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 group.

Yes, lots of readers like me who usually just lurk. You are very brave and determined to master your new hearing devices. Thank you for your story and I hope you continue it. It is extremely valuable to those who haven't decided to take that next step of hearing loss: the high degree of technology that cochlear implants presents to us.

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@alice44

Yes, lots of readers like me who usually just lurk. You are very brave and determined to master your new hearing devices. Thank you for your story and I hope you continue it. It is extremely valuable to those who haven't decided to take that next step of hearing loss: the high degree of technology that cochlear implants presents to us.

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Thank you, Alice44! I sure appreciate hearing that, pun intended!
Today, I was riding in the back seat of friends car going to lunch. I normally check out because hearing over the noise has been impossible for years. Today, I suddenly realized that I was understanding the conversation going from the front to the backseat! That was a delightful first. Also, over lunch I was part of a complex set of discussions in a restaurant that was very busy and loud. I didn’t feel my shoulders climbing to my ears, I was able to understand and my body felt relaxed. Another difference, I was easy to know when to interject or answer a question, I could understand!
Sound changes every day, it is still quite electronic. In the beginning, voices were monotonous. Today, noticed I’m hearing differences in pitch and tone. Amazing.
This is a NOISY world we live in, I find myself glad to turn off sound at the end of the day. It’s been a long time since I’ve heard keyboard clicks, water going down the drain, the dryer beeping…
Thanks again, alice44!

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@lizzy102

Thank you, Alice44! I sure appreciate hearing that, pun intended!
Today, I was riding in the back seat of friends car going to lunch. I normally check out because hearing over the noise has been impossible for years. Today, I suddenly realized that I was understanding the conversation going from the front to the backseat! That was a delightful first. Also, over lunch I was part of a complex set of discussions in a restaurant that was very busy and loud. I didn’t feel my shoulders climbing to my ears, I was able to understand and my body felt relaxed. Another difference, I was easy to know when to interject or answer a question, I could understand!
Sound changes every day, it is still quite electronic. In the beginning, voices were monotonous. Today, noticed I’m hearing differences in pitch and tone. Amazing.
This is a NOISY world we live in, I find myself glad to turn off sound at the end of the day. It’s been a long time since I’ve heard keyboard clicks, water going down the drain, the dryer beeping…
Thanks again, alice44!

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I am happy to be your cheerleader. You are an inspiration. Go, girl.

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@lizzy102

Thank you, Alice44! I sure appreciate hearing that, pun intended!
Today, I was riding in the back seat of friends car going to lunch. I normally check out because hearing over the noise has been impossible for years. Today, I suddenly realized that I was understanding the conversation going from the front to the backseat! That was a delightful first. Also, over lunch I was part of a complex set of discussions in a restaurant that was very busy and loud. I didn’t feel my shoulders climbing to my ears, I was able to understand and my body felt relaxed. Another difference, I was easy to know when to interject or answer a question, I could understand!
Sound changes every day, it is still quite electronic. In the beginning, voices were monotonous. Today, noticed I’m hearing differences in pitch and tone. Amazing.
This is a NOISY world we live in, I find myself glad to turn off sound at the end of the day. It’s been a long time since I’ve heard keyboard clicks, water going down the drain, the dryer beeping…
Thanks again, alice44!

