24 June 2009

Hello! My name is Kate, I am an Online Content Manager, and I live in Sydney, Australia.

I’ve had a progressive hearing loss since the age of 11, and am now profoundly deaf – I am 29 now, in 2009. No one knows what caused my hearing loss, which is annoying, but hey, what can you do but live with it!

Ben and I met when we were 21, and have been together for about 6 years now!

Ben and I met when we were 21, and have been together for about 6 years now!

I live with my partner Ben (who has normal hearing), we’ve been together a while, and bought an apartment together 2 years ago. He and I have some interesting methods of communication!

I have only just started to learn sign language (I am pretty bad at it! Keep signing things like “I would like to eat your trousers”, and other random stuff) and I wear hearing aids. I can hear environmental sounds and music, but voices are really muffled, so I mainly lip-read.

I don’t use a phone, can’t hear alarms very well, and there is no way I can hear people in the dark – because I can’t see their lips! You could argue I would be one of the worst people to be trapped with in a burning building in the dark, haha! Ok, hopefully that won’t ever happen!

So, I was finally assessed as being “finally deaf enough for Cochlear Implant” in May this year, and I have the operation in just 5 days. Oh boy.

I realise the roller-coaster ride I am in for, so that is why I have started this blog – as it will be a way of keeping a record of what happens to me, and what the experience is like. And really – a way of getting into perspective what could be the biggest decision of my life.

I am a bit anxious, but I figure that a positive mind-frame will be my most important tool in getting the most out of this … so, lots of self talk (“That’s it Kate! You can do it! Save the people from the burning building by sending a frantic message to the fire department with your mental powers only”)

I've known most of my closest friends for about 10-14 years, from school and uni.

I've known most of my closest friends for about 10-14 years, from school and uni.

Luckily, I have a great group of friends that I know will support me in my decision to throw myself at the mercy of a bionic ear. Many of my friends have known me through my various stages of deafness – so from mildly hard of hearing, to really bloody deaf!
But they have always been good to me – in fact, I often tell them that they make me ‘forget I am deaf’, because they all make an effort to include me in conversations, and don’t get pissed off if I say “What did you say? Pardon” for the tenth time.

Everyone is very excited about the impending operation and switch-on, but my big fear is that it won’t work very well, and people will be disappointed. In some ways I think that the disappointment of people around me would be worse than my own – because I have researched quite deeply into this subject, and I know the reality.

It is different for everyone, and for some, it just isn’t the ‘miracle’ that it’s made out to be. So this is why this blog is also to educate my friends and family about what it is really like.

If you are interested, have a look at a ‘vague reproduction’ of what my hearing loss looks like (not very accurate! my audiologist would probably cringe, but hey, it’s just to give you an idea of where I am at):
My hearing loss started in the mild to moderate level, and then deteriorated over 18 years to where it is today! At rock bottom (almost).

My hearing loss started in the mild to moderate level, and then deteriorated over 18 years to where it is today! At rock bottom (almost).

I am getting a Cochlear Freedom Implant (well – I think I am! I had to order it, but in my blind moment of sheer amazement that I was actually getting it – I forgot to note which one it was – I know it’s Cochlear Ltd brand, and thats enough for me) and am getting it in my right ear. This has been my ‘bad ear’ for a while, and mostly they advise you getting your bad ear done, just in case it doesn’t work (geez, that’s great for the confidence, huh?).

If you are interested in what a cochlear implant is, and how it works, check out the links below:

So there you go – and if you don’t think it’s all a bit nerve-wracking by now, then you obviously haven’t read those links!

But seriously, everyone’s experience is different, which is why you have to research a lot, and why it is such a leap of faith.

Because no one really knows how it is going to turn out for you! but having said that – I really believe that you have to go into it with a certain element of positivity. Because I think it is also the drive that you have to make it work, that will make all the difference.

Well. We will see if I am right! Only 5 days to go until the implant operation, and then the switch-on is scheduled for Wednesday 22nd July.

Wish me luck!

65 Responses to “About me”

  1. Laura Says:

    Hey Kate,
    That cleared a lot up. I had no idea you had any hearing loss and was more than a little surprised by your announcement. I hope everything goes to plan. And I’m sure you will love Ben’s voice, no matter what new timbre it may ring.
    Best of luck for today!
    x Laura.

  2. Amanda Picton Says:

    Hi Kate,
    Thankyou, thankyou, thankyou!!
    What a brilliant idea, sharing your journey with everyone. You are such a fantastic writer and I really enjoyed reading about the whole process. I’m so excited for you with switch on happening soon.

