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Author Topic: Do people stop posting after getting a transplant?  (Read 11740 times)
Xplantdad
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Health is not valued till sickness comes. T.Fuller
« Reply #25 on: September 14, 2017, 01:11:20 PM »
That's the way I took it as well...that the doc was well practiced :)
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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 #26 on: September 15, 2017, 12:23:08 PM »
It was good to talk to Robert via phone  :thumbup;

Keep in touch :)
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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!
robertscz
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« Reply #27 on: September 17, 2017, 09:36:30 AM »
was great talking to you also!   its nice to speak to the people with the experience that have been through what we are going through... even the surgeon said, i can fix you and tell you that you will be ok, but i have no idea what your experiening.   will def keep in touch Bruce, appreciate your help and motivation through this!!
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nursey66
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« Reply #28 on: September 17, 2017, 01:10:40 PM »
I still read this message board , my husband had his second kidney transplant 2 years ago on September 28 and doing very well . He never got involved with this site.  He was interested in stuff I told him l had read about others trials and experience and always listened to what l found. When he was on dialysis he said he didn't want to dwell on it and now he's just busy catching up with life, while he is feeling good . I must say I learned a lot from this forum, and it certainly helped me understand what he was going through . Thank you all so much !
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Tora66
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« Reply #29 on: September 18, 2017, 06:47:41 PM »
I love reading the posts here. I don't posts often, but I get lots of inspiration from all of you here. When I feel down about being on dialysis and on the list for four years, reading the post keeps me focused and reeled with hope. Thank you all.
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Hootie
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« Reply #30 on: October 24, 2017, 11:34:46 AM »
Robert,
I agree with what others who have transplanted have said. My wife and I participated in a paired donor exchange in December 2016 at Emory in Atlanta. An altruistic donor started the chain off and we had surgeries the same day. I have to say without a doubt it was a good decision. My wife is almost down to three post transplant meds. She is weaning off prograf now and will be off on November 10. She only takes belatcept, prednisone (5 mg) and cellcept immunosuppressant drugs. Yes, she takes insulin, BP meds and other meds. Yes, the process to get through all the testing is long and time consuming but compared to dialysis transplant is a much better outcome and lifestyle.

My wife has more energy, is able to enjoy life more, and get out and about more often. An Xplantdad says there are trips to see doctors and blood work often in the beginning but that tapers off after 6 months. My wife really is religious about taking her meds and eating right. Blood chemistry has been right on target most of the time. Like dialysis, transplant patients have to take care of themselves.

We did Home hemo with Davita for almost two years. We were fortunate to have two good nurses that were supported along with the NxStage team. We always took a positive attitude into the process but I have have to say it was hard. We did 375 treatments during that time with two fistulas and one catheter at the end. My advice is to take one day and one treatment at a time and just work through it with the eye on transplant when that time comes. The alternative of no dialysis nor transplant  is not that good.

Joe
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Caregiver for wife with ESRD and type Type 1 diabetes (almost 50 years).  HHD with NxStage machine January 2015.
Transplanted  December 7, 2016
Xplantdad
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Health is not valued till sickness comes. T.Fuller
« Reply #31 on: October 24, 2017, 12:02:10 PM »
Joe....good to hear that your wife is doing well! I am typing this from the emergency  room at Mayo. Holly has an elevated white blood cell count...and spasms that are happening off and on. They are going to do blood cultures and a CT scan to rule out any gall bladder issues. Transplant docs will be very aggressive when sickness happens...and we will always be vigilant when Holly's body is telling us something.   
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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 #32 on: October 24, 2017, 12:19:54 PM »
Also...you will learn when to question standard protocol at the emergency room/doctors as well. As an example, the nurse just came in and wanted to start an IV. We asked why...and He said that they needed to put it in so they could put contrast in...for the CT scan. As a heads up...contrast is NOT used on a kidney transplant...for a CT scan. That's why it is important to ask WHY everything is happening...and don't assume that the folks who are supposed to know everything...actually do :)














