C.I.B.O.R.G. D.A.Y.

27 02 2010

It’s my big day. Bye bye crappy hearing aid. Hello bionic ear. I’m calm. Still asking myself, Am I REALLY deaf enough for a cochlear implant?

THURSDAY 7AM

I got to the hospital and sat in reception, listening to my iPod with my last few minutes of bilateral hearing, until they called me upstairs to the B ward at the Royal National Throat Nose Ear hospital in London. I went through all the prep with 2 nurses – a form detailing any medical problems, and they took MRSI swabs, my blood pressure, and temperature. I met with the surgeon who marked my neck on the left side, he said the surgery should take about 2 hours. The anaesthetist also came to talk to me, then my friend Karen arrived. I chatted with her for the rest of the morning as my surgery was scheduled for 1pm.

I was totally calm and remained so for the whole CI experience – I think this was because I had done so much research and watched a video of CI surgery, and I had the courage of my convictions, I knew I was doing the right thing. This morning, on my way in, I tried listening to my iPod with just my left ear, and I couldn’t even follow the melody of my favourite U2 songs, whereas I was easily able to do this with my right ear. Rock on!

I was given a hospital gown, stockings to stop blood clots, and plastic knickers(!). Wow, this was a whole new fashion thing going! I eyed them nervously until the last minute, the nurse had to almost force me to get all that gear on. The stockings made me laugh as they have holes in the bottom of them … to tickle my feet when I wake up maybe?

THURSDAY 1PM

I walked upstairs to the operating theatre’s recovery room with a nurse and hopped onto a bed. I was to get a general anaesthetic. The nurse covered me with blankets and hooked me up to monitors, with monitor pads stuck to my chest. The anaesthetist had a huge syringe which looked like it was full of milk. He gave me the anaesthetic and looked at me …. I looked at him … he looked at me .. I started laughing and said “It’s not gonna work is it?!” then the next thing I remember is waking up, I was wide awake very quickly and they took me back to the ward with a big grin on my face. It was the best sleep ever and I wanted to do it again! My surgery had taken 4 1/2 hours.

THURSDAY 6PM

I felt very happy and wide awake. David had arrived and he and Karen had been waiting for 4 1/2 hours, they were worried as they had been told surgery would be about 2 hours. I had no pain at all apart from over the ear where the bandage was too tight – it felt as if my ear had been bent over before being bandaged up. I asked the nurse to loosen it for me and that helped a little.

The surgeon came to see me, Prof Saeed from Manchester, who has 15 years experience of CI surgeries, and I am his 294th CI patient – so that’s a very experienced CI surgeon! He said all 16 electrodes are working and the operation was perfect, he was totally thrilled. He asked me to close my eyes and smile, to check that my face is working ok. I then had dinner, I was starving by then, and I discovered that I can still taste food – I had been told I might lose my sense of taste after surgery. I showed the internal part of the cochlear implant to Karen – I had a dummy one with me – and my nurse was absolutely fascinated by it. From the moment Karen and David arrived, I didn’t stop talking, and I was chatting to Amanda and a few other friends via my Blackberry, so I feel as if my hospital stay has been a very enjoyable social event with a good sleep thrown in!

THURSDAY 11PM

I tried to settle down for the night but there were too many pillows, the ward was too warm, my stockings were tight, the bandage was hurting, the tinnitus was roaring like a freight train in my new CI ear. A nurse spoke to me about my pillows but it was dark on the ward and she is dark skinned ….. I gave up at that point! Too tired to explain good communication tactics! I eventually got to sleep after 2AM.

FRIDAY 6AM

A nurse poked me awake – grrr – to take my blood pressure and temperature. Another nurse came to take the bandage off and she pointed out a big swollen bruise on my chest which I hadn’t noticed. Must have got that when the surgeon had to put his foot on me to keep me down …

I had breakfast of cornflakes, tea and toast. I went back to sleep and woke to see Karen there. The nurse removed the tubes and needles from my hand and we headed off to the xray department, where they xrayed my head. The xray is to check the CI has been put in the right place. I collected my discharge note, sick certificate, and confirmed my checkup date. I got dressed and had a quick lunch, then we left for home.

