I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
March 28, 2024, 02:29:03 AM

Login with username, password and session length
Search:     Advanced search
532606 Posts in 33561 Topics by 12678 Members
Latest Member: astrobridge
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Transplant Discussion
| | |-+  Creeping creatinine
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: Creeping creatinine  (Read 4796 times)
lainiepop
Sr. Member
****
Offline Offline

Gender: Female
Posts: 876


« on: November 23, 2015, 03:22:15 AM »

Hi everyone hope u r well. I'm a bit worried right now, I've had my tx from my dad 3 years and 5 months. With a few exceptions creatinine has always been stable between 70 and 80 with some times in the 60s. Last month I went for clinic and it was 83, usually it's been around 73. They said it was fine but I panicked a bit as we are going to America with the kids at Christmas and my parents too. I asked for another test in 4 weeks time. Just called tx nurse who said it's fine within range at 90! So it's gone up again. It is not fine for me it seems it is just getting higher. All my other blood work is within normal range , my bp is normal as i had a monitor a couple months ago, so they are not worried, said at this stage they wouldn't want to do anything like change tablets they would wait and see and not to worry have a nice holiday! But I can't do that now. I feel like just as I've started working at the kid's school, planning holidays, becoming relaxed and enjoying life it is all gonna go wrong. I'm seriously worried will lose the kidney after it being a fantastic match and working so well. Feeling really down right now. She said she would speak to consultant s and call me later but doesn't think they'll want to do anything
Logged

1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Michael Murphy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2109


« Reply #1 on: November 23, 2015, 05:23:39 AM »

I would tell your concerns to the doctor, but in all testing there is a margin of error, many elements can effect a test,  you pay your doctor to worry about the results.  If the doctors feel the results need to be watched they should let you know.  I wouldn't let a possible lab mistake or procedure change upset my trip.  This comes under my life plan to ignore what I can't change.  When it's time to worry I am sure your doctor will tell you, if there was something you could do to help this I am sure again your doctor will tell you. Instead of worrying concentrate on making memories on your vacation with your family. 
Logged
Deanne
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1841


« Reply #2 on: November 23, 2015, 09:43:31 AM »

Are you drinking less than you were? Have you been exercising more?

I can understand your worry, but try not to! The differences aren't really very extreme. Watch the trend over the next couple of months and try to drink more. The fact that they don't want to make any changes right now tells me your medical team is confident everything is fine.
Logged

Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
lainiepop
Sr. Member
****
Offline Offline

Gender: Female
Posts: 876


« Reply #3 on: November 23, 2015, 11:44:27 AM »

No haven't been drinking less or exercising. I tried to drink lots before my last bloods and am still seeing lots too. The only think different in the last 2 blood draws has been that I've started working as lunchtime supervisor out in the playground at my kid's school from 11.30 to 1 each day and I take a little bottle of water with me. I am doing more during the day and taking kids to clubs after school but I don't see this should affect anything. Since starting work I think I have drunk less, but tbh I think I drank too much before, so probably getting the right amount now. Tx nurse called back said consultants have gone back over my results and think is worth reducing tac from 5mg to 4.5. So taking 2mg at bedtime instead of 2.5 and go for repeat blood in two weeks. My level is within range but on the higher side for me especially the one before this most recent one. But I get the feeling they don't know what to do and this is clutching at straws. I just can't believe had nothing like this in the last 3 years and right before a big holiday it happens. Not gonna lie am terrified. Xx
Logged

1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Michael Murphy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2109


« Reply #4 on: November 23, 2015, 12:00:27 PM »

I understand the fear, but you are doing every thing the experts are telling you to do.  But you have made some changes in your life, water intake, activity that can effect your tests.  It's good to watch your results but in your case you probably have nothing to worry about. You are going on holiday put these worries on hold and have a good time. The stress you are having is a reason to feel the results are skewed.
Logged
Deanne
Elite Member
*****
Offline Offline

Gender: Female
Posts: 1841


« Reply #5 on: November 23, 2015, 12:51:19 PM »

The higher tac level could explain it. Whenever my tac level has come back higher than usual, my creatinine was also higher than usual.
Logged

Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
PrimeTimer
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2401


« Reply #6 on: November 23, 2015, 01:05:45 PM »

I am wondering if the children's playground is made from concrete pavement and if perhaps any running/jumping around after the kids on the pavement would cause slight inflammation within muscles thus, an elevated creatinine or CPK level. Years back I had Polymyositis and my CPK level was high. One of the questions I was asked is if I jogged, walked or jumped a lot on pavement.     
Logged

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.
lainiepop
Sr. Member
****
Offline Offline

Gender: Female
Posts: 876


« Reply #7 on: December 08, 2015, 12:10:12 PM »

Hi everyone thanks for all your messages. Had my blood test yesterday and tx nurse called me earlier to let me know creatinine's gone down from 90 to 80 so was a tac issue. Don't know tac level yet but assume OK. Am so relieved I was convinced it would be up further!
Logged

1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Michael Murphy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2109


« Reply #8 on: December 08, 2015, 04:09:06 PM »

It's nice to hear good things about good people. Enjoy the good news I am glad your numbers went down.
Logged
SooMK
Sr. Member
****
Offline Offline

Gender: Female
Posts: 610


« Reply #9 on: December 09, 2015, 05:37:46 AM »

Such good news! We live with that fear always in the back of our minds.
Logged

SooMK
Diagnosed with Uromodulin Kidney Disease (ADTKD/UMOD) 2009
Transplant from my wonderful friend, April 2014
Volunteering with Rare Kidney Disease Foundation 2022. rarekidney.org
Focused on treatment and cure for ADTKD/UMOD and MUC1 mutations.
PrimeTimer
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2401


« Reply #10 on: December 09, 2015, 07:45:49 PM »

Glad you got better lab results this time. Hope you can relax now and will enjoy your Christmas in the States! Have a very Merry Christmas!  :christmastree;
Logged

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.
lainiepop
Sr. Member
****
Offline Offline

Gender: Female
Posts: 876


« Reply #11 on: December 10, 2015, 01:58:49 AM »

Thank you!! Just looking at weather in Florida looks a bit hit hoping it cools down a bit!!
Logged

1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11325


« Reply #12 on: December 10, 2015, 10:05:48 AM »

Hi everyone thanks for all your messages. Had my blood test yesterday and tx nurse called me earlier to let me know creatinine's gone down from 90 to 80 so was a tac issue. Don't know tac level yet but assume OK. Am so relieved I was convinced it would be up further!

This won't be the last time something like this happens to you!  I have been through EXACTLY THE SAME THING on a couple of occasions, and I felt panicky, too.  I've just decided that if all of my other numbers are good, then I'm not going to freak out.  Creatinine and tac levels can be so squirrely.  I'm so glad your numbers came back better!  I'm relieved that you're relieved!
Logged

"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."
lainiepop
Sr. Member
****
Offline Offline

Gender: Female
Posts: 876


« Reply #13 on: December 11, 2015, 06:06:44 AM »

Thank you all! Looking forward to Florida and Disney now!! Xx
Logged

1982 - born with one imperfect kidney and no bladder, parents told i would not survive
1984 - urostomy op
1990 - bladder built out of colon
2007 - birth of son, gfr fall from 3O to 26
July2011 - birth of prem daughter, gfr 17%
August2011 - gfr drop to 10%
29th May2012 - RECEIVED KIDNEY 4/6 match from my wonderful dad !
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!