Monday, February 20, 2012

Activation date scheduled

Just a short post... I have my activation date scheduled for May 23rd! This is the day that the processor is turned on for me and find out what I do 'hear'.

The countdown begins til I get activated, where I will hopefully HEAR.... 3 months 3 days... and counting...

Thursday, February 16, 2012

Surgery is scheduled!

I met with the surgeon yesterday. We went over some questions I had and we both agreed that cochlear implant would be ideal for me. I did find out that I will NOT be able to go bilateral right off the bat as previously discussed. Medicare has changed some things and the chances of me getting a second implant is slim to none. That's ok, I will just move forward with the one implant for now and hopefully in the near future I can work to try getting the second implant. In some ways, this actually gave me a sigh of relief. I was really apprehensive about going and doing both ears at the same time, even though I knew it would be for the better to get it out of the way now; one surgery, one recovery, etc. But that silence for 4 or more weeks was what was bothering me. And now, I know I don't even have the option of going bilateral at the moment, I'm relieved in some way that I know I'll still be able to hear with my better ear that I can wear a hearing aid in. But I'm also somewhat mixed up in emotions because I know eventually I'd like to go bilateral. I'll just have to go through surgery and recovery all over again if I'm able to explore going bilateral at a later date.

Surgeon expressed that the fact I was not born deaf and my hearing loss has been progressive over the years, he feels I will benefit very well with a cochlear implant. Especially since I do have 'speech memory'. He let me know that there are certain signs that he has learned over the course of the years he's been doing cochlear implants that lets him 'guess' how a person is going to do with an implant. And for me, he expects that I will do excellent with it. And he was very pleased with my decision to go with Advanced Bionics for my implant. Told me I made an excellent choice and did my homework. So that made me feel even better about my decision for choosing AB.

So anyway, surgery is scheduled! April 26th is the day. I swear when the scheduler gave me the date for surgery, I felt like I lost my stomach. (You know like when you're riding a roller coaster, you reach the top and are ready to go down, that kinda feeling.) It was kind of like 'wow this is really happening'. I'm sure my feelings about this will get more 'scared' the closer I actually get to the surgery date.

I have quite a few things to do prior to surgery to get taken care of. I have to get an MRI done which is scheduled next week Friday. I need to get into my doctors office for a couple vaccinations the surgeon wants me to have soon so that the vaccinations can start 'working' prior to my implantation. Persons with cochlear implants are at higher risk for meningitis. These vaccinations will help curb that from happening. I also have to get scheduled for pre-op clearance from my family doctor, meet the surgeons nurse one week prior to surgery, and meet with the cochlear implant audiologist again to choose the processor I want (as well as some of the accessories).

I'm really glad that my surgeon does not require psych evaluation done for the cochlear implant as I have heard some people had to have a psych evaluation done. I'm sure I would fail that miserably! I don't like being asked questions and be evaluated on your answers... it makes it feel like 'trick questions'.

Until next time...

Sunday, February 12, 2012

What I look forward to after getting implanted and activated

I've been asked several times since I've been considering a cochlear implant, what do I look forward to after I'm implanted and finally activated? There are many answers to this, but the first and foremost answer would be to be able to hear my kids as they grow, I do NOT want to have a silent world and not be able to communicate with them. It is apparent that my hearing is degrading fast and I need to do whatever I can in the realms of my world to make that happen!

So in no specific order, I will list what I am looking forward to:
  • Watching TV without relying on captions! There are times when I'm watching the news, segments are not captioned because it is a live feed or whatever. So I miss out completely on what was being said.
  • Listening to music and actually hear the words. I have always just based my choice on music by hearing it on the radio, if I liked the 'tune' of what I was hearing, I'd investigate what the song name was, who is was sang by and then I'd find a way to get the lyrics. When I was younger, I used to record songs from the radio on my tape cassette recorder and get the lyrics and replay the song over and over again, reading the lyrics and memorizing them that way.
  • Being able to communicate with my husband without him having to repeat himself several times. He has a speech impairment that it does make it difficult for me to communicate with him. LOL How in the world did we end up together? A hard of hearing person with a speech impaired person? Ironic, eh?
  • Using the phone again and not having people repeat themselves so much. I dread using the phone now for fear I'm not going to hear the person on the other end, but I do it anyway when a situation presents that I cannot just have my husband or another family member/friend help me take care of.
  • Being around water and hearing my kids and other enivronmental sounds! Whether for safety reasons or for excitement.
  • Date night to the movies! I want to go to the movie theatre and enjoy the movie because I can hear!
  • To be able to attend a chuch service and actually HEAR what is being said! I have always felt spiritual, but because of my hearing loss, I've never been able to attend a church and understand the service.
I am sure there are some other small things that I look forward to, but these are like the biggest things that I hope to acheive with getting a cochlear implant. My expectations/goals might be set high, but I'm not going to expect that I will be able to do all of the above. But I will work diligently to learn how to hear my world that best I can. All things are possible, without dreams, nothing can happen.

I want to mention one thing that annoys me...  people tend to think its VOLUME that I need increased to understand something. So they automatically say 'well we can turn up the volume' or 'we can get a surround sound system to help you'. It's not that at all, its clarity and the tone. I try to remember that unless you have hearing loss yourself, people will not understand this. While I can lip read exceptionally well, it is still very hard to be in a meeting type atmosphere and understand anything at all. I struggle during family get togethers to understand everyone. And I rarely recognize when someone is actually trying to talk to me until after they've said my name a few times in a louder tone. In noisy environments, its difficult to communicate with someone in person even when they are right in front of me because I cannot block out background noise to understand the person in front of me. The phone, forget it! I have had so much trouble with the phone for the last couple years, I don't even try anymore.

