CIsoundsX2

Harmony for C1 Upgrade

2010-11-12T13:20:00.000-08:00

This will be a quick post to share my great experience with the Harmony for C1 upgrade. I'm just beginning this journey and so far it is going wonderfully!! My Harmony upgrade was programmed on November 9, 2010, last Tuesday. I know test results only show so much and are not exactly a realistic reflection of how we are actually hearing. However, I was not surprised by these test results so all I can say is my hearing is better than I ever dared to dream back in the dark days of hearing loss prior to getting my first CI.

Drum roll....

Harmony/C1 on Left - 96% on sentences, previous test was 93%
and 66% on words, previous test was 44% (in Feb 2009 I switched from SAS to MPS - that's a previous blog post if you are interested in reading about the big switch - and started seeing improvements after that for the first time in a few years and I believe this latest upgrade to the Harmony has boosted the improvements even more!) I never dreamed I could still see this kind of improvement in my left ear after 12 years of wearing a CI without having another surgery!

Harmony/90K on Right - 100% on sentences, previous test was 99%
and 88% on words, previous test was 76%

I'm on the hearing cloud nine! T-mics in both hears what could be better?

Thank you Advanced Bionics!!

The Quest for Words

2010-07-21T19:18:00.000-07:00

Snooping around my computer tonight, I happened to find the paragraphs below, with the title above, that I wrote in 2005. Maybe I was thinking of writing a blog or trying to write an article for HLAA. I don’t really remember now. Obviously, I didn’t have a good ending so there was nowhere for the article to go. Not so now! Time to finish it, don’t you think?

Written in 2005
Have I spent my entire life looking for words? It feels like it. But, no, I had normal hearing for the first 21 years of my life. I didn’t know a thing about the ‘Quest for words’ early on. I had no idea that at 21 I would start a journey that would lead me to deafness and beyond. At this point in time, I can’t remember what it was like to not quest for words. I didn’t pay any attention back then, because I had no idea what it would be like to not be able to hear words. I took them for granted.

Every Christmas I search for Christmas music I can hear. So far the best place is church. All my hearing friends and co-workers talk about getting sick of hearing Christmas Carols every year. I long to hear them well enough to get sick of them! Every year I buy one or two CD’s hoping against hope that I will be able to hear the words. Where are the words? I hear the music quite well and enjoy it, but I’m greedy, I want the lyrics. So far I have not found the perfect Christmas album where I can hear the words.

Back to the present: Now, 2010
Words are back! Soft words, loud words, distinct words, radio words, TV words, movie words, phone words, conversational words, words are all around me and I’m so into hearing them! It’s been an exciting two years since going bilateral in 2008 with a CI in my right ear to complement the one in my left ear. Is it my brain that needs to hear with two ears or is it the newer CI technology in my right ear or maybe it is just that the right ear is somehow in better shape than the left ear? Whatever... All I know is that I can hear words again!

Can I hear someone speaking in another room? Bill is in the living room with the TV on. I am in the kitchen after dinner surveying the mess of left-over food and sink piled high with dishes. In a voice I hope is loud enough for him to hear, I say “You know what happens when we cook!” and Bill still in the living room, quickly catches my ‘hint’, replying “You put the food away and I’ll clean up”. I heard him as if I was standing next to him!

Can I hear in groups? We’re a group of six sitting in a semi circle on a deck overlooking a river. We’re eating dinner and I’m easily hearing and following what is said. All of a sudden a loud noise starts up. I have no idea what or where it is but it is annoying me and interfering with my listening. As I’m trying to listen to the talking, I catch a glimpse of a tractor between some trees on the other side of the river. I realize there is farm land across the river and behind the trees. A farmer has chosen this Monday night to do some farming. Once I located the sound, I was able to return my focus to hearing the conversation and it was again easier to hear. At some point, the farmer went away, but I didn’t notice, I had tuned it right out.

Can I hear lyrics on songs? Absolutely, amazingly, yes, yes, yes! We are in the living room chatting and all of a sudden I realize I’m hearing the lyrics of a song that I don’t remember hearing before. I start singing along just to show Bill that I hear them. He smiles, knowing that I’m showing off again.

Can I hear people when I’m not looking at them? I’m standing in the kitchen area of a houseboat. There’s a group of people milling around, talking and laughing. The Chinese exchange student that is with us on the houseboat trip steps up behind me and speaks into my right ear (T-Mic ear). She says “Can he be my security number two?” My first instinct is to turn around to look at her and ask her to repeat. But I pause instead. I’ve heard it clearly and realize she is talking about our oldest son. Our youngest had left the day before and he had been her security number one, protecting her from any perceived dangers on the trip. So I say, “You’d better ask him that”. The buzz of conversation and laughter around me continues.

Can I take notes in meetings? I could never do this before. I had to focus on what was said and not look away from the speaker to write. Recently, I was in a meeting with 5 other people. The other folks were doing most of the talking so I was just listening. I started writing the key points that would pertain to the part of the project I would be responsible for. At the end of the meeting, I realized I had taken notes so I typed them up and sent them out. Only two additional items were added later and both were not things I would be dealing with so that is why I didn’t write them down.

Can I hear people with a strong accent? I’m not sure, but I may be about to find out. Bill and I have decided to host an exchange student from South Korea. She should be a pretty good English speaker. Or she may not be. I’ll be finding out sometime around August 24th. I’m eager for this new hearing challenge!

Flight to California

2009-11-06T05:44:00.000-08:00

The travel to California was long yesterday. I started with a 45 minute drive to the airport, stopping to drop off the pager at work. A 50 minute flight to Detroit which left later than it was supposed to and a run to the 5 hour connecting flight left me famished with no time to grab a bite. Of course the plane only had snack boxes left by the time the attendant reached seat 31F. Radical measures were called for and being sure it was 5 O’clock somewhere, I ordered wine with my snack box. After my makeshift meal, I pulled out my iPod, put the seat back a bit, put the headphones on and cranked it up. (People, I’m already deaf, don’t do that if you’re not!)

Awesome sound filled my right ear which has a T-Mic on the Harmony and makes using headphones very natural. The left takes a bit more work to hold the small earbud like headphone up to my microphone which sits slightly above and behind my ear. On the left I use a PSP processor with that older C1 cochlear implant. The music sounds so much better with two that I hold it up there until my arm starts to ache. About that time, I realize this experience might be worthy of a long over due blog post.

So here I am at 30,000 feet, writing on a mostly blank avocado ad page in O magazine so that the thoughts actually make it to the blog rather than being left up there in the ozone. Who would have guessed that inspiration would come to me up here when all I have is a magazine, book and iPod at my seat and the laptop is stowed someplace over head. I didn’t keep it with me as I sat down because it’s just plain too big for air craft use and the battery lasts about 2 minutes. Note to self: time to retire that 5 year old laptop and get a snazzy new lighter and faster one.

It’s very cool up here listening to Neil Diamond looking out the window at all the circles down below. I didn’t know they farmed in circles and I’m told later by a new CI friend from Massachusetts that they are irrigation circles. The circle makes me think of the UFO crop circle I just put on my Facebook Farmville farm game and thinking of Facebook is making me realize that it is probably why I haven’t updated my blog lately. I spend too much time playing Farmville and listening to the cows moo and the chickens cluck and all the other animal sounds. Have you played Bejeweled Blitz on Facebook? If not, I don’t recommend you start, it’s too addicting. But, I love it when it says “Excellent”! Maybe you have to be deaf to truly understand what an amazing thing it is to hear these sounds and words!

As Neil Diamond sings “I am I said, I am said I…” in my ear, I think “Yes, I am deaf and Yes, I hear”! Hearing is possible with these amazing devices called cochlear implants. Many thanks to Advanced Bionics for sticking with the research and development until music is enjoyable and speech is clear!

