I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
March 28, 2024, 06:15:38 PM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Transplant Discussion
| | |-+  The I received a call but it didn't work out thread
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: 1 [2] Go Down Print
Author Topic: The I received a call but it didn't work out thread  (Read 14682 times)
smartcookie
Full Member
***
Offline Offline

Gender: Female
Posts: 484


LMSW

« Reply #25 on: February 24, 2017, 08:05:21 AM »

You will get a kidney soon!  I just feel it!  :2thumbsup;
Logged

I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #26 on: February 25, 2017, 09:01:16 PM »

Oh man, I'm a wreck just reading about your most recent calls!

I'm really hoping you get to be number 1 in line for the greatest kidney ever very soon.  You have my very best wishes.
Logged

"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."
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 304


Health is not valued till sickness comes. T.Fuller

« Reply #27 on: February 26, 2017, 06:05:37 AM »

Hi Iolaire....here's hoping for a call with an offer really soon :)


 :thumbup;
Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #28 on: February 26, 2017, 08:28:42 PM »

Thanks for the well wishes and positive support. Honestly at this point I'm really only stressed when the call comes in and you know you are probably waiting for a kidney that will go to someone else. But it is starting to hit me just how long the wait is and that's for a simple non challenging match. I'm hoping that my story will help those random web visitors set their expectations. 
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #29 on: February 26, 2017, 09:33:36 PM »

iolare, I have no doubt that your story will prove helpful to more people that you know.  Thanks for posting.
Logged

"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."
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #30 on: March 07, 2017, 06:17:33 PM »

Spoke my transplant coordinator because i need to schedule a stress test.  Few hours laster (noon) received a call from the on call nurse with an alternate offer.  Number five alternate this time for a KDPI of 16 (again) from a mid thirties patient (no drug use) with a head injury.  Told them yes to the cross match.  9 PM received the call back and for the first time I had a "slow match" and thus the surgeon was removing me from the alternate list.  So its getting close but we will see.  Still odd how on the days I talk to the center I get a call, guess i should call more often.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
cassandra
Elite Member
*****
Offline Offline

Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #31 on: March 08, 2017, 09:37:56 AM »

.. Still odd how on the days I talk to the center I get a call, guess i should call more often.

Odd? Weird bordering scary.  ???
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #32 on: March 09, 2017, 05:43:51 AM »

.. Still odd how on the days I talk to the center I get a call, guess i should call more often.

Odd? Weird bordering scary.  ???
My Nephrologist came through last night and I mentioned that I'd get a call just after I talked to the center and asked if they have some sort of internal prioritization and he didn't think that was the case.  But he said if my premonitions are working to talk to the center than do it more..
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kristina
Member for Life
******
Offline Offline

Posts: 5530


« Reply #33 on: March 09, 2017, 06:22:52 AM »

Good luck to you iolaire in carrying on doing what you have to, in order to "get there" ...
... And the very best of good-luck-wishes from Kristina. :waving;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
kristina
Member for Life
******
Offline Offline

Posts: 5530


« Reply #34 on: April 10, 2017, 02:15:44 PM »

... Recently, just after I was being "hooked up" for my treatment, the nurses - all of a sudden - became very busy and took lots of blood samples from me and, after a little while, came back for more blood samples, telling me they don't know why there was a need for more blood to be taken  ... No one explained anything and the nurse who took more blood said, they don't know what it means, because another department requested it  ... I wish I could know what it all meant and hopefully it is a good sign for the future ... and perhaps I was being considered at that point as a just-in-case-extra-stand-by when the call came for someone else...
Nevertheless, these few hours of wondering certainly taught me how it feels when being "on edge" whilst anticipating and desperately hoping for the best   ...  :grouphug;
« Last Edit: April 10, 2017, 02:33:45 PM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #35 on: April 10, 2017, 03:08:34 PM »

Nevertheless, these few hours of wondering certainly taught me how it feels when being "on edge" whilst anticipating and desperately hoping for the best   ...  :grouphug;
Strange.   Good luck. 

It's been quite on my front. I've moved hospitals and have had no calls since. That last set of calls were nice but then you have to wonder when they will start back up.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
kristina
Member for Life
******
Offline Offline

Posts: 5530


« Reply #36 on: April 11, 2017, 04:19:40 AM »

Hello iolaire, I wish you all the best and good luck from Kristina. :grouphug;
P.S. ... and I wonder whose phone rings first ...  :cuddle;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #37 on: June 27, 2017, 07:09:58 AM »

I received another kidney call last night at the end of my dialysis shift just before 7 PM.  This was the first call since I moved my listing to GW. They don't give as much information as INOVA. What I was told is it was a younger kidney and some sort of code that sounded like it was an OD patient. The kidney was from out of town. They needed to do the cross match and also a biopsy. I would hear back in the middle of the night. So this time it seemed like I was primary.  So after hurrying up and waiting and trying to get some sleep I received the next call at 4:40 AM.  The biopsy didn't look good so no kidney this time. 
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
smartcookie
Full Member
***
Offline Offline