    My nephew had switch on for his second implant about 3 weeks ago. He is blowing everyone away with his progress. He can already sometimes understand instructions like “clap your hands” or “get your nose” with only his new implant processor on (and yes – we have to hide our lips so he can’t cheat!)

    You have just made my day by writing all of this down. My whole family will be so interested to read your story (and updates) as we can’t really get too much sense out of our little 2 year old.

    Have a great day, Manda

    1. Kate Says:

      oh wow, Manda! that is such great news about your nephew! am so glad I can help in that small way. I wonder if I’ll do as well as him when I get switched on? hope so. I’ll keep you and your big sis updated!

      lots of love to you and your family.
      xx kate

      1. Rachelle Cove Says:

        Hi Kate, your blog is new to me as I have a daughter (3 year old Eden) who is just about to travel the journey from hearing aids to cochlears and it’s fantastic to get some insight into others experiences. I can’t wait to see how your switch on goes and would love to further chat with you about how it sounds.
        All the very best, we are thinking of you,Rachelle

  3. Kate Loouw Says:

    Hello Kate,
    I work with Christian Boucher and he gave me your blog address.

    I’m going through the same hearing loss scenario but I’m a wee bit behind you. I had a hearing test at 18 and they picked up I was a bit ‘hard’ of hearing but nothing to worry about. So I didn’t; but two years ago I had a full medical for work and this is when they discovered my hearing to be as bad “as a 60yr old truck driver” (I was only 30yrs old at the time). The nurses idea not mine.

    I’ve been assessed by a specialist and he can’t figure out why I’m going deaf. Just yesterday I had another test and have dropped 20-25 points in a year. So I will no doubt be properly deaf in a few years. My options at the moment are hearing aids but I can’t afford them. I may take up your suggestion of going to London and getting them on the NHS as I’m a British Citizen and have only been living in NZ permanently for the past two years.

    Your writing is inspiring and you’ve given me hope – so thank you.

    Kind regards,
    Kate

  4. Dave Walker Says:

    Hi Kate,
    Thanks for the follow on Twitter. I am glad to see that you are sharing your cochlear experience with the world through your blog. I just did a presentation today as a Cochlear Awareness Volunteer at Pacific University in Hillsboro, Oregon to a group of students in the School of Occupational Therapy. I have been doing volunteer presentations for about 4 years now and enjoy increasing cochlear awareness.
    Looking forward to following your blog and on Twitter.
    Dave Walker
    Tillamook, Oregon

  5. Jessica Says:

    Hi Kate,

    I am a friend of Woodsy’s from London and met you briefly when we were all a little worse for wear at your flat in Neutral Bay after a large new years eve (you guys were at luna park and I had been at a lame party as I was not allowed in crowds due to recent operation on my nose).

    Anyway, I just wanted to say that your blog is amazing! Apart from the content which absolutely blows my mind, you are a great writer.

    I hope you are enjoying the new world of sounds in which you find yourself!

    Jess

  6. helen wilson Says:

    Hi Kate,

    Thank you so much for sharing your experience, totally fascinating to me! My 9 y.o. daughter has two Cochlear Implants.The first when she was 18mths old and the second Dec 07. Rosa is now and in Grade 3 at our local school. Very best of luck and thinking of you. We will follow your story with great interest.

    Helen and Rosa

  7. Don Rose Says:

    Hi,

    My wife Alison started losing her hearing a little over a decade ago. She was watching TV with the sound at nuclear level and we could watch her reading our lips although she denied doing so.

    She just finished the extensive tests and has failed miserably which is what she wanted because it means she can have an implant. YAY!

    Mainly it has affected her social life and we are both looking forward to her being able to get social again with me.

    The op is in early September.

    I am really happy for you that your implant has gone so well.

    Don

  8. cindydyer Says:

    Good luck, Kate! I’ll follow your blog and read about your journey! I design and produce the Hearing Loss Magazine for the Hearing Loss Association of America. Check out their website at http://www.hearingloss.org. I met so many people with cochlear implants at the Nashville convention last month. Wonderful group of people—glad to know you have such a great support group!

