Voiceover: Cochlear Implant Basics is a site for candidates, recipients and their families and friends. If you, or a loved one, is profoundly hard of hearing, newly deaf, or have experienced sudden hearing loss. We are here to share our stories and tell how receiving a cochlear implant can be a life-changing event.

Voiceover: This site is not medical advice, nor is it brand-specific. Within these podcasts and videos, you will meet recipients who faced hearing loss situations and hearing aids could no longer provide comprehension of speech or music. They share the stories of how they lost their hearing, their struggles with growing isolation from their family and friends, their inability to compete in the world of business, their difficulties of navigating air travel without hearing, how the joy of music disappeared, and the panic of not being able to use a telephone to contact 911 to get aid for a loved one.

Voiceover: They will talk about their fears and the reason they procrastinated to get a cochlear implant and the reasons they moved forward, how receiving a cochlear implant changed their lives and the lives of those who surround them. You will meet audiologists and surgeons, and those who support the deaf and hard of hearing communities.

Voiceover: Welcome to Cochlear Implant Basics. Reminder: Cochlear Implant Basics is not offering medical advice. Please consult your own healthcare provider.

Richard: My guest today is Kathy. Kathy has a long, varied career in the nursing field and she discovered her hearing loss while self-testing an audiometer while working as a school nurse. She realized either the machine was broken or her hearing. It turned out to be her hearing.

Richard: She talks about her series of missteps along the way. There are expensive hearing aids that did not provide improved speech comprehension for her, but luxury vacations for the hearing aid dealer. She eventually qualified for a cochlear implant and it changed our life. Today she has a Cochlear Nucleus 6 on one side, and a hearing aid on the other. And she talks about why she is considering a cochlear implant for the other side. This is her story.

Kathy: My hearing loss probably started before I became aware of it. I used to be a school nurse in Massachusetts in the 90s into the 2000s and part of my job was doing hearing screening on the students. And so, of course, I would test the equipment prior to using it on myself. And I realized either the equipment was faulty, or it was my hearing that was faulty. I also had discovered I was having difficulty speaking with several people.

Richard: How long ago was that?

Kathy: That was back in, probably in my forties. So, I decided to get it evaluated. I did go to my primary care, who I believe wasn’t doing hearing screenings at that time, or referred me to an ENT. So, I went to an ENT who actually had an audiologist in his office and she diagnosed bilateral hearing loss. She also suggested hearing aids, but at that time she was not quote, “Selling or prescribing or offering hearing aids out of her office.”

Kathy: And so with minimal guidance, I went to look for a place that sold hearing aids. I probably did the worst thing you could have done without guidance, I went to a place that was in a mall where I should’ve had some suspicion that the person, who was a sales person, not an audiologist, I came to realize, was telling me about trips that he got to take. Well, those trips were probably based on the amount of hearing aids he sold, so I fell for it. I bought one. He recommended two, but at the time I thought I will just try the one. And I believe at that time was my left ear where I bought the one hearing aid.

Richard: Did it you at all?

Kathy: It did help me, it did help me. And so-

Richard: How about with your job? You were working as a nurse. Were you able to communicate? Was it clear?

Kathy: Yes, yes, it did help. So that was fine for a while, but it wasn’t perfect and I kept going back, ultimately… Trying to think, a couple of years went by and I did go to somebody else who recommended Widex hearing aids. So, those were my first bilateral hearing aids, and they were very good, they were very helpful. But then I felt like I was fine with the job and with these new hearing aids. And so that probably went on for another five more years, but then again, I found they weren’t doing quite as well as I had hoped.

Richard: You’re deteriorating as your hearing was deteriorating [crosstalk 00:00:05:25].

Kathy: Exactly.

Richard: And you were still doing your job at the time?