FRIDAY 1PM : Home 🙂

I was able to walk and my balance was good, but I felt quite unreal and had to walk slowly. I wore a pashmina to cover up the crazy hair, I’m not allowed to wash it for a week. The pashmina worked well as it was light and comfortable. The scar looks good, it’s a lot smaller than I thought it would be, and my hair will cover it anyway. I think it looks like a very professional job.

There isn’t any pain in the ear itself. The ear is numb and it’s sore going down the neck, and I have a sore throat/jaw/shoulders/head, bruises on the back of head and chest, it hurts to turn over or to get up, I feel like I’ve done 500 situps, but overall, the operation is a breeze really, and I wouldn’t have any qualms in going through it again for a 2nd CI if I go for that. I’d get to have another go at the drugs and pants thing. I think the worse thing was the tinnitus yesterday, I didn’t expect it to get worse, and to the level that it did, of a freight train, so that was a shocker.

What I found difficult during my hospital stay was communication with the nurses and surgeon – they were foreign and I couldn’t lipread them. Luckily, David can sign so he translated for me. It’s a shame the nurses and doctors don’t get deaf awareness training. It really is so important, so that the patient has a better hospital experience – it’s not just about the medical support, it’s about the holistic support. The psychological aspect is important as well. It’s like yin and yang. I had to constantly ask nurses to repeat, to look at me when speaking, to write it down. It was so frustrating and tiring.

SATURDAY

I woke up to an amazing thing …. silence. No tinnitus! It has been coming and going today but it’s quieter than yesterday. At this moment, as I am writing this, there is silence. It is bliss. I have had constant tinnitus all of my life and it really sucks, but you can’t do anything about it except learn to live with it. I managed to get 7 hours sleep and I feel much more clear headed today. Physically I am really aching and don’t feel up to doing anything. The numbness on the left side of my tongue has gone away and my lips are becoming less numb. I’m amazed at how much better I feel.

I’m really happy because it was a good surgery and the surgeon was thrilled, and by having the CI on the worse ear, I had nothing to lose and so much to gain. It really helped to have such great support throughout from my friends that have CIs, they have been through it themselves and are great at offering reassurance and advice. My hearing dog Smudge was totally spoiled when I was in hospital, he really enjoyed all the fuss, new toys and treats, and is probably wondering when I’m going away again!

I’m so unbelievably TIRED, but I am a very happy bunny! For now, it’s back to the sofa for tea and chocolate biscuits…





Room 101

10 08 2009

I arrived at the Royal Free hospital in north London and made my way to the MRI department. There, the nurse took out a sheet of paper and mumbled while looking at the floor. I stopped her and told her I’m deaf, I can’t hear you, so you need to speak clearly and look at me when speaking. When she spoke again, the difference was like switching the light on. It’s amazing what a huge difference a little deaf awareness can make. She took me through a series of questions, double checking my answers on my medical history. I almost laughed when she asked me twice if I had ever had metal fragments in my eyes, even as a child. Err, noooooo, I don’t *think* so my dear – I’d surely remember something like that!

I was shown through a door into a small room with a huge machine squeezed into it. So this was the MRI scanner. It was a beast, a huge white gaping maw with a table for a tongue. The room was cold. Absolutely freezing, in fact. I was asked to remove my watch, hearing aids, coins and belt. I was worried about my jeans as those had studs on the pockets and a metal zip, but the nurse assured me I could keep them on. I had visions of the scanner, when switched on, splatting me against the roof with its powerful magnet.