    Cindy
    http://www.cindydyer.wordpress.com

  9. diny bentley Says:

    HI Kate I am Diny and I have a history of deafness just like you. Mum thinks I could hear normal as a child, but I m not sure. I am sure I had hearing loss in my high school years and when I went for a test for the first time, the audiometrist could not believe I was that deaf and just being diagnosed. There is a strong family history of deafness, but us kids wanted to belike every other kids on the block and who as a teenager wants to wear hearing aids. At 17 I purchased my first aids.
    I had many sets of hearing aids through my years, no major holidays over seas as my aids always need replacing.
    i HAVE HAD my cochlears of 6 years now and I love them. I had my Rt then 18 months later my lt. turn on was amazing, Ihad no mirical hearing I learnt to use the phone when I was using the TTY and I could hear the relay person typing and eventually the other person on the phone.Its great stuff, don’t be scsred enjoy all these new exciting sounds you will love every day.
    I certainly could understand with hearing in the dark, I am a nurse and use to shine the light in everyones face to listen to them. Life goes on, I am sure i am a richer person with the lifes experience I have had being a deaf person then with the help of the cochlear I am functioning amazingly in a hearing world
    take care all the best
    Diny

  10. Chris Radford Says:

    Hi Kate,

    I stumbled across this blog while looking for some xray images of cochlear implants. I have some simulations of music through a cochlear implant and through a cochlear implant and a hearing aid, that might be useful demonstrations for people who are close to you. I’m not super keen on putting them out for general consumption, as I’d hate for parents to be against implanting their children after hearing the robotic nature of the signal, but if you’re interested let me know. I’m interested in feedback from current CI users at the moment.
    Warm regards,

    Chris

    1. sue Says:

      Hi,
      I was glad to see someone mentioned the on-going ‘music’ issue. I have bilateral CI (2004 and 2006). I ‘lived’ music in the 70-80s so after 20 years absence what music I hear; I fully appreciate.
      I feel, I DO hear music rather clearly, unlike the demo I have heard which may also be the same as you mentioned.
      The advantage (or disadvantage to some!), is the lyrics are now clear…afterall it is a ‘speech processor’ not a music processor!
      I can easily hear the bass/beat/rhythm, to the extent that I now can successfully dance to rock and roll and salsa music…generally its the guys that have a problem dancing hearing and dancing in time to the beat, not me!!

  11. Alok Says:

    Hi Kate,

    I am Alok & live in India, I too have a profound hearing loss almost the same as you have, I am now planning to go for C.I., thank you very much for this blog it is truly very informative & encouraging, I was very apprehensive about the performance of the C.I. but your postings regarding improvement over time give me confidence, the only problem is the cost, I have been unemployed since last ten years due to this hearing loss, though had a progressively responsible excellent career record in Sales & Marketing prior to the hearing loss. Hope my efforts for funding will bear fruit & I will be able to get a implant & be hearing again.

    1. Kate Says:

      Alok – good luck with your effort to get an implant – the cost is very prohibitive, but luckily in Australia the government supports a number of adults to be implanted each year.

      If we didnt have that government support, then many more people would also not have been able to get one.

      So, I hope it all works out for you!
      Kate

  12. John Couani Says:

    Hi Kate
    Monica sent me your blog address. I’m glad you’re having such a positive time!
    I’ve had my implant for almost a year now and would be totally lost without it – I’m 100% deaf, due to cancer treatment. Number 2 coming up in January.

    I have subscribed to your blog – have a look at mine. If you like I can link to yours and feel free to link to mine if you think thats a good thing.

    Also – do you think you need lip-reading classes? Better Hearing Australia runs classes [which I attend at Concord] and they are a hoot, and good practice for lip-reading!

    Good Luck
    JC

    1. Kate Says:

      Hi John!

      I attended lip-reading classes way back in 2001, when I was 21 years old, at Better Hearing. Indeed, I was the youngest person in the room, HAHA! So I am quite a good lip-reader now, being only 8 weeks into a cochlear implant.

      I had a look at your blog, and it is fantastic! Will definitely link to it. You really have overcome such obstacles, and I am glad that you beat the cancer. How difficult it must have been for you to lose your hearing along side trying to deal with a serious illness. Deafness on its own is pretty difficult.

      Good luck with your new cochlear implant, and I look forward to reading all about it.
      Kate

  13. mel Says:

    thanks for putting your submission to the senate i wanted to try and do some things about the prices of heairng aids now that the vertically intedgrate companies are dominating the industry can you contact me via email and i will let you knwo more if you are interested to come on board you might have the right skills/contacts to help
    m

  14. AiKeng Ong Says:

    Hi Kate,

    Simone introduced Alan and I to you at the CCHIC dinner. I just want to say it has been an honour to meet you in person.

    Cayden finally had his bilateral operation last Thursday 15 Oct. The 5.5 hours wait for him to come out of the operating theatre seemed like forever. We’re so happy it’s finally over and we’re now looking forward to switch on…2 Nov!