Kathy: I was still doing my job, but I felt sometimes, because I was working with school-aged children, and their voices are higher frequencies that I really was noticing more difficulty hearing the kids. As it turned out in 2008, my husband, his position in Massachusetts transferred here to Florida. So, I left the job, I retired and came here, and considered at that time perhaps still pursuing school nursing, which I really loved, and I had done probably a total of 15 years in Massachusetts.

Kathy: However, the school system is a little different here. Instead of one nurse in every school, there’s an LPN in most of the schools and the RN supervises one, or more, schools. So, for me, realizing that I did have a hearing loss, that it was all new kids, all new schools, all new staff, it dawned on me that this is probably not the best option for me work-wise. So, I did what I had also done part-time in Massachusetts, I went into home care, so private duty home care. And that wasn’t too much of a struggle because I’d be one-on-one, or one-on-one, with the patient, the client and the family. And again, not too difficult.

Kathy: My hearing did not improve, continued to decrease. I came to a new audiologist here in Florida, probably two years after I moved here. And she recommended upgrading my hearing aids because the technology, et cetera, et cetera. One thing that I always find interesting is, when I was in Massachusetts, the hearing aid provider there told me about telecoils. So, I had great Widex hearing aids with telecoils that I never used because there really wasn’t much looped, or I didn’t know much about looping. I came to Florida and my new audiologist talks about, “Do you want a telecoil?” And I thought, “Well, I didn’t really use it too much when I was in Massachusetts, what do you think?”

Kathy: And she said, “Well, it will make the hearing aid a little heavier.” What I wish she had told me is, “You’re in Florida now, there are dozens of venues that are looped.” There are churches, houses of worship, there are so many places that are looped. “Yes, I think it’s a great idea here.” She didn’t tell me that. So, I ended up with my new hearing aids, which were Oticon’s, and ultimately had to get a streamer for those because they didn’t have the little nifty telecoil adapter.

Kathy: Anyhow, that did seem to work for awhile. I would go back periodically, I think every year, for a reevaluation and my hearing did not improve. So, it continued to regress.

Richard: Did you find yourself getting more isolated?

Kathy: I did and it’s sad. People talk about isolation. I think with that isolation, somebody might’ve mentioned today, just that sadness that you can’t communicate with people anymore. That is so much of a challenge.

Kathy: In fact, I just remember being anxious before going into the booth because I pretty much knew that it wasn’t better, that it was worse. And she finally said, “I haven’t done this too many times, but I really think you might need to see somebody else.”

Kathy: So initially, I believe she referred me to a doctor, an ENT, who suggested an MRI to see if there was anything new, different, that might have affected the hearing, and there wasn’t. So at that point she said, “I think you should think about a cochlear implant as an option.”

Richard: Did you know about them?

Kathy: I knew about them. Actually, I think at that point I had been in Florida a couple of years, maybe it was later than that, Richard. Maybe it was 2012. I can’t remember because I didn’t follow through right away on that suggestion. I had gone to a few HLAA meetings, but became much more active in the group after… Do you remember Joan Haber? So, Joan actually became a mentor, I would say to me, in terms of helping me just talk about what an implant involves.

Richard: I’m curious, what was your feeling about implants that time? You’ve been told now you might qualify for one, or you qualify for one. Do you remember what you felt at the time? Were you afraid?

Kathy: Fear was a big factor. Fear was very big.

Richard: How did you deal with that?

Kathy: Well, I just denied that I needed it and decided that, “Hey, the next best thing is gonna be out there because I’m gonna wait for that.” Because to do that implant, that’s irreversible. Once you do that, there is no turning back. You’ve changed the functionality of your [crosstalk 00:10:59].

Richard: Did you talk about residual hearing it all, retaining residual hearing? Did yo have any feelings about that?

Kathy: I did have some residual hearing. However, when I had my surgery, what was very interesting is, my surgeon told me that there really wasn’t much. I thought there was and after the surgery I realized that there was some. For example, the ceiling fan. I remember hearing that at night. The house was quiet, there was no other ambient noise, but I could hear the ceiling fan, and after the surgery, I didn’t hear it. So he also said, “People that have some residual hearing, I give them steroids,” I believe, “to help preserve.” And he said that, “In your case I wouldn’t because there’s not much there.”

