Nursing a chore...

Every Monday since I got the new button PEG i have to get up early to see the nurse that comes and changes the water in the balloon in the PEG which has to be done due to the saline water evaporating. The nurse is teaching my mum how to do the saline water so that she can do it and the nurses dont have to come so often which i will be glad because every time they come round they make me think i'm this ill person which I'm not where my mum and the nurse get ov bags of medical stuff that mum keeps. Things like the water syringes and the creams and the tubes for my PEG. it can feel a bit endless sometimes but I know the nurses are only for a short time. Im not looking forward to getting my PEG changed after Christmas in January. The nurses assure me it’s not as bad as having the tube PEG out (which by the way was horrendous) I'll believe it when it’s done ha ha. I'm glad to get out of the house after christmas too when I get to go back to my volunteering. I hope Christmas doesn't take it's toll on me and I want the holidays to last!

For now I'm keeping busy with the tapestry!

My Pro/Cons and rules for the cochlear implant...

Pros

You are still deaf without the external part on so you are still part of the deaf world but you just have the beauty of both hearing and deaf worlds.

I can listen to music

I can hear my family and friend's voices and still lipread

I can hear the TV without looking at the screen (sometimes without subtitles!)

I can hear a person without looking at them

I can hear birdsong, rain and all kinds of sounds

I have good speech

I have had my cochlear implant for 15 years now *even if i did have 2*

I can switch off whenever I want if i hate a sound or just have a headache!

Having the BTE small and discreet

I can tell the difference in accents and voices and different sounds.

It's not 100% hearing but it's good enough and clear enough once you get used to the mappings.

Cons

Group talking can be a pain with lots of people talking at once

Background noise such as loud music or lots of talking in

The operation eek

The programming of the ci. i hate having my map changed.

You need be careful of your implant area ie dont bump the area very hard!

When i'm in the car on the motorway, all i hear is the roar of the engine! argh

Other things to know about when you have a CI.

static electricity - ie a tv that has been on for a long time or clothes, you need to be careful not to touch them with the wire of the ci.

Air travel - you need to switch off the cochlear implant when the plane is taking off and landing, i tend to leave my cochlear off the entire journey from switching it off before getting on the plane and turning it back on gain when Im off the plane (cant be too careful!)

Meningitis- before you get the implant, or even after make sure you are protected against Meningitis by getting an injection.

Ear infections - this is an urgent matter, if you have an ear infection go see your cochlear implant doc as soon as possible.

X- rays - are fine although I usually take external part off for an x ray.

Any kind of electric surgery is a no no. If in doubt, consult your cochlear implant centre.

Shop security systems - are fine I've never had a problem with them but if you do,, you can show them the cochlear implant card

Airport security systems - these are different to shops and will scramble your mapping so ask the airport for a frisk search instead. I have never had a problem with this and airport understand. if they don't show them the cochlear implant card.

If in doubt with anything, contact your cochlear implant centre and they will always be happy to help you! :)

Hope this helps! x

Gloomy days...

The nights are drawing in now an getting dark early, its sooo gloomy, it makes me feel down! But I am much looking forward to seeing and hearing the fireworks and christmas is soon too.

I have been keeping myself busy doing tapestry and wasgijs (look it up if you arent aware of them)

I have made a group on Facebook for mitochondrial people to join but so far no one has joined...

i feel a bit lonley regarding the ocndition because I dont have anyone to talk about it with apart from the docs who dont have it but research it Id like to see how other people cope with it etc maybe I really am a rare gem.

I get a lot of cochlear implantees on the blog but no mitochondrials even if it was just one person, I would be happy because I'm not alone. There's not a lot of people out there with the same condition I have but if there is, I haven't found them yet! I'll keep trying anyway!

knitted character...

Halloween is now over, I look forward to Bonfire Night and hearing all those bangs, whistles and booms of the fireworks!

The nurse is coming over tomorrow to change the water in the balloon of my PEG. This is the balloon that keeps it in my tummy! I get this changed once a week, it can be 2 weeks but the nurses in our town say 1 week because the water in the balloon can evaporate.I

I'm still working on wasgij's and tapestries alike as well as drooling over Harry Hill's TV burp's knitted character! hehe hes well cute! :)

Update on the new PEG...

I have come alone well with the new PEG (picture in the last blog) although I still haven't got acustomed to using the tube that you connect to the PEG to flush water through yet. It's not so easy when you can't bend your neck down enough to see your tummy! So Mum has been helping with that til I get used to it!

It is rather strange not having the tube though, I still act as though I have it like I expect it to be there and stuff it in my trousers or up my top so its out the way of whatever I'm doing and its not there anymore. Almost like a ghost tube! hehe

But I am still rather pleased with the smaller, more discreet PEG despite the horrendous ordeal I had to go through to pull the last one out!

Hopefully, this one will be better than the last one! :)

The difference in PEGs...

The difference in peg change!

The one I had from May 2007

to the one I had changed in October 2009

It was worth it hence the pain. Its a different peg though so Im still getting used to it!

