Hey guys! Wow, long time no updates! I apologize for being so quiet lately I have just been so intensely busy! Juggling work full time at Penn Medicine with teaching part time at Rowan University and taking two classes a semester towards earning my MA in Writing for the past year has been no joke! I’ve really been enjoying everything I do though. None of this stuff would have been possible if it weren’t for getting my cochlear implants (or at least not teaching) and it has all been so incredibly rewarding.
School has especially been an interesting experience for me. I am never shy from discussing my cochlear implants with anyone that will (or won’t…as is the case with at least some of my sleepy, bored students…hey I do teach at 8am afterall…) listen from students to classmates, professors, and really anyone in between. One of my students even mentioned that she wants to be an art teacher for the Deaf and learn ASL and hear more about my story.
On the student side of things, well I’m continuing to work towards completing God Granted Me Hearing which will serve as my MA in Writing Master’s project. I have been doing significant research for this project especially on Deaf culture and ASL. There’s definitely a lot to learn and I’m really loving this journey I’ve been on.
But enough about school, the real thing I want to talk about with this post is my hearing appointment I had at Jefferson yesterday morning. This appointment was one of the rare times in my life when I scheduled an appointment kind of “just because”. I mean I guess there was kind of a point to it – I haven’t had a hearing appointment in over a year and haven’t really followed up with anyone as much with my right ear post-activation as I did with my left. I guess it’s because I kind of knew what to do and expect and things have been going well for me. Also, I’m just so busy it’s hard to get around to scheduling appointments like that these days, but with my summer hours allowing me to have off on Fridays I thought it would be a good time to schedule a checkup just to make sure everything is working as it’s supposed to.
I’ll be honest – I was pretty nervous about this appointment. For once though I wasn’t nervous because of my hearing abilities or how I’d test, but I was nervous because I’d be getting a new audiologist. I loved my last two audiologists – Dr. Louisa Yong Yan Liang and Alyssa Lerner (who was an extern when I had her, but I really liked her). Louisa left Jefferson to go to Chicago since her husband is a doctor and took a job there. Alyssa was in a similar situation where her boyfriend finished medical school and matched with a hospital in St. Louis so she left to be with him. This left me without an audiologist.
With all of that being said, I was happy to hear that there was another audiologist I could see, Laura Somers. However, I was still nervous at the prospect of meeting someone knew and gaining a new audiologist.
Fortunately, all of my nerves went away the moment I met Laura and her extern, Shelby Weinstein. They immediately made a great impression on me. They were as sweet as could be. One of the first things that Laura said was “Were you in an article…something about talking on the phone?” referring to the article that I did with The Philadelphia Inquirer. This right away made a great first impression on me because it showed me that she did her homework to familiarize herself with my case and my history. She was very personable and friendly which helped me to relax and made me feel comfortable during the appointment. She had an extern, Shelby Weinstein, who was also very nice. She was more quiet but friendly and seemed eager to learn. Laura took her time with everything she did to make sure to show Shelby what she was doing and Shelby seemed really interested and engaged with it all.
The first thing that Laura did was check my settings and the volume on my right ear. The right ear was the main focus of my appointment since I’ve been doing so well with the left (which makes sense since it was the first ear I had implanted and it’s really common for your first ear to be your dominant or preferred ear since you’re more used to it and it’s also kind of a mental thing – getting your first cochlear implant is such a huge, impactful thing (or at least it was for me) that you don’t forget it. It’s still big and impactful with the second one, but not as much since you have something great already to compare it to whereas with the first one you may be comparing it to nothing.
Laura explained to me that her main goal was to balance my ears out more. She played a series of sounds/pitches and gave me a “loudness chart” where I had to indicate if the noise was too soft, soft, medium, loud but comfortable, or too loud. Most of the pitches fell in the medium or too soft range. Laura turned it up a little bit. At first it was too loud and a bit overwhelming so she had to turn it down a little bit to make it more level. It seems pretty good now but I am still adjusting to it. I notice it the most when I put my processors on for the first time in the morning.
Next Laura and Shelby took me into the hearing test booth and they tested my right ear. First they did the beeps and I scored in the normal – above normal range. This will never cease to amaze me. I still remember when I’d be lucky to have any ranges or pitches listed on the chart. When I was first considering my first cochlear implant I told my surgeon, Dr. Willcox, that I would consider it a success if I could have about 30% of my hearing (at the time I had at the most about 7%) and he said my expectations were way too low – he wasn’t wrong! Now I probably have around 80-90% of my hearing.
Here’s where my hearing was on 6/29/2017 on my right ear…quite a difference!
This test was from January 28, 2016 – a little over a month after having my left ear activated. The red circles at the bottom were for my right ear. This is almost a year before I had it implanted.
Next, Laura tested me for word recognition with my right ear. I was a little bit nervous here because the last time I was tested for this in my right ear was on March 25, 2015 I didn’t do very well – earning on a 68%.