The views out the window are amazing on this plane ride. It is so clear and I have a constantly changing landscape out my window as I listen to music. Snow covered mountains and red canyons, brown desert areas and areas that are clearly covered with trees. Majestic! Now, I believe I will sign off since Carole King is singing “I feel the earth move...”. Ummm, lets not go there.

Two CI’s and a Woman on the Road

2009-04-20T11:32:00.001-07:00

What a great hearing weekend I had in warm, sunny Michigan! With a couple of Hearing Loss Association meetings on the schedule, I was facing a good six hours in the car. Pre-CI, I found driving longer distances by myself extremely, excruciatingly boring. If you’re hard of hearing or deaf, you’ve been there. Once I received my first CI, my outlook on long drives improved a great deal because I could hear music again. In those early days, I stuck to tried and true CD’s of my old favorites from my hearing days. Since getting my second CI last July (2008), I have branched out to listen (and singing along!) to the music on the radio.

Returning from the Saturday meeting, I was driving along when my phone rang. I had put it on the LOUD ringer so I MIGHT hear it over the radio. No reading glasses on so I couldn’t see who was calling. A second’s hesitation… Will I be able to hear well enough to even know who it is? My mom is in the hospital… Better pick up. So I silenced the radio, grabbed the phone and answered. It was my brother calling to see if I had been to visit my mom yet. We carried on a conversation while I was driving along. (Michigan currently has no laws against this.) I had no trouble hearing him with the cell phone and the T-Mic on my Harmony! Awesome (or maybe not), now I have the same potential hearing people do - crashes due to cell phone distractions. I promise not to make a habit of cell phoning and driving!

Sunday was another meeting in another city, another hour and a half drive in another direction. I had the radio tuned to oldies and was enjoying the music very much. I felt like I was hearing more and more of the lyrics of each song.

All of a sudden I heard:

You are so beautiful to me
you are so beautiful to me
can’t you see
you’re everything I hoped for
you’re everything I need
you are so beautiful to me
Such joy and happiness you bring…

I found myself holding my hand out in front of me and imagining my Harmony in my palm as I sang this song to it. Sounds pretty corny! It WAS pretty early in the morning. I WAS slightly sleep/caffeine deprived. I DID need some entertainment. Mostly I was just feeling VERY appreciative of what I’d been hearing. It really does sum up how I feel about this sweet little device that lets me hear again! Just to reassure you, there was no traffic at all – think Timbuktu on Sunday morning. Everyone sane was sleeping or drinking their coffee with the Sunday news or maybe getting ready for church. This was way before the church traffic would start up.

All weekend, the lyrics just kept jumping out at me. Songs I had forgotten all about, like waves of memories washing over me. Crimson N Clover, Rock On, Goodbye Yellow Brick Rd… Oh, I just love it!

Then a song I had been trying to figure out for the longest time came on. I only heard the music and only noticed the song when I was alone so I couldn’t ask anyone what the song was. I tried once to hum it to my husband, but obviously my humming is somewhat lacking and he couldn’t help. The music would be so familiar to me but my brain was just not making any connections and my 'ears' couldn’t catch any of the lyrics.

Suddenly I heard:

Why can’t you see
what you’re doing to me
when you don’t believe a word I say?

My brain perked up and I started listening harder, turned the volume up a little, then I heard, “ …with Suspicious minds” . My eyes got big. I kept listening. Yes! Realization washed over me. This was the elusive song that had been toying with my 'ears' and brain for months when I heard it played on the radio. It’s mine now. Another one bites the dust…

Then the stop at McDonald’s for a coffee before the meeting. I pulled up to the ordering booth and heard ‘Would you like a double fudge brownie?’ I thought, ‘At this time in the morning? Are you crazy?’ but I very politely said ‘No thank you’ and went on with my order. I felt so empowered. I heard the question plain as day! This morning I did a repeat of this exact conversation while taking my husband in for his eye surgery. He said ‘That was a machine’. I asked 'What?' somewhat puzzled. He said: You just told the recording “No thank you”. We had a good laugh!

Hidden Losses

2009-03-13T21:56:00.000-07:00

When the opportunity to join a newly forming Toastmasters chapter presented itself at work, I decided to give it a try. I had considered the organization in the past, but didn’t want to travel as far as the nearest chapter. This was perfect, I didn’t even have to go home, the meeting would be right after work. It’s been interesting and entertaining. I’m a little nervous about participating in some of the roles since most involve hearing and listening carefully. Both are items I need to practice!

Last weeks Toastmasters speech was given by a co-worker who happens to be polish. Her speech was about who we are and how we have/learn traits from our ancestors. She spoke about her grandmother who taught her to speak polish and to bake and about happy sharing times. She urged us all to think about who we are and where we came from.

I’m polish on my dad’s side. My earliest memories of my grandmother are nothing like my co-workers memories of hers. My grandmother was profoundly deaf by the time I was a child old enough to remember her. I remember a nice woman with a heavy polish accent who could not hear me when I tried to talk to her. I’d never thought about it before, but now I’m wondering how much I missed as a child, not because I had a hearing loss, but because my grandmother did! How much more fully would my grandmother have participated in my life if she had normal hearing?

To my knowledge she did not ever wear hearing aids. Could she not afford them? Did they amplify too much noise to be comfortable? I feel myself mourning the hidden loss of never really knowing my grandmother. She lived a long life, passing peacefully in her sleep at age ninety-eight. She must have lived the last thirty years or more of her life in near silence. I don’t have any details about when she started losing her hearing. Was it like mine, starting in her early twenties and slowly slipping away from her? Did she spend twenty years mourning her fading hearing and the lost connections to her family?

A quick search on the internet turned up the Deafness in Disguise web site. In the 1950’s and 1960’s it was all about hiding your hearing loss. Not much there to really make a person want to wear a hearing aid or admit to having a hearing loss. She didn’t strike me as a vain woman, but who knows what the impact of popular opinion would have been on her?

My own life will be much different from my grandmothers thanks to the wonderful cochlear implants that I now have. I will be able to stay connected to family and friends. My grand children (God willing that I have some someday!) will get to know their grandmother. There will be no legacy of hidden losses. We will be able to communicate and share in each others lives.

The Hearing Experiment

2009-02-15T16:33:00.000-08:00

I promised an update and explanation of my ‘experiment’. It turns out to be rather anticlimactic. No mental anguish or hearing struggles to report. However, I once again proved to myself that I CAN learn new tricks!

At my recent mapping, I learned that there were 4 electrodes off in my older left side C1 cochlear implant. I do remember when two of those were turned off at my request because of poor sound quality out of that channel. There is no memory of the other two being turned off or of my being made aware of the fact that they were off. My audiologist explained how an electrode will automatically be turned off by the mapping software if the impedance is higher than normal and this is what was happening when I was mapped with SAS, a strategy that I have been using on the left side for the last ten years.

Interestingly enough, when mapped with MPS, those two electrodes stayed on. I had tried MPS a few years into my CI experience and did not feel I could make the switch from SAS to MPS. Lately however, I had been wondering if I should try again. My audiologist agreed that it would be worth a try and encouraged me to make the attempt. Doing so would give my 2 more electrodes and might result in better hearing with my left ear in the long run.

She suggested that I switch over on Friday after work. I tested the waters a bit prior to Friday and I didn’t like what I heard very much. By the time Friday came along, I was having second thoughts. It was a busy weekend ahead so I would be out and about, not just hanging around the house. I would have to risk not being able to hear at some events. Generally, I'm not willing to take any unnecessary risks when it comes to hearing. However, I was also feeling a need to do this. I finally decided I just had to go cold turkey and switch it over. So I took a deep breath and made the switch. Thirty minutes later, it wasn’t sounding too bad.