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Two week appointment was yesterday. My CA (cochlear audiologist) tested my hearing with my processor on, in the booth, using the ascending beep/noises. At first I couldn’t figure out the noises, they seemed to vibrate or warble in my ears. Once I was able to identify the sounds, the test went very well. Dr. Roberts said that my hearing is already very close to target! She redid the test in my CI ear without my processor and my hearing clocked in at the very bottom of the chart – Yipes.
So, what have these two weeks been like? Stupendous. That’s the word. Wonderous, that’s another one that fits nicely. Let me give you some examples: doves wings slipping through the air as they rise from the ground near where I kneeled, ethereal. How about a concert of lovely high ringing notes when ice hit the sides of the glass in a busy restaurant. How about FaceTime with my grandson and almost understanding every word while understanding my son, who I’ve not been able to understand for 20+ years? And NPR on the radio, understanding the discussion. And hearing while understanding my wife who spoke to me while my back wads turned, behind her face mask she wore while sanding some wood, amazing. Many tearful moments of hearing lost sounds.
When I must remove my processor to sleep, I am bereft. As if I had taken off my right hand or a removed piece of my heart. In the booth without it, I could only feel that encompassing fear I used to feel when getting my hearing tested… fear of failing, looking stupid, being seen as incompetent. I’ve decided to name each of my processors – the black OTE and my blond Kanso. No names have come to me yet, but they will. My processors are now as important as family members or my cats.
I don’t want to take you on a ‘Merry Sunshine’ ride here, there have been difficulties, none concerning the function of my CI though. I have still got pain in my inner ear and itchyness (a sign of low grade pain). The pain arrives in the late afternoon or evening nad persists into the night, so it is helping me to be more mindful about how tired I am – hearing fatigue hasn’t disappeared (yet). On that note, usually I’m so much more relaxed than with my HAs – I don’t have to work hard to understand now. IN fact, I’m writing this in Starbucks, surrounded by conversations and I am not at all bothered by the bangs of the machine or noisy laughter – my processor stops loudness in nanoseconds. MUCH better than my endearing HAs. Tinnitus is still a factor – louder than before the CI but quieter than just after the surgery, so that’s good.
Nuts and bolts. After the processor was turned on and mapped the first time, I was instructed to increase the volume (using my remote) from 6 to 10. Yesterday we re-mapped and I’m starting back at volume 6 again. It’s about building tolerance to sounds I’ve not heard in years. This is such a complex process!
Thank you, friends, for joining me on this magical journey. See you in a couple of weeks.

REPLY
@lizzy102

Two week appointment was yesterday. My CA (cochlear audiologist) tested my hearing with my processor on, in the booth, using the ascending beep/noises. At first I couldn’t figure out the noises, they seemed to vibrate or warble in my ears. Once I was able to identify the sounds, the test went very well. Dr. Roberts said that my hearing is already very close to target! She redid the test in my CI ear without my processor and my hearing clocked in at the very bottom of the chart – Yipes.
So, what have these two weeks been like? Stupendous. That’s the word. Wonderous, that’s another one that fits nicely. Let me give you some examples: doves wings slipping through the air as they rise from the ground near where I kneeled, ethereal. How about a concert of lovely high ringing notes when ice hit the sides of the glass in a busy restaurant. How about FaceTime with my grandson and almost understanding every word while understanding my son, who I’ve not been able to understand for 20+ years? And NPR on the radio, understanding the discussion. And hearing while understanding my wife who spoke to me while my back wads turned, behind her face mask she wore while sanding some wood, amazing. Many tearful moments of hearing lost sounds.
When I must remove my processor to sleep, I am bereft. As if I had taken off my right hand or a removed piece of my heart. In the booth without it, I could only feel that encompassing fear I used to feel when getting my hearing tested… fear of failing, looking stupid, being seen as incompetent. I’ve decided to name each of my processors – the black OTE and my blond Kanso. No names have come to me yet, but they will. My processors are now as important as family members or my cats.
I don’t want to take you on a ‘Merry Sunshine’ ride here, there have been difficulties, none concerning the function of my CI though. I have still got pain in my inner ear and itchyness (a sign of low grade pain). The pain arrives in the late afternoon or evening nad persists into the night, so it is helping me to be more mindful about how tired I am – hearing fatigue hasn’t disappeared (yet). On that note, usually I’m so much more relaxed than with my HAs – I don’t have to work hard to understand now. IN fact, I’m writing this in Starbucks, surrounded by conversations and I am not at all bothered by the bangs of the machine or noisy laughter – my processor stops loudness in nanoseconds. MUCH better than my endearing HAs. Tinnitus is still a factor – louder than before the CI but quieter than just after the surgery, so that’s good.
Nuts and bolts. After the processor was turned on and mapped the first time, I was instructed to increase the volume (using my remote) from 6 to 10. Yesterday we re-mapped and I’m starting back at volume 6 again. It’s about building tolerance to sounds I’ve not heard in years. This is such a complex process!
Thank you, friends, for joining me on this magical journey. See you in a couple of weeks.

