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Author Topic: Last Post Loves IHD The Most!  (Read 1833603 times)
angela515
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i am awesome.

« Reply #22475 on: March 05, 2010, 06:23:37 AM »

yes tyefly.

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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
tyefly
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This will be me...... Next spring.... I earned it.

« Reply #22476 on: March 05, 2010, 06:51:57 AM »

Well I did get a letter from my transplant center.... but I didnt get one from UNOS...... Now I am wondering if I am on the List with UNOS....   maybe I am only on the transplant center  list.......   I wonder How I can find out.....
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IgA Nephropathy   April 2009
CKD    May 2009
AV Fistula  June 2009
In-Center Dialysis   Sept 2009
Nxstage    Feb 2010
Extended Nxstage March 2011

Transplant Sept 2, 2011

  Hello from the Oregon Coast.....

I am learning to live close to the lives of my friends without ever seeing them. No miles of any measurement can separate your soul from mine.
- John Muir

The clearest way into the Universe is through a forest wilderness.
- John Muir
paris
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« Reply #22477 on: March 05, 2010, 08:30:19 AM »

I have been listed at three centers and only got letters from each center (one being Johns Hopkins).  But, I know I am listed. The surgeon says I am "hovering" at the top.  So, I know I am not forgotten.  I think you are fine tyefly.     :2thumbsup;     Great news, Marc!

Waiting for good news about Chris.   :cuddle;

Went to 2 grands talent show last night. They are on the school dance team and were adorable.  Tonight is another grands play "The Princess and the Frog".  And tomorrow is our Pajama Pals open house.  I am tired, tired---but it is a good tired. 

And it is FRIDAY!!  Suppose to be mid 60's this weekend. Yea!!  Sun is shining and spring is coming.   :yahoo;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
angela515
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i am awesome.

« Reply #22478 on: March 05, 2010, 10:05:43 AM »

Getting one from your Transplant Center is good enough. I would call your transplant center and ask them to clarify for you, but idk why you wouldn't be on the UNOS list if they told you that you were listed.
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #22479 on: March 05, 2010, 10:52:14 AM »

ok warning...mini-rant.  :stressed;
My sister just texted me "It would be nice if you or our brother could take Mom out to dinner once a month. Get her away from her boyfriend." I said "it would be nice if someone took me out, all i have done the last 6 weeks is kidney stress." She said "not sure what that means.  what is kidney stress?"
She really has no clue, I am thinking. I said, "i have gone through anger, grief, denial, fear, and i guess i am finally approaching acceptance. mourning the slow death of Patrices kidney, trying to figure out what to do next, fending off dialysis and worried about Jennas anemia and fatigue."
She said "I can't ever know what you are going through that way. My heart breaks for all of you.. Jenna for having to go through this... You, as a Mom that fought hard to get medical help for my kid, I do understand the anguish."
Me: "it's going to be this way her whole life"
She said, "yes, that is kind of overwhelming to look at it that way..."

Uhhh ok.
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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
kitkatz
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« Reply #22480 on: March 05, 2010, 01:00:38 PM »

I am on break!  Hurray! Hurray!
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Slywalker
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« Reply #22481 on: March 06, 2010, 09:20:47 AM »

Bright and sunny today - the sap is running and the sugar houses are scurrying around boiling and probably staying up half the night.  Let the maple syrup making begin!!!!

Take care everyone and congrats everyone for being listed on the transplant lists. 

I hope Chris is getting better.

 :flower; :flower;
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YLGuy
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« Reply #22482 on: March 06, 2010, 11:11:34 AM »

I win
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Chris
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WWW
« Reply #22483 on: March 06, 2010, 12:49:13 PM »

My friend brought my laptop to the hospital. But won't spend to much time on it right now. I am also getting retested for c-diff again. Antibiotics were stopped to bring fever down and the diarrhea. Sti ll have trouble coughing and breathing, so getting up for long I get winded and dizzy. That is odd to me. I have a cat scan scheaduled to look in my head later today, breathing treatments have been switched to hand held devices  like asthma patients have. That in it's self is odd because they tell me these are better at getting more med into system than the nebulizer connected to the wall :urcrazy;
 
Still not my self, hard to say something funny.
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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?
YLGuy
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« Reply #22484 on: March 06, 2010, 01:56:38 PM »

Glad you are able to check in and give us an update.  We are all worried about you.
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Lisa
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« Reply #22485 on: March 06, 2010, 05:08:03 PM »

HI...me!!!!! :sir ken;
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Lisa
born 1966 with PKD
ESRD 1987
PD started 1987
1st hemo 1989 (permacaths, grafts and fistulas)
1st Transplant 1990
Transplant failed 1994
Hemo 1994 (permacaths, grafts and fistulas)
2nd Transplant 1995
Hemo 2010 (permacath hopefully merging into PD)
PD training 3/16/10
CAPD...the CCPD until present
...waiting to go on "the list"
YLGuy
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« Reply #22486 on: March 06, 2010, 05:59:59 PM »

I win for the rest of the day because it is my birthday!  :bandance;
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Lisa
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« Reply #22487 on: March 06, 2010, 08:14:19 PM »

...not fair...my b-day was in FEB!!!