Sp mod Cas
« Last Edit: October 24, 2017, 12:27:53 PM by cassandra » 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
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« Reply #33 on: October 24, 2017, 12:23:04 PM »
Quote from: Xplantdad on October 24, 2017, 12:02:10 PM
I am typing this from the emergency  room at Mayo. Holly has an elevated white blood cell count...and spasms that are happening off and on. They are going to do blood cultures and a CT scan to rule out any gall bladder issues. Transplant docs will be very aggressive when sickness happens...and we will always be vigilant when Holly's body is telling us something.

Sorry to hear Holly is having troubles.  I hope they find a good solution for treatment.
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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.
kickingandscreaming
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« Reply #34 on: October 24, 2017, 12:24:23 PM »
Me too.  My best to 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
cassandra
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When all else fails run in circles, shout loudly
« Reply #35 on: October 24, 2017, 12:31:32 PM »
What a stress, all the best to you and Holly. It might just be dehydration.




    :grouphug;


Lots of love, luck, strength, Cas
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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
Xplantdad
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Health is not valued till sickness comes. T.Fuller
« Reply #36 on: October 24, 2017, 01:20:01 PM »
Thanks everyone...She was dehydrated last night when we were here in the emergency room. They did ultrasounds and blood tests then as well. It'll get figured out eventually.
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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 #37 on: October 24, 2017, 02:35:22 PM »
Our best wishes are going to Holly!  Please do keep us updated on her condition if possible.  :grouphug;
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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 #38 on: October 24, 2017, 02:52:36 PM »
I will, I promise. Waiting for the CT scan now
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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!
robertscz
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« Reply #39 on: October 24, 2017, 05:39:22 PM »
hoping everything is ok!!!   
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Xplantdad
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Health is not valued till sickness comes. T.Fuller
« Reply #40 on: October 25, 2017, 04:57:38 AM »
We are home from the emergency room.  CT scan showed no abnormalities. Blood cultures will take days to grow anything. They are adjusting her medication levels a bit.  Slightly elevated white cell count still, but no fever. She finally got a good night sleep last night, too! We appreciate everyone's concern.
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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 #41 on: October 25, 2017, 08:14:53 AM »
Thank you for the information; we appreciate it.  I hope Holly continues to improve.
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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 #42 on: October 26, 2017, 12:38:53 PM »
As an update...so far so good. Blood cultures show nothing (of course :) )

Glad we got this all out of the way before the 15 day long road trip to Chicago and back!
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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 #43 on: October 26, 2017, 01:21:20 PM »
That's great news!  So, do you have a gut feeling for what the problem was and what may have caused it?
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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 #44 on: October 26, 2017, 01:51:51 PM »
I can private message you in a bit regarding it :)
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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 #45 on: October 26, 2017, 01:55:52 PM »
Oh, please don't feel obligated!  Just because I asked doesn't mean you are required to answer!  I don't want to intrude!  In saying that, though, if you'd like to PM me, you are more than welcome to do so, of course.
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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 #46 on: October 26, 2017, 02:11:55 PM »
PM sent :)
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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!
cassandra
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When all else fails run in circles, shout loudly
« Reply #47 on: October 29, 2017, 10:34:14 AM »
Dear Xplantdad I'm happy to read the cultures show nothing, any more news?


Love, Cas



 
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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
Xplantdad
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Health is not valued till sickness comes. T.Fuller
« Reply #48 on: October 29, 2017, 10:56:48 AM »
Hi Cas

It ended up being a ovarian cyst that burst, causing a rise in her white blood count...then some other issues took place. She's been given a clean bill of health now :)

Thank you for asking!
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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!
PrimeTimer
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« Reply #49 on: October 29, 2017, 12:03:08 PM »
Glad Holly (and her new kidney) are alright. Hope you guys enjoy your trip to Chicago with no bumps in the road except from friends you meet.   :bump;
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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.
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