Got the call and Jaclyn gets a kidney!

[willowtreewren]

Oh, Susan,
You must be on cloud nine. Wonderful, wonderful, wonderful. 

Keep sending good news.

Aleta

[rose1999]

Lovely to share your good news 

[RichardMEL]

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!! 

[rookiegirl]

WONDERFUL NEWS!!!

[cookie2008]

 

[Sluff]

Outstanding news. Congratulations to both of you!   

[donnia]

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

Oh yea, so thankful she isn't on steriods!

[monrein]

Fantastic update.  Thanks, it is so great to read good news.   

[Jess21]

  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! 

[Chris]

French Onion does sound good right now.

[TeenHatesDialysis]

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"

Life is good. We are forever grateful.

[Jess21]

 
yea...those sum it up!

[okarol]

  great numbers!

[RichardMEL]

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*

[Romona]

  Awesome!

[Chris]

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.

[RichardMEL]

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 (

[Romona]

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.

[TeenHatesDialysis]

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.

 

[Chris]

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?

[pelagia]

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! 

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.

[TeenHatesDialysis]

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.

[okarol]

  Whew! I am happy the kidney is okay - hopefully her levels will stabilize soon and you all can relax a bit! 

[Bajanne]

Caring thoughts and prayers with you all the way.

[Jess21]

10.5mg a dose??  wow...