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Terri
Member
Username: Terri

Post Number: 249
Registered: 09-2007
Posted on Friday, January 20, 2012 - 05:54 am:   Edit Post Delete Post Print Post

I had labs on the 17th; my Prograf is high and liver is loving it. All those numbers came back perfect. My creatinine is 1.58 which means my kidneys are NOT loving it. It was 1.2 in October. They lowered Prograf to 2mg and I will get labs again in a month.

Last time they did that, liver did not like it so I'm hoping that doesn't happen again. I was on Cyclosporine and kidneys didn't much care for that either.
Terri Lynne - 20 Year Liver Transplant Survivor
"Whatever doesn't kill me had better start running!"
NewMan
Member
Username: Reganreed

Post Number: 4
Registered: 01-2012
Posted on Friday, January 20, 2012 - 09:15 am:   Edit Post Delete Post Print Post

Wow, after 20 years you should be teaching the new transplant people a thing of two! I have had mine for 10 months and my creatinine had bounced all around. I was on dialysis for a week before my transplant and had to stay 10 days post transplant so they could watch my kidneys. They were originally talking about a double transplant, but decided against it. I am on 3mg of Prograf, 500mg cellcept and 5mg of prednisone.
Liver tx - 3/14/11
The Liver Institute - Methodist Dallas
BOBBY
Member
Username: Trackman

Post Number: 38
Registered: 06-2010
Posted on Friday, January 20, 2012 - 11:15 am:   Edit Post Delete Post Print Post

My Prograg level is between 6 and 8 and creatinine has been between 140 and 150 for most of the 18 months since transplant. I went to Kidney specialist who said not to worry because those numbers could be expected and not to worry as long as it remains stabil. Well the last 3 months it has been between 160 and 180 with a eGFR between 35 and 43. Doctor hasen't called but I'm beginning to worry.
on the list. Mar, 2010. Liver cancer
Phoenix Mayo Hospital
Liver Transplant July 26, 2010
Bob2006
Member
Username: Delgador

Post Number: 236
Registered: 06-2008
Posted on Sunday, January 22, 2012 - 12:45 pm:   Edit Post Delete Post Print Post

Have they told you to drink a lot of water? And are they checking your BUN as well?
Liver TX 7/31/2006 due to HCC
Dr. Jang Moon & Dr. Andreas Tzakis - UM/JMH
health journey
Member
Username: Health_journey

Post Number: 47
Registered: 04-2011
Posted on Sunday, January 22, 2012 - 01:01 pm:   Edit Post Delete Post Print Post

Terri.. congrats on 20 yrs post tx. I am 2 1/2 years and feeling good. It surprises me that you are still on 2 mg prograf after 20 yr. Is that the only anti rej drug you are on. From what I've read prograf is the most damaging to the kidneys. Has your doctor considered another drug.

I am on 2 mg prograf and also cell cept right now. My doctor plans to take down the prograf on my next visit. There are 0 .5 mg doses. He may take it down to 1mg AM and .05 PM every day. His goal is to get me off prograf completely and keep using cellcept. He has a patient who is off anti rej drugs completely and is doing well. I don't know how long that patient is post tx. I think most patients stay on some dose of the anti rejection drugs for life.

My tacrolimus/prograf is at 4.6 and my creatinine is .81. The prograf also keeps my sugar a bit high but that has been getting better since the prograf doses have been reduced. eGFR 76.

How often does everyone go for labs. I am still on every 3 wks. My doctor seems pretty careful about lowering doses and does them very gradually. He cut cellcept last year and my AST and ALT went up to the 400's so he put that dose back up and those readings went back to normal. Seems like every patient reacts differently.
Liver Transplant 10/25/2009
UMDNJ
Terri
Member
Username: Terri

Post Number: 251
Registered: 09-2007
Posted on Monday, January 23, 2012 - 09:40 pm:   Edit Post Delete Post Print Post

I was on Cyclosporine for 19 years, got switched to Prograf this past June because doc felt it would be better for me in the side effect department. He had me on 3mg but just lowered it to 2mg.

I normally get labs every three months but because of this am getting them again in a month.

I was drinking a lot of water before this but have been trying to drink more on top of that. My BUN was 34, I think she said. It was 20 something the previous visit.
Terri Lynne - 20 Year Liver Transplant Survivor
"Whatever doesn't kill me had better start running!"
papillonbleu
Forum Leader
Username: Papillonbleu

Post Number: 2140
Registered: 10-2007
Posted on Friday, January 27, 2012 - 08:51 am:   Edit Post Delete Post Print Post

I am amazed that you have had your liver for so long and congratulate you for it. I hope that your doctors can find the right balance so that both your liver and kidneys will function as they should. I will keep you in my thoughts and prayers. Many hugs.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital

Try Hard
Member
Username: Try_hard

Post Number: 24
Registered: 09-2008
Posted on Sunday, February 12, 2012 - 03:27 pm:   Edit Post Delete Post Print Post

Terri,
To hear you are 20 years out is very inspiring; I am 3 years post tx and had kidney damage complications from blood loss during surgery. I have been on 1.5 mg of Tacrolimus twice a day. My Creatine was between 1.3 and 1.6 for 2 years, then my kidney doctor said to stop drinking so much water (1 gallon a day as directed by other doctors) and take in more salt. This is the opposite that I had been told by other doctors. My creatine now is mostly at 1.2 with the occasional 1.3, so other options can produce good results.
Wishing you continued wonderful health,
Tim
Try Hard

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