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smcd23
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The patient, the baby and the donor - October 2010

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« on: May 29, 2012, 08:19:44 PM »

So I started a blog as a way to get out some of my feelings/thoughts/stories about this horrible illness that seems to consume our family. Like seriously, our lives seem to revolve around SO's ESRD. So if anyone wants to check it out, the address is http://kidneymama.blogspot.com/

I just posted a little story from tonight with our son and the dialysis boxes, but I plan to post a lot more. And if anyone has any suggestions or complaints (constructive criticism?) feel free to share.

Just thought I'd throw it out there in case anyone wants to check it out.
Logged

Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
deniferfer
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My nickname is princess

« Reply #1 on: May 29, 2012, 09:03:10 PM »

Awww that was a very cute story!!! When I would babysit my cousin she was about that age and i love how they look at the world. They don't see the boxes as anymore then just a box that can become something better. Maybe tomorrow bring out some markers and let him decorate it up and make it his?   

Oh I just remember a story with my cousin, she shared the bed with me one night and of course I had the machine going. She wasn't bothered by it at all. Till the next day I went to put her down for nap in my bed again and she asks me to turn on the nightlight and I look around and tell her I don't have on. Then she points to the machine... I smiled and turned it on for her.  ;D

Great start to a blog and I hope you do more and I will enjoy reading them!!   
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1981-1995: Perfectly fine
1996: November, started feeling sick
1997: April, creatine at 17 and began dialysis    
1997: May Place on PD
2006: Had to replace PD tube
MooseMom
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« Reply #2 on: May 29, 2012, 11:31:27 PM »

A blog is a great outlet!  I hope you find it to be therapeutic.  Thanks for posting the link and for allowing us to share your experience with ESRD.
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"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #3 on: May 30, 2012, 05:23:23 AM »

Good for you!  Great way to get all of those feelings out there.

Not to be stupid, but how does one start a blog?  I think I'd like to try it.

 :flower; :flower; :flower;
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Poppylicious
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WWW
« Reply #4 on: May 30, 2012, 10:01:20 AM »

Yay! Another kidneyblogger!  I shall add you to my blogroll thingy (not that I have many linkages on there.)

WIK: t'is easy, my love.  Just go to somewhere like Wordpress(.com) or Blogger(.com) [I favour Wordpress personally], choose a username and just write away to your hearts content.  Read other blogs (mine are linked in my signature below and my kidney one has links to other transplant/dialysis blogs) to get an idea if you're not sure what to write.  Don't expect vast numbers of people to read or comment though (unless you're prepared to pay to get people to visit your site!); I use mine purely for therapy and if it helps someone somewhere who happens to stumble across it, then all the better.

Keep on Blogging smcd!

 ;D
« Last Edit: May 30, 2012, 10:02:22 AM by Poppylicious » Logged

- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
smcd23
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The patient, the baby and the donor - October 2010

WWW
« Reply #5 on: May 30, 2012, 05:46:23 PM »

Yeah I don't expect to get rich or famous blogging, and blogging about ESRD of all topics, but I figured it will give me something to do, and it will keep me from prattling on here about everything :) Ya'll can go over there and look at my musings haha. I figure I'll update it every day or every other day, when interesting stuff happens, which unfortunately seems to be quite frequently.
Logged

Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
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