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My Role as a Caregiver: Research

“My role...is to go and find as much information as possible and understand all the options that there are”

Leslie Birkley

Transcript

My husband, David, has PKD. He told me within the first few, three or four dates, that he had PKD.  I didn’t know what that was, I didn’t know anyone that had PKD.  So turned to the internet, what is PKD, what does that mean, what – how does that affect someone’s life, what’s the prognosis and kind of what’s the end game?  So it was really just researching all that I could and taking in what this meant for anyone who had PKD, but for him.  I think David’s a little unusual in that he is very active and has a healthy lifestyle.  And so it’s different to meet someone and you don’t look sick, but on the inside you’re very ill.  So learning to understand what this disease does and how to give him the best quality of life that was my – that’s what I started searching for.

As part of my online research, I’ve found the PKD Foundation and they are a tremendous source of information in understanding the disease and finding resources.  So, I connected with them and exactly when I did that, they also had a volunteer opportunity to be a chapter coordinator.  So, although I’d never been a part of a nonprofit, I pursued that because I also knew that that – I would meet people that have the same disease and prognosis and even better understanding, and I could learn from them.  Take all of that information and find out what was best for David.

Learn everything that you can, research on the internet, use PKDcure.org.  Get in contact with a nephrologist, get a recommendation from your general practitioner on who a good nephrologist is in your local area.  Own your disease and understand everything that you can because there are things that you can learn to take care of yourself and manage all of the symptoms that come along with it to lead a good quality of life.

So, in our relationship, David has chosen to not learn all he can about PKD and treatment options because for him it’s an emotional drain on him to know all of the information that it takes to manage this disease and effectively.  My role in that is, and one that I want, is to go and find as much information as possible and understand all the options that there are, from continuing to live exactly as he was, controlling his diet as much as possible and allowing his kidneys to grow and all the things that they do, to a nephrectomy and transplant and everything in between.  So those are the two roles and he and I play within this relationship and understanding what polycystic kidney disease can do.

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