Gender: Female
Posts: 484


LMSW

« Reply #38 on: June 27, 2017, 12:26:23 PM »

You have had more calls than anyone I have ever heard of!  The next one will be it, though!  :flower;
Logged

I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #39 on: June 27, 2017, 01:06:50 PM »

You have had more calls than anyone I have ever heard of!  The next one will be it, though!  :flower;
Yes, it feels like INOVA was calling when I was not a high level alternate, where GW Hospital waited until I was primary to call.  Honestly I thought I would have gotten a transplant years ago because I got my first call about a month before D.  Looking back I should have gone on PD, or done home Dialysis, both of which I thought would be my preference but I skipped because it felt like I was close to a transplant.  At this point its sort of mute because I'm at the average 5 year wait point so I should be getting close for real.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Xplantdad
Full Member
***
Offline Offline

Gender: Male
Posts: 304


Health is not valued till sickness comes. T.Fuller

« Reply #40 on: June 27, 2017, 01:09:09 PM »

Here's hoping for something soon Iolaire!
Logged

My name is Bruce and I am the caregiver for my daughter Holly who is 31 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
justagirl2325
Full Member
***
Offline Offline

Posts: 274

« Reply #41 on: June 27, 2017, 01:21:46 PM »

Yes, here's hoping it's very soon.
Logged
cassandra
Elite Member
*****
Offline Offline

Gender: Female
Posts: 4974


When all else fails run in circles, shout loudly

« Reply #42 on: June 27, 2017, 02:59:09 PM »

Good luck and positive vibes from across the pond Iolaire

   :cheer:
Logged

I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #43 on: July 11, 2017, 05:56:46 AM »

Life on the transplant list - received a call 3 AM on Monday morning.  I came up as an alternate for a younger donor.  The nurse said would run the blood and get back to me at about 7 AM.  I'm still sort of surprised at the difference in information provided between INOVA and GW - where INOVA gave lots of details on the kidney quality and also asks formally do I approve for them to do the blood cross match - GW basically just says the donors age and then talks about the next steps, they don't formally ask to run the cross match. After that was a restless sleep with lots of transplant center waiting room dreams.  The call at 7 AM was another hospital took both kidneys.  I was still backup but I could eat and they should call me later in the day just to confirm that I was not needed as an alternate.  Of course I never received the follow-up call.  But it’s getting close, hard to say when will be the real day but should be sometime this year.  Thanks to the donor's loved one's who likely agreed to move forward with transplantation.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
Tora66
Newbie
*
Offline Offline

Posts: 33

« Reply #44 on: July 13, 2017, 04:59:52 PM »

I received a call and was admitted to the hospital to prepare for transplant in October of 2016. There was one person ahead of me who ended needing both donatated kidneys. That was the only call I received. Been on dialysis 3 years and 9 months.
Logged
okarol
Administrator
Member for Life
*****
Offline Offline

Gender: Female
Posts: 100933


Photo is Jenna - after Disneyland - 1988

WWW
« Reply #45 on: July 13, 2017, 10:53:01 PM »

Wow that's a  lot of missed opportunities! Sounds very frustrating.
Jenna has waited 5 years, 3 months. She got her first call a couple of months ago as 3rd in line for a high risk kidney. First 2 people took the kidneys.
This will be her 2nd transplant, 100% PRA.
Sucks being 31 years old and waiting so long, but I know other people who have waited much longer, or never get a chance to join the waiting list.
You must have very low PRA to get so much activity. Best wishes that the next one is it iolaire.

Logged


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
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2022


« Reply #46 on: July 24, 2017, 03:08:16 PM »

Looks like I'm done with this thread!  See My transplant life has started for the next chapter.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
smartcookie
Full Member
***
Offline Offline

Gender: Female
Posts: 484


LMSW

« Reply #47 on: July 25, 2017, 10:42:59 AM »

 :yahoo; :yahoo; :yahoo; :yahoo;
Logged

I am a renal social worker.  I am happy to help answer questions, but please talk to your clinic social worker for specifics on your particular situation.
kristina
Member for Life
******
Offline Offline

Posts: 5530


« Reply #48 on: July 26, 2017, 02:02:44 AM »

Hello iolaire, :yahoo;
You have tried so very, very hard and I am so happy about your success !
Take great care and please let us know how "things" go.
Best wishes and good luck for the future from Kristina. :waving;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
AshtonsMuse
Newbie
*
Offline Offline

Gender: Female
Posts: 42

« Reply #49 on: July 26, 2017, 01:43:41 PM »

 :bandance; :yahoo;  :bandance;

Very happy for you!
Logged
Pages: 1 [2] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!