    Thank you for putting this blog together. It tells me what to expect for Cayden.

    AiKeng

    1. Kate Says:

      oh wow!! I am so pleased it all went well! Congratulations, and I am sure that Cayden will do great.

      Very exciting news, and thanks for letting me know.

      Cheers,
      kate

  15. gianna Says:

    Hi Kate,
    I have read part of your blog from Sound News – spring 09. Wow! WOW!
    You are so good at describing the events you’ve experienced and the items in your blog are very interesting!
    Congratulations on your success- you are inspiring! keep going kate – the blog is an excellent tool for many to read and experience as often the issues of hearing loss are ‘lost’ with words from a hearing person.
    Your words are so much clearer!!
    gianna

  16. ruth kershaw Says:

    I am glad you are purporting success with the device, and are such an active advocate. Indeed your story is miraculous compared to the ones I have come across (nubmness, tinitus, excrutiating pain from hair, white noise)
    So I am wandering if you are another version of the the ‘cochlear volunteers’ distributing erroneous information for a kickback your readers are not informed of.
    I guess if you publish this and an accurate answer, I need not be suspicious and outraged by the ‘social networking’ propoganda cochlear will go to to maximise their profits.
    Ruth

    1. Kate Says:

      That is a very valid point Ruth! I am very aware that I am a bit out of the ordinary with my cochlear implant. I was so nervous before-hand, never thought it would be this good. Which is why it took me 10 years to get it..

      So, I guess… not sure what else to say but … you can rest assured that Cochlear have nothing to do with me, except having supplied the thingie that sits in my head. I aint paid if thats what you mean! And they dont ask me to write anything like this.

      I started this blog to make sure my family and friends knew what I was going through when I got the implant. But it turned out much better that I had expected it.

      Hope that answers your question.

      Probably one bad thing about the implant is that it is hard to get used to the lump under your skin on your head. And the fact that it’s a crappy outer design – it gets caught on things all the time. You’d think they could make it smaller after all these years.. They’re my main gripes.

      Cheers,
      kate

  17. Edwina Says:

    Hi Kate,
    I have just found your blog after hearing you speak at the Human Rights Awards on Thursday. I knew very little about cochlear implants and have learnt a lot from your posts.
    Congratulations on your well-deserved award!
    Edwina

  18. Louise Griffiths Says:

    Hi Kate!

    I love your blog! I am Mum to one (possibly 2 – baby due in 2 months) deaf children. My 2 year old son has bilateral implants and is doing really well – but it is hard to understand the qwerks of implants when your son can’t articulate exactly what is going on!
    All the best as you continue as an ambassador for deaf and hearing impaired people!

    Louise

  19. Shae Says:

    Hey Katie,
    I’m 18 years old and have gone through what you’re going through. but i lost my hearing at the age of 7. it wasn’t like BAM im deaf but it progressed. my right ear is also my “bad” ear. i just recently decided to get the implant. i will probably have the surgery this summer. we will see how it works. Ive been told im a great lip reader. i should be since Ive been deaf for 11 years haha. but my environment is the same. my friends make me forget im deaf also. its nice to be included and not judged. course i have never been judged, just questioned haha. i would love to talk to you about the implant if thats alright. i may have decided to do it but im still worried about it. it will be my first major and first surgery ever. thanks for posting your experience.

  20. Dan Schwartz Says:

    Hi Kate!

    I’ve been following your blog since you posted this first entry last June; and it was interesting to go back and re-read it, comparing your pre-implant expectations vs the reality of the miracle that actually occured. And, as I said previously, the very good results you are having is not the exception to what most post-lingually deafened people get — It’s typical!

    ————

    If you scroll up to comment #8, you’ll see it’s by my friend Cindy Dyer from DC. The Nashville HLAA convention she was writing about had about 1150 people, of which about 200 had CI’s. I was there on a “CI shopping trip” to decide on which of the three CI manufacturers I would choose (I decided about 95% chance on AB with the Helix perimodional electrode array); but also to meet, talk to, and observe how well these people did, especially in noise.

    It also ended up as the tipping point, as the noisier it got in the Expo hall & (especially) banquet, the greater the difference in performance was between those of us with hearing aids vs CI’s. It was doubly stunning, because I was at one time a hearing aid dispensing engineer. It’s one thing when you meet a couple people who have CI’s that are doing well; but it’s a whole new ballgame when you meet and talk to many dozens, and the results are pretty uniformly spectacular.

