Update

It's been awhile!! Life has been (wonderfully) crazy but I have a lot to update. The biggest news is that surgery #2 is scheduled for Dev. 13. I had my pre-op appointment last Monday and everything is ready to go. And...insurance already pre-approved this surgery. :) This time we're implanting my "good" ear. The results should be even better than my current implant. Unfortunately, it does mean recovery will be worse. The 6-8 weeks of complete deafness will not be fun when I'm used to having sorta-kinda-ok hearing in that ear. But it's temporary!:) I'm a little more nervous this time because a different audiologist will be doing the programming, but my surgeon is amazing and God is faithful.

My implanted ear continues to do well. I've turned it off twice now, once on the grapevine and once during a hearing test on my other ear. Both times were AWFUL, which is good. :) I'm definitely depending on my Esteem instead of my hearing aid for speech now. There's a 32% difference in speech recognition scores between Esteem and hearing aid. It's amazing because my left ear has NEVER been better than my right. I'm finally used to depending on that ear. I'm also really used to hearing. When I can't understand someone, I panic. I know it's part of the adjustment process. I have a really hard time with accents. I'm also losing my ability to lipread quickly. I still can't believe how much easier life is. I had no idea how much harder I had to work before.

A few "aha" moments lately:

-the washing machine cycles all sound different
-I can hear water running upstairs when I'm downstairs
-rain is not as stressful. I don't have to cover my ears all the time and pray my hearing aids don't break.
-Listening to music while I'm getting ready in the morning is amazing!

"My God will supply every need"

And my God will supply every need of yours according to his riches in glory in Christ Jesus. (Philippians 4:19 ESV)

I got AMAZING news today!!! My insurance company has approved my Esteem and surgery!! They denied it the first time I filed a claim, but approved it in the first appeal. God is so faithful!

Believe it or not, insurance usually does not cover treatment for hearing loss. It is "not medically necessary.". And it ain't cheap! A pair of good hearing aids is usually $5-6,000. They have to be replaced every 3-5 years on top of that, plus there are other expenses: batteries, ear molds, repairs, remaking, etc.

Cochlear implants are usually covered now, but it took years for them to be approved. The Esteem has only been FDA approved for 2.5 years and it is usually not covered by insurance. In fact, I'm the first person with Anthem of CA to have it approved. The cost at surgery time was $30,000. It's worth every penny, but that isn't exactly pocket change. Now, I can get my other ear implanted! Yes, God is faithful.

My mom said it best: "It's a miracle that this exists, a miracle that it works and another miracle that they're paying for it!"

New normal

I had a couple big "Esteem moments" tonight. I was so fortunate to go to dinner with some very dear friends. We all used to work together and formed a remarkable bond but we don't see each other very often now. I hadn't seen any of them since activation. They're all used to me being deaf and having to repeat stuff. Twice during dinner, someone said something quiet and another person immediately started to repeat it for me automatically. But I didn't need it repeated because I'd heard it...both times. It's funny because hearing is normal for me now. I'm used to the effortless conversations in restaurants and not stressing over every sound in every word. I forget that it is really new and exciting until I'm with someone who isn't used to my "new normal." I absolutely love it, though. I get to relive the excitement over and over! :) The other big moment is that the battery in my Personal Programmer (remote) finally died! At activation, I was told the batteries would last about a month, maybe two if I didn't use the remote a lot. It's been 3 1/2 months. It may not seem like a big deal, but it IS because it means that I don't have to use the remote very often. In fact, I only noticed that the battery light was on because I was showing my friends how the remote works. My goal with the Esteem was to eventually get to the point where I didn't need the remote every day. I honestly can't remember the last time I used it. It's incredible to just be able to hear all the time without messing with hearing aids or batteries or even remotes. "Thanks be to God for His unspeakable gift!"

Sound Quality

The number one reason I got the Esteem is quality of life.  Being able to hear all the time is absolutely priceless and worth every second of pain after surgery.  The other big reason is better sound quality.  Since I was born deaf (lower case d on purpose!), I had only heard with hearing aids.  Without amplification, I could only hear extremely loud sounds (blender, lawn mower, etc.).  I honestly thought that hearing aids produced sound "normal" people hear.  I was SO wrong. With my Esteem, I'm not only hearing things I've never heard before, but I hear things completely differently.  For instance, I can hear individual sounds.  With hearing aids, sound is jumbled.  I can't think of a better way to describe it.  All the sounds happen at the same time and it's all amplified.  If you're in a restaurant, the chairs moving and silverware hitting plates is just as loud as the people you want to listen to.  It all blends together in a very loud, uncomfortable jumble.  Of course, I didn't know any different until May.  I was blissfully ignorant. :)  Now, things sound clear.  I don't have to work all the time to understand sound.  See, with hearing aids, even when I could hear sound, I didn't understand it easily.  I had to try hard to distinguish sounds and figure out what I was hearing.  It was the worst with speech.  Ever seen a Bad Lipreading video?  Sounds are very, very similar when you don't hear them clearly and lots of sounds look the same when lipreading.  The Esteem makes hearing easy.

