HUH?

That's what you'll hear me say a lot if you ever talk to me in person or on the phone. In response to Somer's comment on my last post, I thought I would tell you a little about my hearing loss.

Prior to my lung transplant, I was diagnosed with a very virulent infection called Mycobacterium Abscessus. In order to treat this, they had to put me on long-term IV antibiotics. The type of antibiotic I was treated with was called an aminoglycoside. I was on Tobramycin for one year, and Amikacin for about 18 months... a total of 2 1/2 years on IV antibiotics. This wouldn't have been so bad, had they not been damaging to my ears (ototoxic).

Because of this long-term treatment (that mainly kept my fevers at bay, but did not stop the mycobacterium from ruining my old lungs), I am now mostly deaf. I am functionally deaf in my left ear and have very little hearing in my right. I can use the phone with my right ear, but the other party has to speak very clearly in order for me to understand them. I find that speaking with other CFers is very difficult, because we all have that raspy "CF voice". Because I have mostly high frequency hearing loss, I can hear men a lot better than women.

Living with someone who has hearing loss can be very frustrating. I am so thankful that Jason and Casey have such patience with me. They are my interpreters. Whenever we are out somewhere and someone mumbles a question to me (and believe me, there are a lot of mumblers out there), I don't even have to ask Jason and Casey what they said, they automatically look at me and tell me. I don't understand Casey's friends either. I think it's a teenager thing to look down and mumble, or to talk fast. Casey articulates her words very well, because she knows she has to with me. She interprets everything her friends say to me. When Jason and Casey aren't with me, I find it very difficult to function in the outside world. Hearing loss isolates you. I am no longer outgoing, and I shy away from just about all social situations. If there is music in the background, I will just sit in the corner away from everyone, because I will not be able to hear anything.

I do have a hearing aid for my right ear. A nice digital one that cost an arm and a leg. It helps in some situations, like church, but when there is background noise like in restaurants, it doesn't really help that much. It has a setting that is for "noisy situations", but I don't find it that helpful. I'll be honest, half the time I don't even wear it.

This past hospitalization at Duke was very difficult. Jason wasn't with me to interpret what the nurses said, so I found myself just saying yeah to about everything they said. I read lips pretty well, but still have a difficult time with women who don't speak up. The male nurses and docs... I can hear pretty good.

They told me after I had my lung transplant (and was able to stop the IV antibiotics) that some of my hearing might come back. It didn't. It's actually gotten a little worse over the years for whatever reason. I also find that when I'm lacking sleep or dehydrated, the buzzing in my ear is a lot worse. This makes it very difficult to hear anyone unless they are close to me, looking at me, and speaking very loud and clear. I'm just so thankful for closed caption, because otherwise, the tv would just sound like a foreign language to me.

Funny story... when Casey first met my friend Lori (who unfortunately, also has hearing loss), she said "Mom, she has the same dumb look that you do". Lori and I thought that was hilarious. If you are one of the many CFers with hearing loss, you know just what she's talking about. It's that look that you give people when you have no idea what they just said, but you don't want to say "Could you speak up, because I can't hear you". LOL.