Sunday, 31 August 2008

What was that?! 26-8-08

I picked up my keys and heard something, put the keys down and tried to find the noise.... gave up as it was completely silent... ummm.. then picked the keys up, realised it was the keys!! YAY!

My dog pestered me to play with his squeaky toys all day, I took it off him as it was driving me nuts. Poor Boris I had to hide his squeaky toys. He was wondering why as pre implant he used to play with them all day long.... Sorry, Boris I'll find you something else quieter!

So Keys jangling and squeaky toys to add on the list.

And oh the blinking indicator of my car.

The world is so noisy!!!! 25-8-08

Wow, the world is so noisy I had trouble working out what sounds they are. My brother Stephen went back to london and I had so many people over for the weekend due to local festival, and sailing.

It was my first sail since the switch on, sadly not this time I had heard anything I wanted to hear BUT could hear the wind faintly only if I had the microphone facing towards the wind, sounds like whoosh..

I was much happier with the setting, Sarah had given me and was able to wear the processor and HA 13 plus hours every day, I had very late nights at the weekend.

As everyone had gone home, today was Bank holiday Monday, I put the telly on mute. I tried to listen for things, I heard on P3 without HA... and never heard pre implant!

Computer tapping!
Water running (this is loud)
Rustling of plastic bag
Slicing meat on glass board
Knife and fork on plate
Myself breathing!!
Rice being poured into empty sauce pan.

2nd map 22-8-08

Today was my 2nd map, Stephen came with me again.

I told Sarah that I wasn't happy and got upset with the sounds as it sounded like a constant whine, she changed the programs completely and tried different program, I have no idea what my previous program was but this time it was SPEAK. Ah.... so much better!, My faint feeling went with the old program. I was feeling alot happier. I could hear the cymbals! and people talking. It doesn't sound normal, just in high pitch squeaks but is clearer than before, I could tell when they stopped talking. Again Sarah setted this in 3 different levels so I can increase in comfort.

I had Rehab again, this time we had sylablles pratice. I got most of it right, Horray! I never heard words let alone sylablles before. I could tell the difference between one sylablles to multiple sylablles.

Yesterday I couldn't contain my excitement, I went out and bought ice blue Ipod even I won't be able to use it for while yet! I can play games on it though if anything fails.

Switch on day,

To be honest I was really nervous and was glad that my brother Stephen could spare his time off work (he works in london) and spent few days with me. My nana came along aswell. They have been wonderful.

The switch on was at SOECIC with my usual Audiologist Sarah. She started very low, slowly increasing the volumes as I wasn't hearing anything but started to feel faint which is signs of stimulation. She stopped and went back few steps... tried from high, I listened very carefully a faint beep beep came... But I was still having faint feelings, she tried, I tried so hard aswell. She setted the processor at low and with 3 programs which I can turn up until I am comfortable and not feeling faint/dizzy. I couldn't hear the drum or anything at all, just high pitch whine. It was very tiring day so we left as it is. I also had rehab after the switch on.

About 10 of my electrodes were turned on today. I was bit worried that I was doing it wrong as I can't hear a thing but a whine. But managed to wear the processor and HA for the rest of the day.

29th July - Got my Date of Activication

It's on 20th August, 5 weeks post operation.

I cannot wait until I am back on the waters... I am going to race in Cowes week next week but I won't be doing a thing just take it easy and enjoy the race.

2 weeks post Operation

I went back to Nuffield Hospital with my Aunt Deb (uncle Peter's wife and my dad's sister)
My steri strips came off and the ear wick came out, it stinks of antiseptic! eugh! The wound is so neat! Good job Mr Ashcroft! ;-) And at last I can wash my hair properly, In the last 2 weeks I had Laura or my mum to help me to wash my hair without getting the wound wet. I asked Mr Ashcroft when I could get back to sailing, he said give it another week and I could go racing (it was Cowes week) but I had to be careful and stay at the back of the boat.

Collected my new toys!!! But cannot use them until my Activication date.

21st July - Mum goes home.

I was bit glad of getting my house back but would miss my mum so much she was great. I took Boris for my first walk today since the operation, I was quite tired due to the drugs i was taking and the GA dissolving in my body, I often fall asleep at about 2/3pm every day since the operation for few days. Other than that I was in very good health.

The Turban comes off

Friday 18th July, It was 48 Hours since I had the operation, I had check up with my surgeon, Mr Ashcroft, and to remove the turban. The surgeon was pleased with my progress. I was bit shocked on how much hair he had removed!

The day is finally here.. 16th July.

