We are pleased to present this interview with Daniel Newman, a podcaster and advocate that has had type 1 diabetes since childhood. Dan spends his spare time trying to shine a light on the experiences of others with type 1:
“People have so many different experiences and amazing journeys with type 1. Why not create a platform to elevate those voices, and talk about stories that aren’t always spoken about. I want to give a voice to them. If your story sounds great, I’m sure it can help others.”
We think his story can help others too. To honor National Kidney Month, we asked Dan to tell us about his own struggles with chronic kidney disease, and the kidney transplant that gave him a “second chance” at life.
Managing Chronic Kidney Disease
Tell us about the beginning of your kidney issues.
I was diagnosed with chronic kidney disease in 2013. Prior to that, my kidneys were leaking protein. I was given tablets [pills] for that, but then eventually it turned into chronic kidney disease. At that point, it just felt like I always knew what the endpoint was going to be. You know that at some point you’re going to need either dialysis or a transplant. So your goal is to delay that from happening. And that’s what it felt like for those years, from 2013-2018, until I finally did receive my transplant. It was preventative care for my kidneys, but knowing what the eventual outcome would be.
Did your doctors tell you that this was caused by your diabetes?
There was a family history of kidney problems, too. But during my teenage years and my early 20s, I went through diabetes distress and diabetes burnout, and I’d be very, very naïve to think that it didn’t have an impact on me developing kidney disease. So, I had some of those conversations, and heard the scare tactics that many people have heard before, about levels and complications. But that was earlier. Blood sugar management wasn’t a focus during the chronic kidney disease phase.
Because I’d been living with type 1 for so long, my diabetes took a bit of a backseat. I had this new chronic condition taking up all of my time to manage. It’s a juggling act that many people face, if you live with type 1 and other chronic illnesses. We all know that type 1 takes up so much of your time, but then you’ve got another condition that you can’t just take a tablet for.
Maybe I could’ve been more proactive. The advice I’d been given by my doctors was to cut salt out of my diet, and manage my blood pressure. There wasn’t any conversation about diet as such. Gradually, over time, I did cut salt out of my diet, but culturally, I come from the Caribbean, and there’s a lot of hidden salt within those seasonings.
I was fortunate that I didn’t ever need dialysis. I was probably only a few weeks away from having to go to dialysis.
I had a live transplant. I was very fortunate that I had a living donor, a family member.
It’s very difficult to approach family, because you’re not asking somebody to lend you 10 pounds. It’s a very difficult conversation to have, and I think quite a few people who do need a kidney transplant struggle with that aspect of the process.
Tell us about the surgery itself.
I worked up until two days before my transplant.
I went to the hospital the day before, and was prepped on the morning of the surgery. Because it was a live donor, my donor was in surgery first, so they start working to take the kidney out, then as I went down they would’ve taken the kidney out and put it in me. There’s a lot of ‘plumbing’ that goes on – that’s how the surgeon described it. They don’t actually remove your own kidneys, so now I have three kidneys.
How long did recovery take?
The next day, you wake up and you are in pain, but you’ve got drugs that are helping. You’ve got lots of tubes coming out of you. It took a bit of time, but you do feel better. When you’re living with chronic kidney disease, your body’s not getting rid of waste as much, so you’ve got a lot of water retention, swelling, and after the transplant that goes down and you’re just feeling better.
I did some research, and people kept saying to get up and walk and do as much as you can do. That was really in my mind. On the first day, I sat up. And the second day, I tried to walk. I just tried to continuously keep progressing without pushing myself too much. You can’t just sit there, you have to get acting.
And the surgery was a complete success?
The kidney worked straight away. They test the kidney, and I was very fortunate that it was a good match, and my whole time in the hospital it continued to work. I left after about 10 days.
Life with a New Kidney
You genuinely feel that you have a second chance at life. That’s within me now. I’ve got a second chance, and I’m just so thankful for that. Next month, it’ll be four years since my surgery, and it’s been life-changing, just in terms of how I feel, what I’ve been able to do.
I’ve been very fortunate that I haven’t had any issues with the kidney, it’s been working well since day one. You’re aware of what you need to do – staying hydrated, moving, doing exercise, you’re also aware that if you don’t do those things what the impact will be.
Even now, the diabetes and the kidneys are separate. So, I see the nephrologist, he’ll be looking at the kidney results and he’ll ask, “how is your diabetes?” But I also know within myself the impact that my [blood sugar] levels can have on my kidneys. When your levels are higher, you’re putting your transplanted kidney under a bit more pressure.
A transplant is instantly the best treatment, but it’s not a cure. At some point, the transplant will be rejected and will not work. That’s another challenge. I spent about 18 months thinking, ‘Today I’m gonna wake up and it’s gonna reject.’ And you have to overcome that mental challenge as well.
You have to live your life. You know that rejection can happen, but there are usually stages to it, so just live your life. It can happen and probably will happen, but deal with that when you get there, rather than thinking about it now
It sounds like you feel happy about how it’s all worked out.
Definitely, definitely. If anyone was in the same situation, they would want the transplant.
With the immunosuppressants and anti-rejection tablets, type 1 has helped me with the routine of taking medication, and knowing that this medication is as important to me as insulin is.
If anyone is reading the article and they’re living with chronic kidney disease, my advice is to reach out and speak to others who are in the same position. You might feel like you’re alone, but you’re not alone.
Daniel’s podcast, The Talking Type 1 Podcast, is hosted on all of the major podcasting platforms. He is also active on social media – you can find him on Instagram and Twitter.
Read more about diabetes and kidneys, diabetes burnout, diabetic nephropathy (kidney disease), exercise, insulin, Intensive management, kidney disease, kidney transplant.