Jump to this post

March! Gosh, It’s been 6 weeks since my processors were activated. It would take hundreds of words to describe how much my life has changed. Things I could never do before – talk with my friends on the phone, talk with my grandkids on FaceTime – I now enjoy. A pine warbler was outside the RV window and the sound was so interesting, detailed and rich.
I am an immunosuppressed kidney transplant recipient – 20 years out – and this Covid-19 has me scared. I’m self-isolating to prevent exposure. I wasn’t able to do a huge shopping trip because the number of people in grocery stores. I normally shop at odd hours to avoid the crowds. Barb shops and we use bleach to clean packages coming in to the RV. Oh, yes. We finished renovating our house and it gets listed today. Our goal before the virus was to sell the house and move closer to our grandchildren. Now, we’re trying to decide what to do at all. Sticking in this lovely state park seems a good bet at least until the house sells. So not only have I been learning how to hear again, but the rest of my life is topsy-turvy.
The cochlear implant surgery didn’t go as well as it could have, I’m still experiencing taste bud issues. A persistent metallic taste throughout my mouth and reactivity to salt and sugar that blow both flavors up to an intolerable level leave me not so hungry.
Aural rehabilitation has been a blast. I use Angel Sounds, listen to audiobooks, talk on the phone, and was talking to anyone who would stop a minute when I was out – not now with the virus, I’m home.
With hope you are all social distancing etc. I read a good thing, “Don’t do social distancing because you could get the virus. Practice social distancing as you HAVE the virus and protect others in your community.”

REPLY
@lizzy102

March! Gosh, It’s been 6 weeks since my processors were activated. It would take hundreds of words to describe how much my life has changed. Things I could never do before – talk with my friends on the phone, talk with my grandkids on FaceTime – I now enjoy. A pine warbler was outside the RV window and the sound was so interesting, detailed and rich.
I am an immunosuppressed kidney transplant recipient – 20 years out – and this Covid-19 has me scared. I’m self-isolating to prevent exposure. I wasn’t able to do a huge shopping trip because the number of people in grocery stores. I normally shop at odd hours to avoid the crowds. Barb shops and we use bleach to clean packages coming in to the RV. Oh, yes. We finished renovating our house and it gets listed today. Our goal before the virus was to sell the house and move closer to our grandchildren. Now, we’re trying to decide what to do at all. Sticking in this lovely state park seems a good bet at least until the house sells. So not only have I been learning how to hear again, but the rest of my life is topsy-turvy.
The cochlear implant surgery didn’t go as well as it could have, I’m still experiencing taste bud issues. A persistent metallic taste throughout my mouth and reactivity to salt and sugar that blow both flavors up to an intolerable level leave me not so hungry.
Aural rehabilitation has been a blast. I use Angel Sounds, listen to audiobooks, talk on the phone, and was talking to anyone who would stop a minute when I was out – not now with the virus, I’m home.
With hope you are all social distancing etc. I read a good thing, “Don’t do social distancing because you could get the virus. Practice social distancing as you HAVE the virus and protect others in your community.”

Jump to this post

Hi @lizzy102, I didn't realize that you are a transplant recipient. You may be interested in the Transplants group on Connect here https://connect.mayoclinic.org/group/transplants/

In this discussion, members are talking about the virus and how to stay safe:
– COVID-19 and Transplant Patients https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/

In fact, we created an entire group dedicated to COVID-19 to help people cope, find connection during social isolation and get answers to questions that seem to be changing by the minute.
– COVID-19 Support Group https://connect.mayoclinic.org/group/covid-19/

Lizzy, it sounds like aural rehab is going well. I'm curious about the taste bud issues. Can you explain the relationship between the Cochlear implant and taste? Anyone?

REPLY
@lizzy102

March! Gosh, It’s been 6 weeks since my processors were activated. It would take hundreds of words to describe how much my life has changed. Things I could never do before – talk with my friends on the phone, talk with my grandkids on FaceTime – I now enjoy. A pine warbler was outside the RV window and the sound was so interesting, detailed and rich.
I am an immunosuppressed kidney transplant recipient – 20 years out – and this Covid-19 has me scared. I’m self-isolating to prevent exposure. I wasn’t able to do a huge shopping trip because the number of people in grocery stores. I normally shop at odd hours to avoid the crowds. Barb shops and we use bleach to clean packages coming in to the RV. Oh, yes. We finished renovating our house and it gets listed today. Our goal before the virus was to sell the house and move closer to our grandchildren. Now, we’re trying to decide what to do at all. Sticking in this lovely state park seems a good bet at least until the house sells. So not only have I been learning how to hear again, but the rest of my life is topsy-turvy.
The cochlear implant surgery didn’t go as well as it could have, I’m still experiencing taste bud issues. A persistent metallic taste throughout my mouth and reactivity to salt and sugar that blow both flavors up to an intolerable level leave me not so hungry.
Aural rehabilitation has been a blast. I use Angel Sounds, listen to audiobooks, talk on the phone, and was talking to anyone who would stop a minute when I was out – not now with the virus, I’m home.
With hope you are all social distancing etc. I read a good thing, “Don’t do social distancing because you could get the virus. Practice social distancing as you HAVE the virus and protect others in your community.”