I didn’t do too well on my first word recognition test back on March 25, 2015…
However, I ended up doing just fine. I knew I was doing well – you really can just tell with these things if you’re doing well or not. The more I felt I got them right the more confident I became. In the end I performed even better than I imagined by earning a 90% – quite a big difference from the 68% I earned the last time!
I only got about 3 of them wrong and I wasn’t off by that much on the ones I missed!
For the final test Laura tested me with full sentences and she added in a high level of background noise – the highest level possible – to make it harder. She admitted that a lot of people with normal, natural hearing struggle with some of these. Honestly I think what makes this hard sometimes is how WEIRD the sentences are. One time I got a sentence that was something along the lines of “The monkey is using sign language.” This time I got “A camel is not the most comfortable animal on which to ride” and “Could you speak up a little?” which isn’t a weird sentence on its own, but when you say it in the context of a hearing test it becomes a little awkward and confusing – Laura actually asked me to repeat it probably because she wasn’t sure if I was saying back the sentence or asking her to repeat herself lol. #DeafProblems – right?
I scored an 84% with this test. I thought that I got about a 70 on the sentences last time but I don’t see a record of it (I keep everything) so now I’m thinking this might have been the first time they did full sentences with my right ear? Either way it would be an improvement and I’m quite happy with these results!
126/150 or an 84%? I’ll take it! It sure beats my pre-cochlear implant scores of 0!
My appointment concluded with Laura calling me a “Rock star” and telling me I was good to go until next year when I should come in just for a checkup unless of course something is wrong. She told me to keep her posted on my book and everything else. I was definitely impressed by both Laura and Shelby’s care and I look forward to working with Laura more in the future and I hope that Shelby stays at Jefferson so I can work with her more in the future as well because she seems like she’s going to be really good once she finishes her schooling.
Hey guys! I’m back! I apologize for the lack of updates lately. I have been meaning to make this post for a couple of weeks but I’ve been crazy busy with writing my book, God Granted Me Hearing (which yes, is based on this blog and my cochlear implant experience!) :). Also, I haven’t had a whole lot of news lately. My 2nd cochlear implant has been progressing well. I saw Alyssa at Jefferson around a month ago and everything was good but she didn’t test me again so there’s no update on that end.
I do have something else to share with you all today though — what it’s like to get caught in the rain with a cochlear implant. I’ve written in the past about how getting caught in the rain was one of the things I was most looking forward to doing after getting my cochlear implant and I also wrote about what it was like to go swimming with a cochlear implant, but up until a few weeks ago, I never actually seriously got caught in the rain with a cochlear implant.
First let me say this was completely UNPLANNED. I live in Washington Township and I love to take walks. I knew that a thunder storm was on the horizon, but when I first headed out for the day the skies were still clear. It was one of the first days of spring so for once the weather was warm. I didn’t want to walk to the gym like I normally do because I thought it might be too far of a walk and I wasn’t sure if I’d make it back in time to avoid the storm. Instead I decided to take advantage of the fact that all of the basketball courts at the high school I live across were empty. I’ve always loved to play basketball but I don’t get the opportunity to play nearly as much as I’d like. So I grabbed my bag with a couple of bottles of water, my jump rope (don’t ask…), my basketball, and headed out.
I wore my aqua cases for this trip. I didn’t wear the aqua cases just because of the pending storm, but to protect against sweat as well. I made the mistake when I got my first cochlear implant of going to the gym without the aqua case and almost broke it from all of the sweat and moisture I got in it. Ever since that incident I’ve made a point to wear my aqua cases every time I go to the gym, work out, or even go for a walk or do anything that could produce a sweat. I’d rather be safe than sorry.
It took me awhile to cross the street that afternoon. Traffic was busy in Washington Township, as always. When I finally managed to cross the street and make it to the highs school I took out my jump rope and began using it. I’ve had my jump rope for over a year and never used it before. I heard it was good exercise which is precisely why I bought it, but I always shied away from using it fearing I’d look like an idiot, which I totally did, but it was okay because no one was around to laugh at me. I still didn’t have quite enough magnets in my headpiece on the cochlear for my right ear. I think the placement for that one is different than on my left which makes it not stick as well. When I used my jumprope it kept knocking my headpiece off until finally I gave up on it and took it off and put it in my bag.
I only jumped rope for about 5 minutes or so before switching to basketball. I know it doesn’t sound like a lot, but when you haven’t done it for 20 years, jumping rope is really intense! Plus I noticed the clouds were beginning to look a bit heavy so I wanted to stop and make sure I got plenty of basketball time in before it rained on my parade. I put my cochlear back on for this. It works out better for me than the jump roping did, but it still kept coming off my head whenever I jumped so I ended up taking it off again and putting it in my bag.