I went to my afternoon dentist appointment and was shocked at how loud the office was. Sitting in the dental chair, I realized this was my first visit since being bilateral. I could hear people in the other rooms and when she started cleaning my teeth, I could hear her scraping them! Wow, I had no idea that all these sounds were there. Saturday, I attended a bridal shower and then we went for dinner and a movie. By Sunday night I was feeling pretty good about MPS! It still sounded a bit strange, but was improving steadily.

Having the Harmony on my right ear made the difference. It gave me an ear to depend on while the other side adjusted to the new strategy. It’s now a 9 days after the switch and I know I will not be going back to SAS. I’ve switched back a few times to see what it sounded like and it sounds very harsh. A year ago, I would have said I was going to be using SAS forever! It will be interesting to see how that ear tests when I go back in August, but it sure feels like I am hearing even better now than I was two weeks ago.

Getting out of the comfort zone can be a good thing sometimes!

What I love about being bilateral and a 100% score

2009-02-02T18:56:00.000-08:00

The following are some things I love about being bilateral:

Sounds are louder, richer and fuller with both my implants on. With only one CI on, sound seems one dimensional and sort of flat. I hear better with one implant than the other but sound quality is best with both. Imagine watching a movie and then watching the same movie in 3D.

When riding in the car, I hear equally well whether I am in the passenger seat or driver's seat. I can hear and understand people sitting in the back seat regardless of which front seat I am in. Prior to being bilateral, I always heard best as a passenger and even then had great difficulty understanding those sitting in the back.

In large meeting rooms at work, I can hear people from both sides of the room. Prior to being bilateral, I would try to sit in the middle of a group but in large rooms I could still only hear those on my implanted side. If I tried to sit with my implanted side to all of them, then I was too far away to hear well. Now, I can place myself in the middle and I hear from both sides.

At parties or in larger groups of people, I can hear the person standing next to me regardless of which side the person is standing on. I feel like I am relearning to focus on one ear at a time depending on which side has the sounds I want to hear. It's much easier to follow conversations in noisy situations.
I've been able to attend company and department meetings without needing my FM since receiving my second implant. In church, I hear more of the prayer requests from people sitting around me and across the aisle.

You might wonder if it's difficult having two different strategies on the CI's. It was a bit odd at first, but maybe it would have sounded odd even with the same strategy since my right ear had not heard for close to ten years. During those ten years, I used the Advanced Bionics S-Series, then Platinum PSP /C1 cochlear implan on my left ear and no hearing aid on the right. After receiving the Harmony/90K in August, I was pleasantly surprised at how quickly my brain adapted to what it was hearing. Hungry for sound, it quickly started merging the two different signals to increase my overall understanding of sounds and speech.

Today I had my 6 month mapping for the Harmony/90K on my right ear and my annual mapping for the PSP/C1 on my left ear. Both ears scores were up. The results of my HINT sentence tests in quiet were awesome! Here they are:

Right Ear(Implanted with 90K/Harmony Aug 2008) Sentences 99%
Left Ear (Implanted with C1/PSP Dec 1998) Sentences 93%

Both together 100%!!!!!

So, does this mean I'm hearing perfectly, normally and everything?? No, of course it doesn't. But it does mean that I'm hearing the best I have in a long, long time!

My next post... Switching from SAS to MPS after ten years of CI listening. Can I do it? And why should I try?

Some Hearing Moments

2009-01-14T18:35:00.000-08:00

In Passing...

Monday I was out running errands and needed to FedEx a package. I went to a store near some other stops on my errand route. My first thought was "Odd, the parking lot looks bare." The store is kind of tucked around the corner though so I couldn't see it. As I started walking to the side walk that led around to the store, a couple of ladies passed me going the other way. One of them said something and it took a minute, but then I realized she said 'It's closed'. I stopped in my tracks. I heard that! I was excited that I heard her comment and also unsettled to learn the FedEx location had closed as it was located in an area that I would have thought would be a good spot. Signs of the times? I sure hope not!

On purpose...

I've been making more phone calls lately. On Friday, I came home and made three calls right in a row using my Harmony ear. I used our corded phone for one. It doesn't have much volume boost on it so it felt just barely loud enough. The other two I made on my cell phone which seems to have more volume boost. I find slightly humorous that when I am trying to listen with the phone using my Harmony’s T-mic on the right side, if I take my headpiece off on the left, it helps me focus on the sounds coming in the other side better. It reminds me of how people will plug one ear when trying to talk with the phone on the other side. Although people usually do that when it’s noisy and for me there was only the hum of my computer. I’m not sure why I find this amusing. Maybe because it’s one of those tiny actions that most people don’t think about when they do it and after looking on for years and years with a certain amount of envy about talking on the phone, now I can mimic the action. And maybe it has to do with the realization that it doesn’t take much to distract me from listening. Focusing on tiny voices on the phone is still relatively new for me after all. Whatever the reason, it made me smile.

Bits And Pieces (not)...

There was more I wanted to write, but it's gone. Just flew right out of my mind. I'm sitting here trying to think what it was but after 10 minutes of nothing happening, I'm going to wind this up. Till next time!

Movies and 2008 Wrap Up Part 2

2009-01-05T16:58:00.001-08:00

This will be setting a record of a sorts. Two blog entries so close together!

We saw two movies over the holidays. First was "Australia" on New Years Eve. It was long! Started at 9:15 and let out at 12:04 so we missed the ball dropping. At least we were awake which is more than I can say for other years! The accents were a challenge, but it was still easy enough to follow along with what was happening. I'd love to see this one again with captions. The little boy was adorable!

Last Saturday, we went to see Seven Pounds. I'm not going to spoil the show for anyone. I didn't have any trouble hearing what was said. Only a few spots that were tricky. The movie is a bit puzzling because not much is explained until the very end. A bit disturbing and sad story, but worth seeing. Will Smith is great in his part. We puzzled over the name all the way home and then looked it up on the Internet so we'd know for sure what it meant. See the movie first so you don't know the end, it will be better that way.

I'm still surprised when hearing words (not just sounds) and phrases of words that would not have been heard before going bilateral. Sometimes I don't even realize that the captions are not on. My hubby will point it out and say he misses them even though he has normal hearing. Or I'll hear a phrase and think, "I heard that..." Take note that the captions are off and then "Yes, no captions on so I must have!" By then I've missed the rest of what was being said because I was too busy being amazed at what I was hearing! I am so used to captions on TV that when they are on and are in sync with the actual speech, then it's like I can hear it even when I can't. Radio and podcasts are the best way to know what I'm actually hearing since there isn't any visual input at all.

The media is constantly blasting us with what a horrible year 2008 is. If my bottom line was the only thing that makes me happy, that might be true. Fortunately, there were many blessings in to be grateful for in 2008! My second CI and much improved bilateral hearing is right at the top of my list. Two ears are definitely better than one!! Even if they are not equal in hearing skills (my right ear with the Harmony does better than my left ear with the C1), everything sounds richer and fuller with both of my implants on. I don't go without either one very often. I hope you can find blessings from events in your life and that 2009 brings even more!

Year End Wrap Up

2009-01-03T19:41:00.000-08:00

It's been a bit hectic this December - in a great way though! Here's the run down...

The second weekend in December was an annual Christmas party that Bill and I have attended for many years. It has never been my favorite because most of the people I only see that one time a year - sometimes once or twice in between - so I am not that familar with their voices and it is very difficult to carry on a conversation in a crowded house anyway. This year was very, very different! Being bilateral helps tremendously in large groups of people. My Harmony is awesome! I had several conversations and even 'lost' Bill a couple of times (instead of sticking to him like glue and making him be my ear). When it was time to go, he said "You act like you are enjoying yourself and don't want to leave." Gosh, I realized it was true, I did enjoy it!

I was fortunate enough to be able to go to Los Angeles the weekend before Christmas for C1 Harmony trials and to tour the Advanced Bionics plant while I was there. It was a super informative tour and was wonderful to meet the people who work on our implants. Here I am with the 'famous' giant hands.

