Guest post from my wife :)

Steven and I occasionally chat about what amazing innovations and medical progress might be made in the future. I always say that if there was the option to give him sight and the option to restore his hearing, I would choose sight. This is because I would love the safety that would provide him with, and the freedom. Steven strongly disagrees and says that he would always choose hearing. The first time he told me this, I was quite surprised, because to me, it’s his blindness that creates the most challenges. Once he explained it though, I completely understood. He has never known sight, and has learned to manage without it right from the start of his life. His hearing however, he didn’t lose until his mid twenties, and he misses it very much.
He talks fondly about how much he used to enjoy audio books, and how when he was listening to a good one, he would listen to it non-stop for most of the weekend. He also used to enjoy tv series like Blackadder, and listening to football commentary and music (though, as far as I am concerned, he has rather questionable taste. Right Said Fred- noooo!). Even in the time that we have been together, I have seen the amount of time he spends doing these things dwindle to virtually no time at all. He occasionally can manage to hear some football commentary but it’s a strain, and he can’t listen to audiobooks at all now. I think we were both concerned about how much his world was narrowing. It was upsetting for him and I found it a terrible thing to watch at times. Norrie’s is a cruel thing in that way. It was a great relief that we had started on the journey towards a cochlear implant last year, and that we were finally getting somewhere! It was in this sort of limbo period that Steven discovered the wonders of a Braille display/iPhone combo, but that deserves its own dedicated post!

Several people have said over the last couple of years, that they think the fact that I am a primary school teacher is one of the things that makes us work as a couple. I suppose it’s true that I am used to being patient, used to thinking ahead to spot difficulties before they happen. Perhaps I also have more experience of disability and additional needs due to my job, so those things do not faze or worry me. If those things are bonuses in our relationship, then that makes me happy, because I love my job and I love my husband, and it’s nice that the two things are mutually beneficial. I talk about Steven often to my class, and he has visited the school to talk to the children about being blind, using technology, getting around and reading Braille. They are interested in the things that he can do and how he does them. They were fascinated by the idea of him making his own sandwiches in fact one little girl was horrified that I “let” him use a knife, but others were confused as to why he couldn’t drive! He’s something of a celebrity to them and one of the children even gave him their smiley face sticker and told him that he couldn’t take it off.

My hopes for the future are that I will see Steven being able to listen and participate more easily in conversations with one or two people. He’s a sociable person and enjoys chatting, and it’s frustrating for him that he can’t. We do our best in restaurants, and when we’re in large groups, with me repeating what people say to him (he tunes into my voice better) and by using some deaf blind manual signing. It’s tricky though, for me to keep up with the conversation as well as make sure that Steven knows what is going on, so I’m not always able to provide him with as much information as I would like. I also hope to see some of his favourite activities returning over time, especially listening to audiobooks, but I have no illusions that he will be able to hear everything, or that it will be an easy journey. I feel excited for him when I think of switch on and the rehab and just the idea of the possibilities ahead. I tell him that he’s lucky that he has his own personal tutor to help him with his rehab homework. He’s not so sure! He’s worried that I will be something of a hard taskmaster, but it’s all for his own good 😉
I feel very proud of how much my husband has achieved, and how he has faced all the recent challenges. It must be his time now to get something positive back.

Going home after surgery

As mentioned last time, the nursing staff were great and arranged a side room for me to sleep in so that Vicoria could stay. We both had a pretty good night’s sleep—although because of the fluid I’d taken in during the day I did wake up regularly needing the loo. This made me even more grateful that the hospital had made it possible for Victoria to stay as I’d have felt like a real pain buzzing the nurses every couple of hours!

Awake at about 8 for breakfast (the food at the hospital was surprisingly edible) and we were visited by the doctor at about 9.15. He took off the very uncomfortable pressure bandage, had a look at the wound and, to my great relief said I was good to go home. We were surprised that I was being sent off with no bandage at all! The wound looks quite neat and tidy according to my wife:

I’d been warned that the process of getting ready to leave can take a while what with having to collect medication etc but the Guys staff were great and, after a quick wash, I was discharged. And this is where the adventure begins…

Just as we were checking out, the person giving us a lift back to Buckinghamshire texts to say ‘I’m outside in the north wing carpark’ Brilliant we thought, a quick getaway and home in time for lunch. Twas not to be… After wondering around the hospital for ages wondering where the North Wing Car park was, we asked at reception, only to be told that there wasn’t a north car park at Guys. Yes Ladies and Gentlemen, our lift was patiently waiting for us at the wrong hospital. It turns out they were at St Thomas’s about 3 miles away. As they didn’t have a satnav it took nearly 2 hours for them to find Guys, what with all the road closures and the diversions and the roadworks! But we finally made it home just before 3! I think our lift will never trust the directions she is given ever again. Considering she’d been driving around all morning, she was great and took it in good heart but it must have been very frustrating.

