Tuesday, December 16, 2014

Using the Phone

I have some really exciting news.  I can hear on the phone with my CI!  I know most normal-hearing people are probably thinking, big whoop-tee-doo (how exactly is that spelled, anyway?), but it is a huge deal in my world.  And I'll tell you why -- I haven't been able to use my left ear to talk on the phone in over 20 years.  That's two decades.  That's the majority of my adult life.  That's, well...you get the picture.

One day I thought I'd see how I'd do on my iPhone so I decided to start by listening to a couple of voice messages.  I was amazed at how loud and clear they sounded.  Then I made a call to a store to see if they had a particular item in stock.  Not once did I have to ask for a repeat or say, "What?".  By the time I finished the call I was so excited I had to share the news so I emailed a couple of people who would understand my enthusiasm.  

I've had a hearing loss for so long that I have become conditioned to being adverse to making or taking calls.  I don't know if I'll ever get over it.  Maybe after lots of practice and some success I'll start to gain more confidence.  I remember even as a kid I didn't really like to spend a lot of time on the phone.  Maybe that was because of the lack of privacy since we were tethered to one spot. Even with the extra-long spiral cord, I had to stretch it to get into the next room. Or maybe it had something to do with the fact that my dad was a realtor, and as such, a tied-up phone line meant the possibility of a lost sale.  After all, this was before answering machines and call waiting.  Ah, the low-tech, or should I say no-tech, years.

Today I had to make another phone call and I felt myself taking deep breaths beforehand.  I made sure I had my hearing aid in my right ear just in case I needed to switch to that ear if I couldn't understand what the person was saying on the other end.  Well, the risk of jumping in with both feet is you will stumble and I did. The phone call started with my implanted ear, but quickly changed to the aided ear after I struggled to get everything the person said at the beginning of the conversation.  I even had a hard time understanding with my aided ear.  It confirmed what I already knew -- aids and CIs were never meant to be hearing miracles.  So I would give myself a B- on today's call (I got bonus credit for effort).  Oh, well.  With a lot of practice I'll get it down.  Now I need to work on the anxiety issues.

Wednesday, December 10, 2014

Overwhelmed


As if getting a CI wasn't overwhelming enough, they give you a bag, the size of a carry-on, jam-packed with accessories.  The picture doesn't really show what is in my bag, but it gives you an idea of how much stuff I got with my bionic ear.

Cochlear America, who made my CI, bundled the cost of everything -- the surgery, the device and all the goodies that come with it.  Before my surgery I had an appointment with my audiologist devoted to picking out the  accessories for my bionic ear. I was given a sheet of paper and allowed to pick out five items.  I don't even remember everything I selected, but I know I chose to get the aqua case that will allow me to wear it in the pool.  Now I'll be able to get in the water with Noah and be able to hear what is going on around me. 

I was really surprised when my audiologist told me that she was ordering two processors.  My first thought was, "Don't you think you should ask me if I want to pay for a second one?"  She quickly assured me that private insurance covers the cost and it's nice to have a backup in case something happens to one of them.  So I chose to have one black and the other mocha. 

When I opted for rechargeable batteries as my main way of powering my CI, I didn't give any thought to having one more gadget to keep track of charging.  But, that's not the only thing that needs to be plugged in or charged every day.  See that blue box in the picture?  That's what my store and dry container came in, and that wasn't included as one of my five accessories.  So every night when I get ready for bed I take off my CI and put it in the dry and store.  And yep, it has to be plugged in every night.  It zaps up the moisture in my CI that can cause damage to the electronic components.  I have not one, but two remote controls.  One small simple one that changes volume that can easily fit into my purse, and another one that allows me to change programs among other things.  And how does my bigger remote get it's power?  You guessed it...it has to be charged too.  Argh!  I already had a mess of cords to keep track of, now I've got three more.

