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Author Topic: Dialysis/Transplant Blog  (Read 4167 times)
Steve-0
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« on: September 10, 2010, 09:28:26 AM »
Hey guys.  I'm definitely more of a lurker on these forums, but I do read them and I know your stories and experiences inspire and influence me.  I've started a blog about my experiences with dialysis and hopefully my upcoming (second) transplant.  It's in the infant stages now, but I'll be adding more and definitely linking to here.  If you have a kidney blog and would like me to link to you, let me know - I'd be happy to put the word out for you too.

My father-in-law is hopefully donating a kidney to me, and he's going to be starting his own blog which will be a companion to mine which chronicles his experiences as a donor.

So, if you're interested, drop in to www.thekidneyboy.com or www.thekidneyboy.blogspot.com to check out my story.  Thanks!


~Steve
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Steve-0
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« Reply #1 on: September 13, 2010, 06:02:20 PM »
 Thanks to all who've stopped in to read -

I want to make my links section very comprehensive, so if you have any suggestions of pages I should link to and other blogs, etc. - please let me know.  I keep getting more and more friends and family asking me about dialysis links.  It's nice to be able to give them insight into people's plights with it all.


~Steve
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #2 on: September 13, 2010, 10:03:10 PM »
Hey is that kidneyboy, from twitter?
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
MooseMom
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« Reply #3 on: September 14, 2010, 12:36:24 AM »
Wait a minute...what happened to Dad?  You can't leave us suspense like this!
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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."
Steve-0
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« Reply #4 on: September 23, 2010, 11:43:31 AM »
Quote from: MooseMom on September 14, 2010, 12:36:24 AM
Wait a minute...what happened to Dad?  You can't leave us suspense like this!

Haha... if you haven't read, there's been several more updates that continue the story.  Check it out sometime!

~Steve
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Bill Peckham
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« Reply #5 on: September 23, 2010, 06:01:00 PM »
Even though I haven't updated my big list of CKD Blogs in a while - I had to add you because of the nice flattering link you gave DSEN :)
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Steve-0
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« Reply #6 on: September 24, 2010, 10:19:59 AM »
Quote from: Bill Peckham on September 23, 2010, 06:01:00 PM
Even though I haven't updated my big list of CKD Blogs in a while - I had to add you because of the nice flattering link you gave DSEN :)

Thanks Bill.  You know your blog is pretty incredible - and it's been inspiring to me for a long time.  Thanks for the link, sir!

~Steve
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okarol
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« Reply #7 on: September 24, 2010, 12:04:28 PM »

Thanks Steve, for adding IHD to your Blog page!!  :bow;
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Steve-0
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« Reply #8 on: September 24, 2010, 12:59:56 PM »
Quote from: okarol on September 24, 2010, 12:04:28 PM

Thanks Steve, for adding IHD to your Blog page!!  :bow;

Please?  Are you kidding?  This site is amazing - not only for dialysis patients, but also for their friends and families.  If I can help spread the word just a bit... I've done something positive.  The amount of positivity and progress that IHD has contributed to the world is really immeasurable.

~Steve
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Steve-0
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« Reply #9 on: October 08, 2010, 12:57:42 AM »
Major disheartening update today.  They won't let my father in law donate, even though he's a match.

We're all heart broken.  I know it comes with the territory - the possibility of failure always looms large, but I was really hoping for a break this time. 


Anyway, I'm pushing on.  We'll see what happens in the coming months.


~Steve
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #10 on: October 08, 2010, 10:58:23 AM »
I am sorry about your FIL not being able to donate to you. You can still enlist him as your advocate to help get the word out that you still need a kidney donor.
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
carol1987
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« Reply #11 on: October 09, 2010, 01:38:08 PM »
So sorry Steve-o!!!! :cuddle;
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Diagnosed with  PKD July 2002 (no family history)
Fistula placed April 2009
Placed on Transplant list April 2009
Started HD 10/6/10
Transplanted 1/6/11 (Chain Transplant My altruistic donor was  "Becky from Chicago" , and DH Mike donated on my behalf and the chain continued...)
Steve-0
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« Reply #12 on: October 10, 2010, 06:46:30 PM »
Hey, thanks.  My wife and I were reeling pretty hard from all of it this weekend - but my father in law came over, hung out, and we all talked and tried to remember all the good things we have.  I mean, being young and on dialysis sucks, but we've got a lot of other good things going for us.  I guess we were just so excited at the prospect of having a transplant.

I met my wife at the end of my first transplant's life - I wasn't on dialysis for the first four months we dated, but I've been back on dialysis now for almost four years.  We're looking forward to a dialysis free time in our lives.

So, we had our cries and tantrums this weekend, and we're moving on.  Kidney Failure sure is a tough disease.


~Steve
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Steve-0
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« Reply #13 on: October 31, 2010, 09:12:44 AM »
I've been getting a lot of hits on my blog - it's been cool; I've gotten letters from a lot of patients and care givers about dialysis.

I'm looking into going to Georgetown to see their transplant program - it's quite a ways from where I live, but they have a good program I'm told.  I'll be blogging about it soon.

If you haven't checked it out, give my blog a read - share you stories too if you like.  I love hearing from people.


http://www.thekidneyboy.blogspot.com

~Steve
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Steve-0
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« Reply #14 on: November 23, 2010, 09:14:28 AM »
Still chugging away on the blog. 

I'm still doing NxStage treatments, and now we're looking into going out of town/state to another transplant center.  I don't feel like the center in my town is really working out - they rejected my father-in-laws offer of kidney donation because "his protein is too high" yet his other doctors and nephrologists say it's fine.... it's kind of a mess.

Anyway, I'm still writing the blog, so check it out if you've got time and are interested.


~Steve
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