 
I was thrilled to be back home and celebrated in fine style with a sleep!

 
For the next couple of days, apart from feeling tired, I was feeling pretty good. Unfortunately this state of affairs wasn’t to continue and I started to feel quite dizzy and nauseous. This is all pretty normal as I understand it, and I just have to wait it out! The pain from the wound has been minimal and I’ve been using over the counter painkillers at the few times when it has been more painful. I have been quite tired and sleepy a lot of the time too.

 
So then, that brings us pretty much up-to-date really. I’m relaxing at home reading and generally being pampered by my lovely wife.  I’ve have tried to persuade her that the consultant advised a diet of baked goods to aid recovery. She’s not convinced but has made me ginger cupcakes and choc chip cookies, so it’s not all bad! My switch-on appointment is on the 19th and 20th September so not that far off really. I’ll write more later if I can think of anything interesting or enlightening to say… so don’t hold your breath! 😉

There’s a thing in my head!

Well, it has taken me a little longer than I’d hoped to feel human enough to update the blog but, as they say, better late than never, and all good things come to those who wait!
So, on Friday morning, my wife and I turned up at Guys hospital for 7 AM as the hospital letter had told us to. The letter had threatened us with a wait that could last until 2 PM before my operation which was indeed an exciting prospect. As it turned out, I was first in! My audiologist had mentioned to me a couple of weeks ago that I was the only one cochlear implant being done that day, so I should expect an early start but we were still a little taken aback to be taken straight through to put on my hospital gown and paper pants!
I then spoke to what felt like every member of medical staff currently in the building as they checked, double checked and triple checked everything. They were extremely efficient and the anaesthetist was particularly reassuring. He’d done his homework, even looking into Norrie’s disease to check whether there was anything he needed to be aware of before putting me under. The checks took about an hour or so, and I was taken down to the theatre about half past 8.
I must admit that during this time I was getting more and more anxious about what was to come. The thing that was worrying me the most was recovery—waking up without being able to see or hear was not something I was looking forward to. While I would still have the hearing aid in my left ear this really wouldn’t help me much. The hospital staff were great, and agreed that Victoria could come down while I had the anaesthetic, and they said they would phone her when I was going into recovery so she could be there when I woke up too. This meant a lot to us, as we were worried about how the staff would communicate with me, when I couldn’t hear or see.

It’s fair to say that recovery was about as much fun as headbutting a wall! Victoria was brought in as soon as I started coming round. I remember feeling very disorientated and that I kept thinking they hadn’t managed to fit the implant. I asked Victoria repeatedly why they hadn’t done it, and she kept telling me that they had. It was a very strange feeling. I was sick several times and because of that, they kept me in recovery for close to 3 hours! Victoria used deaf blind manual signing and the Braille poster to communicate with me while I was confused. Once I had been given some magic medicine and had come round a bit more, she was able to speak into my remaining hearing aid. We had a fantastic nurse who made the whole experience much easier. She really was amazing.
After that I was able to go on to the ward where I was looked after by another amazing nurse called. I was drowsy and kept falling asleep, but other than that I felt okay. In fact I was quite positive that I was fine to get up and walk around and go to the bathroom myself. My nurse insisted that I wasn’t, and sure enough, when I stood up to put on my pyjamas, he was right! I felt very dizzy, which is common with this surgery. My nurse was excellent, always explaining things to me before he did them, and using a clear voice so I could understand.
I had heard all sorts of stories about the gigantic bandage that I would wake up with, but it wasn’t quite what I expected. It was incredibly tight, but not as big as I was expecting. It was the pressure of the bandage that was the only thing that caused me any pain at that point, but ibuprofen took care of that quite well.
The ward sister came and spoke to Victoria while I was asleep and they agreed that it would be much easier all round if Victoria could stay the night to help with communication. Victoria had shown the nurses the Braille poster and they were very impressed and grateful. Even so, I was anxious about being left alone. The ward sister promised to see what she could organise, and sure enough, at 7.30 that evening we were moved to a private room and Victoria was given a bed at the end of mine. They even gave her dinner! They were more than accommodating to my needs.

