Laura's medical Journey

"snow" way...

2010-01-07T13:30:00.003Z

The big freeze is not to my liking... my feet are tingling a lot, I don't really know if thats good or bad. I am supposed to start back at the school volunteering but I have been suffering from a horrendous cold so I have had to email in and tell them I am coming in next week instead. I am having to put extra feeds on to keep my energy up because I really don't feel like eating and my throaty cough is scaring the hell out of me and its taking all my energy just to clear my throat and cough. I haven't really had much sleep either which is not helping matters. On another note, I have been admiring the lovely view of our back garden after all the snow fall!

Expectations of a CI...

2010-01-03T18:45:00.003Z

A few people have asked me what to expect of the cochlear implant whether it what the sound is like or what ear they should do etc..

I do try my best not to get their hopes up because a cochlear implant sounds completely weird at first and takes a lot of practice and listening to get to the point where you start hearing "almost normal as possible" because a Cochlear implant is not totally perfect hearing. It is as good as you can get it as you are getting used to each programming map. BUT you DO get used to the map eventually if you keep wearing it and it gets better.

If you wear it every single day and listen to everything and anything, and after several mappings after every other month, you will begin to see the benefits.

it is also better to implant the worse ear, or in my case any ear since I am profoundly deaf.

Everything takes lots of practice with the first few stages of the switch on, and you will get to a point where you hear more clear and hear music, the phone. doorbell, voices.! the list is endless!

The operation is just the first hurdle of a cochlear implant.

New Year 2010

2010-01-01T20:37:00.002Z

This new years went rather good for once, better than the last two years. I have made no resolutions this year either. I plan to have a good year though, despite the upcoming eyelid situation...

I also am starting volunteering again at the school since i left last summer, that will be a good chance to get out there and do something even if it is just one day a week at the moment

I'm trying not to think about the eyelid thing at the moment which is going fine at the moment, I shall deal with it when it comes!

Also, this january, I get my button PEG changed, i hope it doesn't hurt too much when the nurse pulls it out... it shouldn't do, the nurse at Newcastle said it would only be a scratch and its over, not like when I got the tube PEG pulled out which was awful pain! (but then again i think nurses lie!)

I have my family and friends and the boyfriend for support for which I feel so lucky!

I have also been wasting Christmas/new year time playing crash banidcoot -mind over mutant hehe, i loved the game on PS2 when I was younger. :)

So fast...

2009-12-28T19:46:00.002Z

Christmas has come and gone really fast this year... I guess when you are a kid it takes agesss before Santa comes and you just want to open your presents! I had a nice time during Christmas but it just went by very fast this year for some reason. I have been keeping myself preoccupied with a painting kit I got for Christmas.

My eyes have been very tired over the christmas period and I'm feeling I must do the eyelid lift procedure and that I must at least give the doc a chance to talk about it and what it involves. even if it scares the bee jeebies about of me.

A New Year A new start.

2009-12-24T16:06:00.002Z

Merry Christmas Everyone! hope everyone is well and having a good "hearing" christmas! I am planning to spend christmas with the family and it will be a fab day :)

xxx

Snowy Feet brrr...

2009-12-21T15:16:00.002Z

As the snow arrives, I am trying to keep warm as possible. I have been out in the snow on outings to my friends and family some near some far away and the car has been freeeeeeezing! My body seems to warm up apart from my feet. My feet take a while to warm up even with 2 pairs of socks on! At least it has stopped snowing for now and the roads are getting gritted! I am looking forward to spending christmas with the family and doing the usual xmassy things! :D

Silly hospital confusions...

2009-12-14T14:56:00.002Z

At least some good news for Christmas, I don't have to see the nurse every Monday til January because my mum knows how to unfill and fill my balloon in the PEG. My mum has seen the nurses do it themselves plenty of times even though they don't have a clue about this type of button PEG. They actually have to look through instructions on how to do it. I don't know why my mum can't do it all the time and have a check up of the nurse on the phone?

Then in the mail today. an appointment for me to have an eye check up in Newcastle in January when I'm due to go in March?? When the agreement was to go up to Newcastle in March to have my check up on my condition, my eyes AND my PEG. yes it's always one long day there... mostly sitting around waiting to actually see them then it's loads of tests (which I'm quite used to that it's become a drag...) I assume they wanted to discuss the eye lid procedure. (which I'm still freaking out about) but I will listen what the eye docs gotta say but in MARCH! Even though I'm freaking out about it, I know I have to do something about my eyes. Even if I don't like the fact it's surgery near my eyes, but i'm hoping it will be the LAST procedure I need doing because of the condition. Then I can relax for the rest of my life.... maybe... I hope...

Either way I'm looking forward to christmas and forgetting about my medical worries have just have funnn!

Shake, Shake...

2009-12-11T13:06:00.002Z

Last night I was watching a documentary on bbc3 about a man who had been paralyzed from the neck down. At one point of the documentary, these nurses had to shake him on the bed laid down to get any fluid off his lungs. I had totally forgotten about when I had that done too when I was in ICU in 2007 and I had pneumonia. Even with a drain in my lungs to get any fluid out my lungs, I had to do this shake too. The nurses put your hands on top of your chest and shake up and down once or twice. I hated having it done because they had to push very hard on my chest and it wasn't very nice at the time but eventually it did the trick and got the fluid off my lungs. Like i say I had totally forgotten about that part... Some parts are quite clear in my mind and other times I see something that reminds me about that time. I am very grateful for it though for the docs and nurses at the ICU unit at Bradford Royal Infirmary.