I played basketball for about a half hour or so before the rain began. I think this was my first time playing basketball with my cochlear implants. I noticed I was much more relaxed. I didn’t have to worry as much about whether or not any cars were coming by the parking lot or if there were joggers running through or someone trying to talk to me. I was able to hear everything around me (and also there wasn’t many people around anyway). It was very peaceful and fun.
After about a half hour I felt a raindrop hit my head. “Okay, that’s my signal to pack it up”, I said to myself. Within seconds of saying that, I found myself in a torrential downpour. The rain came down at the speed of light. I ran to my bag to check my cochlear and put it back on my head and to check that my phone, which was in my bag, was still working. Everything seemed good. Then I grabbed my bag, my ball, and headed on home.
But I couldn’t simply go home; I had to walk back which meant walking through the torrential downpour and trying to cross the dreaded intersection again. It also meant having to pass a bank and drug store while sporting soaking wet clothes and hair and dribbling a basketball. That’s not something you see everyday…
IT. WAS. FUN. SOOOOO MUCH FUN.
This is something I could never do before with my hearing aids. My hearing aids would have broken in seconds and I would’ve been having a major panic/anxiety account over getting caught in a torrential downpour with them. And my mother would want to kill me for destroying my $3,000+ uninsured devices.
But with my aqua cases on, my cochlear implants were 100% waterproof. I had nothing at all to worry about.
I dribbled my ball through the rain until it began to fill with the water and become too heavy to bounce. Then I carried it. I watched the people flee the bank to their cars as if they were afraid the rain might make them melt. As I waited at the crosswalk by the drug store I noticed the people in their cars looked at me like I was some kind of a freak because I was standing at a crosswalk for a busy intersection with soaking wet hair and clothes, a basketball, and the biggest smile on my face.
I didn’t care about being wet. I didn’t care that my clothes felt like they weighed 1,000 pounds from the rain. I didn’t care about my basketball session being cut short. I didn’t care about the fact that I was getting pretty cold. I didn’t even care about the fact that my contacts were getting blurry from being drenched in rain.
I was ecstatic. I was having one of the best days of my life.
When I got home I didn’t have to worry about anything being broken. I did take my cochlears off and put the aqua case parts and those specific batteries in the dryer just to be on the safe side, but I didn’t really have to. There was no panic attack. I didn’t have to take out the hair dryer to try to air them out and to get them to work or nothing at all.
I simply did what any normal person would do…I changed out of my wet clothes, got a hot bath and made a hot cup of coffee to warm up, and went on with my life.
You don’t realize how much these little things in life like getting caught in the rain can really mean to a person until they get to not just experience them, but ENJOY them without any kind of fear at all, for the first time ever. It’s surreal.
Getting caught in the rain with my cochlear implants may not have been everything I hoped it would be. Larry and I have been broken up for over 6 months now. There’s no one new in my life to give me that Notebook-style kiss in the rain. I didn’t even have anyone there to have a conversation with or to go puddle jumping with.
But you know what? It wasn’t what I wanted it to be because it was BETTER.
It was all my joy for the taking. It was all on me. It was all about me, having my moment. I didn’t need anyone else to be there for me. I just needed that rain and to be off in my own little world.
It was one of the best days of 2016 thus far.
I can’t wait to get caught in the rain again sometime soon.
Hey guys! Happy New Year! I hope you all enjoyed your holiday!
I had a pretty enjoyable New Year’s with it being my first New Year’s as a bilateral cyborg! I didn’t have too crazy of plans. I always just stay in with my family and we eat 7 different types of Seafood at midnight as the ball drops and make predictions on the year to come and reflect on the year that passed. I also enjoy a drink. I’m not much of a drinker and don’t like bars, so staying in and just making one drink is more than enough for me.
Last year was my first New Year’s living in the condo in Washington Township, so I knew from last year not to expect much in the way of sound. Our neighbors are pretty quiet and boring; there’s no running out with pots and pains and noise makers at midnight like there was back in Pitman and Woodbury where I used to live. There’s not that much noise to hear on NYE’s at all, so I knew not to get my hopes up too much about hearing different kinds of sounds.
But overall I’ve noticed a huge improvement with my progress with my 2nd cochlear implant over the past week and a half. I moved on to program 2 on Wednesday and it sounded much more comfortable, so I’m gaining sounds with that. I have been practicing words with my mom and playing with Angel Sound diligently. I am almost on level 2 for all programs on Angel Sound now. My biggest struggles have been vowel and consonant (especially consonant) recognition so far, but they are arguably the hardest programs and I still feel like I’m making good progress on them. I feel much more optimistic with it now than I did when I was first activated. I am seeing that this is a progress that takes time.
Pastor’s oldest daughter, Jessica,has been coming to our church with her husband the past few week. Last week she played the flute during service. I have mentioned previously how I wanted to hear a flute with my cochlear, but this is one of the first times I’ve been up close and really able to hear it. I could distinguish it from the other instruments pretty well. It was so beautiful. I was completely mesmerized by it just as I was the first time I heard a violin at church after I was activated with my first implant.
