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Author Topic: Marvin got a call! Waiting...  (Read 20144 times)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #25 on: April 01, 2009, 08:08:28 PM »

  :cheer:  Keeping good thoughts !!   :cheer:
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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
Zach
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"Still crazy after all these years."

« Reply #26 on: April 01, 2009, 08:39:27 PM »

 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
Joe Paul
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« Reply #27 on: April 01, 2009, 09:32:01 PM »

Good luck Marvin, I hope this kidney works out for you  :thumbup;
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"The history of discovery is completed by those who don't follow rules"
Angels are with us, but don't take GOD for granted
Transplant Jan. 8, 2010
rose1999
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« Reply #28 on: April 01, 2009, 11:19:54 PM »

 :yahoo; We've been missing you but what great news to hear on your return.  Of course I will pray for Marvin, I hope you'll be able to update us with good news soon.  Crossing everything and praying hard, Rose xx  :grouphug;
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #29 on: April 01, 2009, 11:27:09 PM »

 :flower; Hi!
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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
Wattle
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« Reply #30 on: April 02, 2009, 12:34:23 AM »

 :cheer: :cheer: :cheer: :cheer: :cheer:

Yipppeeeeee

Thats Fantastic news Petey and Marvin.

I am thinking no news is good news and the kidney was a go....    :cuddle;    :cheer: :cheer:
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PKD
June 2005 Commenced PD Dialysis
July 13th 2009 Cadaveric 5/6 Antigen Match Transplant from my Special Angel
petey
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« Reply #31 on: April 02, 2009, 01:27:05 AM »

No news yet...still waiting...this is agony

For all the other calls Marvin's had, we never had to wait this long.  I'm hoping that's a good thing...

It's been a long, long, long, long night.  Marvin is actually sleeping a little bit now.
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Sunny
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Sunny

« Reply #32 on: April 02, 2009, 02:05:34 AM »

I hope it works out and he gets this one. I've got my fingers crossed for you. Good luck.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
RichardMEL
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« Reply #33 on: April 02, 2009, 02:55:27 AM »

Oh my gosh Petey/Marvin!! How nerve wracking!!! My fingers, toes and kidneys are crossed(heck they're not working anyway so might as well cross 'em!)...

hoping to hear good news soon!!!! sending positive vibes!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
petey
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« Reply #34 on: April 02, 2009, 04:08:30 AM »

...still waiting...haven't heard a thing...is no news good news?
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willieandwinnie
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« Reply #35 on: April 02, 2009, 04:23:13 AM »

petey, I had trouble logging on my desktop computer and got my laptop out. I couldn't stand it anymore. I  know how hard it is to be patient. Len got he's call at 2:30am on Thursday morning and the kidney didn't get to DC until afternoon 12 on Friday. It was horrible and a very nervous time. Remember that the kidneys are the last to be harvested and then there is travel time from who knows where. The weather could be playing a part in this. I keep praying that they will call you soon. I am a wreak just waiting for you, can't imagine how you and Marvin are feeling.  :cuddle; I am going to just keep my laptop up and running today so I can keep checking. I am praying as hard as I possibility can Marsha.  :bow;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
monrein
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Might as well smile

« Reply #36 on: April 02, 2009, 04:31:46 AM »

Really hoping that this is the one.  Big hugs to you both.  :grouphug;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
lola
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I can fly!!!

« Reply #37 on: April 02, 2009, 05:20:47 AM »

Petey the family may have asked for more time with the pt? that's what happened with Otto, they needed a few more hours. Hang in there  :cuddle; :cuddle; :cuddle; :grouphug; :grouphug; :grouphug;
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2_DallasCowboys
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« Reply #38 on: April 02, 2009, 05:38:29 AM »

Oh, Petey!

Hoping and praying for you and your Marvin, that this is the one!!!

