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Author Topic: Questioning the transplant....  (Read 11495 times)
okarol
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« Reply #25 on: January 23, 2007, 06:33:23 PM »
My husband and I wondered -- what if they can grow kidneys soon, should we wait?
What if Jenna has trouble from the surgery, an infection, or worse? What about the meds, the side effects, the cancer risk? It's pretty overwhelming. Jenna is so young, we just knew that dialysis for her was barely keeping her above water. More will be revealed as we watch how her transplant works out.
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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
Rerun
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« Reply #26 on: January 23, 2007, 06:51:44 PM »
Carol, dialysis was not only keeping Jenna "above water".....it was keeping her alive.  The "what if's" are just as great for dialysis.

What if her fistula breaks open during the night and she bleeds to death?
What if her blood pressure drops too low during dialysis and she goes into cardiac arrest?

What if she gets hit by a truck tomorrow?

I guess you never know.

I would rather have a transplant one day and die than be sentenced to dialysis for the rest of my life.
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livecam
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« Reply #27 on: January 23, 2007, 07:07:31 PM »
Rerun...it was November 8th of last year.
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angieskidney
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« Reply #28 on: January 23, 2007, 10:19:13 PM »
Quote from: Rerun on January 23, 2007, 06:51:44 PM
Carol, dialysis was not only keeping Jenna "above water".....it was keeping her alive.  The "what if's" are just as great for dialysis.

What if her fistula breaks open during the night and she bleeds to death?
What if her blood pressure drops too low during dialysis and she goes into cardiac arrest?

What if she gets hit by a truck tomorrow?

I guess you never know.

I would rather have a transplant one day and die than be sentenced to dialysis for the rest of my life.
I agree! And I hope that with how 2 members already got a transplant that more of us will this year!  :2thumbsup;

The medications are supposedly better now then years ago with my last one! Some places even go No Steriods!  :thumbup;
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diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
angela515
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« Reply #29 on: January 24, 2007, 11:33:16 AM »
Quote from: angieskidney on January 23, 2007, 10:19:13 PM

I agree! And I hope that with how 2 members already got a transplant that more of us will this year!  :2thumbsup;

The medications are supposedly better now then years ago with my last one! Some places even go No Steriods!  :thumbup;

No steroids here!!  :thumbup; I took Prednisone the first 2 days then none... woohoo.
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
Rerun
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« Reply #30 on: January 24, 2007, 11:43:23 AM »
Angela, how can they go steroid free?  How do they explain that to you?   :urcrazy;
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angela515
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« Reply #31 on: January 24, 2007, 11:50:07 AM »
Whatcha mean how can they go steroid free? They just do. LOL, uhm my surgeon told me before the surgery his plan was to use Prograf and Rapamune and Prednisone for the first couple days but then go steroid free. I was VERY happy with that since I was taking prednisone since age 12-18, then again after my first transplant until it failed and I started dialysis. So I hate the drug... and I am very glad to not be on it. The medicines i'm on work wonders, no need for prednisone.
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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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« Reply #32 on: January 24, 2007, 12:29:02 PM »
Same with Jenna's transplant - she had prednisone
in the hospital for 3 days - then no more - ever!
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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
BigSky
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« Reply #33 on: January 24, 2007, 07:41:02 PM »
Quote from: angela515 on January 24, 2007, 11:50:07 AM
Whatcha mean how can they go steroid free? They just do. LOL, uhm my surgeon told me before the surgery his plan was to use Prograf and Rapamune and Prednisone for the first couple days but then go steroid free. I was VERY happy with that since I was taking prednisone since age 12-18, then again after my first transplant until it failed and I started dialysis. So I hate the drug... and I am very glad to not be on it. The medicines i'm on work wonders, no need for prednisone.


What was your PRA percentage?

My understanding is that the steroid free protocol is for the most part for those with lower PRA percentages.
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angela515
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« Reply #34 on: January 24, 2007, 08:20:12 PM »
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Live Donor Transplant From My Mom 12/14/1999
Perfect Match (6 of 6) Cadaver Transplant On 1/14/2007
angieskidney
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« Reply #35 on: January 25, 2007, 04:30:06 AM »
Oooh I want to know more about this as well! Please more detail about how going Steriod Free is better or worse for certain people and why don't all hospitals go Steriod Free!  :2thumbsup;
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
coravh
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« Reply #36 on: January 25, 2007, 05:20:24 AM »
Quote from: Rerun on January 24, 2007, 11:43:23 AM
Angela, how can they go steroid free?  How do they explain that to you?   :urcrazy;



I had my transplant in October 2002. I had my work up in 2001 and at that point they discussed the steroid avoidance with me. I have no idea what my PRA was, I just know that I was on prednisone for about a week, and that was it. I have been steroid free ever since. I started on prograf and rapamune, but last January my creatinine shot up (it had been creeping up for a while) and we discovered that there was some minimal scarring from the prograf. I've now been on myfortic (similar to cellcept but fewer side effects) for almost a year and my Cr. has been perfectly stable and at the level it had been the first year after my transplant.

I just love the steroid avoidance.

I'm now getting listed for a pancreas too. At Fairview in Minneapolis they are now doing pancreas transplants without prednisone. I'm a sucker for surgical punishment! lol

Cora
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angieskidney
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« Reply #37 on: January 25, 2007, 10:44:51 AM »
Good luck! That is great news!  :thumbup;
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FREE Donor List for all Kidney Patients!

diagnosed ESRD 1982
PD 2/90 - 4/90, 5/02 - 6/05
Transplant 4/11/90
Hemo 7/05-present (Inclinic Fres. 2008k 3x/wk MWF)
paris
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« Reply #38 on: January 25, 2007, 12:04:07 PM »
The PRA is a factor in the steroid use. My transplant center has a 3 day protical for steroids, but I have been told that mine would be longer because of my PRA - I don't care, just give me a kidney. :thumbup;
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