    Kate: Cindy Dyer would like to do a profile of you for an upcoming edition of Hearing Loss Magazine. Your story is compelling, and I hope you accept her offer~

  21. Acmejc Says:

    Hi Kate
    We have set up a blog at Better Hearing Australia and I’ve linked to your blog. Have a look!

    Keep up the terrific postings of your story!

    JC

  22. Edwin Montoya Zorrilla Says:

    Hey Kate,

    I am Edwin from the United Nations Youth Association of Australia. We are hosting our inaugural National Youth Summit in Sydney this year. We are aware of the merit of your work as has been recognized by HREOC and are interested in having you as a guest speaker. Please reply to me with your email so I can give you more information.
    Yours Truly,

    Edwin Montoya Zorrilla


  23. Dear Kate,

    You are an inspiration to young people all over the world. i read your stories and was doing a HSC design and technology report on the Cochlear implant. I have included your story because it is truly motivational. I do not have hearing loss my self but i now see how most ppl take there hear for vantage. so ill be turning my music down from now on 😉

    Yours in christ

    Naphtali Abraham
    president of awesomeville

  24. Paul smart Says:

    Hi Kate
    My mum has had a cochlear implant done in nz through a grant and now has amazing hearing and has transformed her life, her brother has large hearing loss and doesn’t quite fit the criteria for nz, is it possible to grab your email and ask a couple of quick questions about geting a cochlear implant done in Australia, my email is Pauls05@gmail.com
    if you could help it would be amazing, your blogs great
    -Paul

    1. Dan Schwartz Says:

      By The Way, in addition to my comments below, the San Francisco Chronicle had this great article on “medical tourism” with plenty of links last December.

      Worth noting for CI patients is that one of the surgeons at the Surgical Center of Oklahoma (in Oklahoma City) is Dr Stanley Baker, one of the top CI surgeons in America, with many hundreds of implants under his belt, including tricky “revision” surgery to replace a bad device. Also, he comes highly rated from CI manufacturer insiders.

      [In fact, because of Dr Baker’s reputation, I’ve decided to use him when I go to get my CI, even if I have insurance coverage at the time.]

      Dan Schwartz
      Dan@Snip.Net
      Cherry Hill, New Jersey, US of A

    2. Kate Says:

      Hi Paul,

      I’ll try to help as best I can – what I know is this:

      * In Australia a cochlear implant costs about $30,000 Australian Dollars.
      * There is a waiting list to get one through the public health system, which can mean waiting up to 1-3 years for an implant
      * If you have private health insurance, you can get one within a few months, and be covered for a certain amount of it (I was covered for all of it, except $250).
      * if you dont have private health insurance, I think you could probably get one through a private provider, but you would be out of pocket AUD$30,000, which is a lot of money.
      * most Private health insurance funds have a waiting period of a few years, so even if your Uncle moved over here, he might have to wait 12-24 months before being eligible to claim for the cochlear implants.
      * Also, there are some guidelines as to how deaf you have to be in Australia before you qualify for a Cochlear Implant – I was told for 10 years that my hearing was too good, and it was only early last year that I was finally told I could get one.

      I think the best bet would be to contact the Sydney Cochlear Implant Centre.

      i would give them a call or email and ask them their advice for your Uncle. I am sure they will be able to help.

      Their details are below – I hope that helps! Any other questions, please let me know.

      ———————————————————————–
      SCIC operates Monday to Friday 8:30 am – 5:00 pm.
      SCIC Email: scicadmin@scic.nsw.gov.au
      Website: http://www.scic.nsw.gov.au
      SCIC – Gladesville
      Telephone:61 2 9844 6800
      Facsimile: 61 2 9844 6811
      ———————————————————————–

  25. Dan Schwartz Says:

    Hi Paul!

    Your Mum is damned lucky to get a CI in New Zealand, because they ration them to just 20 per year for adults, for their 4.3 million residents. I’ll wager your brother probably also would qualify; but because the rationing is so bad, the bar is set sky-high to wipe out as many candidates as possible.

    Worse, CI services in NZ are rather poor: University of Auckland shouldn’t even be attempting it. So, you’re quite right in sending your brother offshore to get his CI’s.

    If you go to Australia, it’s a “one CI shop” and you can have any brand you like, as long as it’s Cochlear. I’ve been hearing rumors that Advanced Bionics has been making inroads into the Aussie market; but as of March, the closest AB CI center is in Singapore.