On New Year’s Eve I went to the liquor store to pick up some drinks for the holiday. I went to Hops and Grapes in Glassboro and if there’s one thing I learned about this particular liquor store over the years it’s that you’re almost guaranteed to run into someone you know. First I ran into my childhood best friend, Zach. We were very good friends growing up; he was like a brother to me. This was my first time seeing him in about 10 years so that alone made my night.
Next I ran into someone from one of the cochlear implant support group meetings that I talked to a few times before. My mom spotted him first and said “I just saw another bilateral cyborg! We got to find him and talk to him!” because that is apparently what bilateral cyborgs do. I mean, we’re a rare bunch so when we run into each other it’s like “Hey, sup, bro?” lol. But no, seriously.
As we were looking for him he ran into us and pointed out my cochlears. I didn’t immediately recognize him from the meetings, and I’m unsure if he recognized me, so we kind of both played it off as having not met before. We talked about the progress with our cochlears. He received his 2nd one last March and his is also from Advanced Bionics so he was able to tell me about his experience and he said he had a bit more trouble training his 2nd ear as well but that it’s pretty much there now so that made me feel a lot better. I told him about the Q90 processor and how I like it. He’s due for his upgrade soon, probably in Spring. It was definitely a nice little conversation!
Thinking of the cochlear implant support group…I’ll probably be seeing him again this week! There’s a support group meeting on Thursday. Med-El is going to be talking about their new listening/auditory program which could be a huge help for me training my 2nd implant. I look forward to possibly seeing him again and attending the meeting!
I noticed on New Year’s day I was really starting to make progress as well. The weird thing with my 2nd implant is that I feel like I’m getting music quicker than I did with my first one. Sometimes I think I’m making more progress with music than I am with general words and sounds. However, as a huge music lover, I’m definitely not complaining.
Every year my mom watches at least part of the Mummer’s Parade. One of her relatives (I think her uncle?) used to be a member of the South Philly String Band, so she watches to root for and support them. I always kind of ignore it because I think it’s kind of boring (sorry, mummers!) but I noticed as she had it on this year I could hear the music better than ever. It sounded amazing. I watched Fralinger’s performance and could distinctively pick out the bongos (or whatever kind of drum that was) and the banjos they were playing. It sounded amazing. I don’t think I have ever been able to really hear and understand marching band music like that before. It was so exciting and made me want to hear more band music. I have to get to a Philadelphia Orchestra show after both my cochlears are fully trained — I have a feeling it will blow my mind!
I’m doing much better now with my 2nd cochlear implant and it’s starting to become a very exciting time for me. I go to program 3 on Wednesday and then there’s one more program left after that and then I go back to Jefferson for another mapping. I can see that I am progressing and I know that the best is yet to come.
Hey guys I apologize for the lack of updates. Been a bit crazy over here lately since my surgery, but I’m finally starting to get back into the swing of things today.
I had the surgery for my second cochlear implant for my right ear on November 30th. The procedure was almost identical to how it was with my first one with just a few minor differences. I had to be there a bit earlier for one. I had to be there at 6 in the morning which meant leaving my house by 5. I was pretty tired since I stayed up late that night watching what turned out to be an incredibly disappointing Patriots’ game. After the game I couldn’t fall asleep because I was way too excited.
My mom and I barely slept at all the night before… we were both too excited!
I got to the hospital at 6am on the dot and everything moved very quickly at that point. I had some paperwork to fill out/sign and was taking back to the Emergency room fairly quickly where I changed into my gown and had to answer a series of questions. All of the questions were identical to the ones they asked last year and the answers were the same. I had to give them a urine sample and then they fitted me with my IV. I can never just simply get an IV though. You may remember from my first surgery they had trouble finding my veins and I had to have multiple people try to stick me. They got it in on the first try this time, but might’ve gotten a little too close to the vein. I bled all over the place. For the next two days after the procedure I was trying to clean up dried blood from my IV. I swear I think I bled more from the stupid IV than I did from my actual procedure…
I was really, really excited!
Dr. Willcox’s surgical team and all of the nurses and everyone involved introduced themselves to me and explained what they would be doing. They didn’t need to go into as great of detail as they did last year though since I already knew what they were going to do and I saw many familiar faces. Some of them remembered me, too and were very excited to see me which made everything all the more exciting. I really liked Dr. Willcox’s assistant/the guy who was doing his residency with him. He had a great smile and was pretty attractive. My parents laughed at me when I told them this and said that I “must’ve been pretty high from the drugs they gave me” since he was apparently a lot older than me and “Not that good looking” haha.