Richard: So, you consulted the surgeon, you scheduled for a cochlear implant. Do you remember how many months down the road from the time you decided to do it until the time you had surgery?

Kathy: When I finally did see the surgeon… So I met with him and actually on the first appointment he said to me, “You’re definitely a candidate.” And he also said to me, “And I would recommend Cochlear Americas as the branch.” And I said, “Well, don’t I get a choice?” He said, at that time in 2016, prior to the surgery, at that time Cochlear America was the only company that had the hybrid. And his feeling was that while I needed the regular implant in the right ear, my left ear was a candidate for the hybrid.

Richard: So, you didn’t do the hybrid at the time?

Kathy: Not yet.

Richard: So, you did your left ear [crosstalk 00:12:46].

Kathy: Actually, I did my right ear.

Richard: You did your right ear with a regular cochlear implant?

Kathy: Exactly.

Richard: And you left your left ear for the future, if you need it, is that correct?

Kathy: Correct, correct.

Richard: Okay.

Kathy: So, that’s where I am today.

Richard: And you go to the hospital for surgery that day and you’re still a little bit scared?

Kathy: Yeah.

Richard: Tell me about the surgery a little bit. What happened after?

Kathy: I was pretty anxious about the surgery. However, the staff, it was a surgery clinic at Tampa, the staff there I just cannot say enough about. They were probably used to… Because, actually, I think that particular place, all they did were ENT type surgeries, and probably primarily cochlear implants. And so they were very familiar with the process. I think they answered multiple questions for me, they did whatever they could to ease my anxiety and make me feel more comfortable.

Kathy: Next thing I knew I’m getting the intravenous sedative and actually this was after my surgeon had spoken to me as well, so I felt like everybody had talked to me. And prior to the surgery, of course, there are a couple pre-op type visits in Tampa because you need to do the testing, and all of those times the surgeon did speak to me as well, I believe, or at least twice before the surgery,

Richard: So the surgeon, in this case, was one who recommended the brand. I ask this question because many people who are just investigating getting an implant, they get what we call a document dump, where the audiologist dumps all the brochures on, you’re forced to make a decision, which is probably one of the most confusing parts. But in your case the surgeon recommended which you get.

Kathy: Well, interesting, the audiologist who did the testing before I saw the surgeon, that evaluation period, had shown me the three different types, and the pluses, the minuses, pros and cons.

Richard: Mm-hmm (affirmative).

Kathy: And she basically said, “So, these are your choices.” And I thought, “Well, how do I make a decision?” But then as soon as I saw the surgeon, he was the one who said to me, “I would suggest Cochlear America for you based on what’s going on in the right ear, and some of the hearing you have in the left.”

Richard: [crosstalk 00:15:12]?

Kathy: Right. Because I’m indecisive, that was very helpful for me.

Richard: So you made your choice. Do you have any regrets about what you’ve shown?

Kathy: No.

Richard: Okay, [crosstalk 00:15:25] you’ve been happy?

Kathy: [crosstalk 00:15:26] make the choice about having the surgery?

Richard: Both that and [crosstalk 00:15:30].

Kathy: I really don’t. I think the only partial regret is that I was implanted with Nuclear 6. Within six months, there was the Nucleus 7. So, I’m with the slightly older technology until four more years pass.

Richard: That happens, that happens.

Kathy: That happens.

Richard: Yes, it’s [crosstalk 00:15:53]. That’s a legitimate regret, but that’s just timing. That’s what we call the red line, “Just didn’t know.” What happened since? Was there any particular feature of the 6, or the accessories you like in particular?

Kathy: Well, since it’s my first one, and I have no other basis for comparison, obviously the clarity of sound I really like. I like the ease of programming. I have a remote and I use that for programming.

