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Bree
Member
Username: Bree
Post Number: 39
Registered: 08-2007
| | Posted on Sunday, April 04, 2010 - 10:08 pm: | 
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Just wondering if anyone -particulary those former lung diseasers - has experienced any hearing loss due to meds?
Not sure if meds pre-tx affect any other of you organ tx's. I had bronchiectasis and asthma and now have severe sensoneurial hearing loss and wear hearing aids.
Looking for others! Seems like you people are out there but no one talks about it...
Bree 24, Ontario
Dx: Bronchiectasis as of Feb. 2003
Double Lung Transplant 7/8/9
Toronto General Hospital
Live Loud, Laugh Hard, Love Much |
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BreathinSteven
Forum Leader
Username: Breathinsteven
Post Number: 2011
Registered: 11-2004
| | Posted on Sunday, April 04, 2010 - 10:38 pm: |
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Hey Bree!
I've been pretty lucky -- I think I have a little tinnitus / ear ringing -- but not much in the way of hearing loss... My princess will certainly tell you that I often suffer from selective hearing -- but whatever...
I know that tobramycin has a reputation for causing hearing loss, among other things -- I do recall having a bout with I.V. tobramycin when my trough levels went a little high and I experienced some impact on my hearing -- but I believe that had recovered completely... I don't ever recall hearing that was an issue, or potential issue with the inhaled Tobi -- but I'd never actually dealt with that...
Hope you find others with the issue who you can compare stories with... Hope you're doing well...
Love, Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com
http://www.youtube.com/SteveFerkau
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Michelle
Member
Username: Mponto
Post Number: 32
Registered: 02-2009
| | Posted on Monday, April 05, 2010 - 12:45 pm: |
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Although this is not a transplant medication, I developed hearing loss when I was put on a medication called "Exjade" for iron overload. I had constant ringing in my ears and found it very hard to hear people where they would have to talk really loud to me. It was almost as if my ears were constantly plugged like I was wearing earplugs. Once I stopped the Exjade my hearing got considerably better but I now constantly suffer from tinnitus.
I hope you can find others who can relate more to what you are going through.
Michelle Ponto
Liver, Stomach, Pancreas, Small Bowel, Duodenum Tx - Dec 17, 2007
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Gary
Member
Username: Grser
Post Number: 40
Registered: 01-2010
| | Posted on Tuesday, June 08, 2010 - 01:15 am: |
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There is an organization called Self Help for the Hard of Hearing that may be able to help. Another organization is the Assocation of Late Deafened Adults. You can Google them. If your hearing loss is mild and you can still hear, I would check out Self Helf for the Hard of Hearing. Being hard of hearing puts you in a strange place where you are not Deaf and do not feel the need to sign. But you know you are missing things. They can also help you with locating technology that meetss your needs (phones with captions, increased volumes, compatabilty with hearing aids etc). There are also two major businesess that sell this type of equipment and a lot more - Weichtbrecht Communications and Harris Communications. Plus TV programs are closed captioned, you can pull up the captions on the TV (not the satelitte or DVR etc).
Hope this helps on the technical end of things.
Gary
Gary
Pre Liver Transplant |
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Jack
Member
Username: Johnhollenbach56
Post Number: 69
Registered: 12-2009
| | Posted on Tuesday, June 08, 2010 - 08:36 am: |
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Morning Bree,
I too share Steve's experience, though my tinnitus/ear ringing can actually keep me up at night. And I've also been accused of having selective hearing (perhaps it's a guy thing).
Have you spoken with your transplant team and doctors about it? What is their take on the situation? I'd be interested in learning if in fact the haring loss is due to one of the drugs.
Stay well,
Jack
Jack Hollenbach
Received double lung transplant August 2, 2007 for COPD at UCSD Thornton Hospital, San Diego, CA
Live each day to your fullest, for it is a gift to be treasured |
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CiscoKidney07
Forum Leader
Username: Gregg
Post Number: 3613
Registered: 03-2008
| | Posted on Tuesday, June 08, 2010 - 08:39 am: |
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My wife thinks I have a problem hearing. Shh! Don't tell her!! LOL!! Actually, I have no problems with hearing. Bree, I wish you all the luck in getting the problem resolved.
| There are not too many things in life worth working my butt off for, but my health is one of them |
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lovingmyself
Member
Username: Bree66
Post Number: 4
Registered: 10-2010
| | Posted on Monday, October 11, 2010 - 08:49 pm: |
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I lost my hearing after the first five months of doing peritoneal dialysis, remind you my mom did the same type of dialysis three years before she passed away of kidney failure 14 years ago. Her and I were given the medication Gyntemiacin for an infection while doing peritoneal dialysis. Mom went completely deaf over a yeah and a half period and me I have been about 70 percent deaf for 4 years now I wear two hearing aids now. I was told that my hearing would go completely but I think what saved me is when I got a kidney I was put on steroids which slowed down the process of me going all the way deaf. My doctor did not warn me about this medication before taking it and I did not figure out why my mom went deaf until her passing and I 9 years later became deaf and my eye doctor asked if I was giving the medication Gyntemiacin I said yes and remembered that my mom had the same medication. The statistics then were 1 in a millions will have hearing lost.
| Knowledge is power and understanding is even better, what a perfect pair. Live to learn and learn to live everyday like it's your last day! |
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cruizin
Member
Username: Cruizin
Post Number: 17
Registered: 09-2010
| | Posted on Tuesday, October 12, 2010 - 08:26 am: |
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Hi lovingmyself,
I have a similar story! ... was given gentamicin to clear a stubborn peritoneal infection. Was not given given informed consent, and given far to high a dose. Did not have hearing loss thankfully, but instead have permanently lost my balance! I can barely walk a straight line and have oscillopsia (bouncy vision) because my ears no longer update my eyes to stabilize gaze.