    There’s nothing inherently wrong with the new Nucleus 5 (except no FM); and as you can see here with Kate as well as with your sister, your brother will do reasonably well with one… As long as there’s not much background noise; and as long as music is not important.

    If you want to see a comparison of the brands by a user in London, check out Tina Lannin’s blog on the subject.

    ——————

    Key to success with a CI lies in the auditory rehabilitation: It takes LOTS of work, even if your brother is recently deafened. The success story you’re reading about here on Kate’s blog is pretty much typical; but her rehab would have been faster and better had she gotten her CI years earlier, when SCIC said she wasn’t “deaf enough.”

    More in next reply

  26. Donelda Campbell Says:

    Hi Kate,

    Carol from SCIC put me onto your blog and I LOVED IT! I am scheduled for my first implant in October 2010 with Prof da Cruz and have a virtually identical loss to yours – also unexplained. I can fully identify with the yoga class and the burning building in the dark. Your blog made me laugh and cry. Well written and thanks!

  27. Torie Says:

    Hey Kate!

    I stumbled across your blog, while trying to find out more information on the Cochlear Implant surgery; I guess I just haven’t allowed everything to sink in and I always try to find out more about the surgery. I can relate so very well to your story…

    I’m 27 and I lost my hearing at around the age of 16…I would say it was more gradual, than anything…By the time, I was a freshman in College, I was wearing hearing aids…As I got older my hearing drastically declined…

    I had been referred to go see a physician specializing in doing the Cochlear Implant surgery, but I put it off for years…Two babies later, I finally said to my husband and my family, I needed to go through with this next step because I was no longer benefiting from wearing hearing aids…

    I could not hear my infant or toddler crying if I was so many feet away, even with hearing aids on…Someone could be in our home, I would not know they were even in the next room, because I wouldn’t be able to hear them…

    It’s scary place to be in emotionally; to literally want to hear and not be able to…At the same time, I’m excited that will soon change…I’m totally looking forward to having surgery; but it doesn’t mean I’m not afraid; terrifed is more the word I want to use…Lol

    Thank you Kate for being an inspiration. 🙂

    Sincerly,
    Torie

  28. N. W. Holston Says:

    Hi, Kate. I had cochlear implant surgery two months ago and my ability to taste food normally is still diminished. Did your taste ever fully return?

    1. Kate Says:

      Hi, yep, my taste buds returned to normal several months later – I can taste everything normally again. YAY!

  29. Jana Says:

    Hello Kate,

    I didn’t get to read everything you’ve written here, but it’s nice that you wanted to share your experience with the world. I’ve also been a user of cochlear hearing aids since I was 7 (I am 24 now) and it couldn’t be more convenient and a natural part of my life. I’m not even sure if you will read this, but nevertheless, have a nice life, I hope that your implants will do for you, what they’ve been doing for me for the past 17 years 🙂

    Regards

    1. Kate Says:

      Hi Jana, Thanks for your comment, i Love hearing about other people’s experiences. I do still read the comments on my blog, even though I dont still write any posts. The cochlear implant is still amazing for me right now and I am using the phone easily again. Yay!

      Good luck with your future – 24 is a great age to be!

      1. Kathleen Mason Says:

        Kate it’s now 2017, how is it all coming along? Implants still
        working properly? Any changes made? I appreciate your
        blog.
        Thank you, Kathleen in Oregon

        1. Kate Says:

          Hi Kathleen! I have decided to get a 2nd cochlear implant – I was implanted just 2 months ago. It’s amazing! You can read about my journey at: https://cochlear-stories.cochlear.com/

  30. Julia Gilchrist Says:

    Hey Kate,
    Its Julia Gilchrist here, how are you going?
    I just found your blog after wondering whether you decided to go ahead with your cochlear implant surgery or not…and obviously you have and this is a wonderful record! I hope our conversations were useful and I’m keen to find out what you’ve been up to since we last hung out!!
    BTW, this blog rocks 🙂
    Cheers,
    Julia


  31. c i should be made cheaper. It should not be used for making easy money as it is being used .I have been told by a prominent E.N.T. especialliest that the real cost of implant is not more then 25% of its market price. It is a boon for the deaf and c i should be taken as the service to humanity Balesh Jain
    Nihtaur distt. Bijnor,U.P., India
    .

  32. Rhys Says:

    Hi Kate,

    I have been working on a short film for tropfest which involved a deaf woman in the lead role. Your blog has been the source of so much inspiration, information and ideas and I must thank you for opening my eyes to the world of a deaf woman. I was hoping if you were ever free, that I could buy you a coffee and chat about life. I’m totally facinated.

