My Cochlear Implant - a journal

Posted by lizzy102 @lizzy102, Dec 9, 2019

I’ve been loosing my hearing for around 25 years. It started after my first kidney transplant - or that’s when it got bad enough to go see an audiologist to see why I was saying “What?” “Pardon?” “Could you restate that?” I would get home from work seeing clients and would be utterly exhausted, for no apparent reason. The audiologist I met with, Dr. Robert Sweetlow, advised a hearing aid for my right ear. I can’t even tell you how many aids I’ve had since then - about enough to buy a nice new car I’d guess, since they run about $2000 each.

I work and play for an RV Caravan tour company, we are wagon masters and tail gunners depending on the trip. We usually travel with 16 to 25 RVs and go all over North America, Europe, Africa and Australia. It’s super fun! And it is super stressful for me with my hearing loss. I’m with groups of people in all kinds of challenging hearing/understanding situations. As a retired psychotherapist, you have to know that I love connecting with people and being in the middle of things. Challenging? Oh my, yes.

In 2015 my discrimination was at R-46, L-32. In 2017, Resound 3D Linx hearing aides offered a lot of help to my declining understanding. So, I struggled along for those years. Then this year (2019), after a particularly challenging caravan, I decided to make an appointment for another hearing test and adjustment. In Albuquerque, NM I met with Dr. Terry Sankovitz. I just wasn’t understanding people and was cranky and exhausted all the time. After the exam, Dr. Terry showed me the audio gram... R- 14, L-12. Whaaat? Seeing it on paper my whole insides went cold and still, I was stunned. Barb, my best friend and wife, was just as shocked when Dr. Terry shared the test with her. The test measured how my ears understood speech without any visual cues. Dr. Terry said that there is no point adjusting my hearing aids further, louder wasn’t working. She talked about my options, one of which is cochlear implant. I had to let that sink in...

With a cochlear implant, there is no going back. You’re implanted period. But wait... with my ‘discrim’ I couldn’t go back anyway. The other option would be to withdraw from the world. Understanding .4 in one ear and .1 in the other is deaf. I am highly functional because I speech read; read bodies, context and situations - in the right situation I do okay. In groups, in noise, in a car, in low light... well you know.

It just happened that Cochlear Americas was hosting a panel discussion the next day, for people interested in CI (cochlear implant) and for those with CIs. Did we jump on that opportunity!!! WOW. What an eye opening. The group moderator was a woman who had been deafened as a child and as an adult had chosen bilateral cochlear implants. She was dynamic and compassionate. Her mother was a member of the panel discussion that included a couple, sisters and a single person. Here’s the best part. They hired a court XXX to transcribe speech to captions on a screen for all to see. I am not sure anyone in the room needed them as badly as did I. When I walked in the door, I felt afraid and when I left I felt elated. Arms full of booklets and information, Barb and I talked about the meeting and agreed that both of us felt a sense of hope, at last.

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@contentandwell

@bookysue my HAs never never gets submerged intentionally. I have slipped two times and my HAs got wet but they recovered immediately. Many hearing aids are fine with that.

There are no HLAA chapters within an hour of me. The closest has meetings at night. If they was during the day I would consider going but not at night.
JK

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Oh shoots- You lucky. My HA in tbe old days- yikes.

Bummer about the chapters- maybe put a feeler if folks wants to set one closer to with day hours. Some of the chapters are switching times around- some at night- some in the daytime .

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@bookysue

Oh shoots- You lucky. My HA in tbe old days- yikes.

Bummer about the chapters- maybe put a feeler if folks wants to set one closer to with day hours. Some of the chapters are switching times around- some at night- some in the daytime .

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@bookysue Thanks for the reminder, I will check into that when we are able to come out of isolation.

@julie04 Sometimes when we go out to dinner with the couple we most often do that with, I forget my Connect Clip. The other husband has a booming voice and if the other wife and I are trying to talk it is impossible for me. That can be true even when I have remembered to bring my Connect Clip.
As I have mentioned, they are very supportive and understanding, but not everyone is. My sister feels terrible about my hearing loss but at one point when she and I were in the back seat of the car I asked her to wear the Connect Clip. She didn't want to!
JK

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My hard of hearing family of origin is the most resistant to helping me hear! When we gather, the ones who are able do communicate, and I feel like I'm being ignored (I'm the oldest and the most hard of hearing). Wouldn't you think these are the people who would be most helpful. The opposite is true.

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@bookysue

Oh shoots- You lucky. My HA in tbe old days- yikes.

Bummer about the chapters- maybe put a feeler if folks wants to set one closer to with day hours. Some of the chapters are switching times around- some at night- some in the daytime .

