24 Hours Post-op

I am still under the influence of drugs so any typos will just have to be overlooked as well as anything crazy I might say. LOL

My day started about 2:15AM yesterday. A shower and head wash with hibiclens and out the door by 3AM. An early morning but so worth it to not fight traffic and be back home a little after lunch. Everything went really well at the hospital (as far as I know). It's now official, I am bilaterally bionic! Now that I have two computers in my head, I wonder if I will become smarter? LOL (no need to answer that!)

I have had some nausea but not nearly as bad as last time. I am still a little off balance but not too bad and make sure I am holding on to something whenever I get up so I don't fall. I am not going to rush things this time to get back to work. I hope to go back next week but will just have to wait to see how I am doing. The "pressure bandage" is not tight like so many have complained about. I guess I got lucky both times because mine is loose. It will still feel much better when I can remove it tomorrow. Tinnitus was bad right after surgery but again not as bad as the first time. By the time I left the hospital, it was down to a dull roar. Today that is better so far, just comes and goes a bit but not too bad. I have a little bit of jaw pain but it is tolerable. I am going to spend another lazy day today, just in and out of bed all day. Tomorrow should be a better day to remove the bandage and shower! That will be the turn around day I do believe! More to come...

Here I Go Again!

I can hardly believe that on Tuesday I will receive my second cochlear implant. When I got the first one, I had no idea if I would be able to get a second. It took SO long to get the first one that when the chance came to get the second, I jumped on it with both feet! I have not even gotten the first one sorted out yet and now I am going to throw a second one in the mix. LOL I'm not really sure if this is a good thing or bad thing but the way I see it is they will learn together. There are many that get both at once so it is possible, I just don't know if I will get it figured out or not.

I had my pre-op appointment today and all went well. Everything is done and I am to arrive at the hospital at 5:15AM. I will be the first surgery of the day. Even though I have to leave the house at 3AM it is a good thing. I should be home around lunchtime. I am a lot more nervous this time and I'm not sure why. I'll be back next week to let you know how it goes!

Back On Track

I had a very exciting and interesting day. First of all I got a letter last week from the insurance company saying I was denied on my second surgery because it wasn't medically necessary. Not to worry I am told, this is standard procedure. One simple HINT test (hearing in noise test) will prove that it is. Ok, off to Tampa I go today to get this test done. My audie is not there on Friday's so I saw someone else. With just my implant and no noise I scored 40%. To be approved, I have to be below 50% so there was no need to test in noise. This surgery will happen and they tell me there will not be a problem getting it before my surgery date of 5/22.

I think I mentioned my last test I scored 69% so this tells you just how bad my mapping (programming) was. While setting up for the test, the audie today asked about a few things so I began to tell her I was not happy with how things were going. I know I am new to this but still I know when it is not right. We finished the testing and my new audie took me in the room, got my file and reprogrammed my processor just like I asked her to. It sounds SO much better! I LOVE my new audie! She has the knowledge but is willing to listen to me about what I like/don't like or what I hear/don't hear. She even set up a music program for me which has improved music 100%! Did I mention I really love my new audie?

Eighteen days until surgery! WOW! I waited so long for the first one that it doesn't seem possible I am doing it again so soon. I am very excited and know two ears will be so much better than one. I had no real problems with the first surgery but.... (there is always a but). I am nervous this time! Pre-surgery jitters are normal but I wasn't at all nervous the first time.

Time For An Update

I had another trip to Tampa this week. This time to install a new program just approved by the FDA called Clear Voice. Clear Voice is amazing! This program is designed to help hear better in noise. This program can actually tell when there is background noise you don't want to hear from things you do want to hear. One thing that everyone that has an implant has had to deal with is very loud road noise. With Clear Voice road noise is now gone! Before Clear Voice, road noise was awful and don't even think about rolling down a window. Now, with the window down, I can hear without the noise. I am still on a roller coaster of sorts. I feel like I understand very little about how this complicated implant actually works. I do trust my audie and I know she knows what she is doing but things are just not right either. It's frustrating because I don't feel like she listens to me. She has in her mind what she is going to do and does it no matter what I have to say about it.

