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Author Topic: Little bit worried just over 4 yrs post tx  (Read 4235 times)
lainiepop
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« on: October 06, 2016, 12:41:53 PM »

Hi guys. Most of u know me and that my dad donated to me 4 yrs ago 9 mths after my daughter was born. I have had a few non kidney issues, notably a seizure 5 Mnths post tx and a serious bowel op 2 yrs post. Throughout all this kidney has been unaffected with creatinine stable in the 70s. Well just before we went to America last yr my creatine went from around 74 to 84. Doc wasn't concerned but I pushed for another blood test 2 weeks later and it had jumped again to 90. They decided to reduce my tacro by 0.5mg and a week later bloods showed creatinine had reduced to 80 again. It stayed around 80 and 81 til this July when it went to 84. Doc wasn't concerned told me all was well and sent me on my way. Well I had an iron infusion end of Aug and that eve and morning I was cold shaky with a temp over 38. Luckily it came down on it's own but I was tested and treated for uti which came back so treated again as soon as I came of antibiotics wee started smelling and has done ever since. I am due in clinic Tuesday so had bloods done a couple days ago and tx nurse told me to send off another wee sample. Apart from the smell I have no symptoms and feel well. I am prone to UTIs as i have a mitrifanoff bladder and catheterise through stoma but have been uti free for 2 yrs. Anyway tx nurse called earlier saying there are still bugs in the urine she is waiting on docs to see what they want to do but creatinin creeped to 87. Now I know this isn't massively high but the trend concerns me and I am worried about rejection just when I'm feeling great. Had a cervical cancer scare a few Mnths ago. Fortunately didnt need treatment but I guess I just wanted to talk to people who understand how it feels to constantly have issues and worries. Plus our niece has had leukaemia since she was 1 and a bone marrow tx she is now 3 and just been told it has come back so she is starting treatment all over again. Marie xx






sp mod Cas
« Last Edit: October 06, 2016, 01:49:11 PM by cassandra » 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 !
cassandra
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When all else fails run in circles, shout loudly

« Reply #1 on: October 06, 2016, 01:39:23 PM »

O Marie I'm sorry to hear that, and understand you. Eventhough it's a long time ago I had a TX I would think that it might still be the tacro or are you drinking less? The situation with your niece of course adds to the stress.

Lots of love and strength, Cas


    :cuddle;
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
DialysisGoneFOREVER
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« Reply #2 on: October 06, 2016, 09:17:36 PM »

I don't understand that range.

In America normal serum creatinine is about .7 to 1.3. How does yours translate?
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lainiepop
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« Reply #3 on: October 07, 2016, 09:21:14 AM »

Thanks Cas. They want me to take a course of cefalexin for 2 weeks to try clear up the persitstant uti. Will see where it goes on clinic on Tues.

Uk uses a diff version a rought guide is around 60 to 120 for normal range. I believe Europe and Australia use same version of creatinine as uk.






sp mod Cas
« Last Edit: October 07, 2016, 04:46:00 PM by cassandra » 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 !
Rerun
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Going through life tied to a chair!

« Reply #4 on: October 07, 2016, 06:59:33 PM »

With antibiotics you need to drink lots of good clean water.  Maybe throw in some cranberry juice in you for the UTI.  Some say it works some say it won't.  I think it works.
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lainiepop
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« Reply #5 on: October 08, 2016, 02:40:47 AM »

Thanks rerun. I am on the cranberry too  :2thumbsup;
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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 !
coravh
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« Reply #6 on: October 08, 2016, 12:32:53 PM »

I don't understand that range.

In America normal serum creatinine is about .7 to 1.3. How does yours translate?

Multiply by 88. So her numbers of 80 to 90 translate as 0.91 to 1.02. Basically very minor fluctuations. My baseline is between 160 and 180 and has been for about 14 years (1.82 - 2.05)
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DialysisGoneFOREVER
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« Reply #7 on: October 08, 2016, 09:49:17 PM »

I don't understand that range.

In America normal serum creatinine is about .7 to 1.3. How does yours translate?

Multiply by 88. So her numbers of 80 to 90 translate as 0.91 to 1.02. Basically very minor fluctuations. My baseline is between 160 and 180 and has been for about 14 years (1.82 - 2.05)

You mean divide by 88. So a creatinine in the .9 to 1 range is EXCELLENT! Unless you see it continue to rise there is no cause for concern.
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