I feel like I fell asleep much quicker this time around than I did last time. I don’t have much of a memory of everything before the surgery because I just feel like they put me on the table and I went to sleep. Which makes a lot of sense since I really didn’t get any sleep the night before so I quite tired. I feel like there was less machines hooked up to me, but that could just be because I was asleep and didn’t notice them. I had my cochlear on until I fell asleep at which point Dr. Willcox removed it until after the procedure which made things much better for me. Since I could hear I was able to relax a lot more and they didn’t have to keep telling me to lay down because I wasn’t all anxious to see what they were doing like I was with the first surgery lol.
They took me in for the procedure at 7am and I was back in the recovery room around 11am. I think I woke up around 11:30-12. I was very sleepy and struggled to stay awake. They kept telling me they were waiting to take me back to another room. I asked for my parents and they said they’d bring them up but that they knew I was done and that everything went well.
I felt much better after my surgery aside from being tired compared to how I felt after the first procedure. I didn’t have a sore throat, probably because they used a smaller breathing tube after hearing how I had a sore throat the first time around from the larger breathing tube. I also only felt slightly nauseous and dizzy. I did feel a bit of pain though. At first they only gave me a little bit of pain medicine. They gave me more after making me eat the worst-tasting saltine crackers in the world (seriously why do the crackers at the hospital always taste so bad? That thing was straight up cardboard…staler than stale…yuck!)
After successfully eat the sucky crackers, walking a bit on my own, and having the IV removed (which meant more blood all over the place), I was permitted to change back into my clothes and go home. I’d say I was home around 4 or 5pm. The whole procedure and everything didn’t take long at all.
A Post-Op selfie!
Overall I felt much better and had an easier recovery the second time around. I think the fact that I had 1 cochlear and could hear made things much easier, too. I could watch movies which was a great way to relax.
I did have a set back on the 2nd day post-op though. I had to go back to Jefferson to upgrade my processor from the Naida Q70 to the Naida Q90. It was the last thing I felt like doing and my family and I didn’t think it was a good idea at all to go all the way to Philly 2 days affter surgery, but Advanced Bionics was going to be there since it was an early upgrade limited to very few people (I was one of the lucky chosen ones) and it was the only day I could go and do this, so I didn’t have much of a choice in the manner.
I did okay at first. I was dizzy, so I held my mom’s hand a lot. We took the car rather than the bus because we thought it would be easier/more comfortable for us. I did get pretty tired and didn’t want to be there, but I tried to make the most of it. The Q90 looks and works almost identically to the Q70. It is a little smaller and feels lighter though which I like. One of the biggest differences with it is that the programs are almost all automatic (the exceptions being sound relax and the aqua mic) which I like the idea of. Changing programs can be really annoying. I haven’t been in an environment too much yet where I can really see how it works, but my mom did vacuum and I noticed it blocked out the noise a bit (although I could still here it) and I could carry on a conversation and still listen to music and hear everything with it on which was cool. When the programs switch I can hear it switch over, too. I am excited to go to a crowded, noisy restaurant or something so I can really see how it works. Also, once the other ear is activated I’ll be able to unlock many more features that will allow both ears to work together which will be awesome.
Louisa, the woman from Advanced Bionics (I forget what she said her name was) and Dr. Willcox (we saw him in the hallway) all said I looked great considering I was just 2 days out of surgery. By the end of the appointment I started to get weathered and worn out and very sleepy though. It was an important appointment, but very stupid to go out and do that much so soon after surgery…
I felt okay afterwards, but very tired so I took a nap shortly after getting home. It wasn’t until after dinner when I started to get into trouble. After dinner when I stood up to throw my trash away I suddenly got very lightheaded and everything started to go completely black. I immediately sat back down and had my parents give me a drink of Coke. I took my blood pressure and it was only about 55 for a top number! To give you an idea of how scary this was — it was about the same range as my grandmother’s blood pressure right before she died. My parents were scared of course but we were nervous about calling an ambulance and going to the nearest ER since that for me is Kennedy in South Jersey. Most South Jersey hospitals are awful, and that one is definitely one of the worst. We were afraid to go there and have them mess up Dr. Willcox’s work, so we decided to wait it out and just keep monitoring my BP. I drank more soda and high-sodium energy drinks and put my head down for a bit. We did get my BP back in the 100-range which put me out of the woods, thank the Lord!
After that episode I took it easy for awhile barely doing much of anything besides sleeping, watching movies, coloring, and reading. I wanted to go back to work, working from home, that Thursday but decided it was best to just rest up so I took off for the rest of the week.
By last Saturday I was beginning to get a bit depressed. I felt useless. I wanted to go outside and do things and interact with people, but I knew I had to recover, especially after the whole BP issue. My depression was much better than it was after my first implant though, probably because I could at least hear this time around since I had one cochlear already.
I went back to working from home on Monday. It was a busy day back but it felt so good to be back in the swing of things. I did pretty well being back to work. I just got tired after lunch from my pain medicine and antibiotics, but I took a nap after work and I was fine.