I have been so busy getting ready for the holidays that I haven't spent much time going through everything in my suitcase (that's what I call it). I take my bag with  with me when I go to my audiologist appointments because sometimes there are things she has to refer to when we are going over my progress and questions I have.  And speaking of progress...my next post will be devoted to this topic.  Hopefully by then I'll have more therapy experience to share.   

Tuesday, December 2, 2014

What's that sound?

I'm at one week post activation and each day is bringing better understanding of what I am hearing.  Having said that, I have a long way to go.

A couple of the first things I noticed shortly after I was activated was how much clearer sounds, like running water for example, were than speech.  Wow, my microwave buttons were loud! I had no idea. One day I heard a sound like someone was popping bubble wrap.  I looked around to identify the source and noticed I had just received a text.  Aha!  That sound was my text alert.  I wanted to hear more of it!  

Speech is still not at a place even close to where it was with my hearing aids, but I didn't expect it to be this soon.  At first my brain seemed to have a lag time between when someone said something and the time I realized what they said.  This isn't a problem anymore. Now I can communicate in real time, even if I am not understanding more than half of what is said.

The last couple of days I've noticed a marked improvement in  understanding voices, but things are still a jumbled mess of garbled sound.  It reminds me of what it sounds like when a radio station isn't quite in tune -- I can tell someone's talking but I'm getting a bunch of frequency and static noise.  I've decided my word for the day is reverberation because that sums up what I'm experiencing the most.

On my way to the grocery store today I listened to the Diane Riehm show on NPR because I knew it would be good practice for listening to speech.  I could hear one lady's voice (I don't know who it was, but it wasn't Diane Riehm) pretty clearly and was able to pick up a significant amount of what she said.  I came to the realization that I was hearing two layers of voices at the same time -- the person's
"normal-sounding" voice and the robotic version of their voice.  If I focused on their "normal-sounding" voice I was able to comprehend what she was saying much easier.  I have no idea if this is a typical experience, but it was quite cool yet annoying at the same time.  

I could write a lot more about specific things I heard this past week, but I will save it for another post. 

Wednesday, November 26, 2014

I'm Activated!

And now for the big day we've all been waiting for:  activation!  Tom and Noah went with me to experience it all first-hand.  While there were a lot of things that happened during my visit that I could talk about, I will cut right to the chase and get to the point where my cochlear implant was turned on and I could hear.

Tom took a series of short videos (all roughly a minute or less) and I've been trying to get them pieced together so there would only be one.  I've exhausted my time and energy on it today and since I know I have friends and family anxious to watch them, I'll just post them separately.  They are in sequential order, starting with the first time I heard someone speaking, the audiologist.




Tom talks to me to see if I can understand him






Nails clicking on desktop are crisp and clear

Can you hear me?

Everyone sounds like a high-pitched computer voice

Sunday, November 23, 2014

More follow-up appointments

I had two follow-up appointments at my ENT's office this past week.  The first one was on Monday with the nurse and the second one was with the doctor on Friday.  Rather than bore you with all the details, I'll just tell you about the main issues.

My hair keeps getting stuck in the scabbing and the tissue as the incision heals.  Every time I visit the ENT office they have to pull the hairs out one by one and that is a little painful. At the time of my first visit on Monday my incision still had some scabbing, which was not what they want, so that was removed also.  There was a conflict between the hospital and the ENT clinic on how to care for the wound. The discharge nurse's written instructions were to clean the wound 3 times a day with a wash of half hydrogen peroxide and half water and then apply a prescribed ointment.  The ENT staff said the wash dries out the wound, causing it to scab, which hinders the healing process. 

On Monday I was put back on antibiotics because my wound was still red and they wanted to ward off an infection.  Part of what hindered my healing, besides the "wash", were my glasses.  If I wore my contacts I needed my reading glasses on to read.  If my contacts were out then I wore my regular glasses.  I tried positioning them so the stem wouldn't rub against my incision, but no matter how I tried to finagle it, they always slipped back to where they naturally want to sit. I tried putting gauze over my incision, but my glasses would eventually push it away. It's been sore, especially on days where the scabbing was removed. 

