Monday, March 23, 2009


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.


Megan said...

I know EXACTLY what you're talking about. I rely on my friends and family to tell me whats been said, although I don't always understand them, go figure! My hearing loss is the oposite - I can bearly understand men but women are just that tiny bit easier to hear. *sighs* I wish I could say my hearing aids help, but aparently what I have is nerve damage, so no amount of volume adjusting will help me hear. Xx

Aspiemom said...

Yep! The Tobramycin started doing it to me this last time. Unfortunately my son and husband get annoyed with me, but thankfully mine isn't too bad.

Very good informative post!

CowTown said...

I've been in the same boat as well. I know exactly what you're talking about. My cause was from daily, high dose zithromycin for a year's course.

One morning I woke up literally (which felt like) 70% hearing loss. My husband would say something a few feet away and I could tell he was talking but couldn't hear him! It was very scary at the beginning. My hearing went up and down several times due to antibiotics. Eventually mine has come back though after stopping the meds that did it. I agree it was very isolating out in the world while not being able to communicate without help.

Christy, I didn't realize you also had the myco abs. I have the myco avium complex....still. That sucks your hearing didn't come back after you got rid of your myco with new lungs. (Your myco is gone, right?)

I'm in the Huh gang. :)

The Smithson Family said...

As a fairly new mom to a child with CF, reading this has helped me to understand why they will be testing Lainey's hearing every 6 months. She was on heavy medications when she had her surgery at 5 days old. Thanks for the info...

Somer Love said...

O wow! Well thank you for sharing this with us. I can't believe you were on Iv's for so long.

I am glad Casey and Jason are there to help you. That can be so frustrating I am sure. I sometimes notice it after Tobra. I am not sure the last time I had my ears tested? My eyes seem to be very blurry these days maybe cause 30 is approaching :)

Aubrey said...

OMGosh! That was pretty funny! Kids say the darndest things!

Anonymous said...

Classic, Christy & Lori moment. That was absolutely hillarios! I just lol right now. Give her a big hug and kiss for me when she gets back. XOXO