    Drop me a line
    Rhys

  33. Rosie Choueka Says:

    Hi Kate
    My little boy (10 months old) is going to have bilateral implants next month. He was born profoundly deaf and though he gets something through his hearing aids, it’s not enough for proper communication.
    Your blog is amazing – honest and unbiased, and incredibly moving. Thanks for sharing your experiences, good and bad. It helps to realise what my son might go through as he learns to hear with his new tecchnology.
    Good luck in the future!
    Rosie (Mother to Joseph, London, UK)

  34. susan Says:

    hi from Canada I am profoundly hard of hearing. i just read your blog?sorry new to this.so glad that you have a sense of humor with this major life challenge. my challenge is living with my two adult children.the third one just arrived in Australia. I have had my hearing loss since I was 4 , now 54.yrs.
    I did have 15% in my right ear now its completely dead. I also wear a cross aid which does help, but it I still feel isolated. Thanks so much for sharing with the world. Take care
    Susan from Hamilton Canada

  35. Ashlie Says:

    Hi Kate,
    I just wanted to say thank you for deciding to put this blog together and deciding not to leave your poor Mum behind.
    People like you are inspirational and can make a difference in someones life.
    Like me in a way.
    I have a son who is only 2 months old. He was diagnosed severe to profound deaf at the age of two weeks.
    As a new Mum finding this out was the worst day of my life!
    I had no idea about any such thing as a cochlear implant.
    I have done some research and yet to do more but I think the path of a cochlear implant for my boy will give him the best chance at an amazing life.
    By reading your blog you have helped me, not to only feel happy and to be inspired, but to know my baby boy can have a great life and hear and speak.
    Do you ever do talks or anything like that in Sydney?
    I would love to hear your story first hand.
    Ashlie

    1. Dan Schwartz Says:

      Dear Ashlie,

      First off, don’t beat yourself up over your son’s deafness: There is NOTHING you have done wrong!. As it turns out, deafness can — And will — strike at random, from hidden recessive genes such as Connexin-26.

      The most important thing is that your son is otherwise healthy, as 40% of children born today have neurological issues, which complicate things drastically.

      Now, it is time to sit down, take a deep breath, and get your son implanted as soon as you can convince a good surgeon to perform the surgery, as every month you wait, the longer and harder the auditory-verbal therapy slog will become. In fact, if you’re lucky and happen to be in Sydney, SCIC — Where Kate was ‘planted — is an excellent facility that will implant as young as 3 months of age.

      Dan Schwartz,
      Editor, The Hearing Blog

  36. Carol Says:

    Hi Kate. I just found your blog and really enjoyed it as I’m in a similar situation. I wondered how you were doing now as I’m just about to have an implant myself. I’m working through a few things myself via my own blog -http://mycockingimplant.wordpress.com/. Feel free to get in touch! Would love to lnpw how it all went Hope all’s well 🙂

  37. rkaldor Says:

    Hi Kate,
    I have had an implant for about 2 months now. I started a blog too, http://hellovincent.wordpress.com/
    if you are interested in reading it. I am happy so far and will have another mapping in two days.

  38. Kevin Says:

    Hi Kate:
    I’m so glad I came across your blog. I’ve been a hearing aid dispenser at a “mail-order” hearing aid company in the USA for 20 years. I know “mail-order” sounds frightening, but we actually do help a lot of people who can’t afford the normal hearing aid prices and would not be hearing without us (sad but true) otherwise. We don’t have the opportunity to see our customers, but we try as best we can using the telephone or writing (whatever we can) to make hearing aids a good experience for our clients. There’s a good deal of experimentation involved sometimes to make things work, but we usually can get there.

    People find us all sorts of ways (often through friends) and people always have lots of questions. I occasionally get people asking me about cochlear implants and that subject has always been a difficult one as I have as many questions about them as my clients do. I have to say, your blog has really helped me understand how they work and what a person might expect from a CI much better than all the “technical” articles I’ve perused over the years. (You seem to be quite savvy on the subject, as you mentioned how much of the information you researched painted a particularly positive picture, perhaps more so than was fair.)

    I can’t say “THANK YOU” enough for your efforts! You helped me understand how the CI (warts and all) is going to generally be a very positive experience for it’s users in the long run. Although I think they are really only best utilized when hearing is nearly gone and not appropriate for simply moderate or severe hearing loss (as is implied occasionally in various other places/articles). An example – in the recent issue of “Hearing Health” (summer 2012) magazine – this quote from an article entitled “Not Only For The Young”: “Generally speaking, when hearing aids prove insufficient in restoring useful hearing – if for example, you are unable to hear well on the telephone – you are considered a candidate for cochlear implantation.”

