Living with Chronic Kidney Disease and Dialysis

In this video developed by Ontario Renal Network, Avais, Randy and Cybelle are three patients that have Chronic Kidney Disease and are on dialysis. They discuss what it's like living with kidney disease.

"If you are diagnosed, don't think it’s the end of your life. It's not. It's just a shift in your life. It's not all encompassing. There’s so many people that are willing to help you, it's incredible. Instead of thinking the negative, I would think positive because it's not a bad experience; it's just a different experience." - Cybelle

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Video

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Video Transcript

[Avais S.] So I told the doctor I’m like my wife’s going into labor and he’s like ok we’re going to get you out of here as soon as we can and so I’m thinking to myself now I’m having a baby now I’m going to have to start hemodialysis. This is like two huge changes in my life and I was concerned because I wasn’t sure if I could handle it all at the same time.

[Randy R.] When my dad was diagnosed with PKD, I thought aha that might be what’s causing this severe high blood pressure so they put me through a battery of tests, at which time I was age twenty-nine and it was confirmed that I had polycystic kidney disease. And then sadly my son has it as well.

[Cybelle L.] We got married on Saturday and on the following Monday, I had to go to the hospital to get the catheter put in and the anesthetist said, “I heard you got married on the weekend” and I said yes I did and he said well welcome to your honeymoon! Yeah he had a bit of a sense of humor and after that it wasn’t too bad.

[Avais S.] We always wanted to have a family and it was actually right before I got sick where we decided that we were going to start trying to have a family. And then I got sick. So we unfortunately had to put that on hold for a little bit but everything kind of worked out the way it was supposed to work out.

[Cybelle L.] Not everybody at your place is going to understand that you have to go to doctor's visits every six weeks and it doesn’t just take a half an hour or even an hour; it takes a while because you have to see your nurse; you have to see your doctor. And there’s a dietician, there’s a social worker. They want to make sure that you’re doing well and you want to take care of yourself as well. And you want to take care of yourself as well. If you don’t have your health you really don’t have much.

[Randy R.]  You know I mean dialysis isn’t a walk in the park. No matter which way you slice it,  it's not fun. But frankly the alternative is a whole lot worse. There’s complications and there’s issues with every type of dialysis but you just have to roll with the punches and if you get knocked off the horse get right back on and ride and ride and keep on going.

[Avais S.] I would go to work, I would work almost the full day and three days I would do my dialysis and it would take me about an hour to come home so I wouldn’t be home till like eleven o’clock. And you know I wouldn’t see my son,  I wouldn’t see my wife – like three days a week basically. I would just come home and sleep and then I would have to go to work again the next morning.

[Cybelle L.] I never really saw it as a drawback. I’m a very positive person so everything I went though always had a positive spin to it. So… you know I could get my feet wet. So I wouldn’t go into the water; but I could touch it and walk in it. But I couldn’t swim in it. So… that’s ok.

[Randy R.]  In terms of my activities I like to snowmobile. I do curl. I have to be careful not to fall on the ice. I cannot do any contact sports. That’s definitely off the list.

[Avais S.] I like to cook. I think my interest in cooking has increased a lot more since my renal failure because I can’t just go out and buy something from the store because I don’t really know what’s in it so I have to make it at home and I have few alternatives. I feel like because of that it gave me a new hobby. I would say just stay focused on the good things in life because there’s still those good things that you have in your life are still there. They’re not going away, they're still there. And there’s more to come. You just have to make that adjustment.

[Randy R.]  I’ve met a lot of patients. Patients who are on every form of dialysis possible. Patients who have had transplants, failed transplants, second transplants. I’ve met so many people and the people who do well are the people who are determined to make the best of this. You know what, you can’t change it;  you’ve got to live with it as best as you can.

 [Cybelle L.] Honestly, I would encourage anyone that’s on dialysis that if you want to travel they make it so easy for you nowadays; it's amazing that you can just do about anything and you never have to feel like just because I’m on dialysis you’re restricted, you’re not.

 [Avais S.]  It was a big life change of course but it wasn’t as much of a change as I anticipated because I was really able to work it into my life. I like to think of my dialysis as a little sandbox where its just this little corner of my life and it doesn’t interfere with anything else that’s going on. I do it when I need to and that’s it.

 [Randy R.]  When my back was to the wall I switched into high gear and I have done anything and everything that they have asked me to do; and as a result.. I mean my kidneys were supposed to fail, six months, eight months ago! So now they’re thinking, another couple of years.

 [Avais S.] If you are diagnosed, don't think it’s the end of your life. It's not. It's just a shift in your life. It's not all encompassing. There’s so many people that are willing to help you, it's incredible. Instead of thinking the negative, I would think positive because it's not a bad experience; it's just a different experience.

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References

Ontario Renal Network

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About the Ontario Renal Network

The Ontario Renal Network is a division of CCO that advises the Ontario government on chronic kidney disease. We also manage the delivery of chronic kidney disease services in the province. The aim is to reduce the burden of this disease on Ontarians and the healthcare system.

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Patient Education Disclaimer

This material is for informational purposes only. It does not replace the advice or counsel of a doctor or health care professional. KidneyLuv makes every effort to provide information that is accurate and timely, but makes no guarantee in this regard. You should consult with, and rely only on the advice of, your physician or health care professional.

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