4 more months til my wedding day!  I'm all prepared and getting my last map soon before the big day! Had make up trials and hair trials too!

I did get an interpreter for my wedding.. I figured with everything going on that I am going to hear that day is going to completely exhaust me out. I thought having an interpreter for someone does the speeches will help me not to concentrate so hard.  I want to enjoy my big day and have so much fun!

Here is our engagement photo taken by our photographer who happens to work for the Hearing Loss Magazine for HLAA!

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I know its been forever since my last post but will update my blog eventually.

I did a comparison of my audiograms so far to this point and thought it would be great to share with everyone.

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I went to programming without my family.... just me and my fiancée. Steve, my audie likes my progress so far... I told him that I heard that sound at AuBonPain that far away.....

He did mapping I think, where he finds the level of tolerance in each decibel. Then about 10 minutes later.. he turns it on... OH MY GOSH! It sounds SOOOO MUCH BETTER! But stronger than a hearing aid.

I was a happy camper! Steve also added a 1X magnet in the implant.. removed the dummy and added the extra magnet since my hair is heavy and still a little swollen. But it was my heavy hair that was knocking it down a lot.

As we left the hospital, it was raining out... I whipped on my rain coat.. and walked outside JHH. Hmm.. what am I hearing now? It was the raindrops on my raincoat... WOW.... My first sounds with the CI! It was so pleasant to hear something so nice like that. Thats a nice way to start my learning experience.

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The first week was rough. Everything I heard did not make any sense. I'm starting to wonder if I made the right decision here. I know it may be too soon. But I'm sorta lost here. I was all excited about activation and can I hear? Well yea but it don't sound right....just a bunch of freaking noise. Come on here.

Second. My implant keeps falling off when my hair is down. Grrrr...emailed my audie this week and he said that he can add another magnet. Whatever that means.

The day after I got activated, I went to Ocean City for the weekend. I heard a few things but they weren't clear. The ocean, the traffic and a loud bang. That's it! What a weekend.

Tomorrow is my 1st programming. I hope things sound better after I leave JHH tomorrow.

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You heard it right. About 16 more hours til activation of my Advanced Bionics Cochlear Implant! Will have some videos up soon!

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Yup. You heard it right, 8 more days til activation. I'm ready to see what I can hear.

On the other hand. I'm still in very little pain. Some days are good and some are bad. The implanted side has scalp soreness. But it's not even close to the implant. I don't know if anyone else has experienced that before.

I can feel the shape and the actual implant itself. It's sorta wierd to have something underneath my skin. I'm still trying to get over the size of the bump.

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The post-operative visit with Dr.Limb went very well. He was pleased with the outcome of my surgery. No complications during surgery. Also said that I had less bleeding than normal.

Here is a photo at the hospital. You can see that my face is swollen on the left. Surgery was on Tuesday morning, this photo was taken on Friday morning... not too bad 3 days post-op.

But I did have some dizziness that day and a few bloodsugar drops as well. But it was my first day out...did some errands with mom and picked up a big bottle of Tylenol for pain management for the next week or so.

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Post-Op was an challenge for me. I had problems with pain management during the first phase of recovery.

I remember bits and pieces coming out of the OR and the first hour of recovery.

I vaguelly remember seeing my surgeon, Dr.Limb saying that everything went well. Also his sidekick visiting me as well. I was so out of it during that time.

The nurse kept asking me if I was in pain. Scaling 1-10, I was always at 8 for a few hours maybe. But after a few times of waking me up, one of the nurses told me that in order to see my family and fiancée, it needs to be below 5.

Ok. Thanks SmartyPants, I just found a loophole to get outta there faster. The next time she came up to me and asked me what my pain level is, I told her it was between 4-5. Found my ticket home.

During that time, my pre-op nurse, Victoria visited me. I thought it was so sweet of her.


My mom took a picture of this photograph of Victoria that was on one of the walls in the pre-op area. She was so nice to me and I was scared shitless. She kept telling me that she would take care of me. She did.