I woke up at about 6, opened the curtians. Saw a pretty grey and white cat lying in the road thought it was sleeping, we have alot of cats on this street. I have one so it's not new to see cats lounging about in the sunshine on the roads also it was very quiet road.

Went to mum's room and told her about the cat as I have the feeling something isn't right.

I had quick shower and took Boris, my dog, for quick walk. Mum went to see the cat, sadly it was victim of a car. Mum moved the cat into my garden (I have fenced front garden) and took it's tags off so she'll call the owners when we get to the hospital.

We Arrived at the Nuffield Hospital in Chandlers Ford and it was only 15 mins drive. I arrived at 7 am. I was assigned to my own room right next to nurses station probably because I am deaf. I had my own nurse well 4 nurses through out my stay at the hospital.

At 7.30 I srrived into my room, there was good luck balloons and a present from my friend Abbi. It was lovely balloons and the present was a teddy bear which I put on my bed. My nurse "Mary" she was lovely. She took my vitals, said my vitals couldn't be any better than 100% sats, got me to wear those pressure socks, I changed into gown and put dressing gown on. My Anesthesist came in huffing and puffing, he checked my forms etc and dashed out! He was good looking one, shame he didn't stay any longer! My mum called to the cat's owner, it was so sad, the cat was called Gizmo and was only a year old.

My operation was scheduled for 8.30. Bang just before my time Mary walked with me to the theatre which is about 10 steps away! I laid on the bed while the staff put the pads on, put cannula in, my surgeon came in and said it will be okay. Mary was asking me what I would dream about, I said sailing in the caribean.. the mask was put on me and the drugs were put in, at excatly same time I looked at the analogue clock, it read 8.30 am, poof, I was gone.

I came round, everything were in a blur and saw the clock which said 9.05 i thought damn the operation didn't go ahead for some reason but the different nurse saw me and said "All Over", I was bit confused and saw Mary, I was relieved for a familar face, Mary said, It's quarter to one and the operation went very well, I was under for 4 hours. The other nurse was my new nurse as there was shift change over, but Mary being so nice and considerate she stayed until I came round properly. The new one was called Lorna.
They checked if I was in any pain, nope, feeling sick, nope, dizzy, nope. I was wheeled back to my room. I was very thirsty. My mum and nana was waiting. I was given Injection of antibiotics, dressed in my Pj's just before Mary went home. I walked (with Lorna's help)to the toilets less than an hour after my op! Mum and Nana left at about 3pm I spent rest of the afternoon drifting in and out. I was asleep until my Uncle Peter came over (he lives in Chandlers Ford) at about 5pm, I was so hungry! They gave me some sandwiches and soup, whilst eating the surgeon saw me and was pleased to see me sitting up and eating. My friend Laura came over. It was lovely to see her. Had another nurse change over, Erica, another very nice nurse, she admistered another injection of antibiotics, it was irritating and horrible, it took good 10 mins to get all in, I think it was 50ml, a huge injection but I was glad it was the last one. I had good nights sleep and had slept on my implanted side with no problems.
I was discharged the next morning after x-ray and went home with bag of pills, I had Anti biotics, anti inflammatories and painkillers which they advised me to take them anyway to keep fever abay even I wasn't in any pain. Here picture of me the day I got home from the hospital.

My X-Rays

13th July - 15th July

I flew home...... :-( I am going to miss all the fun and my dear team! My boss gave me jobs to do when I get home and I would be doing them on my own as the rest of staff is in Cork!! I guess thats good as it would keep me busy until the operation.

I spent the next 2 days working very hard, and good job my mum was here (she came over to look after my dog while I sail to Cork and to look after me after the operation) she had helped me alot even she is a land lubber and doesn't know much of sailing terms!! But she had learnt some.

15th July - I had my pre Op appt with Mr Ashcroft this evening, he said.. perfectly healthy and he'll see me tomorrow morning... I was so excited but nervous aswell...

8th to 12th July, the delivery to Cork

It was horrible trip, the boat was pounding all the time and the wind was on the nose the whole way, we only managed to sail for a bit but had to motor most of the way so we could get to Ireland on time after many delays due to horrible weather, I was sick as dog on the last day of the trip, I had no idea why i was sick as i never had been seasick before. Come to thinking that i may be nervous about upcoming operation, missing the fun in Cork, i was also very cold and damp due to my waterproof trousers leaking like a sieve! Oh well... never mind. I was fine as soon I saw Ireland in view!

Few days ago I asked my Audiologist if I could wear HA in my left ear, I had not worn HA in it for 15 years due to on going Tinntius. Sarah agreed that it might help a bit if I had HA in my left seeing as I am having my good ear implanted. So I have a pair of HA's now.

