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Author Topic: This is crap - define Ok  (Read 2047 times)
brenda seal
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« on: May 08, 2012, 04:31:17 PM »

I am very scared and mad as hell . Laurie had surgery two weeks ago to repair a large hernia - "They " in their wisdom have decided to rest him off dialysis to enable the abdomen to heal ( he is on PD ) . When I voiced concerns because blood test pre surgery had his creatinine at 708 and GFR<7 and that was after 2 days off dialysis , the doctor told me he was not concerned about the figures as long as Laurie felt " OK " .
He had a blood test last Tuesday and the nurse said she would ring with the results . Guess what -  no phone call just paper work in the mail for another blood test and a sticky note to say they had arranged for someone to come and collect blood . He had that blood test yesterday morning . No phone call .
Laurie has got sicker each day , we are now at the point where he is not able to eat and is sleeping most of the time . He had a follow up appointment with the surgeon this morning which I had to cancel because he feels too ill to go . I told them he was too sick to keep the appointment - did they care - NO .
So what is the doctor's definition of OK ? Is he still breathing ? Is he still conscious ? What do I do now ? Laurie will not  let me ring the clinic - he said if it was bad enough they would ring . I think he is too ill to realize how ill he is !
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WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #1 on: May 08, 2012, 04:35:50 PM »

call them, they need to know what's going on.  if it really is "OK" at least you'll know.  Call them.  I would.  My best to you!
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big777bill
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« Reply #2 on: May 08, 2012, 05:11:52 PM »

 Take the bull by the horns and call them. If for nothing but your peace of mind, at least you'll know something afterwards.
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liver transplant 3/22/2005
CKD 2008
 
fistula 11/17/2011
 catheter 2/07/2012
 started  hemo-dialysis in center 2/07/2012
 fistula transposition 3/08/2012
 NxStage at home  3/29/2012
 Using fistula at home 6/25/2012
 Using new NxStage S High-Flow cycler 3/04/2014
MaryD
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« Reply #3 on: May 08, 2012, 05:40:24 PM »

Definitely call the clinic 
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brenda seal
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« Reply #4 on: May 08, 2012, 06:39:31 PM »

I have called the clinic - Oh the blood results are just coming across my desk as we speak ! Creatinine 690 Urea 42 everything else looks fine . Nurse is going to speak with doctor and call me back - re putting him on the machine tonight on reduced volume .then he will feel a whole lot better tomorrow - she said . Why do I not believe her ?
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smcd23
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The patient, the baby and the donor - October 2010

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« Reply #5 on: May 08, 2012, 08:15:43 PM »

I am glad you called the clinic. How many days post surgery is he? I would think they need to get him on some sort of dialysis, now. I am sure he doesn't want a cath, but perhaps they can do more exchanges at a smaller volume? Gotta do something to keep him from getting too ill.
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
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