Alrighty, back to the subject; another nurse comes by and prepares for me to WALK over to the second phase of recovery. And I was a little dizzy at the time. (I'm thinking how in the heck am I gonna get there safely??) So, I gently asked the two nurses if they could bring the chair to me and I'll hop on it. I was still in my sleepy stages during this time.

Got over there and got a spanking brand new nurse. Much nicer than the other one. She brings my family and my fiancée. Then my MOTHER starts snapping away her photos with her phone. I'm like what is SHE doing?!?! From the pictures below, you can obviously see that I was not in any mood to smile.



Told ya!

But here is a lovely photo of my fiancée, Tom.


And another of me and my dad.

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Yup. 4 more days til surgery date on August 4th. I'm pretty much prepared. Wish me luck you all!!

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10 more days til my surgery date! Wow, I am just counting the days! I am really excited to get it over with.

A lot of people are always asking if I am nervous about it ... Not really since this is my 2nd surgery. I had shoulder surgery done almost 3 years ago and I know what to expect during recovery wise like sore throat, in and out of sleep during the first few days.

My worries are migraines... will I get them hard? I've had tiny ones but the killer part is I CANT take anything for it til my surgery date.

I told my mom that I want to document everything on my pre-op then post-op. Its funny, I told my dad tonight, that I was worried on how much hair that they will shave off....grrr...I actually got it cut about a week or two ago. About 4-5 inches off; that way its shorter than before and less TANGLES since you can't wash your hair for a few days.... :(

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Have you met Buddy's sister?? Her name is Melody. She is a year old now and is bilateral.

I recieved her several weeks ago. Boy she is a cutie! Enjoy the photos!

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I got some advice from my friend that has a CI. It was actually other peoples' advices that they have given her when she was in the process. I thought I would pass it along to everyone else!

Here it is gang..

Pre-operative

1. Purchase things like triple-antibiotic ointment, hydrogen peroxide, cotton balls, q-tips, over the counter pain relievers, shower caps, gauze, Vitamin E capsules, and special shampoos (see post-operative below – some could use baby shampoo right away, while others had to purchase “no rinse” shampoos for a week’s use) PRIOR to surgery. Discuss the use of each with doctors and nurses. The important thing is to purchase these prior to your surgery date so that all is ready for use when you get home. If you know you will have pain medication prescriptions and antibiotics, get them filled before surgery so that you don’t have to worry about getting them after you get home.

2. Clean your house before you leave to go to the hospital! Wash all of your dirty clothes, etc. No one wants to come home from even outpatient surgery to a dirty, messy house. Make sure you wash your bedding so that you have clean sheets to snooze on at night! Find towels toplace over pillows so that ointment will not stain pillowcases.

3. Purchase extra pillows if you think you will need them, in order to prop yourself up better at night. Some CI patients borrowed a recliner in advance if they did not own one. This enabled them to sleep comfortably in a reclined position after surgery for a couple of weeks.

4. Purchase healthy microwave meals, or freeze a week’s worth of meals in advance. This will enable you to quickly re-heat food so that you do not have to prepare and cook meal immediately following your surgery. Put them in cheap microwaveable plastic containers so that you can throw them away and not have to wash dishes. Purchase fresh fruit the day before your surgery so that you have healthy snacks readily available. Wash them ahead of time so that you need only retrieve a piece from the fridge. Stock up on applesauce, popsicles which may help with jaw or throat pain.

5. Make a list of how to take care of your pets, plants, etc., and make sure a friend or family member has a key to your home in case you are kept overnight. This will ensure care for the critters should the doctors choose to keep you an extra day.

6. If you know you will not want visitors for a few days (especially as you cannot wash that hair of yours!) email or contact people you know may “drop by unannounced.