A couple of examples of this. Before she started program changes, I could hear speech perfectly. Since then I have yet to get back there. One mapping I got was so bad I could no longer understand speech at all and had to go back to get it better. She made some changes which did help but I know I am not where I should be. Then this last visit with Clear Voice, it comes in 3 settings which are low, medium, and high. Most people I have talked to get to try the three settings to decide which they prefer. She decided I would get medium and that was it. Medium works great in the car and probably in a noisy restaurant (I have not tried this yet) but I don't like it at work even though I work in a noisy place. It does it's job but I feel like it is cutting out sounds I want to hear. I am not like everyone else, I like being able to her everything, noise and all. I really think I would rather have the low setting for everyday. I also asked her about raising my IDR (input dynamic range) but again she says most don't like it. I am getting very frustrated because I do not know how to get across to her that I am different, I want MORE! I may very well not like it but I think she should let me try it if I want to. I ended up telling her that I would leave it up to her to decide when I am ready but I do want to try it. I know others that were implanted around the same time that got it much sooner and loved it. Why can I not try these things?

After she was done with my mapping, I went to visit the surgery scheduler. I am now scheduled for my 2nd ear to be implanted on May 22nd!! Just over a month away and I can not believe this is happening so soon. I had to wait such a long time for the first one, this is just unbelievable. I am really hoping the 2nd implant will help me more and am considering finding a different audie after I get this one activated. I really need someone that is willing to work with me and help me achieve the best I can be. I don't feel like I am getting that. She did test me in the booth for the first time since activation the last time I went and I scored 69%. True enough that is a long way from 0% I had before but I should be much better than that. Right after activation I was scoring in the 80's on tests I did online. These tests are much different than the booth test but I just know I should be doing better.

It will be a struggle for awhile longer until I get things right but I know I will eventually get there. I am being VERY patient and will wait it out. Having said all of the above, I am still thrilled with my implant. Advanced Bionics has given me more than I could have hoped for. I did hear perfectly at activation and I know I will get back there again. Patience, patience, patience.......

Finally Figuring Things Out.... I Think! :-)

Well, it was another trip to Tampa yesterday and I must say it was a great day! My audie (God bless her!) explained a lot of things to me which really helped me understand. I won't bore you with all the details that you probably don't care to read anyway but trust me, it was a great day. I went in the dreaded booth for the first time since my activation. I have always hated that dang booth because I always fail so miserably. The last time I was in there was right before surgery and I got a whopping 0%. I was expecting simple sentences which is what I usually got but not this time. It was quite a mixture. Both male and female voices, talking fast, saying long sentences! The first one shocked me and I only caught the last word then I was paying more attention. LOL I ended up with 69% and I am thrilled with what I have achieved so far. Things are only going to get better!

When I got done with the audie, I had to wait to see the surgeon for the last time.... maybe? No, everything is great with my implant, I have no problems there. He is ready to do my other ear! My insurance goes into effect on April 1st. He says I need NO testing, all I need to do is set up a pre-op appointment and set a surgery date! I am going bilateral!! He actually wanted me to do that yesterday but I decided to wait. I want to see what my out of pocket expense is going to be first and be ready for that. What was so neat is I heard my surgeon's voice for the first time and I understood everything he said! I can't begin to tell you how much that means.

It's almost been 2 months since my activation. It feels so good to think about how far I have come in that short time. At work is where I can tell the most changes. I work in a noisy factory. Lots of machinery etc. I really thought all that noise would bother me but I am happy that I like hearing everything, noise and all. When I was first activated, there were lots of things I could not hear at work. It was amazing to me that I could hear quieter things like a foot peddle but the loud alarms I did not hear at all. I could not hear the PA system or the break bells that ring. Little by little things are added everyday. I can now hear the break bells and the PA system. First I just could tell someone was saying something on the PA system, then I was understanding words here and there. I find myself understanding more and more everyday. It is incredible how this works!

Being able to communicate with people again.... there are no words to describe this. A lady that wrote a book about her experience with hearing loss said it was like being in solitary confinement, the worse punishment for criminals. That is SO true! I have really been given my life back...

My Brain Kicking In?

It will take me some time to figure all of this out. This is so complex it boggles my mind!

I am beginning to think I was over doing it a bit. Maybe? Not really sure but I am going to slow down on the rehab a bit because I "think" my brain is getting it now! LOL My brain and I are learning together I guess. :)

Here is what has been happening the last week or so..
I went back to my audie on the first. I was frantic by the time I got there because I could no longer understand anything anyone said. Everything was very distorted. She worked her magic and it was better. Not as good as I thought it should be (what do I know?) but I was able to understand what was said. I can work with this. She set me up with 3 programs. Program 1 for everyday. Program 2 for noisy situations and program 3 for trying the phone with direct connect. Program 2 is for work since it is so noisy there and the rest of the time I would use program 1.

