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Author Topic: They won't list me yet...infections...  (Read 2006 times)
MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« on: April 10, 2012, 10:42:57 AM »

I'm pre-k and had my transplant evaluation in March 20th.  Talked to a nurse or transplant coordinator (now I'm not sure who I talked to) and she said that I have to be evaluated by infectious disease (which I had already requested anyway) a d also the team wants my urologist to figure out if reflux is causing these monthly kidney or uti  infections, or if it's my bladder.  If it's reflux, then they'd like to do a nephrectomy.

I can't see the urologist until June, that's his earliest appointment.  I am bummed out cause i've been asking about the infections and what can we do about them for a while.  They obviously don't want to dump  kidney in me just to attack it with infections and kill it like this one.  I'm starting to feel like every time they do something, they mess me up more
 :(

Anyway, they will not put me on the transplant  list until the infections are cleared up. 

Why didn't they try to clear this up before and save me some renal function??  It's like they didn't care until my gfr got down to 17.  Actually, not til I called and said I was making less pee sometimes.. (that might just have been me freaking out....)

Does anyone else have this issue? What caused your infections, and what did they do about it?

I am going to the University of Michigan Hospital, pretty well-reputed.  Anybody else?

I think I have an infection brewing now, went to the doc yesterday, waiting on the culture.  Having stomach trouble and sore throat, too.  Oh, and my A/V fistula surgery is Friday.  Hopefully it doesn't get canceled, but also hopefully I don't need dialysis soon, anyway
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
malaka
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« Reply #1 on: April 10, 2012, 10:57:22 AM »

MoMo--read my recent post.  Same institutilon.  D. Stone, by any chance?  She's the one who gave me my bad news.  At least they haven't suggested surgical removal of my kidneys since I'm not a good surgical candidate.

Wonder if Ann Arbor is setting a higher standard or culling their wait list by finding reasons to remove people from it? 

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MomoMcSleepy
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My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #2 on: April 12, 2012, 10:29:01 AM »

O e reason I mentioned that I go to U of M is that I have noticed a sort of scatter-brained-ness over there.  I have go e there for years, but the last few I have had a lot of trouble communicating with clinics.  Like today, I called the Neph clinic as I stricter on my pre-op instructions to do of I have infection symptoms, since I was supposed to have my A/V fistula done tomorrow.  It took hours to get through to the right person, and I'm at work!   (My boss was bothering me about it, wanted to know if I was in or out, cause another person asked for vacation day).

No one knew who was responsible for taking the call.  I know I'm not the only A/V fistula they've ever done.

anyway, eventually I always th. Into a really competent person. Who straighteners things out,but there seem to be fewer and fewer.  Also, I went to my PCP's clinic on Monday with my symptoms, and a resident saw me.  She did not want to give antibiotics without a culture (fine with me) BUT Wednesday when I checked on it, they had never sent the culture.  I just gave another urine plus more blood (for a differential?) but SERIOUSLY.  Seriously.  ::sigh:: 

I'll check out your posts.
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35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
MomoMcSleepy
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Gender: Female
Posts: 283


My son Roddy McSleepy at 6 months! sry pic sidewz

« Reply #3 on: April 12, 2012, 10:31:49 AM »

and no, P Rao.
Logged

35 years old, first dx w/  chronic renal insufficiency at  28, pre-dialysis

born with persistent cloaca--have you heard of it?  Probably not, that's ok.

lots of surgeries, solitary left kidney (congenital)

chronic uti's/pyelonephritis

AV fistula May 2012
Kidney Transplant from my husband Jan. 16, 2013
Howard the Duck
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