7. Most surgeons now require that patients get an age-appropriate vaccine (Prevnar or PCV7 and/or Penumovax or PPV23) prior to implant surgery. Make sure you discuss with your doctor the reasons for the vaccines, and when they recommend getting them.

8. Many surgeons require a physical prior to your surgery by your general practitioner. Some require that it be within 30 days of the surgery date. This physical may include additional tests like the EKG, CBC, BMT, PT/PTT, and chest x-ray. Discuss this with your surgeon at pre-operative visits.

9. Most surgeons ask that you stop taking aspirin, or aspirin-containing products during the 14 days prior to your surgery. Failure to do so, may cause your surgery to be cancelled. Some of these products are listed below, however this list is not exhaustive. If in doubt, please contact your physician and/or surgeon. These products may include:

Alka-Seltzer

Anacin

Arthritis pain formula

Arthritis strength BC powder

Arthritis strength Bufferin

ASA enseals

ASA suppositories

Ascriptin

Ascriptin ND Caplets

Aspergum

Aspermin

Aspertab

Axotal

Azdone

Bayer

BC Powder

Buffaprin

Buaffasal

Bufferin

Buffets

Buffex

Buffinol

Butalbital compound

CAMA arthritis pain relief

Children’s chew. Aspirin

Cope

Damason-P

Dasin

Darvon Compound

Epromate

Equagesic Tablets

Equazine M

ES Bufferin

Gensan

Genuine Bayer Aspirin

Goody’s Headache Powder

Isollyl Improved

Lortab ASA tablets

Magnaprin

Marnol

Micrainin

Midol

Measurin

Monentum

Norgesic

Norwich Aspirin

Pacanalgesic tablets

Pain reliever tablets

Percodan

Presalin

Persistin

Salatim Capsules

Saleto

Salocol

Sine-Off sinus

Soma Compound

St. Joseph’s Aspirin

Stanback Powder/Max Powder

Supac

Synalgos-DC Capsules

Talwin Compound

Therapy Bayer aspirin

Tri-pain caplets

Trigesic

Ursinus inlay tabs

Valesin

Vanquish

Verin

Wesprin Buffered

Zorprin

(Certain herbs and supplements should also be checked with you doctor. Go to

http://www.mayoclinic.com/invoke.cfm?id=SA00040 for more information)

10. Just in case you are dizzy after surgery, and you live in a home with stairs, make sure everything you need is on one level. That way you won’t have to go up and down stairs for a few days.

11. If you are the person in your household who pays the bills, make sure you do this in advance. You can have them prepared, but ask a trusted friend to mail them on a particular date, or you can mail them early. (Like the companies will complain for getting paid early?) You may not feel up to bookkeeping for several days, so be prepared.

12. Some CI patients were told they could not lift more than 10 pounds for 3 weeks after surgery. If you are the grocery store shopper in your home, you may want to stock up on groceries as you will be unable to lift grocery bags full of food.

13. You cannot wear contacts in surgery. You cannot wear glasses during surgery. However post-op, you will need to see to speech read, or to read notes written to you. Remove the “same side” arm on your glasses as the side you are having implanted. Keep the tiny screw and side-arm in a ziplock bag in a SAFE place so that you can re-assemble them later.

14. Go the library or video store so that you will have plenty of things you can do while “resting” with your feet up.

15. If you take other prescription medicines for blood pressure, diabetes, etc., make sure you have a week to 10 days worth before having to have it re-filled. The last thing you want to do the day after surgery is try to get a prescription re-filled.

16. Check with your surgeon about acrylic nails, false nails, or polish. Some do not require thatyou remove it, however some ask that you do. It is best to find out ahead of time, especially if you wish a professional to remove your nails. Ask about both fingernails AND toe nails.

17. If you have questions that need answers, bring them with you at check-in so that you will have the answers prior to being released.

18. If you have short and/or very thin hair (OR if you fear a horrific hair cut!) you may want to invest in some hats and scarves. Nice wide-rimmed hats with brightly colored scarves look great. The “guys” may want to do without the scarves – but baseball hats, cowboy hats, etc., are all great options.