Jump to this post

The time frame for HLAA Chapter meetings has a lot to do with the make up of the chapter. If the chapter is all older retired folks, they will choose to meet in the daytime. It's hard to involve working folks if the meetings are held then. Some chapters meet on Saturday morning. That's kind of a compromise, but lots of people want to be free on their weekends. 🙂 It's pretty much up to the founding committee when a chapter starts to decide which way to go. A chapter can be formed with a small number of people, but a goal should be to grow. Chapters are more than basic support groups. There are a few chapters that hold both evening and daytime meetings. Our chapter in Appleton Wisconsin meets in the evening. Attendance varies between 20 - 50 depending on the program to be presented or the social event we have twice a year. The chapter also has 2 subgroups; one that focuses on cochlear implants and the other that is basically an entry level support group where people can ask questions and share their experiences. That group meets in the afternoon. No one answer. Depends on how you start and how you grow. Regardless, it's well worth getting involved in chapter development if you want to learn how to live well with hearing loss. We learn more from one another than from the professionals in the field. Not a slam against them, but the reality is they are focused on a small piece of what we need and don't have time to answer questions they don't have answers to. We know what coping means. We know what being left out means. We know what helps and what doesn't. And, we have experienced similar situations that people who don't have hearing loss have difficulty understanding. That's what peer support/self help is about. Let HLAA know if you are interested in forming a chapter. There are people out there who are willing to help. They may not live in your geographical area, but they can sure communicate with you online. Who knows, there may be some national HLAA members in your area. They are everywhere. Be one!

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@bobbiefriend

My hard of hearing family of origin is the most resistant to helping me hear! When we gather, the ones who are able do communicate, and I feel like I'm being ignored (I'm the oldest and the most hard of hearing). Wouldn't you think these are the people who would be most helpful. The opposite is true.

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@bobbiefriend That always is surprising, when people close to you just "don't get it". My husband was like that for a very long time but he is trying harder now. My daughter also has a hearing loss, completely unrelated to mine, but she is often not quite as understanding! I think that may be because her loss is more correctable than mine is, since a big part of mine now is understanding the words said.

@julieo4 Regarding the professionals, I have never yet seen an audiologist who has a hearing loss so they cannot completely understand. I think the more years they have been in practice the more they do understand what their patients are going through so that does help.
JK

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@contentandwell

@lizzy102 I was remiss in joining this conversation until now but I have just read through all of it. I want to thank you for journaling your whole experience so well. It's exactly what a person who is considering a CI needs -- the pros and the cons. I know I will refer back to it if/when the time comes that I do qualify for a CI.

I am not quite to the point where I qualify for a CI but I know I am not too far from it. My hearing has degraded quite a bit in the last few years and my word recognition has really decreased. This seems to have happened since I had a liver transplant in 09.2016. I have read that there is some possibility that those things could be related - hearing loss and immunosuppressants. If so it's not a common side-effect but a less frequent one. It can be very discouraging and depressing to be in a group and not understand much at all of what is being said, even when speaking directly to one individual. The background noise intrudes too much. My family, particularly my son, try to accommodate my loss, and the couple we spend most of our social time with are very accommodating. She, coincidentally, had a deaf aunt and was a teacher of deaf children so they both have dealt with hearing loss.

I know that you cannot wear a CI in the water. I go to water aerobic classes regularly and wear my hearing aids -- my head remains above water, but there have been a couple of occasions when I slipped and my hearing aids were briefly submerged. They were not damaged by that brief submersion. Would that be so also for a CI?
Thanks again for such an informative journal of your experiences.
JK

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Hi JK, First, thank you for your kind words, it means the world to me that my thoughts might help someone else in their hearing loss journey.
There are many drugs that transplant patients must take that are ototoxic. You can google your medications and see which ones are most toxic to your hearing, however... as a transplant patient, you likely must take these medications. To me, living with hearing loss is preferable to pushing up daisys!
Please, when this is over and it is safe, find a university or large speech and hearing program and ask them for an evaluation. Likely your audiologist isn’t qualified to do the test or make the call.
Cochlear recipients are entitled to 4 devices - from a large list - to help you live the richest life you wish. One of the devices I chose was a waterproof case for my implant. I can tether it to my hair and wear a headband to keep it in place while I swim or exercise in the water! You can buy other accessories but I am also a water person, so this was an important choice for me.
The last and most important thing I can say to you is do not be afraid to ask for what you need to help you hear in groups. Sheri Eberts has wonderful short articles on her blog of ways to ask, things to give folks so they understand more what life is like for you and tons of encouragement.
JK, You are going to move forward in your hearing journey. Be proactive and positive and breathe when things get so discouraging, depressing and frustrating.
Blessings,
Liz