I left her office and stayed on program 1 for the remainder of the night. The next morning I put it on program 2 for work and all was good. Once I got home is when things got weird. I tried to go back to program 1 but it was painfully LOUD! I settled for staying on program 2. The next day, program 2 was loud so now I am worried. I do have a volume control and had to use it to lower the volume. I spoke with my audie via email and she said to use that and she will see me in a couple of weeks, my next appointment. Last night I noticed a change! This time the change was good and voices became clearer. I am really getting excited about this! I have not done any rehab for several days. There was not much sense in trying music when I was not doing so great anyway. Today at work I didn't use program 2, I stayed on the regular program and it was fine at regular volume.

So here's the plan for the next couple of weeks..
I am going to slow down. I think I have been trying too hard, too much and have been straining my poor little brain! I have been told many times by many people that your brain has to adapt/learn to hear with the implant. I think I am getting it now. I am so thankful for the hearing I now have even though it is not perfect, it is a miracle I have been blessed with. I can't wait to see what tomorrow brings!

I'm Learning!

I now know more than ever why everyone says you need the 3-4 P's. Patience, practice, persistence and prayers. Some say 3, I say 4. When I was activated and voices/speech was so good, I thought "I've got this". I am one of the lucky ones that hit the jackpot right away. Which is true but not so true too.

The first couple of visits to my audie after activation were only for volume increases. As my brain got use to hearing again, the volume would drop so it had to be boosted up some more. Once the volume settles down, that's when the journey really begins. My first mapping (adjustment) I was not happy with at all! I felt kind of rushed at the audie's office because she was also setting up my new processor so there wasn't much time for the mapping. She set up 3 maps for me. Program 1 was for everyday use. Program 2 was to use in noisy situations and Program 3 was for direct connect to use for my cell phone/iPod.

I have read many times that it sometimes takes time to get use to a new map so I struggled with this map for 2 weeks before I emailed my audie asking for help. I was back in her office within a couple of days. At that point I could not understand speech at all unless I was lipreading, everything was so distorted. She worked her magic and I was "good" again. Here is what I have figured out so far..

If I have not adjusted to a map within a week, contact my audie!
My brain has to adjust to the changes so as this happens things should become better. As that settles in, the brain wants more so that is why I have to go for more mappings. It does not stay the same.

Patience, patience, patience! I am learning! This is definitely a journey with lots of bumps in the road. I am so blessed to have the people of HJ to explain things to me. Without them, I'm not sure I would make it. Don't get me wrong, I am beyond thrilled to be able to hear again but understanding the process/progress helps more than I can put into words.

Now for what I am hearing...
Everyday is a new adventure wondering what I will hear today that I did not hear yesterday. New things are added all the time. It is so amazing to me how this works. Voices/speech is good again. I can hear without looking which is wonderful! I am hearing the television but still need closed captions. I can hear some words but not all but it is getting better all the time. I look forward to the day I can watch without closed captions and I know that day will come just not sure when. I have been working on music which still sounds bad for the most part. Some songs I can recognize but lots of the instruments are missing. Some vocals are there and others not, this will take lots of time but I will keep practicing listening and get there eventually. Listening to the same song over and over, I do notice it gets better. I can hear the birds now and last night I heard those noisy crickets for the first time in many many years! I think it is the first time they made me smile. LOL

I have so many gadgets now that I am trying to figure out. Technology has advanced and left me behind while I was in my deaf world. I bought an iPod to work on music. It sat here for over a week before I was able to figure out how to get it to work. I still have a lot to learn about that little jewel. I upgraded my cell phone so I could use direct connect to try to use the phone again. The direct connect will send the call directly to my implant. I tried it only to discover I could hear the caller but they could not hear me. Now how ironic is that? Through asking lots of questions I found out I needed to purchase a bluetooth. The direct connect has no mic is why they could not hear me. I have not figured out that new toy yet but am going to give it a try this weekend. I purchased one that was recommended. It is about the size of a AAA battery and also has a FM radio so once I figure out how it works I will be able to listen to music with it too. I am really straining my poor little brain!

The past few weeks have not been good for me. I wanted to post updates but also did not want to be negative. That is why there was only short posts along with the lack of time/energy. I never want anyone reading my blog to feel that I am not happy with my decision to get this implant. It is absolutely the BEST thing I have ever done for myself. It will take lots of work but I am willing to do whatever in necessary to get to where I want to be... a hearing person again.