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| | |-+  We got the CALL...at 4:00am this morning!
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Author Topic: We got the CALL...at 4:00am this morning!  (Read 17844 times)
justagirl2325
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« Reply #50 on: March 01, 2017, 07:41:38 AM »

Wonderful update, thank you.
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #51 on: March 06, 2017, 07:59:25 AM »

Wonderful update, thank you.


 :thumbup; Thank you everyone :)
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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!
LorinnPKD
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« Reply #52 on: March 06, 2017, 08:29:55 AM »

Oh, this is wonderful news!  And I am so thrilled for that 1.2/1.1 creatinine.

Wishing Holly and "Alejandro" (love that) many years of good fortune!
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kristina
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« Reply #53 on: March 06, 2017, 09:09:17 AM »

Many thanks for the update Xplantdad,
I am so glad that "things" are going well for all of you
and I am also glad to read that Holly is now on a low dose of immunosuppressants...
I send you my best good-luck-wishes from Kristina. :grouphug;
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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 ...
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #54 on: March 08, 2017, 06:45:30 PM »

Thanks you Lorinn and Kristina  :thumbup;
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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!
MooseMom
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« Reply #55 on: March 09, 2017, 07:34:14 AM »

Does Holly talk much about this whole transplant experience?  Is she taking it all in stride, or is she rather blown away by it all?
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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."
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #56 on: March 09, 2017, 02:51:53 PM »

MM....Since Holly had a heart transplant at the age of 5 1/2 months...we've had 26+ years to discuss transplantation (the tremendous gift that she was given 26 years ago that allowed her to be here now). We've had numerous talks when Holly was smaller. She (and we) have learned to live each day...as if it's our last....and relish our time together. :cuddle;

We have recently found and been in touch with the donor family and hope to meet up with them soon-they have had a harder time with this than Holly (as being a transplant is all she's ever known...I told them that I am available whenever they need any questions answered. I have shared with them pictures of Holly (only after I asked if they wanted to see them) and some of the newspaper clippings, too.

As far as the kidney, Holly is aware that someone passed away-and was able to help a bunch of people. Kidneys went to Holly and another female at Mayo, liver went to someone at Mayo, pancreas and lungs went to another person at Mayo :)

I think this whole experience has been a whirlwind, but in an odd way, Holly was able to experience some of the stress/anticipation/rejection that we experienced while waiting for Holly's heart transplant.

Does that even make sense? ???
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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!
MooseMom
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« Reply #57 on: March 10, 2017, 01:27:09 PM »

Yes, that makes sense.

Since she has had a transplanted heart for so many years, now that she has a new kidney, has her meds regimen changed at all? 
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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."
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #58 on: March 10, 2017, 07:45:55 PM »

Yes, that makes sense.

Since she has had a transplanted heart for so many years, now that she has a new kidney, has her meds regimen changed at all?

Oddly enough, she's on less immunosuppressants now (lower dose of Tacrolimus) than before the kidney transplant. I would have to attribute that to the better kidney function. She's now taking the lowest dose available of Myfortic as well (which she wasn't on before the translpant :) )
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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!
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #59 on: December 22, 2017, 04:36:56 AM »

I wanted to update everyone at the one year anniversary for Holly after the kidney transplant. All is going great! She had almost two weeks of testing for both the kidney and the heart transplants-and the doctors couldn't be happier. They did the second kidney biopsy this year-all is good. She doesn't have to have another biopsy until 2022. She's been "pushed out" officially and will only see the kidney transplant team twice a year (June and December). She will only see the heart transplant team once a year (December). They will piggy back the blood tests for both-so they are done at the same time, too. Blood tests will happen every 3 months to check immunosuppressant levels.

We are blessed in many ways-and are so thankful for the donors and their families for their gift of life....that allowed our daughter to still be with us!
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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!
kickingandscreaming
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« Reply #60 on: December 22, 2017, 05:00:24 AM »

That's great news, XPD.  May there be many more great reports.  Go Holly.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
iolaire
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« Reply #61 on: December 22, 2017, 06:15:31 AM »

We are blessed in many ways-and are so thankful for the donors and their families for their gift of life....that allowed our daughter to still be with us!

I second that. 

I remember talking about the choice to be a donor a few times as a young adult (and making the choice).  But from my experience most of us make the choice knowing its a good thing to do but without any real grasp whosoever of the significance of the choice.  That choice ends up having a huge significance once you or your loved ones benefit from that choice.
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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
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LMSW

« Reply #62 on: December 22, 2017, 06:35:11 AM »

Awesome news! 
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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.
cassandra
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« Reply #63 on: December 22, 2017, 01:37:58 PM »

Thanx for the update. Great to hear such good news.


  Love, luck, strength, Cas


   :cheer:
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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
PrimeTimer
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« Reply #64 on: December 22, 2017, 10:34:41 PM »

I wanted to update everyone at the one year anniversary for Holly after the kidney transplant. All is going great! She had almost two weeks of testing for both the kidney and the heart transplants-and the doctors couldn't be happier. They did the second kidney biopsy this year-all is good. She doesn't have to have another biopsy until 2022. She's been "pushed out" officially and will only see the kidney transplant team twice a year (June and December). She will only see the heart transplant team once a year (December). They will piggy back the blood tests for both-so they are done at the same time, too. Blood tests will happen every 3 months to check immunosuppressant levels.

We are blessed in many ways-and are so thankful for the donors and their families for their gift of life....that allowed our daughter to still be with us!

So glad that Holly is doing well. I personally know of a family whose loved one donated her kidneys upon her death. The family said it softened the blow for them and helped knowing that she gave someone life. They want the recipient to do well. Sounds like Holly is doing very well. Her gifts of life are in the right place being with her. Very happy that you have shared this with us. Hope you have a very Merry Christmas!  :santahat;
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
justagirl2325
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« Reply #65 on: December 23, 2017, 09:12:37 AM »

Thanks for the update, merry christmas.
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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #66 on: December 26, 2017, 07:33:34 AM »

Thank you everyone for the positive wishes. We had a very good Christmas. As I said before, we are blessed.

Thanks for being here for us!  :grouphug;
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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!
Michelle2016
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« Reply #67 on: December 26, 2017, 01:44:59 PM »

I really like the quote from you: Thank God and donor for another day. Everything else is irrelevant.  It’s my everyday’s mantra now.

Take care.

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Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #68 on: December 26, 2017, 02:23:13 PM »

:)
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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!
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #69 on: December 22, 2018, 09:07:38 PM »

I wanted to update everyone...since today is the 2nd anniversary of Holly's kidney transplant. She's still doing amazing (praise God) and we've had zero issues.

Last weekend was the best weekend of our lives, by far. We finally met with the family that donated the heart to Holly. Read about it here if you'd like: http://ihatedialysis.com/forum/index.php?topic=34929.msg528125#msg528125

Merry Christmas to everyone....  :grouphug;
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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!
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