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Author Topic: Got the call and Jaclyn gets a kidney!  (Read 17875 times)
willowtreewren
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My two beautifull granddaughters

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« Reply #50 on: July 11, 2009, 07:37:38 PM »

Oh, Susan,
You must be on cloud nine. Wonderful, wonderful, wonderful.  :bandance; :cheer: :bandance; :cheer:

Keep sending good news.

Aleta
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Wife to Carl, who has PKD.
Mother to Meagan, who has PKD.
Partner for NxStage HD August 2008 - February 2011.
Carl transplanted with cadaveric kidney, February 3, 2011. :)
rose1999
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« Reply #51 on: July 11, 2009, 11:17:25 PM »

Lovely to share your good news  :yahoo;
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RichardMEL
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« Reply #52 on: July 12, 2009, 05:17:47 AM »

I have tears of happiness reading these updates. Jaclyn and Jess (the two J's!!) both getting kidneys within days of eachother and both doing so well.. two beautiful young ladies getting another look at a more normal life. It so gives me hope for everyone and helps me be more positive about my own life and waiting for that call!!!

pizza! dr pepper!! WOOHOOO!!  :clap; :clap; :clap; :yahoo; :yahoo; :yahoo; :rofl;
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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!
rookiegirl
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« Reply #53 on: July 12, 2009, 05:21:19 AM »

WONDERFUL NEWS!!!
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2000-Diagnosed IGA Nephropathy
2002-1st biopsy (complications)
2004-2nd biopsy
10/03/07-Tenckhoff Catheter Placement
10/22/07-Started Peritoneal Dialysis
03/2008-Transplant team meeting
04/2008-Transplant workup
05/2008-Active Transplant list
3/20/09-Cadaver Kidney Transplant
4/07/09-Tenckhoff Catheter removed
4/20/09-New kidney biopsy
cookie2008
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« Reply #54 on: July 12, 2009, 09:17:59 AM »

 :clap; :clap; :yahoo; :yahoo;
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Started PD in 11/07
Started Hemo in 7/08
Started NxStage 5/09
Sluff
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« Reply #55 on: July 12, 2009, 02:42:17 PM »

Outstanding news. Congratulations to both of you!   :bandance;
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donnia
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me and my donor Joyce

« Reply #56 on: July 12, 2009, 06:30:18 PM »

 :flower;  Super Fantastic!!!  What an inspiration she is!  Give her a big hug for us!!!   :flower;

Oh yea, so thankful she isn't on steriods!
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Born with one kidney 1972
Ureter re-constructured 1975 (reflux had already damaged the kidney)
Diagnosed and treated for high blood pressure 2000
Diagnosed ESRF October 2006
Started dialysis September 2007
Last dialysis June 4, 2008
Transplant from my hero, Joyce, June 5, 2008
monrein
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Might as well smile

« Reply #57 on: July 12, 2009, 07:14:46 PM »

Fantastic update.  Thanks, it is so great to read good news.   :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
Jess21
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« Reply #58 on: July 12, 2009, 09:48:50 PM »

 :2thumbsup; :yahoo; :bandance; Yay, I'm glad she's doing so well!  I got out the same day as her, but I am on more meds..I have steroids.  And pizza, well pizza I haven't had yet but I did get a baked potato the day after I got out. OMG. I just can't wait til French onion soup.  but I did have a dr. pepper tonite like her!  :beer1;
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
Chris
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« Reply #59 on: July 13, 2009, 01:04:55 AM »

French Onion does sound good right now.
« Last Edit: July 13, 2009, 01:06:43 AM by Chris » Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
TeenHatesDialysis
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« Reply #60 on: July 16, 2009, 05:22:54 PM »

Jaclyn gets a Zenopax infusion tomorrow. She gets these infusions every other week instead of Prednisone steroids.

From Drugs.com:
Zenapax is a monoclonal antibody and immunosuppressive agent. It works by blocking the activation of the immune system, which decreases the risk of the body rejecting a transplanted organ.