19. You can find numerous CI lists online, some of which have pictures of post-op haircuts. If you see one you like, and would like the implant center to try to duplicate that “look”, print the picture off and take it with you! It won’t hurt to ask them to do their best to leave you enough to work with later!

Day of the Surgery

1. Whether you are wearing street clothes or pajamas home, make sure the shirt buttons all the way down the front. You will not want to try to pull something over your head. The same goes for your jacket or coat if it is cold. No pullovers! Sweat pants, or “other” slip on pants are a great idea as well. Skirts, dresses, hose? No way!

2. Plan to wear slip on shoes. You do not want to have to bend over and tighten, then tie or snap shoes. No high heels. No-skid soles are best for OBVIOUS reasons.

3. If it is cold, bring a light scarf that you can lightly drape over your head to protect it from the wind and cold.

4. Bring a small pad of paper and pen to communicate with others.

5. Bring your “CI ready” eye glasses (see pre-op above) and a ziplock bag or container to keep hearing aids in while in surgery. If you do not have someone to hold these for you and bring them directly to you post-op, ask a nurse to take charge of them so that you can put your hearing aid back into the non-implanted ear after surgery. Label the baggie with your glasses and hearing aids with marker, even if you are leaving them in another person’s care. You never know! They may get misplaced.

6. If you know you will be spending the night in the hospital, make several nice signs that say “Deaf patient – Please face to communicate”, or other instructions. This can be taped to your door, above your bed, etc.

7. Do not wear jewelry – best to leave it at home.

8. Bring a picture ID with you. Once checked in, you can give it to a family member or friend for safekeeping.

9. Bring crackers or other light snack with you. You may be in recovery for hours and they will forget to feed you more than likely. Ask permission to eat peanut butter crackers, or ask for Jell-o or soup. (Make sure family or friends bring a snack or money to purchase something from the cafeteria.

10. Arrive ON TIME as registration takes a great deal of time, and mountains of paperwork. Bring your insurance information even though they should already have this. Don’t take any chances.

11. Do not bring your purse, wallet, etc., unless you are leaving them in the care of a waiting family member or friend.

12. Talk to your doctor and anesthesiologist about anti-nausea meds. This can be given through your IV during surgery and helps many patients in your immediate recovery. If you are extremely nervous beforehand, you can be given a light sedative like Xanax or “other” through your IV. Talk to your doctor.

13. Want a Kodak memory? Make sure you bring a camera and instruct those around you to “snap happy”. YOU will not feel like taking pictures, but you can have designated people to take pictures, or even run a video camera.

Post-operative

1. Do not allow doctors or nurses to give you verbal instructions. Ask them to write. EVERYTHING down. Even if you have a family member or friend listening as well, something may be forgotten.

2. Make sure there are clear instructions about incision care. Make sure it is written down.

3. Make sure there are clear instructions written about HOW and WHEN to wash your hair. You may want to find this information out ahead of time in case you need to purchase special shampoos, etc.

4. After surgery, if you have to sneeze, do so with your mouth open! Closing your mouth, or trying to hold the sneeze back may damage your ears and break the clot from the surgery.

5. Avoid crowds and little ones if possible. You do not want to catch a cold, virus, etc. Your immune system will be weakened from the operation.

6. Do not drive for at least a week, however some surgeons ask that you do not for as long a two weeks. Obviously, if you are dizzy and weak after 2 weeks, you still should not drive. “When” you can drive varies a great deal based on the responses I received. Ask the doctor. Many who responded said they were told no driving as long as they were still taking prescription pain meds.

7. Make sure you have a reliable way to contact your surgeon and implant center (with the actual names of a couple of nurses), and your general practitioner.

8. Returning to work varies individual to individual. Speak to your doctor about this, and stay in contact with your employer so that they know how you are doing and your anticipated return date.