Some things I noticed on the trip were... I could hear the pilot make announcements and understand most of what he was saying. I confirmed with my son, Brandon, who went with me, to be sure I understood. Brandon filled in a few blanks but I was thrilled to be able to get most of it myself. That was a first in years and years!! It was also neat to be able to go through the machine at the airport without a lot of explaining of my implant and without taking it off. I did take the PSP off but left the Harmony on.

While we were in L.A. area, we went to a comedy club. My last experience with live comedy was not good. This time I heard most of what the first comedian said, the next couple, I heard bits but I think my mind was wandering and getting tired so it was more difficult (plus, what I did hear wasn't all that funny). The poor middle fellow was way too old to be up there trying to make people laugh and failing miserably. He did a lot of jumping around making faces and did this routine that we thought was supposed to be him playing a guitar but looked strangely like he was scratching his crotch with the strumming hand. Was that part of the joke? Don't know but no one found it amusing at all. I felt rather embarrased for the comedian.

We came home to piles and piles of snow! Our flight from Detroit to Flint was delayed more than an hour (we could have driven it quicker) so it was 2:30 am when I pulled into our driveway and buried my car in a snow drift. Ooops. Bill was a champ and came out to help dig us out. With less than a week left before Christmas, we were just in time to finish shopping and wrapping the gifts that would be given and delivered on Christmas Day. The wrapping was completely finished yesterday morning (yes, Jan 3) and all gifts have been delivered as of yesterday noon. One more family get together tomorrow and then I can start thinking about getting the tree put away.

Bill got me a pink iPod Nano. The ear buds that came with the iPod would not stay in my ears, so we found some headphones that look like ear buds and just sit in the ear, right in front of the T-mic. They work perfectly and even fold up to tuck away. I loaded all my CD's on the iPod Christmas day and just yesterday discovered quilting podcasts! Even better, they are free and I can hear them!! I feel like there is this whole world out there that I have been missing. Many of the quilting podcasts go back to 2006 so I literally have years of listening to catch up on! It's great listening practice and I'm learning some things too!

It's late so I'm going to wind this up. Stay tuned for updates on my recent experiences at the movies and I promise not to make you wait too long...

Thanksgiving

2008-11-23T18:48:00.000-08:00

Blessings we receive are wonderful. I've been so blessed and am so thankful this year to have my second CI. Less than a year ago, in January, there was not even a glimmer that my year would hold such exciting changes for me hearing-wise. At my three month checkup this month, I scored 99% on my sentence tests using only the new CI! Then a few weeks ago, I was invited to participate in the clinical trials for the Harmony for the C1, my older cochlear implant. This must be the icing on the cake (And it's a triple layer cake this year!).

Blessings we share with others are even more wonderful. So how do we share the gift of hearing? Most of us can't actually fix anyones hearing, right? Well, we can share by becoming involved in an organization such as Hearing Loss Association of America, it's state organizations and chapters. I spent the weekend at a Chapter Leaders Workshop (CLW) put on by Hearing Loss Association of Michigan. What a fabulous group of people and I am always amazed by what they accomplish! All are volunteers, yet they have managed to hold the CLW every year for the past 8 years. Our current state coordinator is a warm, bubbly friend named Brenda. She did an awesome job with this years CLW. Our former state coordinator, Liz, is just as fabulous and another dear friend. She not only did several presentations but also cooked for all 20 or so of us for two days and boy did we eat well!

I went to the CLW representing my chapter and also to do a presentation about the SE Michigan Walk4Hearing, which is scheduled for May 16, 2009. This will be our 3rd Walk4Hearing! The Walk4Hearing committee is currently a team of 8 people. Ann, Caroline, Maureen, Audrey, Barb, Liz, Brenda and myself, the chairperson. We each give something special and we each get something special in return. Friendship, fun times, the gratification of having helped a cause we believe in and also directly impact peoples lives. Each walk brings people together to share and learn that they are not alone with hearing loss. We feel empowered when we meet our fundraising goals which will benefit our chapters as well as the state and national organizations.

As if the CLW and the W4H were not enough to keep the Michigan Board of Trustees busy, there's also a program called the Hearing Technology Resource Specialists (HTRS). This group changes quite often. New folks join in and some need to let go and move on. I'm not going to list everyone, it's late and I'm afraid I'd forget someone. But they are out there and they know who they are. HTRS go around the state to do demonstrations and presentations about hearing assistive technology (HAT). Each HTRS is armed with phones, alerting systems, listening systems, FM systems, microphones, neckloops, headsets... you name it, there is sure to be one in someones kit. They can do one on one comparisons and large group presentations. They have been trained, they have learned their equipment, they are all volunteers! They are all 'everyday' people with hearing loss. Not letting hearing loss get them down, not asking what they will get in return, but willing to share what they know. This is truly the gift of hearing better being shared!

I have many, many other blessings in my life. My husband, Bill, and our sons, Brandon and Cameron; Friends and family near and far; A warm home, my kitty cats, employment and health. The holidays will present some challenges to those of us who are hard of hearing. When you feel frustrated by struggling to hear, take a few moments to think about what you are thankful for and how you can help others. It will help you get through the rough patches.
Have a Happy Thanksgiving!

Gardening and the Radio

2008-10-03T16:49:00.000-07:00

Gardening and the radio are not related in this post in any way. It's just difficult to show pictures of listening so I tossed in the garden thoughts so I could show off some pretty pictures of my garden. Note that most of these views have grown and changed in the last year or two. Every summer brings something new to the garden!

Fall is here, and with it comes the roar of the tractors out in the fields. I was just getting into my gardening this afternoon when they descended on the farm to spread gunk all over the fields. I don’t know what it is, some sort of fertilizer I suppose. It’s a powder so it clouds up a bit and stinks pretty bad. Yup, done gardening for the day!

We are doing much rearranging in the yard this year due to building a new porch. This is the porch of all porches and I have just loved spending time out there this year. Some of the bushes around the house were overgrown so we removed those and are working on a new flower bed that will be seen from the porch and the living room window. That got me going on my older beds, which are pretty overrun since I haven’t spent any quality time out there since they needed a good going over before our kids graduation parties. Four – five years ago? Plenty of time for the perennials to mass produce and the morning glories to take over the world! Since I don’t really need more flower beds, I’m eliminating one that is not visible from the house and shifting it over where I can appreciate the view more. Who knows, maybe keeping the flowers in sight will motivate me to maintain? I admit it’s not my strong suit.

Now that I’ve been chased indoors by the smelly (loud, I can handle) farm work, it’s a good time to update my blogs and even look at a few garden pictures, which I already miss. It’s going to be a long winter before I see any flowers again. I’ve included some of the garden views for you to enjoy.

I’m still listening to the radio and often sit in my car for a few minutes after pulling into the garage while I wait for a program to end. I'm still in awe that I can hear the radio! It’s interesting to listen and know what I’ve been missing. Some silly items: "Study reports that girls with wider hips are smarter"… huh? Not an “I didn’t hear” kind of ‘huh’, but a “what are you talking about?” kind of ‘huh’! I heard and what a hoot!

Then there was the program where the announcer would tell what the political candidate said, then play a quote of the candidate saying supposedly the same thing. The quote was usually far enough off the mark that it was a matter of opinion what was actually said. It reminded me of the Geico commercials that use a real customer’s experience and a celebrity to translate that to their version. It was so very wonderful to be able to hear it that I didn’t even care what they were saying. Does that make sense? I’m becoming a very undiscerning listener. Just give me words and I’ll listen! I will shamelessly eavesdrop and am thrilled to do so at every opportunity that presents itself! If you are a CIer, I'm sure you understand! :-)

What Am I Hearing?