I had my stitches removed on Wednesday. I was supposed to get them out on Thursday with Dr. Pelosi, but my surgeon decided to come in and do it on his day off instead because he really wanted to see me. My BP was a little low at 94. They don’t believe it was due to the surgery, but rather that I have been too relaxed. Dr. Willcox told me to be more active and that should help. I have been more sedentary than normal because I was afraid I was doing too much. Figures haha. I’m anxious to get back to the gym and taking long walks and doing more though! Getting the stitches out hurt more this time than I remembered from last time, especially the areas with the knots. There was one stitch that got my hair caught in it and that one really hurt to have taken out. I was glad to get them removed though!
I had a few stitches…
Once my stitches were removed I met with Louisa’s assistant who’s completing her residency, Alyssa, to test the equipment and to make sure the electrodes all worked. It was just like last year. I was able to hear all of the beeps which seemed like a good sign. They seemed louder this time around, too. It was pretty exciting. I got to see my new silver processor, too. It looks really cool! I can’t wait for my activation so I can actually take it home and wear it!
Thinking of my activation, there’s a chance that we may be moving the date up a bit. I have it scheduled with Paula on the 24th (Christmas Eve) but Alyssa will be there on the 23rd so we’re trying to move it up to that date. The only thing is that Alyssa doesn’t have her license yet and isn’t normally allowed to do activations on her own. But my mom and I don’t have a problem with it at all. Honestly, I like Alyssa better than Paula and Louisa. I do like both Paula and Louisa, but Alyssa has a great personality, is very professional, and seems to really know what she is doing. Even though she isn’t licensed yet, I trust her and I know she’s helped with activations and knows what to do. They said they’d have to ask the board of directors for permission and would get back to us on what they say about it.
I finished my antibiotic and pain medicine yesterday. I was also finally allowed to wash my hair for the first time in 11 days which felt amazing. It was definitely getting pretty nasty lol. It didn’t really hurt to wash it. My ear feels completely numb still. I tried to avoid really touch it or rubbing around that area/the incision though. I have a lot of dried blood behind my ear too which I’m struggling to get off.
After my shower I took a look and tried to find my incision/where they shaved my hair. They were so neat with it that I really can’t even take a picture of it because you can’t see it lol. It’s kind of underneath my hair and completely invisible. Dr. Willcox is like an artist with how he does his cuts. It’s amazing.
The first post-op shower is the best feeling ever.
Today was the best I’ve felt in nearly 2 weeks. I was still working from home, but much more with it. I didn’t take any pain medicine at all or even a nap. I cleaned the house when I finished working. I’m also back to eating completely solid food (that took awhile, even though I didn’t have a sore throat, it was hard for me to bite down/chew things for awhile because of the pressure it put on my ear).
I will really be back to my self on Monday. On Monday I’ll be back to working in the office and depending on how well I’m feeling, back to the gym as well.
I took a break from working on my book with my surgery, but I’m pleased to announce that it is almost complete. I met my goal of writing over 50,000 words in November during NaNoWriMo and have a total of over 90,000 words. I will of course need to update it with everything since going bilateral, but overall I’ve made great progress with the first draft and I’m excited to see it complete soon.
That’s about all I have for now. I’ll update after the 24th (or 23rd) after my activation! What an amazing Christmas gift and blessing this will be!
Last night I attended Advanced Bionics’ online webinar that was all about the new Q90 processor. This was really important for me since I recently found out that I am eligible for an early upgrade to trade in my current Q70 processor for the new Q90.
The webinar was very informative. The Q90 looks almost identical to the Q70 but it is smaller and thinner. It also comes with a few new features to help you to adjust to different sound environments and to block out distracting background noise better. It comes with the option of using a smaller battery that is about half the size of the smallest battery used by the Q70, but all of the sizes used with the Q70 are still compatible with the Q90 as well. The battery life is the same in the Q90 as it was in the Q70. One of the biggest advantages with the smaller battery size option (other than the obvious comfort) is that it will fit inside the AquaCase better.
The three new programs offered in the Q90 are the AutoSound, SoundRelax and EchoBlock.
The Auto Sound feature adapts automatically to the environment you are in. It helps you to better manage noise for more comfortable listening. Sound Relax makes sudden sounds more comfortable to hear. Advanced Bionics gave the example of a golf club hitting the golf ball or dishes clanking together. These sounds can be a bit annoying for a cochlear implant user, so with the automatic Auto Sound feature, this noise is softened a bit to be more comfortable. It doesn’t affect alarms or safety sounds though, so you won’t have to worry about missing something important with this feature. Lastly, EchoBack is the one program that is not automatic. EchoBack allows users to hear better in noisy environments.
The Q90 makes me really excited about going bilateral in less than 10 days. I liked hearing about how there were some features that would be only available for bilateral cochlear implant recipients like the StereoZoom feature. There will be features that will allow users to stream sounds through both cochlear implants. They will work simultaneously together to support each other. This will help to create an overall better listening experience.