Wishing you both only the best here in NJ,

Love, Anne and Les
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pelagia
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« Reply #39 on: April 02, 2009, 05:40:07 AM »

It must be hard. It seems like an eternity already.  :cuddle; :grouphug;   
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As for me, I'll borrow this thought: "Having never experienced kidney disease, I had no idea how crucial kidney function is to the rest of the body." - KD
Sluff
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« Reply #40 on: April 02, 2009, 05:48:47 AM »

What a blessing this might be... :cuddle; 
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willieandwinnie
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« Reply #41 on: April 02, 2009, 06:23:18 AM »

petey, I think it is time to call that coordinator. She has to be able to give you some kind of update. I hate it when they leave you in limbo.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
petey
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« Reply #42 on: April 02, 2009, 06:55:19 AM »

We took your advice, willieandwinnie, and Marvin called the coordinator.  She said, "Your status hasn't changed.  You're still first in line.  No news is good news.  Wait by the phone."

Marvin asked if she could tell him the status of the kidney (been harvested?  in route?  at Duke and in testing?), and she said she couldn't tell him anything about it. 

To be sure, these people know where that kidney is and what's happening with it.  Why couldn't they tell us that much?  This is frustrating and agonizing. I want to  :banghead;

Of course, Marvin has a different outlook.  He says with the other 8 calls he's had (none worked out for him), it was much sooner when they called back and said, "It's not for you."  He's thinking that the long wait is a good thing.  "If they haven't called to tell me no, that means there's still hope," Marvin said.  He's telling me to be patient -- have I mentioned that I am NOT (definitely NOT, never have been, never will be) a patient person?

..we're still sitting here waiting.....and praying ...... and hoping ....... and waiting.......
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willieandwinnie
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« Reply #43 on: April 02, 2009, 07:09:00 AM »

oh petey. I know how frustrating this is. Len was admitted to WHC and waited 30 hours for the kidney to arrive in DC. We were beside ourselves. The transplant surgeon came in and said, "I promise you are getting a kidney today" but I paced all 5 stories of the hospital because I didn't know what else to do. We are all waiting with you and Marvin and still saying those prayers. Let us know when you can, if you can. We will be sitting on the edge of our seats. Waiting, waiting and waiting. I use to think my middle name was "waiting". Sending positive thoughts and loads of  :cuddle;
« Last Edit: April 02, 2009, 07:20:32 AM by willieandwinnie » Logged

"I know there's nothing to it, but I want to know what it is there's nothing to"
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #44 on: April 02, 2009, 07:36:24 AM »

I am glad you called the coordinator. The hard thing (besides the agony of waiting, of course) is that you cannot eat or drink if you're going in to surgery. That's a long time to be in limbo. But I know if it's meant to be it will all turn out fine. Petey, I will be thinking of you guys all day.
 :grouphug;
 :grouphug;
 :grouphug;
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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
monrein
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Might as well smile

« Reply #45 on: April 02, 2009, 07:43:46 AM »

Thinking of you both through the waiting.  I'm not patient either Petey.  Thankfully, at least one of you is.  :grouphug;

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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
paris
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« Reply #46 on: April 02, 2009, 08:41:53 AM »

We are all sitting here with HOPE.   And still praying   :grouphug;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
willieandwinnie
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« Reply #47 on: April 02, 2009, 08:57:45 AM »

petey, still waiting........ I need to go to the grocery store and I told Len I am going to take the laptop and he looked at me like I had lost my mind. I am not being very patient on your behalf.  :cuddle;
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"I know there's nothing to it, but I want to know what it is there's nothing to"
lola
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I can fly!!!

« Reply #48 on: April 02, 2009, 09:58:49 AM »

man I'm there with U :banghead; :banghead; I have to go to work and I'm gonna go crazy not knowing!!!! (Sluff or Karol if U here something b-4 6pm can U text me :bow;:grouphug; :grouphug; luv ya petey and keep hangin in there.
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Laurie
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May 13, 2008

« Reply #49 on: April 02, 2009, 10:41:30 AM »

How frustrating!!! I hope all the waiting pays off in the end.  :grouphug;
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March 7, 2001 - Complications after C-section caused kidney failure
March 2001 - December 2001 - Hemo Dialysis
December 2001 - Kidney function improved dialysis no longer necessary
October 2006 - Kidney function started to decline
May 9, 2007 - Listed at Baylor Dallas and Fort Worth
October 12, 2007 - Started PD
May 13, 2008 - Kidney Transplant from a deceased donor
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