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@bookysue

I am a CI candidate but my drs at Penn listened to me- I have a love for music and CI tinnified music - delayed till this year( delayed by me - no $ to cover 20 percent) - vast improvements in being better for music
Both Advanced Bionics and Cohlear have it being waterproof- with add ins. ( ? Or not). It is waterproof though FYI Why it is extremely upsetting about the HLLA convention being cancelled - was going to really find out about $ help. My level of socialization ( very little - less so with the horror) means I cann get away with my aids( 15 and 13 years old! )
This site has some added information I never before and it concerns - taste buds being impacted . It took me a long time to be a foodie - shocked a lot of folks that knew me in my young days. I am still not a great eater when home- one - two meal/ eats a day. I did though on a whim answered a ad for grab and go meals for meals. I qualified- every 6 days get food delivered.
I learned from my former HLAA chapter president how important Roger pen type component has help in directional mike type thing for doing away background noises . Pocket talker does help too ... lesser degree .
Sorry for long bit Take care. Feel free to ask for more information or adds on - this mayo sites have been helpful- real folks dealing with things day to day

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You’re right, bookysue, Mayo CI sites are great. I couldn’t understand speech in music at all before, I couldn’t tell what piece the music was. I had no idea my favorite music was playing unless I could speech read someone to know. YIPES! I love music with my CI. I’ve gone back to singing and playing my ukulele, even. It is a super change. Hope your CI works out soon. Perhaps things will be easier after COVID. Take care. Liz

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More on UPDATE. What a tragedy this Covid situation is... here I am, in an RV, living the life, just had a CI and can understand people speaking from 30’ away, loving communicating with friends and family on social linkups AND... I wanna go out and chat with everyone and that’s just not possible. I imagine that when this is over, I’ll be running up to people, hugging them and saying please talk to me, say anything, LOL. Stay safe, folks.

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@contentandwell

@bobbiefriend That always is surprising, when people close to you just "don't get it". My husband was like that for a very long time but he is trying harder now. My daughter also has a hearing loss, completely unrelated to mine, but she is often not quite as understanding! I think that may be because her loss is more correctable than mine is, since a big part of mine now is understanding the words said.

@julieo4 Regarding the professionals, I have never yet seen an audiologist who has a hearing loss so they cannot completely understand. I think the more years they have been in practice the more they do understand what their patients are going through so that does help.
JK

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There is a book call Deaf Sense by David Losge- the book is a novel but the author was on dead on That I found out he has a loss. Hearing and not so hearing spouse. It is awesome . Really strange and I feel uncomfortable admitting this . But then I am not a people person . I have little patience for certain types hearing losses - I should be more patient but I have a really hard time understanding and hearing certain folks with certain sound .
And folks- now day; the last two weeks; Masks. Omg. Big part of my hearing is lip reading and I cannot hear the bank people etc- it is hard. I am trying to get set up for atm stuff and you supposed to call rather then the branch helping. Life is hard now.

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@julieo4

The time frame for HLAA Chapter meetings has a lot to do with the make up of the chapter. If the chapter is all older retired folks, they will choose to meet in the daytime. It's hard to involve working folks if the meetings are held then. Some chapters meet on Saturday morning. That's kind of a compromise, but lots of people want to be free on their weekends. 🙂 It's pretty much up to the founding committee when a chapter starts to decide which way to go. A chapter can be formed with a small number of people, but a goal should be to grow. Chapters are more than basic support groups. There are a few chapters that hold both evening and daytime meetings. Our chapter in Appleton Wisconsin meets in the evening. Attendance varies between 20 - 50 depending on the program to be presented or the social event we have twice a year. The chapter also has 2 subgroups; one that focuses on cochlear implants and the other that is basically an entry level support group where people can ask questions and share their experiences. That group meets in the afternoon. No one answer. Depends on how you start and how you grow. Regardless, it's well worth getting involved in chapter development if you want to learn how to live well with hearing loss. We learn more from one another than from the professionals in the field. Not a slam against them, but the reality is they are focused on a small piece of what we need and don't have time to answer questions they don't have answers to. We know what coping means. We know what being left out means. We know what helps and what doesn't. And, we have experienced similar situations that people who don't have hearing loss have difficulty understanding. That's what peer support/self help is about. Let HLAA know if you are interested in forming a chapter. There are people out there who are willing to help. They may not live in your geographical area, but they can sure communicate with you online. Who knows, there may be some national HLAA members in your area. They are everywhere. Be one!

Jump to this post

They know since the last convention ( Rochester) . And I have spoken about it at other chapters meetings. You say the older ones want daytime- not true for my former chapter . Odd because 3 of us younger ones wanted daytime-
After Virus is over; I will try to set up a philly chapter in a church, ??? - and start from scratch.

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