4th June;- The date for the big day

I got letter from SOECIC informing me that my operation will be on 16th July. My surgeon would be Mr Ashcroft and it will be at private hospital (I was hoping for that!!). My pre op would be on 8th july but since I am already booked to deliever a boat to Ireland so they changed the date to 15th July, 2 days after I fly home. God, it's so close! I was bit disappointed that i would miss the CORK WEEK (it's yacht race/festival) but there's always next time. I am not going to delay the Operation any longer!

Funding is in Place

This morning i recieved letter post stamped 13th May (I was at SOECIC), I was wondering what it was about since we had no appointment planned until the funding is in place.

It was long and thick letter, it said.... FUNDING HAS BEEN APPROVED! Whooooo hoo! I was over the moon. Now it's just an operation date to wait for....

13th May, Finally another new Aid

I went to SOECIC to get replacement HA, I got unitron analogue and it was better than otcion/seimens but not good as widex. Sarah my Audiologist and I agreed it will be okay until I get the funding and operation. I asked Sarah what is the progress on the funding, she spoke to the director and they haven't heard anything yet, they are still waiting. Looks like I am in for a long wait.

The D-Day 18th April

I woke up with butterflies in my stomach, to put it out of my mind and went to work. At lunchtime I was about to leave for home, I got a text message from Nikki at SOECIC........I AM A CANDIDATE!!!! then my excitement dimissed... they need to apply for funding (At the time i thought they already got the funding) which could be a while. Oh well at least I am candidate and that's one step forward. I texted my mum who is in Austria, she cried in the middle of the garden centre and my dad was panicky as he was worried that mum had recieved bad news but when mum told him the news he was elated. Mum then called my nan (she lives near me but don't have mobile phone) she cried too.

Mum and Dad's Visit 8th April

It was 2 months since I last saw them, they moved to Austria for a better life since they both are now retired. It was lovely to see them. My mum called to SOECIC to see if i haven't missed anything and to keep her in the loop also I haven't heard from the centre for while and there were no news on replacement HA. The centre said they will get back to me when they find a suitable HA for me to wear. And the Decsion day would be on 18th April! That is 10 days away, sadly my parents won't be here to share the news.

Good night to Widex senso 2000 - 2008

18th March, seems like my Widex had finally given up it's life. I used my otcion... damn, it malfunctioned! I am nowhere near my Hospital and they only do HA checks Monday, Wednesday, and Fridays, Tomorrow is Wednesday, I couldn't go as I was fully booked at work, Friday is Good Friday so they won't be open, the following Monday is bank holiday Monday so again they won't be open! I have my cousin's wedding this weekend..... not good. I remembered vaguely that I still have Phonak analgoue HA somewhere, but would it be working as I haven't worn it since i got Widex. Looked and looked everywhere.... Boxes to boxes, then I found "childhood" box... it was in there not only one but TWO... Since I only wear one in my good ear (right) the more the better. Tried them, one of it is flat out dead, so tried the other one it's working, least I have some sounds for the weekend. I have sent email to SOECIC informing them that I would need replacement HA, I would have gone to hospital but the open clinic hours is very short and there is so many deaf old people, I didn't have time to wait 3 hours before being seen then they say sorry and come back next time only to have same problem repeated, I work full time, I have to take alot of unpaid time off to attend this.

Final Appointment

It had been a while since my last appointment, Today is 17th March and it's expectations meeting, when I arrived at SOECIC, I was given a questionnaire!! I don't do questions! I was staring at it looking puzzled! one of question was "would you expect to hear same again?" what...I was born deaf and haven't heard much! one of the ladies came in and said, that wasn't supposed to be for me it was for post ligual people!, I was relieved! I had "verbal" questionnarie with Nikki. Thank god, It was very relaxed meeting. In few mins she gave me a form, I looked at it... it was a form for chosen implant.... but I haven't been accepted yet, she said... according to my "successful" assessments I may need to make choice of which implant I want.... I was getting so excited and had butterflies in my tummy!! She didn't say that I am candidate, I have to wait for the Decision day (god knows when will that be, it could be a while as my CT scan hasn't arrived yet).

I chose Freedom, because of it reliblity, 4 programs,Gore-tex microphone covering which I would beable to use it while sailing and working outside, battery life and the comfort of wearing it. I also chose Chocolate brown.

The ABR test

27th Feb 2008:- I had the ABR test, and another test (i forgot what is it called) to test the cochlea. I have slightly active auditory and the Cochlear isn't responding so my deafness lies somewhere in the cochlea. With the scan it will tell if I am suitable for the Implant. My friend Ilona was there as support, she's an implantee herself and I had asked her loads of questions.