    That’s a pretty misleading sentence as many people with only a moderate loss may say they are unable to hear WELL on the phone and the rest of the article does not clear up that idea. It hints at that someone who is not happy with their aids, should consider CI. I shudder to think if people with only a moderate or severe loss are being led this way, but in our country, I suspect it’s a problem – and articles like the one I mentioned really worry me.

    Never the less – CI is certainly a great technology for the profound loss, and I really feel my understanding of the device was greatly improved by reading your blog. Thanks again, sincerely!

  39. Vanessa Says:

    Have you tried cued speech? It’s a LOT easier to learn than Sign Language.

  40. Gabby Santos Says:

    Hi Kate,
    THANKYOUTHANKYOUTHANKYOU. Your blog has cleared up so much stuff for me. Thank you. I’m getting the implant VERY soon, and I’m so scared as for what will happen. Could you e-mail me? gabbyalyssa33@aol.com and im so happy for you!(: you couldn’t wash your hair for thirteen days?!? Uh oh…..

  41. Jane Sumers Says:

    It’s been a while since your last post but this is my first time reading. I recently met someone with cochlear implants and I think what they do for people is so amazing, I love your story. I wish you the best of luck for your future!

  42. shuai Says:

    hey i was just wondering how long did your rehab take for the speech therapy? What was the most important part of it?

  43. Heather B Says:

    I have a similar situation. My surgery is set for tomorrow. Very anxious as you & nervous at the same time. Thank u for sharing your story it has help lift my fears somewhat. God bless you! Did u have any rehibilitation after turned on?

  44. Saule Says:

    Dear Kate. We are the parents of children with cochlear implants in Kazakhstan. We need some advices from you if you don’t mind. Pks contact me.
    Thank you…

  45. Breana Says:

    Hello,
    My mom is going to be getting the same surgery in a few weeks. She is self conscious about the way it will look on her and if you can see it when her hair is done. Congratulations on your successful surgery. Please let me know what it looks like it you get a chance.
    Thanks,
    Bre


  46. Hi Kate,
    I received a cochlear implant a year ago. My speech has improved a lot but my hearing still is not perfect. I confused difference between ‘b and p’, ‘s and z’, ‘m and n’. How do you know different sound of them? I still struggle. Please advise me about them. Thanks


  47. Hi Kate,
    We’re doing a short film with a deaf woman as the lead character, and your experiences with the cochlear implant have been invaluable for script research. I’ve read your blog back to back, and I’m happy the implant had such a positive impact on your life. Greetings from Mexico!

    1. Kate Says:

      That’s awesome news Giovanni – hope the film went well! I have just gotten my second cochlear implant one month ago. YAY! Kind regards, Kate

  48. Ashlee Kowalenko Says:

    Hi Kate!
    I’m from Canada and have had severe to profound hearing loss since I was about 2, I’m now 29. I managed to get by with two behind the ear hearing aids and relied heavily on lip-reading. Now I’m a mom and pregnant with baby #2 and I keep waiting for some new advanced technology to come out before I choose cochlear implants! I’ve always said no to cochlear because I felt it was a very permanent decision and you can’t go back. Whereas with hearing aids, its flexible and I am now borderline deaf which is such a terrifying thought especially now that I have a child(ren). I noticed you said you lip-read and relied on closed captioning on stuff. Please be straightforward with me, did you really find that you could carry on conversations with people without having to look at their lips?! That would be amazing, were you able to be part of large groups and loud environments and still pick up on what people are saying without struggling really hard to read their lips or ‘pretending to understand what they’re saying’? Were you able to listen to music with clarity? What about the phone?!

    The idea of getting cochlear’s terrifies me, I feel they may screw up and I may one of the very few where cochlears doesn’t benefit me!

    What was your source of research that made you make the leap to getting them?

    Any advice would be helpful!!

    Thank you!
    Ashlee

    1. Kate Says:

      Hi Ashlee – I can confirm that I can definitely hear people without reading their lips. My outcome was so good, that 8 years later I decided to get my second cochlear implant. I have two kids now, and I can hear them calling to me from upstairs, and I can hear what they are asking from another room! I am so glad I got my cochlear implant. I still use captions though on the TV, which is weird – I just prefer them! TV can be harder to hear because of background music and so on. I can use the phone too. Good luck on your journey,.

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