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Author Topic: hearing issue with kidney issue  (Read 6481 times)
mykey711
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mykey

« Reply #25 on: May 09, 2011, 06:52:33 PM »

Alport's Syndrome is hereditary nephritis and has hearing loss.
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I'm a 58 year old Family doctor with Alport's syndrome. I've been on PD for almost a year. I've been on transplant list since May 2010 at three centers, Michigan, Cleveland, and Indiana.  My brother has the same disease and is on his second transplant for about 12 years now.
HouseOfDialysis
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« Reply #26 on: May 15, 2011, 05:51:55 AM »

I'm living proof of that, yes. Confirmed biopsy of Alport Syndrome, and I can "hear" my ears going bad day by day. I treasure what I hear now and hope that I can stretch out the remaining usage for some time. I couldn't imagine not being able to hear my wife or my kid.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
WishIKnew
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Alports, dialysis '07-'12,cancer'11,transplant '12

« Reply #27 on: May 15, 2011, 06:53:02 AM »

Have any of you with hearing loss taken sign language classes?
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HouseOfDialysis
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« Reply #28 on: May 15, 2011, 07:04:22 AM »

I have picked up some from my kid. He's on the autism spectrum and he was taught some signs, so we could communicate when he was younger. But nothing fluent, by any means.The ENT doc said I might be a candidate for a cochlear implant down the line, but I'm not looking forward to having a machine drilled into my head.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
wj13us
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Paul's ride 2011

« Reply #29 on: May 17, 2011, 09:53:06 AM »

I've had kidney disease all my life as well as a gradual reduction in my hearing.  I've worn hearing aids for I'd guess about 20 years now.  All I can say is that the technology has grown leaps and bound when hearing aids have gone digital.  The pair I wear now are fully in the ear without background noise reduction.  Anyone who has worn hearing aids knows the biggest pain is the amplification of background noise.  Say an air conditioner in the background or at a place with loud music on while trying to carry on a conversation.  The aids I have now don't have/need that.  They are the most naturally sounding hearing aids I've had to date.  No one can see them unless looking directly into my ear cannal (not sure why anyone would want to do that anyway).  I never even know I'm wearing them (unless of course a battery goes dead).  So if you are reluctant to get them or had bad experiences in the past you should give them another go.

Another funny story about acupuncture and hearing loss.  I was volunteering at a local Donate Life booth and the booth next to us was a acupuncturist.  I asked about using acupuncture to cure hearing loss.  The acupuncturist was telling me about the connection between kidneys and hearing and something about places he places the needles to improve the energy or something or another between the two.  Then I explained "well my original kidneys were removed and a replacement put in but not in the same location."  He also said that they place the needles in the ears.  I told him that I've had skin cancer on my right ears and the skin was removes and replaces with skin that was taken from behind my ear.  I then asked again if acupuncture will help my hearing loss.  He said "no" and walked away.

Bill
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bette1
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« Reply #30 on: May 19, 2011, 09:33:16 PM »

I'm starting to have some hearing loss.  I went to the ENT doc when my daughter was getting treated because I though I just had wax.  It happened all of a sudden, and no one could tell me the cause.  It least I know the reason.
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Diagnosed with FSGS April of 1987
First Dialysis 11/87 - CAPD
Transplant #1 10/13/94
Second round of Dialysis stated 9/06 - In Center Hemo
Transplant  #2 5/24/10
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