I had repeat hearing test with the otcion, they stopped just after the test started as they realised I wasn't responsing to ANYTHING! So back with Widex and kept Otcion as spare.

20th Feb 2008

Yesterday I had the menigtits jab, it wasn't too bad as I am not fan of needles but boy the pain afterwards, I had big lump aswell. I was pretty sore for few days. Lucky it was in the left arm as I am right hander.

Today we had users group. My hearing friend, Laura, came with me. I took her as I thought she would be interested in hearing other people's views with CI. Although the talk was very good, I was little disappointed that the implantees were Post-Ligual deaf or late deafen, to me they already knows what the sounds were before they went deaf and adapted to CI quite quickly whereas in my and 2 other's case is completely different as we were born deaf. We do need an input from an implantee who was born deaf.
In the afternoon we get to look at 3 different devices, Cochlear, Advanced Bionics, and Med-EL. we learnt about them and tried them on to see how it feels. I didn't like the Med-el. I had choices between Cochlear and Advanced bionics. Laura had very pleasant day and really enjoyed it, she tried the processors on as well so it was fun too. She had been wonderful support. If you are reading this, you are a star.

18th Feb 2008

This morning at 10.45 I recieved a post from the Hospital saying that my CT scan had been changed from 4.30 pm to 11.30 am of same day and that was today. In utter mad rush I dropped everything, chunked my poor bewildered puppy into his crate, texted my colleuge that I will be late for work and made dash to the hospital which is 30 mins away and the parking is very small!!. I made it there with few mins spare and they were late, groans!!

The CT scan itself was very quick, it was literally like in and out within 10 mins.

New Aids Again

12th Feb 2008 :- I went back to the hospital to get new aids, this time it was Otcion spirit SP 3. Again it was no good use to me but I took it anyway in case my old Widex gives up. Otcion would give me little environmental sounds but not much of speech sounds.

The Initial Assessment, 15th Jan 2008

The posts is extracts from my dairy and emails to my parents who lives in Austria.

This is the first appointment I had at the South of England Cochlear Implant Centre. The assessment tells them if the assessment is worthy enough to get on to the CI candidacy assessments.
When I got my new hearing aid (siemens) back in september 2007 at the new hospital wasn't working so they used my old aids Widex which I had for 8 years.
The first assessment i had was hearing test. In my right ear my loss is 95db at 250hz sloping down, i have no High freq recored. In my left the loss is 110db sloping down, again with no High freq, I haven't worn an aid in this ear for 15 years due to ongoing tinntius problem.
The lipreading with aid in was 41%, without sound it was 28% and without lipreading a measly 2%! I was laughing at this as i really tried so hard to hear A word! it was impossible.
The audiologist did say I may not benefit from getting CI. I visited the consulant he said same thing BUT he wanted to see me again... Phew, He said i have very good speech (for a profoundly deaf) and would like to see how the tests would go.
Few days later I had pile of letters on my door step, counted them 6 from the SOECIC! all listed with appointments! Most of them in Feb and Feb is just round the corner.. so soon!

The beinging of my journey to cochlear implant candidacy

I had spent few years thinking about getting CI due to my lack of hearing with HA. I went to a hospital for years, presuading them for years to let me have one but they said that there is absolute no way that I would be candidate for Cochlear Implant as I was deaf too long and had no auditory memory. Well they were wrong as when I moved to new area, I was refered to new ENT and Audiology. I went to see the Audiologist as I needed new hearing aids. At this point I thought I wouldn't bother asking them about CI as I would get same reply as the other hospital. The Audiology wasn't happy with me and new aids, so he refered me to see ENT.

On the 10th of September I had an Appointment with ENT, the first question after "hello" (obviously), he said have you thought about Cochlear Implant? As you can guess I had to check my mum if I lipread him correctly. The journey had began...

Little about me.

I thought I would set this up so you can read my progress with my Journey with Cochlear Implant. I was born Profoundly Deaf, with recent CT scan (for CI) it revealed that I have no hairs on my Basilar Membrane. I was brought up oral with little sign, mainstreamed primary school then on to Oral Deaf Secondary School. I spent 4 years at mainstream college with a note taker. I had spent a lot of my time with hearing friends and works in hearing environment. I also have deaf friends and most of them were from same school as i went.

Why "Silent Sail" as my title... Sailing is my love! I love being on the water, it's also my livelhood. The problem is.... I couldn't hear the ocean, wind, slapping of the water against the boat. It was one of the sounds dreamed of hearing....