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Patient Volunteering

If you could design the perfect volunteer job for yourself to give back to the Kidney Community, what would it look like? What would you want to do? Or have you already found the perfect volunteer job? Why do you love it?

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Latest Activity: Oct 3

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Comment by Sharri Stull Anderson on October 3, 2017 at 22:41

I currently facilitate a support group in the Niagara Region.  It is important for me to give back  and pay it forward.  I found when I was first diagnosed I had so many questions.  Yes the doctors could answer but they have not lived it or felt it.  I love every second of it.  Being able to answer someone's question or just help them with some of their fears is one of the best feelings out there.

Comment by John on August 22, 2015 at 18:02

I currently volunteer to speak to the new incoming patients at our local kidney clinic's "Information Night." I offered my services as a guest, to answer new patients questions and help settle their anxieties. So far over the last while, I have shared with new patients on 3 occasions and I understand they may want me to come back for the next group in September (next month) which I am happy to do. 

Since my peritoneal dialysis has gone very favourably and I consider myself to be pretty health, for a person with Chronic Kidney disease, I feel the least I can do is help the new people learn to transition by sharing my experiences. I hope to be of service for many more years doing this volunteer work whenever required.

Thank you,
John

Comment by Justin LeRoux on June 30, 2014 at 13:43

Probably one of the single most difficult things to get a firm hold of being on dialysis.  Most people who are not on dialysis don't even now how to eat healthy,(per most statistics out there) so you can imagine how much more difficult it is to dialysis patients. It took me a long time to figure it out and I still had trouble.   it was almost a "trial and error" type scenario for me month after month.

Comment by Hilary on June 27, 2014 at 14:34
Right on Fooddiva7 - I remember (very vividly in fact!!!), thinking/saying... well, what can I eat? Or, what's left?...
I have since made it my mission to understand all I can about the diet, but WOW!!!
Comment by Fooddiva7 on June 27, 2014 at 8:15

I thought about how to help newly diagnosed dialysis patients cope with their new norm and here is what I came up with.

-monthly bloodwork. Most patients are still eating the way they used to pre-dialysis and pre-kidney failure with no knowledge of what phosphates , calcium and all the other key elements are and how they foods they eat will either make them feel better or really bad. I suggest working with the dietians to come up with a really detailed handbook as a self education tool to reference by section the components that are crucial for renal patients.

It is the one on one time that is needed to educate new dialysis patients on the components that make up their bloodwork values.

Myself as a patient; I had no clue as to what phosphates were and the list that was provided to me barely covered 5% of what was in my pantry ( I am a total foodie) so as a result; my phosphate was always high and my nephrologist was always accusing me of not following what I was suppose to eat which is NOT the case. It was maddening bc I wasn't given the proper tools I needed to follow what I was suppose to.

Comment by Justin LeRoux on January 19, 2014 at 21:40

I thought of another great idea.  With all the snow we've had here in Calgary, I thought it would be helpful if I could assemble a group of volunteers to help shovel snow for dialysis patients who either couldn't do it or lived alone with no one to help or whatever the circumstance. I know it's not clinic help but as I was shovelling out of my driveway I realized how hard it is to do and I'm 35. I am going to think about this going forward and see what comes out of it.

Comment by Justin LeRoux on January 13, 2014 at 10:28

I hear the biggest issue is insurance coverage for the patients. I guess the legalities of it can be a big hurdle.  But I would love to be involved in something like this.

Comment by Hilary on January 13, 2014 at 8:33
@Justin - great idea! Nice to give caregivers/family members a break too. I remember that being one of the toughest things to coordinate when I first started dialysis. All of my friends worked, and dialysis for me, was a 40 minute drive each way (plus treatment) of course. I was too unwell to drive myself at that time.
Comment by AinsleyKFCOntario on January 13, 2014 at 7:42

Travel to and from dialysis is so difficult for so many people. I've often heard the suggestion that KFOC look at a volunteer transportation system like what the Canadian Cancer Society offers to and from periods of chemotherapy. We've talked about it briefly in Ontario because there are some big potential wins, but also some huge challenges.

Comment by Justin LeRoux on January 12, 2014 at 23:54

I often think about how I can volunteer to help patients. For me I would love to be able to provide transportation to and from dialysis for patients who cannot drive themselves.  That would be something I think would make a huge difference.

 

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