2008-09-12T12:04:00.001-07:00

I’m hearing talk radio with a pretty good degree of success. Not all stations, but NPR seems to be really good for listening.

I’m hearing people behind me whisper in church while the organ is playing. I didn’t catch everything said but I heard enough to be amazed at my new found hearing!

I’m hearing people talk in the isle one over from me at work. Not the words but the bubble of voices – more than I have ever heard before and that's what my co-worker said she could hear. I'm also hearing the announcements and music better.

I’m hearing much better in meetings and have not been using my FM system for the last couple of weeks.

I heard the speaker without a microphone at a meeting in a big conference room at work. I was in the 5^th row and had no FM and the microphone was broken.

I can hear walk partners no matter which side of me they walk on!

I can hear books on radio well enough to follow along. My brain needs practice taking the information heard and relying on it to understand though. Sometimes I find I have a really hard time concentrating on audio books. No doubt a byproduct of all those years of not hearing and being so visually oriented.

I'm hearing sales people when they ask 'Are you finding everything?' I can smile and say 'yes'. Before I never really knew if they were asking 'Do you need help?' or 'Are you finding everything ok?' and so I'd usually mumble an answer in a complete sentence just in case I wasn't answering the right question.

We were at a Polka festival today. Great opportunity to try out my noise program! Not that polka music is noise. I don't mean that at all. The noise program worked pretty well. It was so loud, everyone was shouting above the music so it helped to have a narrower IDR to screen out some of the music and focus on the voices.

After ten years with my first CI, I had gotten comfortable enough with it that I was taking for granted what I was hearing with it. Getting the second CI has re-awakened my wonder of hearing again. The newness of hearing in my right ear hasn't worn off yet. I find it particularly amazing how my ears work together to create better sound. I always felt this would be true and yet it still is amazing to me. I am continually, turning off one CI or the other to see what I'm getting from each one and then turning them both back on to marvel at the sound they deliver together. I'd like to say I'll never take my hearing for granted again, but I know that after a few years with both CI's I probably will. When I take them off at night, I will remember that I am deaf and that being comfortable enough with my CI's to take them for granted is a gift in itself.

Bilateral and new CI moments

2008-08-26T16:04:00.000-07:00

Over the weekend, I was sitting outside by the campfire with my husband Bill. It was still daylight. We were waiting for a couple of our friends to arrive. Bill had his iPod connected to speakers that were hanging on the house about 20-25 ft away (I hope I'm not exaggerating the distance. Bill's not here so I'll ask him when he gets home.) The music was not loud and we were talking to each other without any problems. I could hear the music but wasn’t really paying attention. All of a sudden a song came in very clearly. I started singing along. Bill did a double take and said ‘You can hear that?’ I nodded and kept singing bits of the song until it ended. Bill said ‘You were even on key!’ And a new Rock Star is born!

The campfire after dark with 4 people around it was a less than exciting hearing experience. Maybe with time it will improve.

After the friends left, I used the direct connect to hook my Harmony up to a book on CD. I had been reading the book all week and when I went to the library, I found it on CD. I decided I’d finish it by listening and reading along. I turned my left ear off. First I was disappointed because the book on CD was an abridged version so I could not follow along word for word. After a few minutes I started getting excited because I could hear the CD version well enough to know where it was skipping sentences and paragraphs in the book version. I stayed up until midnight and finished the book listening and searching for where it was in the book version. Not exactly a relaxing read, but fun to be able to do it less than three weeks after activation!

The next day we were riding in the car. The radio was playing a hunting show. The guy was talking about dogs. He said “I like dogs.” After about 4 times and finally I said, “Ok, the guy likes dogs!” Bill was surprised again that I was hearing it and I just kept repeating what the radio guy was saying. “It can be very challenging but it’s also very rewarding to train your own dogs.” I’m finding that I love showing off how good I am hearing!

Sometimes I am still frustrated and I am clueless about what is being said around me. Hearing encounters of the successful kind like I describe above (my second CI has been activate for less than three weeks) gives me lots of hope that it is going to be awesome in a few more months! I try to remember it is still early in my foray into hearing in stereo and to not get too upset when I don’t hear all that I’d like to.

It is still as if I am hearing two different things. I can just go with the flow and listen to both or I can focus on one ear or the other to hear what is coming out of it. Actually “what is coming into it” might be the correct way to refer to the sound, but at least with the new CI, if feels more like the ear is outputting sound than inputting it. I’m sure that doesn’t make much sense to anyone except maybe another new CI recipient. I’m wondering if the focusing on one ear over the other is how people can determine direction, but it’s not automatic for me. I have to think about which ear to listen to and sometimes I can’t really get the focus on the individual ear. It’s just been too long for me to remember how having two ears felt and then I probably didn’t pay attention to how they worked together anyway.

Sounds in Paradise (and elsewhere)

2008-08-18T16:41:00.000-07:00

Last Thursday, I used the phone at work using both 'ears'. It rang so I had to answer! It was a co-worker needing support on the claims system that I work with. She was talking really fast. I explained that I was HOH and could she please slow down a bit. I understood what she needed me to fix but asked her to send me the details in an email so I'd know I had the right policy number, claim number, unit number, etc. That was just too much to try to get over the phone and in that situation; a guess was not good enough. We emailed back & forth a bit and once I had the fix finished I started to email her to let her know. My hands paused over the keyboard. Good opportunity for some phone practice, I thought. Not much I need to understand except her confirmation that the problem has been corrected. I quick grabbed the phone and dialed before the little doubting phone devil forever sitting on my shoulder could stop me.

Friday, I had my one week checkup. I was re-mapped and then tried S and P again. I felt I could hear equally well with either. I commented that P had an echo or hollow sound and my audiologist said ' Why make your brain get used to that if it doesn't have to.' Good question! I agreed to just go with S this time. Program one is T-mic only. Program two is 50/50 T-mic and internal mic. Program three is 50/50 with T-coil activated. Guess what I discovered! I don't have a phone that works with a T-coil! At home and at work, I have always used direct connect to my BWP and my cell I just put up to my CI microphone.

We spent another weekend at the lake, this one much dryer and warmer than last weekend. It was beautiful. Caseville, otherwise known as Key North (and sometimes Margaritaville) was having their "Cheeseburger in Paradise" festival. The bay we are on is called Wildfowl Bay but goes as Flamingo Bay during Cheeseburger. This is a wacky, tacky festival that is all about music - Jimmy Buffet music in particular. Hence the name. Cheeseburger stands line the main drag all week long. Activities abound! Cardboard boat races, lots of music & dancing on the beach and everyone makes crazy hats to wear. Flamingos and parrots rule the land. We went to a concert at the marina around the corner and it was so nice to enjoy the music bilaterally! I didn't hear all the words but I heard the words on the songs I was most familiar with.

During the weekend, I found one situation where the body processor is safer than the ear level processor: Speeding across the lake in a boat with the wind streaming through your hair. I held on to the ear level processor for dear life. Finally deciding there wasn't enough to listen to during that activity to justify the worry, I pulled it off, slipped the battery out, put it all in my shorts pocket, stuck my face to the wind and enjoyed the ride. No more visions of my precious Harmony processor flying off my head, landing in the bay never to be seen again.

Today, I spent a couple of hours in the car and took the opportunity to listen to some CD’s that I’d had trouble hearing before being bilateral. Bread, James Taylor and Cat Stevens came alive in my car like never before! ( Well, it’s been at least 20 years since I heard them as well!) Bread was still a bit of a struggle. I’m sure they will all improve with time. That reminds me, I had a Rod Stewart CD that I couldn’t hear. I love the song Maggie May. I’m going to go hunt that one down to try it! Til next time…

Another day in the life of a Bilateral CI'er

2008-08-12T18:21:00.000-07:00

I had my first meeting at work (post CI bilateralism) and I didn’t use my FM. It was in a smaller room than usual with the usual 11 people attending. I did just fine. I even heard a lady at the end of the table whisper to the lady next to her “What’s Friday’s date?” as she took notes. At least I was sure I heard her when it happened. Now I’m wondering if I lip read it. I just take in all the clues there are and don’t always realize where the actual understanding comes from.