Oddly enough, since I got my new hearing aid, I can't stand it.  I wore hearing aids for 22 years.  If the right one broke, I was hysterical and couldn't function.  I was completely dependent on them, no way around it. I had good, top of the line (Read: Expensive!) hearing aids Now, frankly, it sounds like crap.  Everything is obnoxiously loud and distracting.  It amazes me how well my brain learned to process the horrible sound quality I had for years and makes me ever so grateful for the Esteem.  In fact, when I'm singing at church, I have to take the hearing aid out.  Everything sounds horrible with it - and it's not because the settings are wrong.  Hearing aids just sound bad.  I never realized it because I didn't know what sound was supposed to sound like, but now I do.  And it's absolutely amazing!

I've shared this video before, but a lot more people read this now. :)  This video is a very accurate portrayal of what hearing aids sound like.  It is incredible that any amplification technology exists and allows hard of hearing people to function in a hearing world, but I am so very thankful that I don't have to hear like this anymore. :)

Word Recognition

I have so much to write about!!  This summer has been amazing, mostly thanks to my Esteem.  I still haven't found a way to put into words how much easier it makes my life.  I do not have enough time for a big update tonight, but I DO want to share some really, really exciting news!

Most of you know me in person.  VERY few of you have ever been around me without hearing aids.  It ain't pretty.  Before my Esteem, I was a WRECK if my right hearing aid was broken.  Even with a hearing aid, my left ear was pretty much useless.  I do not function like a deaf person, which made me COMPLETELY dependent on my hearing aids.  If the right one broke, I panicked.  I cried  the drop of a hat, didn't want to be around people, had panic attacks, etc.  It was awful. As always, I don't say that to complain, just to be honest and to show how incredible the Esteem really is!

Last month, I was on vacation for three weeks, starting in Long Beach.  While I was in Long Beach, my right hearing aid broke beyond repair.  Three months ago, that would have been AWFUL.  I would ahve been a wreck and my vacation plans would have been ruined.  But this time, it was no big deal.  I actually did BETTER with just my Esteem than I ever did with two hearing aids.  My trip was fun and relaxed and I was in LOTS of different situations but heard well in all of them.  It was fantastic.

Once I got home, I ordered a new hearing aid with the wonderful Megan (audiologist who makes my steem work so well!) and I picked it up on Wednesday.  It sounds awful...but that's a whole other post.  While I was there, I asked Megan if she would do a word recognition test on my Esteem because thought I was understanding speech better after a month with no hearing aid.  You see, the Esteem and a hearing aid sound completely different.  I was used to the way speech sounded with hearing aids and had to learn how to understand with my Esteem. When I had that hearing aid, I was kind of using it as a crutch because it was a familiar sound.  When I was forced to go without it, I learned how to listen and understand speech with my Esteem.  The word recognition test (aka speech discrimination) requires me to repeat one syllable words  that are played at 50 dB (conversation level).  One syllable words are the worst for deaf people because we really do have to hear every sound.  In a multisyllabic word, we can use other syllables to figure out the word if we miss sounds.  So this test has always been the worst for me.  Before surgery, with a hearing aid, I got 0%. That means that, even with my hearing aid, I could not understand speech in my left ear.  At activation, I got 56%, which is fantastic!  At my adjustment 4 weeks after activation, I got 68% - even better!  But...after a month with JUST my Esteem, I got 92%!!!  During the test, I kept thinking, "OH!!  That's what that word is!" I've had this test dozens of times but never knew what some of those words were...haha! 

There's a lot of negative press about the Esteem right now.  While I am truly, truly sorry for people who are not getting great results, I am SO THANKFUL for this miracle - and that's what it is. 

Swimming

One thing I was really excited to do after activation was swim. :)  My parents have a pool so I grew up swimming a lot, but as an adult, I HATED swimming with people because I couldn't hear.  Hearing aids and water do not mix well.  Outside of family, there are only a handful of people I could handle swimming with just because I got really anxious when I couldn't hear...more on that later.  When my adorable little "nephew" and "niece" surprised me with a visit last week, one of the first things we did was get in the pool! :)  I had been swimming with them before, but this was the first time I'd ever been able to play with them in the water.  They are 3 and 5 and very imaginative and fun right now.  Brynna announced that, "Bub is a mean shark and I'm a dolphin running away.  And you're my best friend."  That was - by far - my favorite post-activation moment. :)

The main thing I'm realizing now is how much I missed before I could hear.  I assumed that hearing aids worked well and I was hearing most of what everyone else did, but I was SO wrong.  It's the little things that get me, things like playing in the pool. Hearing the kids laugh when we spin around in circles or being able to help Brynna jump in the water...those are things I never thought about or even realized I was missing, but those are priceless moments.