Jump to this post

Hi Lizzy, it's great all that you have accomplished with your CI! But sorry about those taste bud issues – which I have never heard of. Do you have an detailed explanation from the doctor for why these problems?

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In response to Lizzy 102 and others worried about Covid-19: Avoid all processed/packaged foods. Instead, cook from scratch. I've done this forever, and we never have colds or flu, nor did my kids when they still lived at home. Look at the labels on foods. If the ingredients list is more than the actual food item and contains any chemicals, put it back on the shelf. Stay away from salt, especially in canned foods. You can tell how much salt is present by looking at the sodium content. You only need, at most, 1,200 mg. of salt/day. Cooking from scratch is not necessarily difficult or time consuming. My husband is a brittle diabetic who had a kidney transplant over six years ago. Until he was forced to go on dialysis before the transplant, he sold boats at nine trade shows each winter, with everyone around him coughing, sneezing, etc. I precooked his meals and sent them with him to heat up in the microwave in his hotel room. In spite of working long hours at the shows and driving to/from them, he never had even a sniffle year after year. Although we did all the excess things with hand sanitizer, masks, etc. following the transplant, we stopped doing that after a couple of months and rely on simple hand washing. I prepare everything, using very little salt, sugar, or fat.

Lizzy102, thanks so much for your posts about your CI! It's very helpful for those of use thinking about getting one.

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@colleenyoung

Hi @lizzy102, I didn't realize that you are a transplant recipient. You may be interested in the Transplants group on Connect here https://connect.mayoclinic.org/group/transplants/

In this discussion, members are talking about the virus and how to stay safe:
– COVID-19 and Transplant Patients https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/

In fact, we created an entire group dedicated to COVID-19 to help people cope, find connection during social isolation and get answers to questions that seem to be changing by the minute.
– COVID-19 Support Group https://connect.mayoclinic.org/group/covid-19/

Lizzy, it sounds like aural rehab is going well. I'm curious about the taste bud issues. Can you explain the relationship between the Cochlear implant and taste? Anyone?

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Here’s an article about how taste issues develop post-CI surgery, Colleen.
https://www.ncbi.nlm.nih.gov/pubmed/18033736
I don’t know why that didn’t paste as a link. Please, copy and paste to your browser.
Thank you so much for the links. I am already reading and posting to the transplant group. I’m out 30 years on my two family members kidneys (one lasted 11 years and the other us 20 and counting!). I’ll check out the others. Be well.

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@joyces

In response to Lizzy 102 and others worried about Covid-19: Avoid all processed/packaged foods. Instead, cook from scratch. I've done this forever, and we never have colds or flu, nor did my kids when they still lived at home. Look at the labels on foods. If the ingredients list is more than the actual food item and contains any chemicals, put it back on the shelf. Stay away from salt, especially in canned foods. You can tell how much salt is present by looking at the sodium content. You only need, at most, 1,200 mg. of salt/day. Cooking from scratch is not necessarily difficult or time consuming. My husband is a brittle diabetic who had a kidney transplant over six years ago. Until he was forced to go on dialysis before the transplant, he sold boats at nine trade shows each winter, with everyone around him coughing, sneezing, etc. I precooked his meals and sent them with him to heat up in the microwave in his hotel room. In spite of working long hours at the shows and driving to/from them, he never had even a sniffle year after year. Although we did all the excess things with hand sanitizer, masks, etc. following the transplant, we stopped doing that after a couple of months and rely on simple hand washing. I prepare everything, using very little salt, sugar, or fat.

Lizzy102, thanks so much for your posts about your CI! It's very helpful for those of use thinking about getting one.

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Hi Joyces. I got the wellness bug in 1969 and have been a gardener, home cook, canner, freezer etc since then. We rarely eat out or eat prepackaged foods. I’m no longer a fan of salt with the cochlear and taste issues. Thank you fo sharing more of your story and advice. You guys stay well out there.

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