I asked one of the women doing the webinar if I would be receiving the new Q90 when I received my second implant on November 3oth (It’s not widely available yet, I’m just lucky to have been chosen to upgrade my Naida Q70 from my first implant for it ahead of time) and she said yes so I’m very excited about that.
Overall the webinar was very informative. I’m excited about the new Q90 processor. It doesn’t sound like it will be drastically different from the Q70, so it should be easy to adjust to.It sounds like it will help to give me clearer sound and an even better listening experience (if that’s even possible).
It’s been a crazy, whirlwind of a week.
Whereas everything with my first cochlear implant seemed to happen in the blink of an eye and get approved overnight, things with my 2nd implant haven’t been quite as easy.
You may recall a few weeks ago I blogged about my evaluation for my second implant and how I scored a bit too high under the best aided conditions. We set up a tentative date of surgery of December 14th. This past week, my mom contacted Jefferson to check the status of the insurance, but they informed us that there were no updates; it was still processing. We didn’t expect to have any answers since Dr. Willcox lead us to believe a decision would be made at the last minute, (most likely not until December 11th…the Friday before the scheduled date of surgery).
However, God works in mysterious ways…
A woman in the pre-cert department decided to keep checking in on insurance and trying to put it through. I am unsure if it was a mistake or if it was done intentionally, but on Wednesday, November 11th, she told the insurance company we were scheduled for surgery on Monday, November 16th. We would need an answer by Friday. This put extra pressure on the insurance company to make a decision.
Needless to say, the next few days left me feeling a bit anxious. I couldn’t wait for Friday to come around to have my answer. I prayed faithfully every day, asking God to give me patience and understanding of whatever the verdict may be.
Patience is something I had difficulty with though once Friday came around. I wanted to know immediately!
I kept texting my mom throughout the day on Friday asking if she had any updates, but she never did. She called Jefferson and they said that there was an issue with the paperwork…they ended up not receiving them until that morning for some reason. I am unsure what happened with that as we were lead to believe all of the papers were sent several weeks ago after the evaluation. My usual audiologist wasn’t there though, I had a new one. I’m thinking maybe that’s where the issue arose — perhaps a lack of communication? Or it could’ve been something with the insurance company. It’s not clear who was at fault.
Regardless, the girl working in the pre-cert department told the insurance company that we needed an answer. We were scheduled to go into surgery on Monday…we had to know. So the insurance company said they’d have an answer for us by 5:30pm. This was a whole half hour later than the office at Jefferson was even open, but the woman in pre-cert said she’d stay late. She came in to work late anyway.
I stared at my phone like crazy. After work I had to go to the grocery store with my dad. It was about 5 when we went. I told my dad to make sure the sound was on on his phone in case my mom called him from work with news. But it never rang.
When we got back to the car it was 5:21. Still nothing. I began to get disappointed thinking we wouldn’t hear anything because even if the insurance company came up with an answer, Jefferson would be closed so we wouldn’t know until Monday.
I got home and continued to stare at the phone. 5:30 rolled around. Then 5:45. When the clock read 6 I was ready to give up and assume that either it wasn’t approved, we wouldn’t have an answer until Monday, or both.
Then the phone rang at 6:01. I picked up on the first ring, totally surprising my mom who is still not used to the fact that I can hear on the phone.
And the verdict was….
INSURANCE WAS APPROVED!
My surgery isn’t really going to take place on Monday, but soon. Everyone at Jefferson was gone by the time it was approved (except the poor pre-cert girl who called) so we will have to call on Monday to reschedule surgery (and first move up the pre-op appointment to go over anaesthesia and all of that stuff). I know that Dr. Willcox does surgery on Monday and Thursdays, so we’re looking at the earliest date being Thursday, November 19th. I will know for sure on Monday though. I want to get this done as soon as possible!
My other exciting news is that Advanced Bionics has a new processor out, the Naida Q90. My audiologist has already contacted me asking if I’d like to come in for an upgrade. I can just trade in my current model, the Naida Q70. The Naida Q90 is supposed to be pretty similar but offer better sound quality especially in regards to noisy environments. It’s also supposed to be a bit smaller.I am doing a webinar on Thursday (unless of course I am in surgery that day haha) where I should learn more about it. I’m not entirely sure if I want to go ahead and trade in my current processor for it since I have been doing so well with the one I have already, but regardless it is exciting and I’m looking forward to learning more about it.
I have more exciting news too about something else that is happening in my life, but I can’t talk about it openly yet. I just ask that everyone keeps me in their thoughts and prayers.
Yesterday was quite the day.
I had my evaluation at Jefferson for my second cochlear implant. The day started out pretty well. I was off of work so getting to sleep in a couple extra hours was definitely a perk for one. For two, before I even left for Jefferson, they called me to let me know my insurance was approved.
However, there was a slight catch…
I had to meet the criteria.