The newcastle PEG part two...

After my parents had something to eat, we went on to the next section of the day which was going to the ward where they were going to do my PEG change. Yet more endless corridors of the hospital! We got to the ward where we sat in the waiting room for an hour after we signed in at the reception. The nurse that we saw before was going to do it for us so she took me and my mum to a side ward room and told me to lay on the bed. I wasn't sure what to expect... She told me it would cause some discomfort. I thought I was going to get an injection to numb my tummy area but noooo , she put numbing gel that did bugger all because when she started PULLING (yes literally pulling the damn thing out of my stomach) when I catch it on something at home, does hurt but that was nothing compared to the excruiating pain of when she was trying to YANK it out of my stomach! I tried to stop her pulling it but mum pulled me back and I just burst out crying because of the shock of the pain when it finally popped out of my stomach = and she put the new one in. Just like that, it was all over and I could relax for a bit on the bed! The nurse put a bandage underneath the new PEG because some blood has come out when she pulled it out. I didnt relax for long though because another doc came along who works with the mitochondral doctor Mr Turnbull so I had a few more tests to do to keep up to date. Like walking on a straight line and checking my eyes etc... The doc wanted to talk about doing my eyes again but I was in no mood to talk about doing another procedure!! No way! After all the tests were done, we were free to go home and I can chill out and recover and not have to think about anything else for a while! Although on the way home, I got thinking, in my lifetime with this condition, how many more proecedures will come up? Now it's my eyes but what else could crop up? :S It's gona be tough but i'll just have to get on with it when the time comes. For now, I will get used to my new PEG!

The Newcastle PEG part one...

It's been a looooooooong 2 days!

We traveled to Newcastle yesterday and stayed over night at a travel lodge hotel. Not that the bed was comfy, it was solid that I couldn't sleep! They did have the internet so I could chat to Gwyn and check facebook thought! I can't seem to go without checking Facebook every 10 mins! Even on my phone much to the dismay of my mum.

Because the bed at travel lodge was solid I got no sleep apart from waking up and twisting and turning and trying to get comfortable but it was no good. I was a complete zombie today which could be a good thing when you are walking endless around the long corridors of Newcastle Victoria Hospital! Has any one ever been there?? the place is a maze especially now there's new parts of the hospital has been built.

Part one of the day

We walked the endless corridors of the hospital to find the ward where we would be meeting a PEG doctor and the nurse we have been talking to over the phone. (mind you I liked her til she yanked out my PEG, more on that later...)

Most of the day was waiting and waiting, but when we got in, the PEG doc and nurse talked to me and m parents about the different kind of PEGs there were and the advantages/disadvantages of them etc, I got a bit upset talking about it because who wants a PEG at 24? I just didn't want it at all! But not having one wasn't an option because of my swallowing when I'm weak, it can be a lifesaver and keep my weight on. So my parents decided on the PEG for me, the PEG we chose is eaiser to manage at home because we are 3 hrs away from Newcastle, we needed the easiest to manage at home with the district and abbot nurse. We couldn't get a PEG where we have to go all the way up to newcastle if there's a problem as the hospital in Huddersfield don't do button PEGs, just the tube ones!

We then went for something to eat where I had to be nil by mouth which I had been most of the day anyway because the nurse told me to have a light breakfast which i did at 9am. By 1pm, I was starving and watching parents have their food and a nice cuppa tea was killing me!!

They were so meannnnnnnn!

continues in part 2...

Newcastle awaits...

I'm all set for going up to Newcastle and not really looking forward to it but it will be good to get it over and done with! I'm not overly sure what will happen when I get to the hospital but hopefully it wont be too bad and they wont fiddle about with my PEG too much (well, apart from the pulling the damn thing out and putting a new one in...)

but im hoping it wont hurt too much what with the numbing ness of course...

I will be back with a brand spanking new small PEG which won't bother me like the tube does! I will post the difference on here when its done. I'm pretty sure that it will be very much long awaited!

Gwyn has been around for the last few days, helping me forget about it, going to the cinema we saw UP which is was very funny. Id recommend anyone to go see it! :)

Not long now...

There's just a week on Tuesday to my PEG change procedure at Newcastle, I'm still not sure what to expect on the day. All i know is that on the morning I'm going to see the PEG doc and discuss some things such as which type of PEG I want, what's going to happen and the doc to have a look at my PEG and PEG site. In the afternoon, I will have the change done which takes about half an hour or something like that. Hopefully it will all go smoothly with no problems because I have to go home to Huddersfield after it's done. Any problems I may have, I would have to go all the back to Newcastle because they did the procedure and the Huddersfield and Bradford NHS don't work with the PEG that I intend to choose which is the press- stud type of PEG.

The PEG nurse will keep an eye on it though so its no worries! I hope!

As far as i know, I get the procedure done by a local which I'm not looking forward to having after the experience with my muscle biopsy. Hopefully I will cope better with this one! No shivering and crying!