First Programming...
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One week since activation
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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Today's Activation
I was so nervous this morning and didn't eat breakfast at all! That's not a good thing for a diabetic.
I got this huge box of stuff in it. WOW! All these chargers, hooks, cap covers, batteries were included.
I'm not going to lie here, still can't hear a word since it's the inital stimulation. I think when I go back for programming, things will be different.
Anyway, here's a photo of me after the activation at Subway. I was hungry!!
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T-Minus 16 hours til activation
T-minus 4 Days...
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Surgical Incision Healing
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T-minus 8 days.
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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2.5 weeks Post-Op
I asked my audiologist so many wierd and dumb questions like can I blow my nose now? Can I go back to water aerobics?
Two more weeks til activation!
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Post Op visit with Dr.Limb
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.
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Post-Op {24 hours later}
Here's a photo of me. I'm not too happy here!
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Post-Op Experience
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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Surgery Day
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T-Minus 10 Days...
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Advice from a CI friend...
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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Activation Date
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The Surgery Date
Drumroll please!
August 4, 2009 at 730am. Means that I have to be at JHH at 530am!
Almost a month away!
I called my mom and she was like thats so soon! Uhhh... yea! Exactly what I wanted. I wanted the surgery before September so I don't miss classes.
I am hoping to get my activation date , 2nd day follow up, 1 week follow up and the 1 month follow up dates within two weeks. I already got in touch with Shawntell, this lovely lady that makes my appointments via e-mail.
I will post an advice list that I gotten from my friend Denise Portis, a fellow blogger and CI'er. Had some great tips that you wouldn't even thought of...
This is not my first sugery, the last one was in August of 2007 for a bone spur in my shoulder. Painful as heck during recovery. Every time I laughed, coughed, sneezed, hic-cupped, or whatever, hurt like heck! I kinda of know what to expect post-operatively since this one was almost sorta of recent.
Keep an eye out for the next post with the activation date!
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Last appointment at JHH
The speech perception....well I felt that I did terrible cuz I really didn't recognize the words. Only a few of them. CID was at 14% and HINT score was at 18%.
Hopefully within 2 weeks, I'll have my surgery date. Tee-hee! I can't wait!!!
While I was there, I also picked out my processor, color choice and cap color choice. All of ya probably already know by now that I picked Advanced Bionics. Signed and dated my device selection papers. Ordered 2 Silver Processors with Sophista Color caps.
See ya all later! Will post again with surgery date!!!
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Dr. Charles Limb - My Surgeon Appointment
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Cochlear Implant Picnic
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My Typography Class on Thursday Night
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Two More Appointments Made...
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John Hopkins Visit
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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John Hopkins Hospital
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Johns Hopkins 10th Annual Cochlear Implant Picnic
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Books on Tape
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A Comparison Analysis - Children's Books on Tape
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Different Cochlear Implant Vendors
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Video of Michael Chorost
The D-Day
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My thoughts for the day
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My Audiograms
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CI World
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Starting over again...
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About Me
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