HAHAHAHAHAHA   :birthday; :birthday;
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Lisa
born 1966 with PKD
ESRD 1987
PD started 1987
1st hemo 1989 (permacaths, grafts and fistulas)
1st Transplant 1990
Transplant failed 1994
Hemo 1994 (permacaths, grafts and fistulas)
2nd Transplant 1995
Hemo 2010 (permacath hopefully merging into PD)
PD training 3/16/10
CAPD...the CCPD until present
...waiting to go on "the list"
galvo
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« Reply #22488 on: March 06, 2010, 09:13:20 PM »

Yeah. :birthday;
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Galvo
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« Reply #22489 on: March 07, 2010, 07:12:37 AM »

Morning IHD - nice sun shiny day here again today.  The sap will flow by this afternoon.  Temps suppose to be in the mid-30s today.   

I hope everyone has a great Sunday.

 :flower;  :flower;
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Pam
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« Reply #22490 on: March 07, 2010, 08:33:51 AM »

Happy Sunday IHD! The sun is shining and hopefully more of this white stuff will be gone today. We have company...a flock of 10 wild turkeys have been showing up everyday in our back yard. Country life is good. :clap;
Pam
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Des
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« Reply #22491 on: March 07, 2010, 08:32:20 PM »

Morning,

as always I Hate Mondays!

Chris, I hope you had a wonderful birthday-weekend.
What prezzies did you get.?
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
YLGuy
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« Reply #22492 on: March 07, 2010, 09:11:17 PM »

I think you meant Marc.  I am a single dad.  I don't have another adult in my life to buy me presents to open.  I have the best gift a father could ask for.  3 beautiful healthy children. 
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Slywalker
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« Reply #22493 on: March 08, 2010, 05:36:07 AM »

Morning IHD - sun STILL shining - spring is in the air - hopefully everyone at work today will be happy as a result of sunny skies for a change - even though it is a Monday.

Have a great day Everyone.

 :flower;   :flower;
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YLGuy
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« Reply #22494 on: March 08, 2010, 07:00:06 AM »

I was asked to speak at a smoking cessation class tonight.  Day 101 without a cigarette. 
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paris
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« Reply #22495 on: March 08, 2010, 07:15:42 AM »

High 60's today with bright blue skies.   :2thumbsup;     Come on Spring!!

We have been having trouble with our phone line lately. 4 times, 911 has been called by our phone in the middle of the night. We can't call out on the phone nor receive calls---just lots of static. But it can automatically call 911 at 4 in the morning!  In my quiet little neighborhood, police cars showing up in the middle of the night is NOT usual.   ATT keeps saying there is nothing wrong with the lines!  So, we switched to Vonage--buh bye ATT!  And my bill will be half of what it has been.   I am tired and grumpy this morning. It scares you when you hear loud banging at your front door at 4am. 

On a better note, our Pajama Pal drive was a huge success.  80 pairs of pajamas and 364 books for children in need.   :2thumbsup;   Our own Jess21 overnighted a big box of new pajamas!!  What a wonderful surprise.  The grandkids were very excited to open that box.  Thanks Jesse!!!
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #22496 on: March 08, 2010, 10:36:28 AM »

 :cheer: Great job with Pajama Pals paris - such a great cause. Very cool that Jess helped out!

It rained here yesterday but looks like most of the storm has moved through. The local mountains got a beautiful layer of snow, but it won't last long.

I am still picking navel oranges off the tree in our yard, they are perfect right now. I should trade some for my neighbors tangerines and lemons, she has a huge crop!

My back has been hurting for 5 days so I have been being careful and using a heating pad. I have so much to do but I want to heal, so I am taking it easy. It's so boring though, I have watched more tv than ever! New shows Parenthood and Modern Family are great. Also watched the movie "Lars and the Real Girl" which was good, and have seen the entire season of LA Ink, Celebrity Rehab, Hung, Bad Girls Club, Mad Men and anything else I can get on Cable on Demand.  :P
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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
Des
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« Reply #22497 on: March 08, 2010, 10:52:32 AM »

I think you meant Marc.  I am a single dad.  I don't have another adult in my life to buy me presents to open.  I have the best gift a father could ask for.  3 beautiful healthy children.

Sorry Marc... The kidney failure is taking it's toll :rofl;

Did the kids not make you cards or anything? I would have baked you a cake if I were closer.
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
paris
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« Reply #22498 on: March 08, 2010, 12:13:28 PM »

Karol --  I think my family is the Modern Family.   At the Pajama Pals open house we had:  Melissa's ex, his new wife, their new baby, 2 drag queens, a Southern Baptist, a couple of very conservatives and a few liberals!!!  Oh, yeah and a Muslim.  Hmmmm--- did we miss any group???   Volunteers all look the same to me!  Big hearts and willing hands   :2thumbsup;        I hope your back starts improving. You have had so much stress the past couple of months.  Your body finally is making you stop.  Take care.

Des, that is why I like everyone here----- we all have the same memory problems!!   :rofl;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
Slywalker
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« Reply #22499 on: March 09, 2010, 05:17:47 AM »

Morning IHD - still sunny in the northeast - it is unbelievable really to have such nice weather so many days in a row.  Me and my doggies are quickly becoming spoiled.   :bandance;

Have a great day everyone.   :flower;

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