Richard: It changed your life how?

Kathy: It made me become less isolated. I remember prior to the surgery, November and December, 2016 because I did not want to do the surgery prior to holidays, and so forth. I just remember that feeling of such isolation. We had had Thanksgiving together with some neighbors and it was just hard for me to follow the conversations. Just like somebody mentioned at the meeting, you’re afraid to say anything because you feel like, “Are we still on that topic? Did somebody change the topic? Or did somebody say what I wanted to say already?”

Richard: You had your cochlear implant, it had been activated, do you still have that feeling from time to time?

Kathy: Sometimes, because it’s not perfect. It’s not restored, for me, normal hearing and just having the one ear, we are bilateral hearing [crosstalk 00:17:27].

Richard: Bimodal, bimodal.

Kathy: Bimodal. So, I think the amount of input I’m getting from this hearing aid, I think it maxed out.

Richard: What do you have on that side?

Kathy: I still have an Oticon and my audiologist in Tampa had talked to me about the ReSound because it does work with Cochlear America. However, she did say to me, “I don’t know how much more you might get based on the audiogram in your left ear; I don’t know how helpful it will be, especially if you are thinking somewhere down the road about doing another implant.”

Richard: All right. That’s a very interesting topic because you thought about a second implants, obviously. Can you talk a little bit about what the pros and cons in your mind?

Kathy: So the con, I have several friends who are bilateral implant wearers and one that I’ve become close to has said to me, “I take them both off, I am completely deaf and I have to deal with the fact that I am deaf and sometimes that’s a little scary for me.”

Richard: Well, if you take your implant off now and you take your hearing aid off now?

Kathy: I am pretty deaf.

Richard: Okay. That’s what I think people want to know about because so many people have to deal with the fact they might get one. What’s the second one going to be like? But in the future you would consider getting a second one?

Kathy: Yes. My surgery day friend, that I met the day of my surgery and have become close to, did have a second one, and she’s thrilled. She is thrilled. And it was a much easier adjustment with the second one from what she has told me. It was very easy transition and I believe she had it… I think the surgeon had said to wait six months prior to having a second one. And I think she waited about that amount of time, maybe a little bit longer. I don’t remember now the exact date, but she’s very happy with it.

Richard: I’d like to go back to vocations again, for the moment.

Kathy: Mm-hmm (affirmative).

Richard: You spoke about your career and the hearing loss. Then, when you lost your hearing you were already retired. Have you found any other vocation you’d like to go into now? Or have you got a change that you got your implant?

Kathy: Well, I’m very fortunate in that I am still working as a nurse. I work for a company that does testing. They test people who want to become certified nursing assistants. So that testing requires that people who apply for this, or apply to take the test, have to do both the written tests and a clinical skills test. So, another nurse and I are in a room that mimics maybe an assisted living place, and we watch these two people, one takes care of the other, and we evaluate whether or not they’re meeting the skills, the checkpoints.

Richard: In other words, you have to be able to hear everything they’re saying?

Kathy: Exactly.

Richard: And can you?

Kathy: I actually can, better than I ever could. I will tell you what is challenging, people with accents because we do probably have 25% of people that have accents. So, accents are a little challenging. I can sometimes adjust the remote, I can bump the volume up. People especially who speak very quietly because they’re very nervous, I find sometimes even the other nurse will say, “Could you speak up please? I need to give your credit for what you’re saying.”

Richard: In other words, people with normal hearing or having problems in the same situation?

Kathy: Exactly, exactly.

Richard: But you function to very high level now that you’ve had a cochlear implant, in a way you couldn’t have before, right?

Kathy: Exactly. And I’m also doing, I work for Manatee Technical College and do first aid and CPR classes, and that was a little challenging too because here’s a group and you’re the instructor. I generally always tell them ahead of time that I do have a hearing loss and I may have to ask you to repeat if you’re going to ask a question. But most of the time it seems to not be a big problem, so I’m [crosstalk 00:21:52] very happy to be able to do that.