So there we are, there’s now a thing in my head! Tomorrow I will blog about how the night and going home went.

The eve of the operation

Another really lame title—I’ll try harder in future!

Well, after starting the assessment process with Guys and St Thomas’s hospital back in December last year, the time has finally arrived for me to have my first implant. Normal practice seems to be to implant your worst ear, so that in the unlikely event that something goes wrong, you still have the hearing from your good ear to work with. I’m having my right ear done—which is my worst ear—though to be honest, there isn’t really much in it. Because I’m blind, I’m entitled to be offered bilateral implants (implants in both ears) and, as soon as I’m confidently using the first implant I’ll be asking to go back on the list to have the second ear implanted.

Over the past few weeks, loads of people have been asking a variant of the question “are you nervous?” Well, the answer is not until recently but over the last week or so I’ve suddenly realised that ‘this is it’ and that there is no going back to hearing aids if it doesn’t work out. I’ve also been thinking about the fact that as of Friday, I’ll have a thing in my head… eek!
The thing we are most worried about in terms of the actual operation and the night following it spent in hospital, is the communication issue. As I’m only having one implant at this stage, I will still be able to use my other hearing aid—though, on its own, this won’t be much help to me, especially with the unfamiliar voices of the hospital staff. We raised this with the nurse at the pre -op appointment. Slight pause and nervous look followed… Clearly they hadn’t thought of this… My wife, Victoria, being a kind-hearted soul, decided to put the poor woman out of her misery and made a couple of suggestions, all of which were pounced upon like a drowning man grabbing a life raft! Victoria suggested that we could create a poster that would have certain likely phrases on them, such as ‘are you in pain?’ ‘do you need the toilet’ etc. Below these we would stick a braille label, which the medical staff could put my finger on so I would know what they were trying to say. Victoria has made the posters so I’ll attach a picture of this sheet to this blog post. The pre-op nurse also suggested that they might want Victoria to stay with me, right up until they put me to sleep and also to be in recovery when I wake up. Then if needs be, she can use deaf/blind manual to communicate with me. They was also talk of the hospital staff asking Victoria to stay in the hospital overnight which, while very reassuring for me would probably be very uncomfortable for her! We very much hope that this will happen. It has started to be the thing that we are most nervous about.
I have to arrive at the hospital for 7 am tomorrow morning so I can have the privilege of sitting around while they sort themselves out! No idea what time my actual operation will be, though my audiologist mentioned a few weeks ago that they weren’t doing any other implants that day, so hopefully I’ll go in to theatre sooner rather than later. I’m hoping to be back home on Saturday afternoon so I’ll report back then (or at least when after I’ve checked the football scores).

Bye for now. 

More about my hearing loss

Blog title:
More about my hearing loss.

Apologies for the unimaginative title, I didn’t sleep very well so the creative juices aren’t really flowing today!

I thought I’d write briefly about my hearing loss to give you a bit of context as to how we got to this point. As I mentioned in my first post I was born blind but my hearing loss has developed over time. It wasn’t really noticed until about the age of 12 when my school noted that I was having some difficulty hearing the teachers. My mum mentioned that I used to have my music on loud at home—though I thought this was something that all 12 year olds did! At this time, I was given a hearing aid for my right ear and, about a year later, one for my left ear. Things stayed the same after this for the next few years. After leaving school in 2002, I spent the next few years drinking too much, sleeping late and generally avoiding real life (also known as attending university). At university, I really started to notice my hearing loss—in large lecture theatres I was unable to hear the lecturers, and group work in seminars was difficult. I managed to muddle along for a couple of years until I was lucky enough to receive a free Phonak Smartlink Plus. The mother of my then girlfriend worked as an audiology lecturer for a large university, and had connections with the major hearing aid manufacturers and managed to get them to give me this wonderful FM transmitter. This made a massive difference to me—I could sit anywhere and, if the person talking was wearing the transmitter hear every word they said wherever they were in the room! I could plug it in to the tv/radio/my computer and not disturb other people when I listened to things. After university, I worked for several years in an open plan office environment, with adaptations such as JAWS screen reading software and a Braille display. I also had a personal assistant. During this time, my hearing seriously deteriorated, and I started to have some severe difficulties such as:
 Social situations involving big groups or noisy locations (restaurants, pubs, parties)
 TV
 Audiobooks
 Screen reading software (JAWS)
 Accents

This narrowed my world considerably and I had great difficulty in coming to terms with the change. I did get used to it eventually, but often thought back fondly to when I could listen to an audiobook for several hours without straining to hear and becoming exhausted. Those were the days!

