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Author Topic: Life On The List  (Read 8157 times)
Cordelia
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« on: June 04, 2012, 05:16:08 PM »
I have created a Facebook page, called Life On The List.

Feel free to come and join and post/blog about your time waiting on the List for an organ.



Please feel free to join, my addess is:



http://www.facebook.com/#!/groups/399025610139888/
« Last Edit: June 04, 2012, 05:17:16 PM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Chris
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WWW
« Reply #1 on: June 04, 2012, 10:09:40 PM »
Link only takes you to home page.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
Cordelia
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« Reply #2 on: June 05, 2012, 03:10:39 AM »
Hi Chris, Try  this link:   



   https://www.facebook.com/groups/399025610139888/
« Last Edit: June 05, 2012, 03:14:29 AM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
chiawana
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« Reply #3 on: June 07, 2012, 08:35:17 PM »
I requested to join the group even though it's my husband who is on the waiting list. Hope that's okay.
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My husband is represented in the avatar - he's a Capricorn, the Goat. He's been knocked off his mountaintop so many times by his health issues, but he continues to fight his way back to the top, a little worse for wear.
Cordelia
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« Reply #4 on: June 08, 2012, 06:31:31 AM »
Quote from: chiawana on June 07, 2012, 08:35:17 PM
I requested to join the group even though it's my husband who is on the waiting list. Hope that's okay.

Absolutely!  It's great to have you there!   Please invite others to join if you know anyone who might like to.  The more the merrier!          :grouphug;

Definitely, caregivers, spouses, are invited to join too. My husband is there too         :)
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #5 on: September 07, 2012, 04:23:17 AM »
Just refreshing this thread, extending out the invite to others, here's my link:

https://www.facebook.com/groups/399025610139888/

Please feel free to join the goup             :welcomesign;
« Last Edit: September 07, 2012, 08:09:04 AM by Cordelia » Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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« Reply #6 on: October 26, 2012, 05:20:01 AM »
I'm so pleased and happy that we have roughly 90 members on site!       :bandance;

If anyone else would like to join, please feel free to join!

Here's my facebook link:

https://www.facebook.com/groups/399025610139888/
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
MommyChick
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Me & my precious Miracle !!!
« Reply #7 on: October 26, 2012, 09:52:33 AM »
Sending you a request for that page :)
Logged
~ Hello All, My names Marna ~

- 1995 - 12 yrs old found out my kidneys were both failing
- 1996 - Dec. 3 I received my 1st kidney transplant at age 13, after 7/mths on the waiting list
- 2005 - In Aug. transplant failed after 9.5 years, had to have a nephrectomy due to being very ill & massive hypertension
           - End of Aug. 1st time on dialysis
- 2006 - Had my fistula placed & ready to go
- 2010 - My little Miracle was born 6/mths into the pregnancy, weighing 2.4 lbs & 13.25 in long
          - Found out my PRA is 100% & I have antibodies that CAN'T be decreased
- 2013 - Oct. 2nd  *** I finally received my kidney!!! ***
          - Dec. 3rd I had 3.5 parathyroids removed, due to them interfering w/my new kidney.
Cordelia
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« Reply #8 on: October 26, 2012, 11:40:07 AM »
Thanks!         :thx;         Hope you made it over ok, I added a few people today            :flower;

Thanks for joining us there       :cheer:
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #9 on: November 23, 2012, 05:16:10 AM »
Happy Thanksgiving everyone. I would like to extend the invite out for anyone to join my group, I extend the invite out to transplant recipients, those waiting for any organ and caregivers/family/friends...

https://www.facebook.com/groups/399025610139888/
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #10 on: December 21, 2012, 05:18:33 AM »
Merry Christmas everyone, Happy Holidays!              :bandance;         :yahoo;

I have a support page on Facebook for people waiting for a transplant, people who are recipients and caregivers/friends/family. Please join us, here's my link:

https://www.facebook.com/groups/399025610139888/
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #11 on: January 21, 2013, 12:42:09 PM »
Come and join my group!

https://www.facebook.com/groups/399025610139888/
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #12 on: April 07, 2013, 06:02:46 AM »
Still encouraging new members to join! Come and join us! See the above link!
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #13 on: June 02, 2013, 12:43:10 PM »
I still have this facebook support group running if anyone new would like to join         :)        :flower;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #14 on: September 06, 2013, 01:14:16 PM »
This group is still running, if anyone would like to join, feel free to come!      :grouphug;          :welcomesign;

It's a good support goup and active!         :bandance;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
jeannea
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« Reply #15 on: September 06, 2013, 04:48:43 PM »
I'm glad to hear you're running a good group. I'm frustrated with the Facebook I Hate Dialysis. So much of it seems to be that everyone is out to get you especially doctors. Depresses me. I'll check you out.
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Cordelia
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Posts: 2012
« Reply #16 on: January 27, 2014, 06:01:53 AM »
Hi Jeannea, so sorry that I missed your post, thanks so much for posting!         :cuddle;           :thx;

Here's the link below again if you or anyone else needs it.   Anyone is welcome to join          :)     



https://www.facebook.com/#!/groups/lifeonthelist/
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #17 on: March 17, 2014, 07:16:45 AM »
Please feel free to join my site, here's the link:

https://www.facebook.com/groups/lifeonthelist/
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #18 on: July 15, 2014, 10:18:01 AM »
I'd like to extend an invite for anyone to join my group. My link is posted in the above posting. Its is a closed group, please feel free to join, those who are waiting for a transplant and caregivers are welcome to join!              :welcomesign;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Posts: 2012
« Reply #19 on: September 22, 2014, 08:34:05 AM »
Please feel free to come and join my group. We are a small group but growing, hope that you can come and join us and enjoy my facebook group       :waving;
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Gender: Female
Posts: 2012
« Reply #20 on: November 25, 2014, 05:01:46 AM »
My site is still running, please feel free to come and join us. We are a small support group of about 500 members. Hope you will join us          :grouphug;

my group is open to those who are waiting for a transplant and for those who are caregivers.         :)
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
Cordelia
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Gender: Female
Posts: 2012
« Reply #21 on: March 12, 2015, 10:16:28 AM »
If anyone would like to come and join my site, you are most welcome to join. It is for people waiting for any kind of transplant. Caregivers are welcome to join also         :)
Logged
Diagnosed with Polycystic Kidney Disease at age 19.
Renal Failure at age 38 (2010) came about 2 hrs close to dying. Central line put in an emergency.
Began dialysis on Aug 15, 2010.
Creatine @ time of dialysis: 27. I almost died.
History of High Blood Pressure
I have Neuropathy and Plantar Fasciitis in My Feet
AV Fistula created in Nov. 2011, still buzzing well!
Transplanted in April, 2013. My husband and I participated in the Living Donor paired exchange program. I nicknamed my kidney "April"
Married 18 yrs,  Mom to 3 kids to twin daughters (One that has PKD)  and a high-functioning Autistic son
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