Richard: Isn’t that great? Are we thrilled? Are we…? Yeah.

Kathy: Yeah. Very happy to be able to do that as well.

Richard: My last two questions are about music. Do you listen to music?

Kathy: I do listen to music, but music is still a challenge. I do find the music I’m most comfortable with is music that I knew before.

Richard: Is that right?

Kathy: Yeah. Older music or music that I can mentally [crosstalk 00:00:22:14].

Richard: Did you have to learn to hear music again, or does it come back… Why? Because you have a hearing aid on one side?

Kathy: It is more challenging that I can’t always follow the rhythm. Like if I’m in a situation, say for example in a church setting, and people are singing, I’m not always sure I’m on key, I’m not. So music has been a challenge.

Richard: And if you’re in a church setting, is there a T-coil in your church or…?

Kathy: Yes, yes.

Richard: So that brings the sound right to your processor?

Kathy: Well, only if the people singing are singing through a microphone, but they’re usually not, so that doesn’t help.

Richard: Are there any features you would like to see that you don’t have on the cochlear implant? I know you’re waiting for the N7 because it has a few more features.

Kathy: Mm-hmm (affirmative).

Richard: But what would you like to see that… You don’t know?

Kathy: Well, I have several of the portable features. I purchased the accessories like the microphone. I have found the microphone is a great, great accessory for me.

Richard: How do you use the microphone at home?

Kathy: I tend to use it more in the car. So today, actually I picked up my daughter from Tampa airport. She speaks fast, she speaks softly. I clip the microphone, not actually onto her, but onto something that was close to her. I think on seatbelt because if it’s too close, it’s too much sound, what I found. And I was shocked, I was able to hear her conversation for the whole ride. That, to me, is huge. I used to not be able to hear her in the car, or understand her. I knew she was saying something, so I could hear some noise, but I could not understand. So, for me, that has been huge. We just didn’t talk in the car.

Richard: Now that you have your hearing back, with the sound back, do you have any goals for the future you’d like to do that you could not have conceived of before?

Kathy: Well, I don’t think I want to climb Everest anymore because that just seems just way too dangerous, so that’s off the table. Actually, just to continue to improve right now what I have, and to optimize what I have in terms of other long range goals. I’m trying to practice to be better with the phone. I will tell you the phone is sometimes still of a challenge for me.

Richard: How are you using the phone clip with the phone?

Kathy: The phone clip has gotten better since my last audiology appointment. I was struggling with the Phone Clip. My last appointment the audiologist adjusted the settings and it’s much better, it is much better. So I really think that was a piece of it. I find actually using the Phone Clip with my cell phone, I understand better than the captioned phones. Captioned phone isn’t as clear as it used to be to me. Plus I have to turn the volume way up, so working on improving being able to do the phones.

Richard: That’s fabulous. I’m going to thank you for your time, but before we end I just wanted to ask, do you have any advice for others who might be sitting on the fence?

Kathy: I have a family member, a lovely sister, who helped get me to where I am today. She’s actually right through the Peer Mentor Program at Gallaudet University and she’s younger than I am, so I feel that we discussed this. There’s probably some genetic predisposition in our family. She has not been ready yet to do this and I hope she will continue, and I hope other people who are considering this will continue to research it, and maybe feel some comfort level with being able to move forward because you’re missing a lot.

Richard: I know this is hearsay, but do you know why she does not want to move forward, or you just guess?

Kathy: I’m not sure if she’s waiting for maybe the next new technology that isn’t so permanent, I suppose. I’m really not sure. She’s well-versed on the surgery. She sent me information from her course. She spoke to, and heard from, so many experts through that program. She just couldn’t say enough about it. Plus it was long, it was two years. So, it’s not lack of knowledge. I think there’s some hesitation, possibly some fear.

Richard: I hope if she comes to visit you here she’ll sit down for an interview with me. I would be very interested to find out about that.