Ask the Health Leaders: The Impact of Chronic Kidney Disease on Daily Life

Life with chronic kidney disease (CKD) can be different than before diagnosis. Depending on what stage you are in, CKD can impact your diet, finances, work, intimacy, travel, and relationships and more.

Each person impacted by CKD has unique and individual experiences. That is why we asked our Chronic-Kidney-Disease.net Health Leader team to share their personal experiences with us in our Ask the Health Leaders article series. In this article, we highlight the different ways CKD has impacted people's daily lives. Read on to see what they had to say...

How CKD impacts social life and relationships

Sabad Khaire: "I have had chronic kidney disease since I was 16 years old. Now, I'm turning 30 years old this year, and I've come to realize that my CKD has impacted my whole life, from my personality to my behavior and lifestyle. I was so outgoing and always up for a good time, but most of all, I didn't fear trying new things. But every year, my body struggles to keep up. I've had many surgeries, including being on dialysis and having 2 kidney transplants.

"Over time, I became very timid, and my social battery died quickly. Still, I realized I was very optimistic – I could cover my struggle, heal better, and grow as a person with chronic kidney disease. Now that I've lived independently for the last 2 and a half years, I have learned more about myself as I've never lived alone. Having CKD but being alone and not having to call someone in the house has been a challenge in itself, as I always had some support system around. I've changed my diet and even hygiene as I have control of my own space."

The mental weight of chronic kidney disease

Diane Talbert: "I was just recently diagnosed with chronic kidney disease and am very nervous. I will be 66 next month. My first thought was, 'I guess this is it.' But I'm not that type of person. I will try and do whatever I have to do to stay on this side. I had a cousin who's been on dialysis for 26 years and a son who has been on it for 1 year. My father will be 90 next month and was diagnosed with CKD about 10 years ago. My husband and I are new to this, but we aren't ready to 'check out' yet."

Making changes to diet and exercise

"The first thing I did was to start doing some research. I wanted to find out if there was a way to slow down the process. It looks like diet played a big role in this. I started by limiting my salt intake. This was hard, but I was able to find salt-free seasonings and started cooking with garlic, herbs, and more spices. It was a little rough at first, but it's getting easier. I'm a steak and potato person, so giving up my mac and cheese and mashed potatoes was not easy. I changed my red meat to fish 3 times a week. My veggies never taste that good when I eat them, so I eat more salads. I am experimenting with stir-fry dishes. I did a shrimp and veggie dish, and it wasn't too bad.

"I have a treadmill that I haven't been on in a year – I just don't like it. So I invested in a stationary bike. Since I retired I talk on the phone a lot, so every time the phone rings I get on the bike. I average about 1 1/2 hours to 2 hours a day. I'm 10 pounds away from my goal weight."

The late stages of CKD and daily life

Holly Wakelin: "In my experience, in the earlier stages 4 and above, I didn't have many symptoms, luckily. Therefore, day to day I didn't have to do much differently. The only difference I had to make was mainly in my diet. As my kidney began to fail, my phosphorus, potassium, and sodium levels were impacted. I then learned what foods are high/low in those nutrients and tried to reduce or increase my intake of them. Which in turn, is similar to starting a new diet.

"Other than my diet, I took medication every day, mainly at night. Once my kidney got to stage 5, I started feeling the impact a bit more. I became extremely fatigued and unmotivated and had swollen ankles and appetite loss. Along came dialysis, which has, in turn, taken away all my symptoms. But I am now doing 2 dwells every day. My diet has a bit more freedom. Each stage has come with a lifestyle change, but it has always been manageable."

Changes to medication regimens

Danyea Bailey: "CKD has impacted my daily life in the biggest way by having to adopt a medication regimen. I am now on medications I will need to take for the rest of my life. These medications come with special instructions, like needing to be taken with food or a large glass of water, and some while fasting. The timing of medications has also altered how I live my daily life. I had to learn how certain medications affect my body and correlate the best time to take them to be successfully consistent. This is not considering the things that I can no longer consume because of their reaction to the medication I would be taking. I could honestly say the medications were the hardest adjustments for me, but when I was able to manage my lifestyle everything worked out and became my norm."

Everything changed after CKD

Gabrielle Davis: "CKD has completely changed how I live each day. When I got diagnosed in 2010, it felt like my whole world flipped. I had to do a complete 180 in how I approached life. Everything from what I eat and how much water I drink to how I handle work and my hobbies had to shift. Before CKD, I was super active and even had a trainer. But I had to cut back on a lot of activities. Things took a positive turn after getting a kidney transplant in July 2021. I can be more active now and do things I love, like playing with my energetic toddler. Still, I'm tied to medications – that part of my life is here to stay. Despite the changes, I'm grateful for the chance to enjoy life more fully post-transplant, even if it comes with a few strings attached."

A continual learning process

Jokiva Bellard: "I had to change up my diet, so no pork, sodas, gluten, and beef. I add more veggies to my plate more than anything else. Remember to work out because due to certain drugs and health conditions, I have to make sure my body can fight when weak, so I do cardio for at least 30 min a day. Due to gaining weight in fluid retention, I cut off the salt. It's okay to make mistakes because you are still learning. Everyone's experience will not be the same."

Check out Part 2 of this series!