I don't usually post pictures of myself in a swimsuit on the internet (YIKES!) but a lot of people who read this are considering getting an Esteem.  Unless you've been deaf or hard of hearing, you don't understand the panic that comes with not hearing in social situations.  I think these pictures do a really good job of showing the difference. :)  I can't describe how amazing it was to actually PLAY in the pool and enjoy it!

This is really personal and I'll probably regret posting it, but if you know me in real life, you know my greatest desire is to have a family.  I struggle with understanding why I still don't have that...but being with the kids last week showed me how much easier life as a mom will be now that I can hear.  For the first time, I was able to talk to the kids while I was driving.  I could never understand them without lip-reading before.  I could hear them at night and when they were upstairs and I was downstairs.  Had life gone the way I planned, I would already have kids by now...but maybe this is all part of God's plan for me.  He knew this miracle was coming and that I'd be able to experience it.  Maybe it's part of the reason for the wait! :)

4 Week Adjustment

Part of having an Esteem is getting adjustments pretty regularly.  I'm very fortunate to live a few hours from my surgeon/audiologist's office AND my audiologist does not follow a fixed schedule for adjustments, so they got me in for an adjustment really quickly.  The main reason was to (hopefully) fix the problems I'm having a church.  I guess I'll find out if that worked tomorrow. :)  The added bonus is that Megan (the wonderful audiologist) was able to add more volume.  Apparently I'm adjusting REALLY quickly and can tolerate a lot of volume.  I thought this was obvious given my occupation. :)  However, Megan told me she usually can't give this much volume for A YEAR after activation.  Mine was 4 weeks ago.  I am SO blessed!  I am definitely not using all of the volume now, but I can adjust it whenever I'm ready.  The Esteem has 3 settings which are different for everyone based on the type of hearing loss and severity of it.  Usually, one is for quiet conversation, one is for background noise and one is for phone or tv.  I have a remote (Personal Programmer) that I can use to change settings whenever I want.  However, I hate doing that so my goal is to find a program that works for every situation.  In fact, on any given day, I couldn't tell you what setting I have it on. :)  Each setting has (had, now) 6 volume levels (0-5). Apparently, yesterday it was on C5, which was the loudest setting at the time.  Since I was able to tolerate that, Megan added more volume to C and completely changed my A and B settings to try and eliminate background noise.  I *think* it's on A3 now.  A is not quieter than C, but it has less power at certain frequencies which should eliminate the echo and static at church.  We'll see. :)

The BEST news is that my pure tone average and speech reception threshold are now 25 dB - NORMAL!!!!  Granted, it's barely normal, but that didn't stop me from screaming, "Are you freaking kidding me?!?!" when she said, "That was 25!!!!" :)  And...it will continue to improve over time. :)  I'm posting pictures below.  The first one is from activation.  The X's indicate my hearing with no hearing aid or Esteem.  It was bad.  The E's indicate activation.  I got INCREDIBLE gains at activation!  The other picture is from yesterday.  Some frequencies were better, some were worse but overall, it showed improvement.  My speech reception threshold was 5 dB better AND my word recognition went from 56% to 68%.  I'm still learning how to process sound and recognize how words sound now. :)  The test was given on setting C3, not even the loudest.  Megan will do a quick audiogram at every adjustment to see how I'm progressing, but so far, it's amazing.


Of course, those are just numbers.  They're really, really amazing numbers, but they don't tell you how incredible this is.  After my adjustment, I met a friend of mine to head to the beach.  Hearing the water is great...but being able to hear WITHOUT worrying about sand or sunscreen breaking my hearing aids is even better.  I can really relax and even play in the water without stress.:)  We went to dinner in a really noisy restaurant with a live musician...and I could actually carry on a conversation with all of that noise.  It was amazing.  I'm still using closed captions for TV, but when I went to the movies today, the quality was awesome!!!  It was REALLY loud, but I didn't know there was such a depth to the sound!!!

Before surgery, other Esteem recipients told me the implant made them a lot more outgoing and confident.  I'm starting to understand that.  There are SO many things I want to do now - water parks, theme parks, jet skis, concerts, football games, etc etc etc.  It's just so much easier to be in crowds and talk to people.  I don't feel stupid constantly because I can't understand what's going on around me and I have to guess.  That was REALLY frustrating before.  Asking everyone to repeat themselves gets old so I would just guess what people were saying...and I was wrong a lot. :)  I'm still in awe of all of this.  It really is a miracle!