Jaclyn's lab results today: Creatinine 1.0 and BUN 21.....Good Kidney! She is drinking 3.5 liters of fluids each day. Doctor says that "A juicy kidney is a happy kidney" :2thumbsup;

Life is good. We are forever grateful. :flower;

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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
Jess21
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« Reply #61 on: July 16, 2009, 05:36:38 PM »

 :bandance; :bandance; :yahoo; :yahoo; :beer1; :beer1; :clap; :clap;
yea...those sum it up!
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #62 on: July 16, 2009, 06:37:25 PM »

 :2thumbsup; :2thumbsup; :2thumbsup; great numbers!
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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
RichardMEL
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« Reply #63 on: July 16, 2009, 09:41:34 PM »

She's drinking 3.5L a day.. is that a doctors order, or just what she's doing? What if she wants to drink MORE?

I understand during longer term dialysis the bladder shrinks due to reduced fluid intake(if you're good :) ) and it's very hard for some people post transplant to actually drink lots because their bladder fills up very quickly - and it has to expand again over time to get used to all the extra fluid.

Hell I wouldn't mind if that was my biggest problem in life. Hand me another 1L bottle of chilled water please!!! *drool*
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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!
Romona
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« Reply #64 on: July 17, 2009, 03:51:51 AM »

 :bandance; Awesome!
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Chris
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« Reply #65 on: July 17, 2009, 08:37:31 AM »

RichadMel, 3.5 L is the new minimum standard my transplant center wants us to folow for fluid intake. When I had my tx, the standard at the time was just 2L which I still have trouble getting in, but even though I have the bladder problem, I have other problemsthat makes it hard to drink and eat.
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
RichardMEL
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« Reply #66 on: July 19, 2009, 06:38:29 AM »

wow.. I DREAM of drinking 3.5L a day! :) I hope I am able to whenever the time comes!!! My fridge is groaning to hold 2L bottles of cold water again :)(
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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!
Romona
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« Reply #67 on: July 19, 2009, 06:43:08 AM »

wow.. I DREAM of drinking 3.5L a day! :) I hope I am able to whenever the time comes!!! My fridge is groaning to hold 2L bottles of cold water again :)(

I hope your fridge gets that chance soon.
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TeenHatesDialysis
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« Reply #68 on: August 25, 2009, 12:40:01 AM »

I am hoping that this is just a bump in the road to a forever healthy kidney and happy kid.

Has anyone experienced issues with Prograf absorption. A week ago Jaclyns prograf intake  was 11 mg morning and night without anything to drink or eat an hour prior or after. Her prograf lab results were approx 8 after 12 hours. The docs wanted it to be in the 10-12 level range. So they added a new med. I don't have the bottle with me, but it was Fluconasol(???), an anti-fungal med, but in this case not used for fungi, it was prescribed to help the prograf absorption. After one dose, Jaclyn's prograf lab show a level of 16.7. The docs quickly eliminated that med. On the next blood test Jaclyn's creatinine had gone from 1.0 to 1.8 (ugh!). The first thought was that the increased prograf level constricted the kidney vessels causing the creatinine to spike. They got the prograf back to normal and creatinine decreased to 1.2 within 48 hours. However, it start creeping back up again, 1.3 then 1.4. Since it went the wrong direction, they decided to perform Jaclyn's 3 month biopsy at 7 weeks. Results will be available tomorrow.

Some of the kids at the Ronald McDonald House where we were staying prior to being re-admitted take their prograf and cellcept alone and take their other meds later. Some of the other parents say that takin g all of the meds together impacts the absorption of the prograf. The interesting thing is that all of these kids are monitored by the same team of doctors. Has anyone else on this board had issues with prograf absorption or does anyone know if it is better absorped taken alone. Jaclyn does take it on an empty stomach. I think if we can stabilize and absorp the prograf then the creatinine issue may resolve itself.

Any input is great appreciated. Sorry if this blog is confusing and dificult to read as I don't get much sleep when Jaclyn is in the hospital.

 :pray;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
Chris
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« Reply #69 on: August 25, 2009, 05:33:53 PM »

I never had that problem like that. Mine have all been due to the time the blood was taken and how much fluid I am not getting in.

Is she drinking caffinated products? I am told by my center that can have an efect along with raising bp due to constriction caffiene can cause. Other thing that comes to mind is what is she drinking and what is her other levels like such as Potassium and Phosphorus. After my transplant I was told I should drink Gatoraid to get fluids in, but later told I should not fue to lab results of raise Creat, Potassium, and Phosphorus.