I also struggled with episodes of “sudden hearing loss” which were misdiagnosed as sinus problems. These episodes would last several days before improving and meant that I could only really read my Braille books during that time. Later on I found out that these sudden losses are fairly common amongst Norrie’s men.

So- that was my situation when I first started to enquire about the possibility of a cochlear implant.
At the time, I was living in Wales and attending a hospital that I won’t name and shame! They assessed me by giving me a sentence test in quiet and then told me then and there that I didn’t meet NICE guidelines. (NICE guidlines can be found here if you are interested: http://www.nice.org.uk/nicemedia/pdf/ta166guidancev2.pdf ) I was surprised but, as they were the experts, I didn’t query it. Everyone I mentioned this too WAS surprised, including other audiologists!

When I moved to England to get married, I requested a referral to Guy’s and St.Thomas’ hospital, as I had heard that they were among the best. I just wanted a second opinion, as I didn’t trust what I had been told before. My experience with G and St.T was fantastic. They were so thorough, taking a detailed history, looking through all my notes, enquiring about Norrie’s Disease, followed by hearing tests in quiet, then in noise, scans (MRI and CT) and so on and so on. They also took full account of the fact that I am blind. This process took 6 months (a little longer than the 15 minutes in the hospital that shall not be named!) Finally in July of this year I was told by the consultant that I was eligible! The audiologist explained to me that even though there had been no change in my hearing since I was tested in “you know where”, I was in fact eligible, especially as I was deaf blind.

So here we are. My op is the day after tomorrow. I will be blogging my experiences as I go along in the hope that t will be informative to anyone going down this road, especially those that are deaf blind.
I hope you’ll stick with me!

Pleased to meet you

Firstly, thank you for taking the time to read my ramblings (or blog as they call it these days). I thought that I would put this blog together for a number of reasons. Firstly, I hope it will be useful to other people (particularly deaf/blind people) who are either going through the cochlear implant process or are thinking about it and wondering what is involved. When I was undergoing my assessment I was interested in reading about other people’s experiences and, while there were quite a number of blogs from people who had received an implant, I couldn’t find anything from a deaf/blind perspective with the added issues this entails.

My second reason for writing this blog is really for my own benefit. The implant is going to bring about huge changes in my life and this will be a good way of getting my thoughts in order and also seeing how much (or little ha ha) progress I’ve made. So much will be going on that it can become easy to forget little things so the blog will act as a reminder.

So, a little about me. I always find sections like this hard to write as it reminds me of writing internet dating profiles! Next I’ll be telling you I like walks in the country, good food and fine wines! Or maybe not…

I’m a young (ish) man living in the south of England with my wife and my kindle. We got married earlier this year (me and my wife, I didn’t marry the kindle) and we’ve recently moved into our first house. My wife will post the occasional guest blog post, either when I’m feeling too lazy to post one myself, or when she wants to give a partner’s perspective on things.

I have been blind since birth due to a rare genetic condition called Norrie’s Disease. Here comes the Science bit! It’s an x-recessive genetic condition. This means that it is passed down from mothers to sons. The condition has a 50 chance of manifesting in sons and 50/50 of making carrier daughters. I have an uncle and a cousin with the condition, but I also have a male cousin and an uncle without the condition. If me and my wife have children, we would have either a boy with no sign of the condition or a carrier girl. Phew! That was a lot to take in wasn’t it?

Norrie’s causes blindness, usually from birth or shortly afterwards, often followed later by a degenerative hearing loss. Many Norrie’s boys also suffer cognitive delays and behavioural problems. It manifests differently in each family, and even within families. My family doesn’t have any incidences of cognitive delay, but we do have quite severe hearing losses.
Well, that’s it for my first post! I will post again this week to explain a little bit about the assessment process that I have been through. Please feel free to make comments (nothing too rude- my mum might be reading!).