Ringing...

2009-12-06T12:39:00.002Z

Every now and again, I get ringing in my ears, even with the CI on. It's usually set off by lots of different noises going on! Such as a loud TV and my parents trying to talk over it. Or a disco and lots of people talking at once. When I get this ringing I don't when it will stop , things can make it louder such as running water out of a tap or if i switch my cochlear implant off. Which I find strange.. you switch the CI off, it gets a bit louder but when you switch it back on, its still there but quieter. It can go on for a long time or a short time.

Last night It was set off by the TV having to be turned up because my dads going deaf... old age.. hehe I tell him to use the subs but he doesn't he can be there going TURN IT UP! TURN IT UP! And I'm there going "It's loud enough!" How ironic! :P

Anyway, the ringing went on til 3am after the loud TV and parents talking over it. I eventually got to sleep, but I still have it at the moment, hopefully it will it fade out soon.

Headaches...

2009-12-05T17:00:00.003Z

With my eyes getting strained, I am experiencing headaches more. I can have good days and bad days. With the bad days, where i have to go rest my eyes and have a sleep. Hopefully if i have the eyelid op, that will solve that part that i don't have to strain my eyes anymore. But I know that the eyelid lift wont be for a while yet, maybe late 2010.

But today I have been listening to Christmas songs! And all the christmas fairy lights are up! The Xmas tree will be later this week. :)

Funny CI moment...

2009-12-01T22:21:00.002Z

I put my Christmas socks on this evening, hehe with little santas on, and when ever I walked around, there was a *tinkle tinkle* I knew what it was. But when I'm sat down, and it *tinkles* I'm thinking what the hell is that! Then I'm aware I have BELLS on my socks! hehe Silly me!

In spirit of Xmas..

2009-12-01T16:50:00.002Z

I have changed the background of my blog! only 25 days left to christmas! :) Bring on the families, festive food, Xmas music and presents! woooo!

My eye situation.

2009-11-29T17:12:00.005Z

For the past 2 years, the docs at Newcastle have been asking me about a eyelid lift procedure and they did so again at the last PEG op too. I never give them a chance to talk about it because I don't want the docs to touch my eyes surgically even if it is just my eyelids. They aren't so bad when im wide awake but at worst they look like this

and it gets me down at times. The droopyness is because my eyelid is a muscle and because of the condition I have, the muscles get weak therefore my eyelids don't have the strength to open fully especially when I'm tired. It is a symptom of the condition which is Mitochondrial Multiple DNA deletions.

I know they may eventually get worse so I'm going to have to force myself to talk about the procedure when I go in March 2010.

I was scared about the PEG procedure but this eyelid procedure, even hearing about it basically terrifies me. My mum would love me to have this op done because she knows my eyes were pretty when they are open enough. She says "you have lovely blue eyes, we want to see them"

Now every time i see that they are droopy I feel ugly and people have often commented on them in the past saying am I drunk when I've never touched a drop.

I cry about it sometimes too. I know when it comes to march, the reality is going to hit me and we need to talk about what I've been avoiding for so long.

Doc's say it just a little cut in the eyelid to bring it up, but its never just a cut is it. This is my face we are talking about. It's right there in people's faces. I wish to speak to someone who's had it done first to see the benefits. I don't want to go into this without any research.

My parents keep saying its basically cosmetic surgery on the NHS! They are now so closed when I'm tired my eyelashes get in the way of things and make things fuzzy. I don't know how it will affect my double vision either.

I'm just not going to think about it now til the time comes to talk about it next year.

Swine flu jab...

2009-11-25T16:22:00.002Z

When I go the letter to have the Swine flu jab, I originally wasn't going to have the jab done but I went to the docs today for a different reason and they recommended I had the Swine flu jab done. I didn't want to risk being hospitalized with it if I ever got it so I decided to get it seeing as I was there anyway. so ill have a dead arm for a few days AND its on my sleeping side (i can never sleep any other way than on my right side) Prepare for a grumpy Laura without sleep! but its better safe than sorry and kept healthy as I could possibly be!

Nursing a chore...

2009-11-16T12:34:00.001Z

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...

2009-11-09T19:26:00.005Z

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...

2009-11-04T18:05:00.002Z

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...

2009-11-01T21:09:00.002Z

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...

2009-10-25T19:24:00.002Z

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...

2009-10-21T16:41:00.005+01:00

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...

2009-10-21T00:38:00.003+01:00

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...

2009-10-21T00:10:00.003+01:00

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...

2009-10-18T19:32:00.002+01:00

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...

2009-10-11T22:08:00.002+01:00

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!

insomnia...

2009-10-08T15:59:00.002+01:00

I've been having some trouble sleeping, the last few nightsI've only managed to close my eyes but not actually sleep... I had a bout of insomnia when I was in hospital too and finally fell alsleep when I just could'nt keep my eyes open because I was that tired. Hopefully that will be the case this time but I dont really want another sleepless night. I'm not really worrying or thinking about the PEG procedure or anything else so I don't know whats causing my insomnia :0S

Hope fully I will get some sleep soon! I certainly need it! Im not focusing very well without it!