I hopped up onto the table and laid down. I was given a huge pair of headphones to wear and told that I would hear a drilling sound. There was a small plastic cage at the head of the table, and I had to put my head inside this. The nurse wedged my head in firmly with foam wedges. She pointed to the mirror above me which reflected at an angle to show the large window of the scanner operations room. I was given an alarm to hold and told to squeeze it if I felt uncomfortable. I was slowly pulled backward from the mouth of the tunnel into its depths, with my head inside the beast’s mouth. The nurse left the room and I could see her enter the operations room.

A few moments later, I could faintly hear a drilling sound. It was like being in a nightclub but not hearing it clearly, as if it was an extremely good party at the neighbour’s. (No, it should be at mine!) It stopped and started at different pitches, I guess there were four sessions of different drilling sounds. Even though the room was cold, I fell asleep, dreaming of George Orwell’s 1984 and Room 101. The cage. My head inside the cage. My worst nightmare inside the cage with me…… no cockroaches… in fact I didn’t find out what it was as the nurse came in and I woke up.

The scanner results will take 2 weeks to get to the surgeon. Next step is a CT scan. But first – I’m off on holiday! I’ll be back soon.





Bite me

19 03 2008

I tried to contact my hearing aid centre today, to find out whether they had sent a letter that had been promised to be sent to me last Friday, as it’s been four working days and no sign of a letter. Using Typetalk, I called the different numbers on the letters I had received from my hospital. The hearing aid centre phone rang through to an answering machine every time I rang it. I tried the main hospital switchboard – they put me through to the hearing aid centre’s answer machine every time. I tried calling Bob (the audiologist) direct but his phone just rang and rang, right through the morning and afternoon. I called the textphone number and that was just dead. I called the Speech Therapy department next door to Audiology and they had never heard of Bob. Totally fed up, I called PALS to complain. The line was constantly engaged so I tried their second number. An answer machine message came on – “We are unable to respond to your call. Please leave a message and we will get back to you in two days.” Two. Whole. Days.

By now I was starting to feel as if I was an extra on the set of ‘The Day After Tomorrow‘.

Where are all these people?

Why don’t they just pick up and answer the phone?

Is that so hard?!

I can’t even begin to describe how disgusted I am. I had spent an hour on the phone, trying to get hold of a living person that I could speak to in the hearing aid department, only to be met with brick walls.

Is this the new and improved NHS? Is this Tony Blair’s legacy? Is this how they cut down waiting times, by not answering phones and providing a “customer service” that only exists when it’s convenient?

IT’S DISGUSTING !!!!!!!!!!

Score : NHS 0 – Private sector 2





Audiology’s freedom pass to be rude and inefficient

15 03 2008

My Freedom Pass expires on 31 March and my local council kindly sent me a renewal form in January. A Freedom Pass means I can travel around London for free, subject to some restrictions. I went to my local hospital on 30 January and my audiologist Mirza took my renewal forms and accompanying evidence (copy of passport and TV Licence) from me, saying he would send them to the council with the required documentation (my audiogram and a letter stating my hearing loss from the hospital). I made it clear the deadline was 31 March and the forms needed to be sent as soon as possible. No problem. Or so I was told.

In the middle of February, I asked my colleague Amanda to contact my local council and check on the progress of my renewal. They hadn’t received anything. She called the hospital. They gave her the run-around between different departments and eventually she was put through to the right person, after about 30 minutes. This person said there is no application form in my file and that they don’t post out forms for patients anyway. So where is my personal information??? Binned, shredded, mailed, or what?! Does someone now possess a copy of my TV licence and passport?!!!

Grrrrr.

My friend Karen called the council yesterday and asked them to send another renewal form. They said there is a yellow part which my doctor can fill in. What yellow part? Why a different form, and why am I now told my doctor can complete it rather than my audiologist? The doctor would have been a lot easier, quicker, and let’s face it, honest. The council said they would send out the form immediately, by first class mail. Kudos to them.