I'm hoping going through with a cochlear implant will open up my world of hearing. It is NOT something where when the processors are turned on that I will hear immediately (maybe I will, but its rare). Getting a cochlear implant does not mean that I'm no longer hard of hearing/deaf, I will always be deaf... just the cochlear implant is a tool for me to help me understand speech. It is not a magic wand that restores hearing. I will be hearing with my brain, which takes practice and perhaps once my brain starts to comprehend that speech I'm hearing, it will work like magic. It is something I will have to work at. While this all takes time and patience, I will need the people on this journey with me (family & friends) will also need to be patient with me as well.
At the end of the day when I go to bed, I will have to take the processors off, I will be deaf and in complete silence! I worry about not hearing while I'm sleeping because of my kids. I know I have my husband that can help me out in this, its just I feel as in a role as a mother, that I need to be attentive to my kids needs as much as possible without the reliance of someone else. This will probably be one of my biggest struggles. But I hope that by knowing this, that I can prepare myself mentally and prepare my husband to know that he will have to be my ears for me at night. I will most definitely need to get some assistive device that will wake me up to get Jared ready for school. I need to look into those options and check into the costs. Will probably be something that vibrates under my pillow or turning my lights on and off... I do NOT want my husband waking me up every morning by jerking me around. I would seriously get highly irritated over that. It has happened when my hearing aid battery has died and I don't hear the alarm, he shakes me and while it does wake me up, it really startles me. I end up confused til I realize whats going on and then I'm irritated by the way I was woke up. So thinking that I need to be looking for another option that will wake me up when needed.

    Friday, February 10, 2012

    Talk about superior customer service!!!

    Well, after some awesome customer service from Advanced Bionics, the company that I plan to use for my cochlear implant, I'm even more happier with my decision! They have wow'd me to no words to explain how awesome they are!

    For the past month, I have met some really awesome folks on a forum that was started by Advanced Bionics. The people I have met on this forum have helped me along thus far by answering questions and giving advice. Ultimately have given me the confidence that I can go through with this cochlear implant without as much fear as I had at the beginning of my journey to making a decision to get a cochlear implant.

    I have been looking for a way to explain to my son who is 5 years old about what I am going to be having done. But I wanted to do it in a way that it doesn't make him worry about me and freak out. Anyway, I was told about some material Advanced Bionics has for kids. I was able to get links to a printable coloring book and a video to show my kids. I was also told about a doll, Bionic Buddy and his sister Melody. I didnt get a link to any information in how to possibly get these dolls. So I figured I would chat with a customer service rep at AB's website. The lady I talked to let me know the Bionic Buddy and Melody are given to all pediatric implantees. I explained to her that I just wanted to have a way to expose my kids to this without it being frightening. She then asked me for my address and phone number. She is sending along 2 coloring books, a DVD and a mini Bionic Buddy as well as a mini Melody! And get this, today is Friday... she says I should have this stuff delivered by FedEx no later than Tuesday! Are you freaking kidding me?! That's like super fast! I'm excited to be able to show my kids this stuff! I cannot wait!

    So yep, I'm officially impressed with this company with their customer service! And from everyone else that has AB from the forums, raves about their experiences being just as superior, I definitely feel like I have chosen the right cochlear implant company for me.

    Thursday, February 2, 2012

    Unilateral or Bilateral?

    So I've been reading a lot on cochlear implants. I've been trying to decide whether or not I should just suck it up and go bilateral right off the bat and be deaf for 4+ weeks (4 weeks to activation from surgery, then however long it takes for me to start comprehending speech). I'm only thinking of this for insurance purposes. I'm finding that Medicare is pretty strict on those that request bilateral after they've already been implanted with the initial implant. Some get lucky and are approved, others not so lucky and end up having to go through the appeals process. The more I read, the more I keep thinking I really don't want to be 'denied' to have to fight to get what I want. Although, I'm sure being diligent in the appeals process, I would eventually get the approval.

    My original plan was to just implant my weak ear, so that during the 4+ weeks, I at least have the capability of still hearing with my hearing aid in the good ear. Can you just imagine, complete deaf silence for 4+ weeks?! I'm not sure mentally I could handle it. Yes I can lip read extremely well, but to explain to my 5 year old that I can no longer hear him and try to lip read him would be very difficult! Heck would be difficult with my husband too because I've always had a hard time lip reading him as well. My 2 year old, she doesn't talk yet, but by the time I get this surgery done, she could be. And I would hope she would not decide to start talking while I'm completely silent.

    I do know one thing for certain, I am anxiously waiting my appointment to meet the surgeon in a couple weeks! I will talk to him about my thoughts for unilateral vs. bilateral then. Perhaps he can give me some enlightment and I can feel better about my decision of what I'm going to do. Meanwhile, time just is NOT getting here fast enough. I want to get things rolling and I'm sure its going to be about a 4-6 month wait for surgery. I think that waiting is going to be the hardest part for me. Lord, please grant me the patience for this!!! I'm finally getting feedback from people that have gotten the Neptune and reading their updates, I'm feeling like 'I WANT MY NEPTUNE NOW!'. I definitely am not trying to hurry my life on by, this is just something I want so badly to be able to hear better someday, that its already becoming to feel like a lifetime before anything happens.

    I'll write another blog post later about what I'm looking forward to getting a cochlear implant. Hopefully what I'm looking forward to is not out of the norm for expectations. I will have to make sure I work hard to achieve the goals I want to come from my cochlear implant.