Not sure how Prograf level is determine. I was told before, but have forgotten. Mine is kept at a 5 - 8 range, but my age, height, and weight is different also.

So maybe something is being overlooked that is not med related, but food related. Did they tell you not to drink prior to test? I also take all my meds at once except for meds specifically  saying so such as Actonel (30 min prior to other meds) that is how my center has had me take them since transplant in 2000. Maybe kids are different depending on age?
Logged

Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
pelagia
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« Reply #70 on: August 25, 2009, 06:26:15 PM »

Susan, From what I can gather by scanning the web, the Prograf dosing regimen for kids with renal transplants is not well developed. 

Hopefully they will continue to watch her trough levels closely until they get her numbers stabilized.

I hope that you can find time to get some sleep.  I know that's difficult for the caregiver!  :cuddle;

Here are a few of the things I found:

http://www.rxlist.com/prograf-drug.htm  (which is lifted from the manufacturer)

"Pediatric Patients

Pediatric liver transplantation patients without pre-existing renal or hepatic dysfunction have required and tolerated higher doses than adults to achieve similar blood concentrations. Therefore, it is recommended that therapy be initiated in pediatric patients at a starting IV dose of 0.03-0.05 mg/kg/day and a starting oral dose of 0.15-0.20 mg/kg/day. Dose adjustments may be required. Experience in pediatric kidney and heart transplantation patients is limited."

The manufacturer's site has a lot more info, but it seems to say basically the same thing.

Click http://www.astellas.us/docs/prograf.pdf to download the pdf with details.  The manufacturer doesn't have dosing recommendations for pediatric kidney transplant patients.  There was a study done is with pediatric liver transplant patients.

There's a long list of drugs that can increase tacrolimus levels in blood, including fluconazole.

This article may also be of interest as it highlights the issues concerning bioavailability (uptake into bloodstream from the stomach or intestines).

http://www.medicalnewstoday.com/articles/99273.php

Looks like there may be a newer, related drug on the market that will give prograf a little competition.
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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
TeenHatesDialysis
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« Reply #71 on: August 26, 2009, 01:37:04 AM »

Thanks for the input! The biopsy indicated perfectly healthy kidney. She is taking a high dose of prograf twice a day, 10.5 mg each dose. She was released tonight after a blood transfusion. Her hemoglobin and hemotocrit had been very low for several weeks and the iron was not helping. Hopefully, this blood boost will do the trick.

Although she was released she will be back to the hospital this week for another blood test, stint removal, clinic appointment and zenapax infusion, but it is good to be on the outside for a bit.

Thank you for your input. I learn something new each time I sign onto this board. Thank you for your support. :grouphug;
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Susan, mom of Jaclyn, Deziree and Valerie

www.cotaforjaclynp.com
Jaclyn and Deziree diagnosed CKD 2/07; NPHP (type 1) 9/07
Jaclyn started dialysis 1/2/08
Successful Transplant 7/4/2009 at Lucile Packard Childrens Hospital @ Stanford, Palo Alto, CA
Deziree in denial
Jaclyn listed 5/08
Deziree listed 1/09 ("Inactive")
Jaclyn Cadaver kidney transplant 7/4/09 (Independence from dialysis day!)
okarol
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« Reply #72 on: August 27, 2009, 09:55:58 AM »

 :) Whew! I am happy the kidney is okay - hopefully her levels will stabilize soon and you all can relax a bit!  :cuddle;
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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
Bajanne
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« Reply #73 on: August 27, 2009, 10:17:59 AM »

Caring thoughts and prayers with you all the way. :grouphug;
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"To be found in Him, not having a righteousness of my own ...but that which is based on faith"



I LOVE  my IHD family! :grouphug;
Jess21
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« Reply #74 on: August 27, 2009, 01:03:28 PM »

10.5mg a dose??  wow...
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Hospitalized w/ renal failure- Nov. 2007
Diagnosed w/ ESRD w/ unknown cause- Jan 2008
Lower arm AV Fistula created- March 2008
On IL transplant list- Oct. 8th, 2008
On WI transplant list- June 25th, 2009
Pediatric 2 kidney transplant- July 6th, 2009 (3/6 antigen match)
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