I’ll be honest I completely ignored the part about meeting the criteria. After all, Dr. Wilcox did say during my last appointment that it was just a manner of “Crossing our t’s and dotting our i’s”. I knew that I was deaf in my right ear every bit as much as I was in my left ear that I already had implanted. I knew that none of this has changed in the last year. I knew that I didn’t benefit at all from my hearing aid (before I broke it I mean). There’s no reason why I shouldn’t have been a candidate…
However, they left out the part about meeting the criteria being based off of how well you do in the best aided conditions and that for me that would mean how well I do with one cochlear already on…
I had a new audiologist for my appointment since my usual one, Louisa, was on vacation. The audiologist’s name was Paula and she was working with her extern, Alyssa. She was a lot different than Louisa, but seemed nice enough. She said there was no guarantee I’d qualify, but we’d test and see.
I had to do a series of hearing tests that were identical to the ones I did last year for my first cochlear implant evaluation. First they tested me for being able to hear the beep with my cochlear and a hearing aid on (they had a hearing aid for me to borrow). Next they tested me with my cochlear and hearing aid on for sentences without background noise. Then they did it with background noise. The last tests they did were without my cochlear on and for both beeps and sentences.
I did okay on the tests with my cochlear. The cochlear in my left ear certainly helped,but I still didn’t have “perfect” hearing. I noticed that I couldn’t hear from my right ear. Having the cochlear in my left ear helped me with word recognition a bit, but no so much for general sounds especially softer ones and high-frequency.
I got a 73% for the sound and 99% on my word recognition with my cochlear. However, once they took my cochlear off I scored a 0. I am deaf in my right ear. I can’t hear anything at all. Excuse my language, but the direct quote from my audiologist regarding my hearing (or actually lack thereof in my right ear) is that “You can’t hear shit”.
The blue lines show my left ear without my cochlear. The red circles are my right ear. The S’s are where I am with one cochlear implant. What a difference! I can only imagine how great I’ll do with 2 implants if I can get insurance to approve it!
Unfortunately, the FDA says that in order to qualify for this surgery, I have to score a 60% or below in the best aided conditions. Since I score 73% I did too well. That doesn’t mean though that I can’t get the surgery. I had to have Dr. Wilcox and my audiologist, Paula, submit a pre-cert. What this does is explains the test results and why they still believe I would benefit from getting my second cochlear implant and why they recommend it.
They also had me fill out a quality of life survey to submit to the insurance company. This tells the insurance company a little bit of information about how my hearing loss affects my daily life. It asked me about how I perform in social situations, what my dating life was like, how I viewed and felt about myself, etc. I explained how I sometimes skipped social events if I thought it would be too awkward or too loud and I wouldn’t hear well enough. My love life? Yeah my hearing has definitely mad an impact on that. I was in an abusive relationship in the past where my ex would yell at me and make me feel bad for my hearing all the time. My most recent ex was pretty good with my hearing (FYI, that guy I previously wrote about a lot? We just broke up. But that’s another story), but that’s not usually how it works.
Dr. Wilcox went ahead and scheduled my surgery. He said this would force the insurance company to act and make a decision about whether or not they’d cover my surgery. However, we had to schedule it out far in advance (not as soon as last time — last time we scheduled it exactly 1 week after my evaluation!) to give them enough time to make a decision.
So my (tentative) date of surgery is………………………………….
December 14th! If this date remains and insurance is approved I will have my implant just in time for Christmas and will have my stitches out (and be able to wash my hair — thank god lol) the day before Christmas Eve. The receptionists who scheduled it said if insurance approves my surgery before that date we can always move it up though which is what I plan on doing of course.
I also have to go back for pre-testing on December 2nd like I did last time. Exact same procedure.
I didn’t pick out a color for my cochlear or what accessories I want yet, but if it gets approved I will. I’m leaning towards silver. I definitely want a different color from the caribbean blue that I already have. I can never match or be normal of course lol.
I’m feeling a wide range of emotions in regards to my testing. On one side I’m disappointed because I thought for sure I’d be eligible with no questions asked and schedule my surgery right away. But on the other hand I feel blessed to have scored as well as I did on my test. To have 30% hearing is a miracle to me. 73% is something I never imagined I could possibly have. If this is the most I’ll ever have, that alone is a true blessing.
All that I can really do now is just pray and hope for the best. I put it all on God’s hands and trust that he’ll lead me down the right path. It’s as my pastor tells me, the Lord already has the answer and knows what is best for me and he will reveal all of his incredible plans for me over time.
Please continue to keep me in your thoughts and prayers during this time. I do still have a good feeling about it because I know my surgeon is a strong advocate for it. He definitely supports me getting a 2nd cochlear implant and I know that he was making sure to carefully word his pre-cert for the insurance company. Also, my surgeon is a Christian that has called me on a Sunday before my first surgery in the past to pray with me. I know that prayer can make all of the difference in the world right now.