I walked to the hospital yesterday with Karen and oh boy, was Karen’s back up (she’s brilliant). I had written a letter of complaint explaining the situation, and gave it to the receptionist. It was addressed to Bob, the head audiologist, and asked what had happened to my personal information. The receptionist is one of the rudest people I have ever met, abrupt and condescending don’t even come close. She treated us as if we were the dirt on the bottom of her shoes. She took the letter and took it to Mirza, who then came into reception and started flapping about. He had my file and pulled out my renewal form from the council.

– I will do this letter for you now.

He went to the printer in the receptionist’s office, I could see him flapping about, panicking, then he snapped imperiously at the receptionist,

– This letter is address to Bob. He can deal with this.

And he stormed off.

The receptionist went off with the letter and came back,

– Bob’s busy, you’ll have to come back another day.

Karen said,

– No. We are staying put. We’re not leaving until we get that letter. We’re staying here all night if we have to. We’re not leaving without that letter.

The look on the receptionist’s face was absolutely priceless. She couldn’t believe that someone had actually stood up to her.

She swanned off. In the meantime, Mirza came back into reception with a patient, a young man, who was picking up his earmoulds. Karen was visibly shocked at how rude Mirza was to him, I could tell he was over-exaggerating his speech and being very loud and condescending towards him.

The receptionist came back with Bob. Bob explained, very nicely and calmly, that he’s in the middle of a procedure at the moment and so can’t reply to the letter right now. Karen explained the situation and Bob listened. She said we’ve walked a mile and a half in the pouring rain to get here. She said I’ve waited two months for Mirza to send the information. She said now I have missed the deadline as the council also need four weeks to process the renewal. And we’ve walked a mile and a half in the pouring rain. She said I’ve been lied to on the phone. She said Mirza had agreed to write the letter then changed his mind and stormed off. She said she was disgusted by Mirza’s rudeness. And we’ve walked a mile and a half in the pouring rain. And we want an apology from Mirza.

Bob apologised, and said he would write the letter himself on his laptop on the way home. He asked if I had another appointment booked or needed anything done. I said no, but that I would like to change to another audiologist. Bob said I am welcome to see anyone I like, including him. I’ve seen Bob before and he’s super-duper professional. He explained he’s hard of hearing himself. His attitude was a world apart from Mirza’s and the receptionist’s. Calm, professional, respectful, polite.

I’m now wondering, what gives hearing people the idea that they have a right to be condescending and arrogant towards deaf people?

Or is it that because the NHS provides free hearing aids, the NHS staff think they can be disrespectful towards its’ patients? I know that NHS doctors can be very condescending towards nurses and some patients. Treatment like this in the private sector is unheard of. It’s unthinkable.

Are we now reduced to paying for respect??

Karen’s parting shot,

– Your rude staff need sorting out, they need some management training!

I got up at the crack of dawn this morning and went to visit my doctor’s surgery, and asked if they would sign the form. They said sorry, there should be a yellow part. I’m hoping tomorrow’s post will bring either the form with it’s yellow part or the letter from the hospital.

Sigh. Tomorrow’s a new day. Oh boy.

Score : NHS 0 – Private sector 1

(And no, lucky me, I don’t live in Lewisham!)





Casualty departments are just that.

1 10 2007

I hate casualty departments almost as much as Kyle really really really really hates banks.

The last time I went to casualty was to the Royal Berkshire Hospital in Reading. I sat there for five hours with a fractured metatarsal before storming off home.

I had done something to my foot in karate and it had been very sore for three weeks. This time, I was fed up enough with this injury that I decided to go to casualty after work today.

At the casualty reception, I was asked for my details and for information about my injury. The nurse filled in a duplicate form and I was told to wait. The form had ‘Deaf, please shout’ written across the top. Grrr.

I waited and waited. And waited. People came and went. It was bedlam. This foreign lady sat next to me and started telling me all about her pet dog and how it would alert her to the phone and doorbell. She explained she had too much wax in her ears, she’d had it removed, and is still deaf. She wanted to know how my Hearing Dog worked for me, and why I was deaf. All in a voice loud enough to ensure everyone else in the waiting room could hear her. Her daughter then sat next to us and explained her mother is deaf and so on and so forth. Oh joy.