Ok, I admit I chickened out on using the phone at work today. I looked at it but I just couldn’t do it and it didn’t ring so I didn’t have to pick it up. As Scarlet would say “Tomorrow is another day!”

However, I just spoke to my mom on the phone here at home. It’s often very hard for me to understand my mom. I plugged my left side BWP in directly and held the handset to my right ear. It was much better. I’d hold the handset away from my right ear and it was hard to hear, put it back and the sound was just so much louder and fuller. Bravely unplugged the BWP, yikes didn’t sound like I was getting much out of the right side at all. No understanding of what she was saying. Quickly plugged the BWP back in and there was that rich full sound again. This is very odd and yet it seems to be what most people report when they have gotten two implants at different times.

I’ve been watching TV with the captions off. Not great results there. Oh, well, I’ll keep trying! Tomorrow marks a full week with the new CI!

PS. Check out the free classic audio books for listening practice - the link is on the right with the Rehab Links.

Weekend one after Activation, August 9-11, 2008

2008-08-11T20:17:00.000-07:00

My ear is quite sore, but I remember that from hearing aid days so I pretty much expected it. I know my ear will toughen up after a while. I don’t have any moleskin so I used a band-aid and cotton ball and stuck it right to my ear. It's helping.

It's easy to change the programs on the Harmony without taking the processor off my ear. I do use two hands, one to hold the processor steady, and the other to switch the program. If I forget which program it's on I just go back to the first one and count up to the number I want. Volume is what is harder to change. It's difficult to know how much you've turned it up or down. I find I have to take the processor off to be sure of where I am with the volume dial.

We had a houseful at the lake this weekend. My sister, her husband, two sons, daughter, Bill, me, our two boys and one of their friends spent the two days talking, eating and watching it rain! The boat was in the shop anyway – bummer - and it poured for two days straight. Lake Huron has been low for the last 10 years and it seemed like our dear God finally decided to fill it back up over the weekend! The sun would come out for maybe 5 minutes and then it would be raining buckets again, coming down so hard and fast that anyone to venture out was soaked to the skin in minutes.

I had a nice conversation with my niece. I talked to my son’s friend about his recent trip to Ecuador and had conversations with everyone there. I think the whole weekend was less stressful than usual for me because I was hearing so much more.

I got up this morning (Monday) and worked on rehabbing my ear for an hour or so, using a headset and the English site listed on my links section. I could hear some parts and other parts not so well. I’m using P today after switching back and forth all weekend.

Our cottage is part of a subdivision that is just around the corner from a marina. The rain finally stopped and our company all had gone home Sunday night. Bill and I went over to the marina on our bikes. We stopped to talk to some folks. Usually, I mostly tune out because I can never follow conversations outside with the wind howling like it was this morning. This time I listened to stories about boating, boats that almost sank and other mishaps. I laughed along with them. I even contributed to the conversation. I spoke instead of just nodding my head and smiling!

We also met up with the brother of one of our friends who was in town with his wife. We decided to ride our bikes around with them to show them the good places to ride since they’d be there for a few more days. I actually heard her talking with my new CI and I could not hear her with my old CI. As little as a week ago, I would have shied away from this bike ride because I would not have been able to hear. In fact, I almost avoided it today because I didn’t know the people we rode with very well. I couldn’t really see a way out that wouldn’t be rude though so I went. I’m so glad I did!

The best is yet to come! I had most everything packed up when Bill said he wanted to mow before we left. “Go for it” I said. Having some time to while away, I sat down at the computer. I found a site for internet radio called www.pandora.com and started listening to music. This site is neat because you are able to create your own radio stations. I picked The Beatles for one station and Carole King for the other. The site created two radio stations that had songs by these artists and some similar songs by other artists. The only problem was the windows and doors were open and the mower was so loud I was having trouble hearing. Then as I’ve been doing all weekend, testing what I’m hearing with each CI, I turned the older one off. The mower sound was gone and in its place was music. I could follow the lyrics of the songs I knew really well! I was thrilled! It still didn’t sound natural to me, but following the beat and understanding the lyrics at this point (5 days after activation!) has been very exciting! The new CI seems to filter out much more of the background noise than my older CI does.

Tonight, the hospital anesthesia department called me to ask me some questions about my surgical experience. I had volunteered to be part of a study on the day of my surgery. When I’m home, I use a patch cord to plug my BWP directly into the phone. This is how I took the call but I also placed the phone to my right ear so I could also hear using the T-mic. Sure seemed like using both ears really helped and I’d like to try this out at work. I will be going to work tomorrow for the first time with my new CI. Wish me luck in being brave and trying the phone with both ears. Generally, I avoid the phone like the plague at work.

I am so impressed with the technology of the Harmony! Each day and each new listening experience impresses me more. I'm very grateful to be bilateral!

Activation Day

2008-08-10T10:46:00.000-07:00

Activation Day, August 7, 2008:

The waiting was pure torture, but finally my right CI has been activated! I was practically dancing with anticipation all day Wednesday and Thursday morning. We were a whole hour early for my appointment! First we stopped in just to see if there was a cancellation: Both because I was so eager to get it going and also because we’ve had that happen before. But no cancellation occurred, so we went to a nearby mall to walk around and while away the last hour.

Programming the new Advanced Bionics Harmony and 90K is much easier and goes much faster than my older C1 CI. My audiologist had me turn the left platinum processor off for the mapping of the new Harmony on the right side. First we set loudness on 4 electrodes at a time, and then we went back through them individually to make sure they all sounded like they were at the same level of loudness. It was not extremely loud sounding but I was a bit reluctant to raise the loudness too much after not hearing in that ear for so long. Then the big moment came! She turned it on so I was hearing whatever was going on in the room. I couldn’t really hear speech very well but I could tell someone was talking.

My audiologist explained that she would just start me out on the Fidelity 120S. She didn’t think I’d be able to tell the difference between the S and P at that time. At my follow-up the next day we'd try the P option and compare the two. She did some very basic testing, covering her mouth and saying colors and then numbers. I got them all right except one number! I felt like it was probably 40% what I heard and 30% that I knew it had to be a color or number and 30% guess. When she asked me a question, I couldn't get that at all, but I was pretty sure what she was saying was more than one word and it was not a color. Everything sounded very computer like, high pitched and kind of squeaky. I knew that's normal at first so I wasn’t concerned. She gave me three maps of varying volume for the first day.

My audiologist explained that she started me out on the Fidelity 120S. She didn’t think I’d be able to tell the difference between the S and P at that time. At my follow-up the next day we'd try the P option and compare the two. She told me to go ahead and wear them both most of the time because our goal is to get them to feel normal together. But she also said it was ok to take the older one off if I wanted to just practice on the new one. We went over everything in the box and she explained the parts that were included and about the volume dial and program switch on the BTE processor. Then I was ready to go out in the real world and see how it sounded! First stop is to get an X-ray of my head which will show the exact position of both of my CI’s and the coils in my cochleae.

After my appointment, Bill and I checked into the hotel. We were staying overnight since I had a follow-up with my surgeon and another mapping appointment in the afternoon the next day. It was my son’s birthday and we needed to do some shopping so we went to Best Buy, Meijers and ate at Real Seafood again. (This could get to be a habit!). I switched up to program three, the loudest at some point during the shopping and eating, already adjusting and needing more volume. Then, after dinner, Bill said he wanted to go see “Dark Knight”. Gulp! After a moment’s hesitation, I said “Ok, I’m game”. I’m not afraid of a little sound right? Wow, that is one loud movie! I switched back down to program two for most of the movie, not so much because it was uncomfortable exactly, but I didn’t want to completely traumatize my ear and brain! I would not necessarily recommend going to a movie to someone who has just gotten their CI (s) turned on for the first time if it’s your first CI experience. Unless you are very adventuresome! Having one CI that I’ve been wearing for 10 years, I thought I could handle it and let’s face it, how much speech do you really need to hear in a batman movie?