By the time I saw the doctor on Friday, the incision looked a lot better.  But, I had fluid behind my ear canal so I will be going back once again (and hopefully for the last time) on Dec. 12.  

The good news is that none of these small details will affect my activation. I am set for 2:00 on Tuesday, less than 48 hours from now.  I'm getting more excited the more I think about it.  I'm tired of hearing out of only one ear.  It's exhausting!  

Next blog entry will be post-activation and will be the most exciting one yet.  Check back soon for that update.

Saturday, November 15, 2014

An Angry Ear

As you can probably imagine, there isn't a lot to report on during this long waiting period until my activation date.  This past week I had my first follow-up appointment with the surgeon's nurse to make sure my incision and ear canal look good.  My stitches were removed, but I had more scabbing than they would like to see so I will be going back this Monday to make sure I am healing properly.  The nurse also looked in my ear canal.  She said it looked "angry".  I thought, yeah, well..I guess I'd be angry too if someone gutted my insides out.  She saw dry blood and irritation so I have to put some ointment in my ear each night to calm it down. I told her I had been experiencing a really sharp pain in my inner ear on occasion, but it only lasted a couple of seconds.  I have to confess that my negligence might have contributed to the pain because I blew my nose a few times before realizing that is a big no-no.  If I'd only read the discharge papers thoroughly I would have known not to do this.  Oops.

I left the doctor's office with the okay to wash my hair, but to be careful near the wound. Boy, did it feel good to take a shower (I had been taking baths). It was as if I reentered the land of the living.

I still catch myself reaching behind my ear where the incision is as if to adjust my hearing aid.  Sometimes my finger pokes a tender spot and I jerk my hand away.  Maybe I do this to make sure I still have an ear. 

There are only ten days to activation.  Let the countdown begin!




Wednesday, November 5, 2014

One Week Post-Surgery


Meet the newest addition to our family - Koki.  Okay, I know it's a little odd for a middle-aged woman to leave the hospital with a stuffed Koala Bear, especially one with fake cochlear implants, but my surgeon is a pediatric doctor who happens to also perform cochlear implant surgeries for adults as well.  So I went along with it when I was handed the little koala on my wheelchair ride out of the hospital.  You may be wondering why a koala bear.  My device is made by Cochlear America, which is headquartered in Australia.  So there you go.

I'm one week out from surgery and I can tell I am healing because it doesn't hurt to wear my glasses anymore.  That is a big relief since I'm getting old now and need reading glasses.  I still have a weird metallic-type taste on the left side of my tongue.  It makes salty food taste even saltier, kind of making salty chips yucky right now.  I still have a bruise near my left eyebrow and on the top of my left shoulder.  I also have a small sore spot on my forehead, like a small knot.  My jaw is also sore so I'm staying away from hard-to-chew foods. I don't know what the doctor did to me during surgery, but maybe it's best not to know?  

I was implanted with Cochlear America's CI 422 Slim Straight array, which was designed to leave residual hearing.  The other day I was patting my face dry after washing it and when I got close to my left ear I heard a high-pitched sound in that ear.  I take this as a positive sign that some of my hearing remains intact.  This is encouraging, but I won't know for sure until I have my hearing tested in that ear before the CI is activated.  

Yesterday I washed 3/4 of my hair for the first time since surgery.  Boy, was that a relief!  I thought I was going to lose my mind from having matted hair and an itchy scalp.  Today I left the house for the first time too.  And just when you thought my life couldn't get any more exciting (insert sarcastic laugh), I had an interesting experience driving home from the store.  I rolled the windows down because it was such a beautiful day.  Okay, that's not entirely true.  Yes, it was a beautiful day, but the real truth was I had a hot flash.  But, this turned out to be a blessing in disguise because by driving with the windows rolled down I discovered a bonus to having a cochlear implant -- no ear pressure.  Before my surgery I couldn't roll both front windows down in my car because the pressure would make them hurt.  Not to mention would render me unable to hear anything other than the excruciating sound of what felt like a tornado whipping in one ear and out the other.  So driving with the windows rolled down is a bonus perk!  Kinda like finding bonus fries at the bottom of your fast-food sack (Jim Gaffigan fans will know my reference here!) 