9. This may vary hospital to hospital, but no airline flying for at least 3 weeks after surgery.

10. Ask for an identification card the implant center may have available that you can carry with you in the future, to verify that you have a cochlear implant and that it cannot be removed. Security checkpoints in certain buildings, all airports and train stations, etc., will need to see proof of your medical implant.

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I am in graduate school at University of Baltimore.  Taking two classes, Typography and Creative Concepts.  I was in my last Typography class on Thursday night with Maxwell Boam.  

Max Boam also works with the JHH magazine.  My classmates asked Max to show us his work that he has done.  One of the pieces that he showed us was a article of Dr. Charles Limb, my surgeon for the upcoming CI.  I found out that he was a musician.  I thought it was so interesting! 

I am still awaiting for the article to be found on the JHH website..  Once I get it, I'll put in another blog post.

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Two  more appointments were made for the audiologist and surgeon.  The receptionist made them on the same day, but the killer part was it was July 24th.  I was like what?  She mentioned that Steve Bowditch (my audiologist) is rather booked up. 

She also asked me if I want to be on a cancellation list for Steve's appointments.  I was like sure, why not, it wouldn't hurt.

I got the name of the surgeon.  Dr. Charles Limb.

Apparently the JHH Listening Center website is going under construction, most of the links don't work right now.... :(

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Today was the day for initial consultation. My parents and fiancée went with me this morning.

Meeting Steve Bowditch was a pleasure. I think he reassured my family by answering their questions. My dad had a lot which surprised me cuz I didn't think he would be interested in the process of me getting a CI.

Two more appointments, one with Steve and the other with the surgeon. Then the surgery date will be scheduled.

Reality is coming! I am very eager to get the process moving forward. And today was the first step! Woo hoo!

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Whew!  After 6 LONG weeks of waiting!  I finally got an email from JHH.  I go in Thursday for my evaluation appointment, which will include new audiogram.  I am eager to find how how my hearing loss has been since March.  Is it stable or has it gotten worse.  I will find out that day if I am indeed a candidate for the CI.

Wish me luck you all, it happens to be the day after my birthday when I got this news. Not bad of a late birthday present!

Next post will be next week with results from JHH.  I am hoping to see some of you at the JHH Cochlear Implant Picnic!

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Yea, I decided to do a before and after comparison analysis.  I want to see how much I can understand and full hear with my hearing aids with worsening hearing and how much I can hear after my Cochlear Implant Surgery.

I may be ahead of myself here, but I am so curious.  I really want to document the good and the bad things I can or cannot hear.

From Michael Chorost's video, he mentioned that he learned how to hear all over again by reading and listening to Winnie the Pooh - Books on Tape/CD.  This inspired me to start my comparison.

Last week on Saturday, I went to Daedalus Book Warehouse Outlet in Columbia and started my search for children's books on tape.  My friend offered to take me there since she spoke very highly about it.  I went there....Nada, Nothing!

I decided to go to the library and get a few movie soundtracks, like Aladdin and Annie.  And I was curious if my local library had children's books on tape.

This woman took me back to the kiddie section and viola!  I have never seen SO MANY children's books on tape in my life!  I was in heaven!  I pulled a few out, like the Berenstain Bears, a book that I loved as a kid, read majority of their collection.

I am hoping over the weekend, I will try one of the books on tape and write an analysis.  Keep an eye out!

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I have been asked what company that I am planning to use.  There are three companies that I know of, Advanced Bionics (AB), Cochlear, and Med-El.

I'm not gonna lie here, I picked AB, because of the great advanced technology that they have come up with.  Their special hooks, the T-Mic, the direct connect, and the standard hook.  All I can say is 'WOW'.  The T-Mic really sounds pretty cool from what I have heard from my mentors and friends that have AB.   I know that there have been two recalls but it shows that they are willing to go for the improvement in their processor, implant piece.  Also their advancement in the software as well.  