Day two after activation, August 8, 2008:

I am wearing the body worn processor (BWP) on my left ear and the BTE on my right. It's not strange at all to have the BTE, because wore hearing aids for almost 20 years before getting a CI.

My follow-up with my surgeon is at 9:45, which gives us plenty of time to lounge and listen to TV in the morning. I put on my new Harmony and leave the platinum BWP off for awhile. I’m watching TV when a commercial comes on. The fellow has a mustache and beard and there is no captioning. I’m listening and not getting much, then all of a sudden I hear ‘Now that’s real insurance!’. I blink and sit up straight. Wow, I heard that! What a way to start the day!!

We head out to the hospital for my follow-up. Dr Telian looks in both ears and reviews the x-ray that I had done the day before. He tells me the older CI has not moved at all and they both are positioned perfectly. The good news just keeps coming and I’m all smiles! I promise to send him a Christmas card to let him know how I’m doing in a few months. There will be a follow-up appointment next August. That’s all there is to that. Bill and I are off for some more shopping and lunch before my mapping appointment at one pm.

The sounds coming from each ear are so different that it is a bit distracting at times. The left ear sounds so natural and why wouldn’t it after ten years? The new CI on my right still sounds like someone is playing a sound clip that has been altered to be much more high pitched and tinny sounding that the left. I keep turning the old one off just to see what I’m getting from the new one. I know this is not an instant process though! My hope is for small progress every day.

While driving around we try several CD’s. They don’t sound bad. I start realizing that I’m hearing things with the new CI that I don’t hear with the old. I can hear the guitars strumming with the new CI. I don’t hear that as a distinct sound with the old one. I’m so excited about what I’m hearing!

It’s time for my next mapping. My audiologist and I go through the process of setting volume levels. I’m braver today and ready for more volume. It doesn’t look like they are going up very much to me. After we have the levels set, my audiologist tells me we turned them way up, from 70 to 110 of whatever measure they use (I can’t remember what she called it). We tried the 120 S and it sounds good as far as volume. Then she switches me to P. That sounds very loud! The volume goes down a little. We chat a bit so I can see if I like P, then she switches me back to S. I can no longer hear the S map we just did! It’s very faint after listening to P. But I’m not sure at this point which one I like better. I’m sure I don’t need a T-coil setting yet and I'm also sure I want to use the T-mic. We decide to put on an S map and a P map both with 100% T-mic and on the third one I have a P map with 50/50 on the mics. This means that the top mic will pick up 50% and the t-mic will pick up 50%. We did this so that if the t-mic stops working it will revert to the top mic and I will still have sound. Not that we expect the t-mic to stop, she said they are very reliable now. So then I’m done and Bill & I are ready to head home. Bill and I go outside and get in the car. I realize it’s really loud and I have half a mind to run back in and get the volumes turned down. However, I know it’s going to be a whole week before I’m back so I decide to use the volume button to turn it down and see if I need the extra volume s the week goes on.

I keep it on P most of the day. On the way home I’m switching the old one off every so often to test myself. With only the Harmony going, I’m actually able to hear some of my CD’s enough to sing along! I’m so happy that I’m crying. I’m not a crier at all, but this is just too exciting! It is sometimes difficult to know which ear I’m actually hearing things out of. I think this is a good sign that they are already trying to working together. I continue to turn one or the other off periodically just to see which ear is actually giving me what sound. Sometimes I realize it’s actually coming from both but as different sounds. Soon I hope my brain will begin to recognize these as the same.

Less than 24 hours until Activation!

2008-08-06T13:54:00.001-07:00

I'm am super excited about my CI activation day tomorrow and getting my new Harmony! This week it has been hard to wait, but now it's getting very close to the BIG A DAY. Today I received a reminder call from the CI center. I didn't need that, no way I'll forget this appointment.

I found my journal from ten years ago. Comparing then and now will be interesting. I don't have to read it to remember that my initial activation with my first CI was not great as far as understanding what I was hearing. I had to work at it. I'm fully prepared to do the same this time around. At work employees in my department can now listen to music with ear buds. I plan to connect my new CI to music while at work and not connect the older CI. Doing so will allow me to exercise the new one on my right ear almost all day at work and still hear out of left CI. Might be distracting, but I'll give it a try.

The too salty, too sweet taste thing has gone away. It only lasted a week or so. Good thing because I lost 8 pounds the first week after surgery. That's not necessarily a bad thing, but it did leave me feeling pretty washed out.

There hasn't been much tinnitus but I do notice a high pitched sound now and then. I don't really have anything it reminds me of. Just ringing in the ear. I do sometimes notice a faint thunder or drumming but it's not loud. Makes me curious about what is going on in there rather than annoyed. Mostly both my ears are pretty quiet.

I'm peeking in my journal and four days after I was activated ten years ago I wrote:

"Hey, I can pick out some words on Kenny Rogers' greatest hits without any printed words to follow along with! The Gambler & Lucille are the best! Thank you Kenny!"

We thought this was funny back then because I wasn't a really big fan of country music, although I did like this particular CD. I remember it when everywhere with me. I do believe I will take this CD with me tomorrow! I'll post soon about my activation very soon!

Surgery Day!

2008-08-05T18:08:00.000-07:00

Day before surgery: Tuesday, July 8, 2008

I scheduled my pre-op appointment for the day before surgery since my implant center is one and a half to two hours away depending on traffic. We were hoping for an early morning surgery so we didn’t want to get up before the crack of dawn to drive down so we stayed the night in Ann Arbor.

At my pre-op appointment, I saw a physician’s assistant, a nurse and my surgeon, Dr Telian. They each asked various questions of me and answered questions that I had. My blood pressure, pulse and weight were checked. I had some blood drawn for tests. I received the news that I would be the first CI surgery of the day! I was to report to the hospital at 6 am with surgery to start at 7:30 am. I could eat up until 12 midnight, only water after midnight and nothing after 4 am. That wasn’t hard at all. Once I received instructions for surgery the next day, my husband, Bill, and I were free to explore the Ann Arbor area. Bill treated me to ‘Real Seafood’ and then we explored a bit before heading back to the hotel to use the pool and try to relax. Relax, right! Didn’t really happen! I didn’t sleep very well either.

Surgery Day: Wednesday, July 9, 2008

5 am – Per instructions I showered at the hotel using antibiotic soap. Dressed in loose clothing, making sure my top was button down so I could not be trying to pull something over my head after surgery. Worst part of this was no morning coffee!

5:45-7:30 am – Bill and I reported to the hospital about 5:45. Yes I was eager! I pretended to watch TV while waiting for them to call me. After a short wait, my name was called. Bill & I proceeded to the pre-op area. Here I was asked to put on a hospital gown and given some nice fuzzy socks to put on.

I must have had a ‘visitor’ every five or ten minutes! The pre-op nurse put my IV in. The anesthesia team of three each stopped by at least once to introduce themselves and ask me a few questions. My surgical nurse stopped by to introduce herself and to tell me that she would be with me through the whole thing. She advised me to think of something happy when they started to put me under so that I would think of this happy thing all through the surgery. She told me my current CI would stay on until I was asleep, then she would take it off and put it into the bag that had my clothes which was under the bed. After surgery, she would put it back on, slipping it under the pressure bandage, and turn it on for me. I would not need to be without my CI at all. Awesome! She also explained that she wanted me to say my name and what I was having done and that they would also ask me to do this once I was in the operating room and just before surgery started.