It's a very dangerous antibiotic, there are newer antibiotics that should be used instead, and doctors are woefully imcompetent in its proper application, particularly in ESRD patients.
What also may have helped you out is that since gentamicin is excreted solely by the kidney, that your new kidney was able to clear the drug faster than your old kidney. Patients in renal failure clear the drug far slower than normal. Even after the drug is cleared from the blood, it remains bound to the endolymph of the ear, continuing to damage the sensory hair cells long after the last dose was administered.
I had to find out what was causing my loss of balance through google searches. When I found out, thankfully I was very close to end of my gent treatment, I immediately started taking 1200 mg of N-acetyl-cysteine, which is shown in a study to stop the damage by "mopping up" the free radicals that are implicated in cell death. My doctor refuses to believe that the gentamicin has anything to do with my loss of balance! She even insisted that gentamicin doesn't cross the peritoneal membrane! With 10 minutes of googling I confirmed that it reaches equilibrium across the peritoneal membrane very quickly.
I am surprised you have hearing loss but (am assuming) no balance loss. I was under the impression balance loss strikes first.
If I were you, I would consider get some N-A-C from the drugstore. It is OTC; obviously check with your physician first, but it should be generally safe (has even been studied to see if it is of benefit in renal protection).
It make sense that both you and your mom had gent ototoxicity; only those with a (normally harmless) gene mutation are effected. I feel very lucky actually; many subjects of gent ototoxity have to walk with a cane, or are even resigned to a wheelchair. I think I caught it just in time and I believe the N-A-C helps.
I'm very curious about you:
- how long were you on gentamicin?
- what dose, and how often?
- were your blood levels of gentamicin monitored?
- which hospital was this?
Awaiting KTX
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
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cruizin
Member
Username: Cruizin
Post Number: 18
Registered: 09-2010
| | Posted on Tuesday, October 12, 2010 - 08:31 am: |
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Hi BreathinSteven,
Most -mycin drugs unfortunately affect the ears.
Your lucky your trough levels were at least measured. Mine were never measured and could have been sky-high. I'm lucky to have gotten away with just the side effect that I have.
Awaiting KTX
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
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lovingmyself
Member
Username: Bree66
Post Number: 7
Registered: 10-2010
| | Posted on Tuesday, October 12, 2010 - 06:41 pm: |
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Cruizin, When I took gentamicin that was in 05 way before I even considered having a transplant. My mom ended up in a wheel chair not being able to walk for years before she died. never thought to think that the gentamiacin may have had something to do with this. She did lose her balance a lot until slowly she couldn't stand and walk anymore. I was thinking that phosphorus problem may have done this. me I didn't lose my balance a lot I did have a little though.
I was taking gentamicin for about 3 weeks then rapidly I started losing hearing but I didn't notice my kids did and others around me. I remember my best friend telling she taking me to the doctor because she was tired of repeating herself and I went to please her and prove her wrong that nothing was wrong with me then the doctor tells me I may go death by the end of that y ear unless I took steroids, but me growing up believing in God I told him I don't want steroids they make you gain weight something I didn't need. So I never took the steroids until I got the transplant 3 years later.The doctor says that me being on steroids now is what's keeping my hearing from going away completely.
I don't remember the dosage any more and I don't remember how often and I will admit I was very naive about knowing I should keep up with everything the doctors told me and the medications they gave me. I learned very quick after learning that doctors know this medication causes hearing lost and they never told me so now I write everything down and I look up everything no matter what a doctor tells me I research it to no ends to get all the information so I can make better decisions on my own health.
My eyesight has become pretty bad since the transplant. I do not think my blood levels were monitored at all. My care for this was done by Oakwood hospital doctors which came to my dialysis center(Davita) in Allenpark,Mich. Oakwood is located in Dearborn, Michigan. My transplant was done by Henry Ford Hospital in Detroit, Mich. I'm probably the only person that had to have a transplant and find out five days later when it still doesn't work that the transplant was never hooked up right and I was hemorrhaging in the inside while they pumped dialysis in me for those five days trying kick start a kidney that wasn't hooked up right I died and they had to bring me back.
| Knowledge is power and understanding is even better, what a perfect pair. Live to learn and learn to live everyday like it's your last day! |
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cruizin
Member
Username: Cruizin
Post Number: 20
Registered: 09-2010
| | Posted on Tuesday, October 12, 2010 - 09:12 pm: |
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Wow lovingmyself your life has had a lot of ups and downs!
It's unfortunate that we have to double-check everything the doc says. I normally read up on my meds pretty closely but I missed the otoxicity that gentamicin can cause and now I'm paying for it  I played basketball today so things are not really bad but in the dark walking straight is almost impossible. My brain has compensated a fair bit by relying more on my vision to stay upright.
Awaiting KTX
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
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sslgot5
Member
Username: Sslgot5
Post Number: 16
Registered: 10-2010
| | Posted on Wednesday, October 13, 2010 - 08:55 am: |
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wow this is awful, can anyone tell me if that medication Gyntemiacin is given to kidney transplant patients to treat infections such as UTI's? Please let me know so I can stay away. Bad enough I'm losing my hair because of prograf, don't want to lose my hearing as well |
smithvan1981
Member
Username: Smithvan1981
Post Number: 1
Registered: 03-2012
| | Posted on Tuesday, March 27, 2012 - 02:19 am: |
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I read couple of article about hearing aid medics and they are good like yours. Actually my grandfather’s hearing power is diminishing and I wanted to know about these hearing aid before bought them for my parents..
http://www.atlantahearingaidcenter.com/ |
