lightNlife
New member
I wanted to call attention to something a lot of us know about Tobramycin, but hadn't given much thought to. I'd like to share my experience so that others can make an informed decision regarding their health care.
I've never doubted that my doctors, my parents and I have made the right decisions when it comes to my healthcare. I know how important it is to weight the risks against the benefits for all my medications.
I have received tobramycin both in nebulized form and intravenously for several years now. I'm allergic to many of the broad-spectrum antibiotics, so tobra is really one of the few options available to me. My doctors always told me that whenever I'm on tobra to be aware of any side effects such as ringing in the ears, dizziness or hearing loss. I usually noticed these symptoms toward the end of therapy, so at that point it was time to stop the medication anyway.
When I started attending the adult CF clinic, I was pleased to find out that they conduct audiology ever month for those who are on TOBI or tobra. The ringing in my ears had gotten noticeably worse when I was in college, particularly in my left ear. Since I wasn't in the habit of listening to my stereo at a loud level or going to lots of rock concerts, I was pretty certain that the hearing problems were related to my medication.
My left ear has lost 70% and my right ear has lost 50% My hearing loss has progressed to the point where I now need hearing aids in order to get the most out of life. My willingness to sacrifice my ears so that my lungs can be as healthy as possible has never been an issue. Whenever I'm prescribed tobra as an IV, I have to sign a waiver stating that I already have hearing loss and know the risk of taking more tobra.
If you are on tobra or TOBI and are even suspecting that you're losing some hearing, please ask your doctor to refer you to an audiologist for screening. If you're adamant about not giving up anything "extra" to CF, then you'll want to do what you can to preserve your hearing. It's a quality of life thing. Also, very few insurance plans cover hearing aids. The out of pocket expense is quite high, but it's a price I'm willing to pay.
I've never doubted that my doctors, my parents and I have made the right decisions when it comes to my healthcare. I know how important it is to weight the risks against the benefits for all my medications.
I have received tobramycin both in nebulized form and intravenously for several years now. I'm allergic to many of the broad-spectrum antibiotics, so tobra is really one of the few options available to me. My doctors always told me that whenever I'm on tobra to be aware of any side effects such as ringing in the ears, dizziness or hearing loss. I usually noticed these symptoms toward the end of therapy, so at that point it was time to stop the medication anyway.
When I started attending the adult CF clinic, I was pleased to find out that they conduct audiology ever month for those who are on TOBI or tobra. The ringing in my ears had gotten noticeably worse when I was in college, particularly in my left ear. Since I wasn't in the habit of listening to my stereo at a loud level or going to lots of rock concerts, I was pretty certain that the hearing problems were related to my medication.
My left ear has lost 70% and my right ear has lost 50% My hearing loss has progressed to the point where I now need hearing aids in order to get the most out of life. My willingness to sacrifice my ears so that my lungs can be as healthy as possible has never been an issue. Whenever I'm prescribed tobra as an IV, I have to sign a waiver stating that I already have hearing loss and know the risk of taking more tobra.
If you are on tobra or TOBI and are even suspecting that you're losing some hearing, please ask your doctor to refer you to an audiologist for screening. If you're adamant about not giving up anything "extra" to CF, then you'll want to do what you can to preserve your hearing. It's a quality of life thing. Also, very few insurance plans cover hearing aids. The out of pocket expense is quite high, but it's a price I'm willing to pay.