I have a lot of CI'ers that have AB.  Very few have Cochlear and None have Med-El.  There is one thing I heard about Med-El.. they have the tinniest processors that I haven't seen in a long time!

But what's important to me?  The advanced technology with the newest software that recently been out not too long ago.  Gotta weigh your options!

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I found this video online that describes what an Cochlear Implant is.  Thought it was very informative!

Click to view the video!

I wish I had a YouTube video to embed in the blog.

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Yea, I am gonna call this the D-Day...  Back November 2008, I went around my workplace to take photographs of some paralegals and newly hired attorneys for a Class of 2008 Yearbook that I was going to produce. Sometime after 10am, went to an office and was ready to take a photo, then I heard this static and then it went silent in my right ear.  My first impression, was that my battery died, or it was going belly up again.  After the photo shoot, I hurried back to my office to get a fresh battery before my next photo shoot appointment.  Turned it back on and put it in my ear... it sounded it had a lot of static in it.  I was frustrated, that the hearing aid went up AGAIN and I knew that I would have to send it back to get it repaired AGAIN.  And another $200 out of my pocket.

Sent it back and got a refurbished hearing aid just before Christmas, I got excited, it was like I was getting a new toy, put it on, heard static and then nothing again... I was so disappointed and gave the hearing aid back to my dad and asked him to take it back to get it fixed AGAIN.

Got it back in mid-January.  Tried it again, nothing... Sent it back again.

Got it back again in February.  Same old results, nothing. So, I decided to get a new hearing test to see if there is something wrong.  Made an appointment in March.

March rolls around, I go in the hearing booth and plop my butt on this school style chair and got my big and heavy headphones on my head and a handheld respond button in my hands. The heavy door closed on me, and ready to take the test.

They did my left ear first, which is my bad ear, heard some things, pressed that button and then it was time to switch to my right ear.  Heard NOTHING.  Maybe just one or two sounds and that was it. I just sat there waited for those beeps and hums to come to me.  Nothing, the door opened up, the audiologist takes the headphones off and then put this special headphone, it was weird, it goes behind your ear.  I heard or felt a few things for my left ear, and NOTHING for my right ear.

Then the door opened up, saw my mothers face, Dr. Susan's face, it was a disappointment look they had.  Right off the bat, I knew.  Dr. Susan said that you have a 25db loss in your right ear.  I was like really?  My mother's face told me everything that I needed to know.

Dr. Susan said that maybe you have an infection in your ear.  In the back of my head, I knew that it was not no DAMN infection, this happened in November.  She got me an emergency appointment right way with an ENT doctor.

Waited for about half hour for the ENT doctor to see me.  He looks in my ears and says they are clean and didn't see any infection in my ear.  He said that he wanted to 'TRY' to do a shot in my eardrum with steroids since I can't take oral due to my diabetes.  He also told me that there is a chance that I can lose the rest of my hearing in case of this tiny hole doesn't heal up on his own.  I immediately asked him, how often is this 'shot' done?  His reply was it was still new.  Alright, FORGET that!

He looks at my audiograms and compared them to my first one in 2005.  Off the bat, he told me that I was a candidate for the Cochlear Implant.  My first reaction was nothing, I was at loss for words.

After my appointment with the ENT doctor, I hurried back to Dr. Susan's office to get my right hearing aid to increase the volume so I can hear.  It sounded very different, not the same as before.

I tried to get the hearing aids to the way I normally hear it, volume wise adjusted over the weekend.

Went back to work on Tuesday.  First thing I did when I got to my office is to check my voice mail with the CapTel phone.  I could NOT understand my own voicemail.  I knew from there that the CI was my only option. It was still early in the morning, people in my office haven't arrived to work yet.  I must have cried at my desk for a while cuz the one thing I did the most in my office was phone calls.  That made me more 'hearing'.  I was indeed 'DEAF'.  From that point, it made me so determined to go forward with the CI process with John Hopkins Hospital.

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