I had a visit from another young lady asking me if I’d like to participate in a study of a new anesthesia monitor that would be used in addition to what they were currently using. I agreed to participate so she stuck some funny looking monitor things to my forehead. The pre-op nurse was in and out taking my blood pressure, pulse, and generally getting me ready.

My surgeon, Dr Telian, stopped by to say hi and to answer any questions I might have before the surgery. He explained that they would mark my right ear just to reassure everyone and me that the correct ear was being worked on. It was really nice to meet all the people who would be there at the surgery doing various jobs. Very reassuring! Bill stayed with me throughout this time.

7:30-8:30 am - Promptly at 7:30, the team came to take me to the operating room (OR). Bill gave me a good luck kiss and left for the waiting room. Once in the OR, I was asked to slide over to the operating table which I did without incident. Sorry, no funny thoughts about the table and whether I could make the slide without incident. I just did what I was told. I’m sure I looked terrified. Considering that the only time I have ever fainted is when I say my own blood running out of one of my fingers after a cut, you can imagine how I felt. Not that I wasn’t sure I wanted to do it or that I wasn’t confident in Dr Telian and the surgical team. I was sure!

They began positioning me, padding my left arm which I’d be lying on while they operated on my right ear. The oxygen mask was put over my face and I started trying to think of sitting out on the bay with the water stretched almost as far as you can see and a warm breeze… I was out!

8:30-10:30 am – Surgery actually started at 8:30 and was finished up at 10:30. Dr Telian talked with Bill after and let him know that everything went really well with implanting the Advanced Bionics HiRes 90K cochlear implant.

10:30 am - ?? – I have no idea what time I woke up! I have this feeling it was after noon but I don’t really remember now. What I do remember is that I was in this beautiful meadow and didn’t want to leave but someone (the post-op nurse) was saying ‘Janet’, ‘Janet’… So I opened my eyes. Back to reality, I was in a hospital bed and my head really hurt, except it’s not my ear, it’s my forehead! The pressure bandage has a knot in it and that is what hurt. I told the nurse that it hurt and she pushed it up a bit. Then everyone that walked by gets shown my red bump from the pressure bandage. I noticed my ear was roaring and it lasted for about 5-10 minutes then quieted down. I did wonder who was whispering in my ear about a meadow when I was trying to think about the bay. LOL

I was offered a beverage. Only a soda, no wine, yet! So I sipped a Sprite and boy did that taste sweet and so very good. I was offered crackers so I nibbled one but it was very hard to get it down because my throat was so dry and sore feeling from the tubes. Then I had a sudden feeling that it was coming up! The nurse jumped and got me the barf bucket in time. She gave me something in my IV for nausea. After a while, I was moved to another post-op area and had a different nurse – who actually was my pre-op nurse too. This is unusual to have the same nurse both pre and post op. It was at this point that Bill joined me again.

1:30? –3:30 pm – Bill explained that Dr Telian could not wait for me to wake up because he had to be over at the new surgery center to do the next two CI’s of the day. The nurse continues to be in and out checking on me. I received the post op instructions. Bill got the honor of taking the pressure bandage off after 24 hours which will be just before we leave the hotel the next day. I can’t shower or bathe for 24 hours. After 24 hours I was to still keep the incision dry by holding plastic over it when I wash my hair. Bill goes to get my prescriptions filled. There are two prescriptions, one for pain medication and one for an antibiotic.

The nurse offered me a wheel chair to go to the bathroom, but since I know I am going home, I wanted to walk so I’d know if I was going to be dizzy. The nurse assisted me in getting up and walking to the bathroom, still with my IV pole. I did fine on that little. I was asked if I’m ready to go and I’m sure they wanted me out sooner than I actually left. I was told by the nurse at my pre-op appointment the day before to make sure I was ready before I left. I took her advice and stayed until I was sure I felt ok. My IV was removed just before I left. I took a pain pill to ward of any possible pain on the trip back to the hotel. Bill and the nurse helped me into a wheelchair. Bill took me up to the car which was parked in the parking ramp and we’re on our way!

3:30 – 9:30 pm – I tried to eat a bit of chicken soup, crackers and applesauce when we got back to the hotel. I started vomiting though and couldn’t keep anything down. A pain pill every four hours but every time I took one, I vomited shortly after and it was getting worse over time. Bill called the clinic to get a prescription for anti-nausea medicine, and then went out to a nearby pharmacy to pick it up. While he was gone, I huddled on a towel on the hotel bathroom floor thinking it was probably one of the worst places to be right after surgery (germ wise). Thank goodness I would be taking an antibiotic! Once Bill returned, I took one anti-nausea tablet and within minutes my stomach was settled (magic stuff!) and I was able to take my antibiotic. It stayed down. I tried to eat a little more. Everything tasted too salty or too sweet though so I didn’t eat very much. This time I had no metalic taste and no numbness in my tongue, just everything tasted over-seasoned. I propped myself up with pillows and did a pretty good job of sleeping that night. I’m sure the pain medication helped!

Day after Surgery: Thursday, July 10th
When I woke up I felt pretty good. Bill went down to the hotel breakfast bar for coffee. I felt good enough that I switched to extra-strength Tylenol and eliminated the anti-nausea medicine. Bill took a picture of my bandaged head and wild hair with my phone because I forgot the camera. I didn’t bother looking too close at the picture to see how it turned out because the pressure bandage simply had to come off. It was really hurting my forehead where the knot was. I kept trying to move it around but by that time it hurt no matter where it was. Bill cut the bandage off and, whew, what a relief that was! He declared that the incision looked good.

We hung around until it was time to check out and then I took some more extra strength Tylenol just before leaving. I used a neck pillow to help on the ride home so my head would be supported a little bit more. It was an uneventful drive home. I was feeling very alert on the ride home. When we got home I felt strangely energetic and yet sort of shaky from the surgery. I’m sure this was in part because the anesthesia had not worn off completely. I took it easy the rest of the day.

Day two after surgery: Friday, July 11th

At about midnight I woke up with a horrible migraine-like headache (the hang over? LOL). I took more extra strength Tylenol, but the headache kept getting worse. By the time Bill got up at 8 am I was in a lot of pain. He called the clinic and the nurse directed me to take two pain pills, which I took with one of the anti-nausea pills. I went back to bed with the room darkened. I spent the entire day taking a pain pill every 4 hours and an anti-nausea pill every 6 hours. By 6 pm I was beginning to feel better and was moving around a little bit. By the next day I was no longer taking any pain medication.

After that, every day, I felt a little stronger. My stitches came out on Thursday morning a week after surgery. I went back to work on that same Thursday, but it really was too soon. I only worked 4 hours on Thursday and 4 hours on Friday. Monday was a day off, so by the time I went back on the next Tuesday, July 22, I felt good. If I ever do this again, I will plan on taking two weeks off.

Less than 48 hours to hook up on August 7th! I'm looking forward to getting started on rehabing my ear and being bilaterally bionic!

Surgery for my second CI

2008-07-29T17:43:00.000-07:00

Hey, I'm bilateral! I'm so excited and am eagerly waiting for the activation of the second CI on my right ear. August 7th is the big day! The bandage picture is not very good. I forgot to take the camera so we used my phone and mistakenly had the setting on small so it's hard to see. I admit the picture wasn't the most important thing to me just then. It was taken right before Bill removed the pressure bandage (after 24 hours) and I didn't want to delay that at all!

The incision picture is about 3 days after my surgery, which was on July 9th. It really doesn't look that bad if you don't think about what they do inside there that doesn't show! It's been three weeks and it's all healed up now. I'll write more about my surgery and the events leading up to it soon. In the coming posts I'm going to compare my experiences with surgery and activation to what I experienced 10 years ago when I had my left ear done. I kept a journal during that time so it will be interesting to get it out and see what I wrote. (I just have to find it! LOL)