Parents Living with Kidney Disease

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Parents Living with Kidney Disease

Are you a parent living with kidney disease?... Share the ups and downs of parenting with chronic illness, with those who understand.

Members: 15
Latest Activity: Dec 7

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Comment by Glenn on November 4, 2014 at 9:05

Hello, my name is Glenn, I have two young boys and am a single father. I have PKD, but am not on Dialysis yet. I am writing about it on my blog - http://www.ihavepkd.com/

Comment by ushav on October 19, 2014 at 0:04
Hi Erica,
Hopr the PD starts working in your favour. I live in the Calgary area and if you sre inthis part of Canada pls do not hesitate to msg me in case you need any help. With best wishes, Usha.
Comment by Hilary on April 20, 2014 at 17:31
Hi Erica,
I just wanted to say welcome! I'm glad that you found us too!
My daughter is 9 as well - I am on hemodialysis at home.

It is tough when people don't get it. While I have little to no knowledge of PD, I get the mom angle - so please come back often.

I'm not sure if you've posted a new forum topic? You might get more views there (as we only have a few members in this group, so far). This site is actually only a few months old.

Looking forward to travelling this road with you!
Comment by Erica on April 17, 2014 at 15:42
I'm new to the group, and have to say I'm very happy to have found this!

I am a single mom to a 9 year old. I was diagnosed with MPGN in 2011. After 6 rounds of cyclophosphamide, it went into remission for a year and a half. My kidneys started to fail in October 2013, and I started hemodialysis after being admitted into the hospital just after Christmas.

I'm doing PD right now, but it doesn't seem to working the way they would like. My GFR is 2%, and dropping, and the toxins are building up, instead of being discarded with my fluid.

My daughter has had to grow up rather quickly, since it's just her and I. We don't have a lot of physical support, and no financial support.

Are there any parents here who have gone through all this with younger kids, who are older now? This is a scary place to be. My friends try to understand, but they can't truly.
Comment by Dyanne on March 21, 2014 at 22:15
I have pkd and am transplanted however my daughter also has pkd(she is 18) its difficult post transplant when they are younger as kids bring friends with colds etc so we had lysol wipes in the bathroom and at the front door and kat(my daughter) tells her friends- you sick you keep your germs away from mom! Where it gets hard is that she is sick too- we get pity, she worries when i am sick both about her future and mine AND she tells her friemds- that is my future- amd that as a parent who blames herself for giving her the disease- is so d*** hard!!! I got the disease from my dad who passed very young so i am scared like crazy!
Comment by Hilary on March 1, 2014 at 13:44
Hope you have a great get away. Your son certainly has the weather for snow boarding!!!
Comment by Andrew Hewitt on March 1, 2014 at 12:21

One of the Home nurses can never stop talking about the camp. Sounds very cool. I sent a lot of time in that area when I was younger. We are going to try a few days in Ellicotteville NY over the march break. My son is a snow boarder. I love going there cause we always run into friends.First time I've been in quite a while. Wish me luck.

Comment by Hilary on February 27, 2014 at 10:57
Thanks for sharing Andrew. Have you looked at Lions Camp Dorset as an option?... My favourite place in the whole wide world!!!
Comment by Andrew Hewitt on February 26, 2014 at 21:17

One of the worst things for me is not being able to get away with my family and not having the energy to enjoy all the activities we did before. Oh well 2 years hopefully and I'll get a transplant.

Comment by Hilary on January 9, 2014 at 16:20
One of the toughest things I've faced, as a parent on dialysis... is knowing when/how to disclose my health issues to my daughters friends parents. It's not as though I'm secretive about it (by any means)... but struggle sometimes. [I'll be honest... Can your daughter come and play? By the way, my kidneys don't work - is a little weird].

People are not always accepting. I'm not sure if they fear I am incapable of caring for their children (during a play date etc), or if they fear I am contagious, or maybe they are simply looking out for their children, and don't want them exposed to the concept of illness.

Is there anything you all deal with, as parents with chronic illness?...
 

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