. Kate Annear:
That's where word of mouth is so important too, isn't it? It's sharing.

Jodie:  
It is. Yeah. It is. It is. Definitely. I mean, I've referred... I don't know how many people I have referred to our dietician. I haven't actually emailed her to say, "Sorry, if you've had a big influx of kidney patients, that's my fault." Because again, over COVID, everything was done on Zoom and so we now also have that added benefit of, oh actually I can be seeing a patient that's over in Perth, but I'm actually based in Sydney. There's not many-

Dr. Kate Annear:
That's right. That's been a positive thing in some ways, hasn't it? Yeah.

Jodie:  
There's not many kidney specialists or dietician specializing in kidney disease, I should say. I think I found two in the area and the lady we ended up going with was just easier to access because she worked within the hospital system, but also worked in a private practice once a fortnight over weekend. Just being aware also what your doctor and specialist would like you to do and asking what they want you to do. We said like, "Okay, what do we need to do?" She said, "Well, diet change and then we had the next consult. We said, "Right, we've seen the dietician once. We've done this." She said, "You're just my perfect patient because you're doing what I'm asking." Taking it seriously, I guess, is the biggest thing as well. While we might be stable, as we said-

Dan:  
Yeah. It could go-

Jodie:  
... it can change really quickly. Fortunately, we haven't been in that situation yet. I know Kidney Health again, they've got a lot of resources in terms of diet and things like that, but they've also got support services. I didn't know of those initially and I didn't reach out for any of that. I also had the added benefit of having Dan's auntie and cousin to bounce off, probably more so his auntie. Dan's probably bounced off his cousin more, but I initially had his auntie to bounce off and now she's actually bouncing off me. I've gone-

Dr. Kate Annear:
Yeah. Because you've educated yourself.

Jodie:
We've been stable for a very long time and I've gone through all this research and we've done all this stuff and now she's like, "Okay. I need to be on that same page." Just having someone that you can chat to as well. Yeah, definitely made some connections with people all over the place. We all know each other's stories now, which is good.

Dr. Kate Annear:  
Oh, that's great. That's very good. Very good news, Dan, that you've been so well through the process so far.

Dan:
Yeah. Yeah.

Dr. Kate Annear:  
That's really good. Now there is obviously a lot more we could talk about, but I think that’s probably a good place to sum up there on that positive note. So thank you so much, Dan and Jodie for taking the time to talk to me today and sharing your story. I think there is a lot that we can learn from your experience, particularly for listeners who are facing a new diagnosis of Chronic kidney disease in themselves or their loved ones.We can see how important it is to take the condition seriously, even if the early symptoms are minimal. There is without doubt an opportunity in the early stages of chronic kidney disease to make lifestyle changes and to get started on the right medication and setting yourself on the right course early may help to slow the progression of the disease. Secondly, I think Dan and Jodie have demonstrated how important it is to educate yourself as much as you can about the condition as it will help you to take an active role in management decisions and to advocate for yourself or someone you are caring for with Chronic kidney disease. For some people, this process may include utilising support groups and you certainly can learn a lot from others experiences, both good and bad. So, thank you again Dan and Jodie.

Dan: 
Thanks for having us

Jodie:
Thank you very much

Dr. Kate Annear:  
For those of you who are listening who would like more information, NPS MedicineWise will soon be delivering a national educational program to improve the awareness, screening, management, and quality use of medicines for people at risk of, and those with Chronic kidney disease. You can go to our website nps.org.au where you will find more information on this program and the resources that NPS MedicineWise has developed in collaboration with Kidney Health Australia and with the national aboriginal community controlled health organisation, NACCHO to support both health professionals and also consumers who are living with chronic kidney disease. GPs can also go to our website for more information on CPD points related to this podcast. Thanks again for joining us and bye for now.