Smudge started getting very agitated, and these two ladies kept offering to go to Sainsbury’s and get him some dog food. No, no, he’s fine I said. The mother went to reception and came back with a biscuit for Smudge. Gawd. The conversation carried on, revolving around the mother’s inability to hear and didn’t Smudge want another biscuit?

Three hours later, I had almost lost the will to live. I was so tired from the incessant din in the waiting room, from the constant concentration on people so I could turn around every time someone came into the waiting room, so that I wouldn’t miss a doctor or nurse that entered, and trying to lipread every nurse / doctor in the hope that I would catch my name when they called it out.

I went to reception and asked if I had missed my name being called out. No…. I was supposed to hand the form in to reception, who had given me the form in the first place! Ack! They asked for my address and told me to wait. Half an hour later, a doctor called me in and I was out in five minutes – it’s a sprain that will take weeks to heal as I walk so much every day. There’s not much you can do when you’ve got a working dog!

I was NOT happy at the service I got. Reasonable adjustments for deaf people doesn’t mean writing ‘Deaf, please shout’ on the form and not giving clear instructions!

As a friend says, you wouldn’t offer a blind person a torch, so don’t offer to shout for a deaf one. Speaking normally will be fine, just make sure you’re facing me!





How to read your audiogram

17 09 2007

Have you ever been puzzled by your hearing test results?

This link explains how to read your audiogram.

It’s useful to keep your audiograms so if you change hospitals, you can show your specialist how your hearing loss has progressed. I’ve lost my hearing in large chunks and this seems to be common among my (young) deaf friends. I’ve always asked for a copy of my audiogram, sometimes they grumble and get difficult about it, but it’s my right to have a copy. It’s useful as hospitals in this country have lost all my medical records so can’t track anything beyond the last hospital I visited. Impressive, huh?!





Hospital communication kits

16 09 2007

Have you ever been a hospital patient? Was it a frightening or nerve-wracking experience? For deaf people it’s that much more scarier. Why? There are many things a deaf person will miss – a doctor/nurse calling your name, medical staff ‘mumbling’ instructions, not quite catching a response over the intercom to your call button, not being able to lip read the night nurse in the dim light.

I used to work for a national deaf charity and had brought up the idea of hospital communication aids before but it never got anywhere. No one seems to be offering aids in the UK for hospital patients, the most you can get is an ear symbol sticker and hearing loss badge from Hearing Concern.

Preparation is vital for a less stressful hospital stay. In the USA you can purchase from a couple of HLAA chapters (branches) an item called a hospital communication kit for about US$5. This link also has a sample Dear Doctor/Dear Nurse letter to give to your doctor/nurse, with handy communication tips.

I wonder how effective such a kit would be. Would staff bother to read it? Would they understand the communication tactics required? Three years ago, I sat in a hospital corridor waiting to be seen by a Ear Nose Throat specialist for an upgrade to my hearing aids. A nurse came up to me and said ‘He’s shouting for you’ and showed me into his office which was just behind me. The door had been open, why couldn’t he have just come out and got me? He started saying something and I didn’t have a clue what he said, he was Indian with a heavy foreign accent. I asked the nurse to translate, she said he was telling me to leave my dog outside. At that point I erupted. No way, he’s a Hearing Dog for Gawd’s sake! The doctor couldn’t even be bothered to look at my file which ONLY has notes relating to my profound hearing loss, so he shouted for me as if I was a hearing person, he couldn’t be bothered to speak clearly, and then he discriminated against me on account of my Hearing Dog! I was livid. I certainly gave that doctor a piece of my mind!

I have recently given deaf awareness training to final year medical students. When it came to their assessments, half of them spoke to me as if I was five, or did not bother to speak clearly and check if I had understood. Gnnnnnnnnnnnnnnn! Of course, they failed the assessment. Isn’t that worrying? These are our future doctors and nurses!

What are your hospital experiences – are they good or bad?