Friday, October 31, 2014

Surgery Update

Here it is already two days post-surgery and I am recovering quite well.  The surgery was a success!  The doctor tested the device to make sure it worked okay and apparently it does so that is a good sign.

The doctor made a roughly 3-inch incision behind my ear running up my head.  I left the hospital wearing a contraption that looks like a breast cup on my ear with a headband going around the edge of my hairline.  It was a novelty at first and quickly became more of an irritant as it became itchy.  But, hey, headbands are popular again, aren't they?

The pain was quite mild so I only needed to take one pain pill.  I try to not take any more than I really need.  I will continue to take antibiotics for 10 days to ward off an infection.  I didn't have any balance or dizziness issues at first, but I am feeling slightly off today for some reason.  My jaw is sore so it is a little difficult to eat some foods.  I'll be eating more Jello it looks like and the best food of all for a soft-food diet -- ice cream!  The left side of my mouth feels a little weird, kind of like a constant metallic taste.  It hasn't affected the way food tastes, but it's constantly there.

Tom's doing a great job at playing nurse, cleaning my wound three times a day.  We both expected a bigger shaved patch of hair around the incision, but you really can't see anything.  I have too much hair!  I guess in this case that is a good thing.  I have to keep the area dry.  I can't wash my hair for 10 days.  Yep, that's right -- 10 days!!  It's only 2 days post-op and I'm feeling itchy and would love to wash my hair and scrub away.  I only have to wait 8 days for that.  Whenever I think it's bad all I need to do is remember how nasty things were when I recovered from my tonsillectomy in 2008.  This is nothing compared to feeling like you are gargling shards of glass every time you swallow.

My left ear feels like something is missing since I've been wearing a hearing aid with an ear mold for the last 20 years.  In some ways it feels like my ear isn't even there anymore.  It is a hard sensation to describe. 

I have two follow-up visits with my doctor (the surgeon).  The activation date is set for November 25, the Tuesday before Thanksgiving.  My audiologist from St. Luke's Hearing and Balance will be doing my mappings for me (that's what they call the programming of the cochlear implant processor.  She'll map my processor according to my audiogram).  Until this time, I will only be able to hear out of my right ear.  Like everything else in this journey, it will take some getting used to.  My new way of hearing is a work in progress and I'm only in the beginning phase.  Stay tuned for more.

Monday, October 27, 2014

Sentimental Journey


Okay, I’ll admit it.  I’ve been getting sentimental this last week.  Who ever thought one could feel this way about a hearing aid?


As I count down the days to surgery, I’ve been reminding myself that soon I won’t have something in my left ear all the time.  I’ve been wearing a hearing aid in it for 20 years.  My hearing aid has become a part of me, an essential part of my daily life. 



The other day I came to the realization I will never hear like I do now ever again.  Wow, that’s kind of a heavy thought.  Hearing with hearing aids is still natural hearing.  Hearing aids are just amplifying sound so I can hear.  But hearing with a cochlear implant is mechanical since the device does the hearing your ear can no longer do. 



Everyone I know who wears a cochlear implant has told me when they were first activated everyone sounded like Darth Vader or maybe even Mickey Mouse.  Eventually the mind learns what the sounds are and the robotic-sounding voices start to sound more natural.  But music is another story, and is the primary reason why I dragged my feet in making the decision to get implanted.    



Music is complex and takes a long time for the implantee to appreciate once their device is activated.  Sometimes it can take years to fully appreciate it again and it requires a lot of listening practice to get to that point.  As a music lover I’ve been thinking about this a lot lately.  So this morning I decided to enjoy my music these last two days as much as possible.  I put on my Compilot, my Bluetooth device that allows music from my iPhone to go straight into my ears.  I’ve been listening to some of my favorite songs from the 80s like Come on Eileen, Billie Jean and It’s My Life (by Talk Talk) to more current songs like Counting Stars by One Republic and The Black Keys’ Lonely Boy. 



Tomorrow Noah has his first orchestra concert of the school year (he plays violin).  I plan to enjoy and appreciate it like never before knowing that I probably won’t feel the same way at the next one. 

Wednesday, October 22, 2014

Decisions, Decisions

Making the decision to get a cochlear implant is not something that can be done hastily, nor should it be.  A person with normal hearing might think if someone struggles so much to hear, it should be a no-brainer to want to get a cochlear implant.  But the whole should I/shouldn't I dilemma is a mixed bag of emotions.  

First, I'll state the obvious -- no one wants a doctor to cut into their scalp and insert something that looks like a flattened squid and then stick the little squid's tentacles (electrodes) into their cochlea.  No surgery of any kind should be entered into unless the benefit will outweigh the risk. 
The Slim Straight that I will have implanted



People with hearing loss are very protective of their ears, hanging on to every last bit of hearing they have left.  In the past, the process of inserting the electrodes into a patient's cochlea stripped it of all the hair cells, leaving the person completely deaf.  Now it is possible, in some cases, for the surgeon to retain the patient's hearing in the low frequencies. This is encouraging to me and I am cautiously optimistic about my outcome.  

Some people with hearing loss do quite well with hearing aids and/or speech reading so they don’t feel compelled to get implanted.  Getting implanted is an all-or-nothing commitment.  Once you get one, you can’t go back to wearing a hearing aid.  One thing implants and hearing aids have in common is they don’t restore or cure hearing.  

A lot of people don't like change.  Hearing with a cochlear implant is very different than hearing naturally through your ear, even if you wear a hearing aid.  It requires a lot of patience and hard work because in order to get the most out of it, you need to commit to daily aural rehabilitation.  Many recipients say voices sound robotic or like Darth Vader at first, but with practice they start to sound like you remember them. 

Electing to get a cochlear implant is only the first of many decisions I am making in my journey toward improved hearing and understanding.  There are three companies that make cochlear implants and each one comes out with a newer and better processor every few years.  I am going with Cochlear America and their newest processor the Nucleus 6.  Cochlear has FDA approval for wireless accessories that will work with my processor and allow me to hear over the phone and the TV better.  

And speaking of the accessories, I get to pick five of them as a bundled package that is all thrown in to the cost that insurance covers.   There are many things to choose from such as the kind of remote, plastic covers to bling-out the processor, type of battery, water-proof case so you can wear it in the pool, cables, blah, blah, blah...the list goes on.  And not only do I choose the types of accessories, but the different colors! The picture below shows some of the fun colors the covers come in. (Sorry, I can't get the picture rotated -- let me know if you know how to do this).


It is hard to decide what I will need since I’ve never had a cochlear implant, but there are more than five things I'd like to have.  I know it's not even Halloween yet, but maybe I better start writing my letter to Santa.

Tuesday, October 21, 2014

Welcome to I Hear Ya!

As I have gotten older I've learned to care less and less what people think of me.  I've become more open with sharing what daily life is like when you have a hearing loss. According to the Hearing Loss Association of America (HLAA), 48 million Americans report some degree of hearing loss.  Yikes, that's a lot of people.  Most likely you know someone who falls into this category.  Or maybe that someone is you.

The last couple of years I've been thinking about getting a cochlear implant.  Now the time has come.  On October 29 I will be getting implanted in my left ear.  I am going bionic and I'm excited!  And a little nervous and anxious.  I don't expect to have long nails by the time the day arrives. 

From the encouragement of others, I decided to start this blog in hopes it serves as an educational tool for those that are curious about my hearing journey or are experiencing hearing loss themselves. Please leave a comment and share your thoughts.