newcastle tests results

we had been out of hospital for 3 weeks now and the soft diet was driving me crazy! i was desperate for a cup of tea but i could only have fluids and fibre energy drinks through my fibre drinks and fluids through my PEG to keep my weight stable.

i went for an xray first at the main hospital and met a doctor about my eyes who said brow suspensions wouldnt work now on my eyel lids which i already knew deep down. i will just have to get used to looking dopey!

The next day we went to cresta clinic and saw catherine feeny who did my obs and had a chat about how i was getting on then we saw professor turnbull who told the results of the xray i had done. My left side was totally clear but my right side still had some white but he said physiotherapy will help with that but he doesnt want me to exert myself becuase i will only become ill again.  We talked about the possibility of me having CPAP at night time but he said im not at that stage yet which is good news. but he said i may need it in the future which i considered anyway and that carry on with the soft diet (BAH!) but im happy with how things are going. im continuing the physiotherapy at home and the stadium gym.

i can just look forward to christmas now!

nibbles...

i have been on the soft food diet for a few weeks now and also having protein shakes through my PEG they don’t half make you feel bloated! i have been eating skips yogurts things that melt on your tounge but in the last week i have been a bit braver and tried harder foods such as brussels pate and tuc biscuits they went down my throat easier.

in a few weeks we have an appointment to see professor turnbull we weren’t due to see him til next year but as i was in hospital for pneumonia he wants to see us sooner and get an x-ray on my chest and blood tests.

To dye for...

Having been home a week nil by mouth apart from formula drinks going through my PEG i was going crazy i wanted something to eat!! i hadn't  eaten for 3 weeks!

i was sooo glad that the time finally came for my appointment for the dye to down my throat to show that food was going down the right hole 

We had to go to Halifax as that was the only hospital that did it near us and they only do it once a week. Don't ask me why!

in the appointment they gave me a apron to put on just in case it got messy and i sat next to a x ray machine   (dont worry i took my cochlear implant processor off!)  they first fed me the dye on its own to check i could swallow liquids which went fine. They then  fed  they dye with some yogurt and then the dye with yogurt and bit of biscuit in. Although they were happy with them all going down the right hole ,they were worried that food sometimes "sat"  in my throat called "pooling"  and they were worried because sometimes it sits there too long that it could go down the wrong hole. They said as long as i had a drink every time i ate it SHOULD be fine but i have  to be careful not rush. 

They were happy for me to start having soft foods such as yogurts and scrambled eggs etc but not a big meal like fish and chips. they dont want me to go crazy eating everything! 

The motto is slow and steady wins the race! 

pneumonia round 2...

its been 3 weeks since i've been out of hospital suffering pneumonia again. i had good help in my local hospital the doctors were great knowing about mitochondrial disease  during my time in hospital they gave me neutralisers and oxygen to help my lungs clear which took over 2 weeks and i was nil by mouth the whole time because the doctors were worried about food and drink going in to my lungs  (i was gagging for a cup of tea!!)  all i could have was the apple juice i use to drink my anti depressants and little sips of water and spit it out they didnt want me to swallow it. I got so hungry i was jealous of other patients getting their cup of tea!!

 

i had the ocuupational therapists to help me get the junk of my lungs using a machine to improve my breathing and help me cough better (it involved me breathing in then sucking my air out which was scary because you feel like you cant breathe but it does the job!!) 

i also had help with walking again as i still felt weak on my legs after being bed ridden for a week and hooked up to antibiotics and water to hydrate me, the  hospital gave me a walker to take home which helped helped for the first few days til i got stronger.

The dietitians kept an eye on my wight by having my hooked up to formula going through my PEG and making sure i was nil by mouth.

After 2 weeks of being in hospital i was allowed home but i had to be nil by mouth for a further week as they were not sure it was safe for me to eat or drink til i had an appointment to show that food and drink were going down the right hole. 

Mito spoils my tea......

Sadly i must have caught a bug when i was at the lily foundation weekend as i could not stop coughing and we decided to go to to A n E as it wasnt letting up we thought i might just get some antibiotics or something like that but i got admitted that night for pneumonia  they gave me antibiotics through a drip as well as fluids i was in hospital for a week but even at home im suffering as im nil by mouth til i see a speech therapist and i have a fluoroscopic swallowing exam to see if food and drink is going down the right way. The drs told me that it might happen again unless we got to see someone but im finding it frustrating that i cant eat or drink i miss my cup of tea but i have to wait another week to see this speech therapist so ill have to wait and see what happens  

the lily foundation family weekend...

last month me and the parents went to the lily foundation family weekend and had a fabulous time i got to meet new families who have a loved one who is suffering with mitochondrial disease as well as meeting old faces too. There were lots of information on stalls that would help people with mitochondrial disease 

using the remote and mini mic...

this is the remote (left)  for the kanso you have to change it to  "mic mode" to use the "mini mic" i plug the mini mic in to Phone/lpod/ipod or ipad  its a bit of a learning curve using it! But once you know how to use it its brilliant so far ive listened to the radio on my phone!

respiratory help...

I had an appointment in halifax hospital only because huddersfield hospital cancelled their appointment to see about my respiratory muscles and see if need any help with.this. we met a dr Ting who was happy to meet someone so rare with the condition i have! He took my history down and my sleep pattern. l have been given another appointment for tests to see if i need any breathing apparatus at night.  i have been sleeping long hours being deaf nothing wakes me! i have also been getting more out of breath when it comes to going upstairs and walking more than 20 minutes has left me using my manual wheelchair 

Mito gene results...

Its that time of year again! the yearly visit to see Prof Turnbull and his team! We had to spread it over 2 days as my eye dr was on the Monday and then prof turnbull n team on Tuesday (dont ask why! i think its coz its in a whole other building!)the eye dr was worried mostly about my eyes being dry and gave us some gel to put in 4 times a day. we asked about maybe re putting in the brow suspension in the left eyelid but he said it wouldnt be worth doing as my eyelid muscle is weak.

3 years ago, me and my parents gave blood for a new test its been a long time waiting for it! in the hope we would have some results from that test and they did!   We knew that my parents were carriers but Prof Turnbull said it was very complicated and complex and he drew a diagram to help us haha but in hindsight i surprisingly k new most of what he meant as he tried to explain it. We now know  the name of my condition  as "mitochondrial disease RRM2B" It was a relief to finally have an actual name and gene! he told us it was one in 500,000 that i have this condition which was a bit shocking! i knew it would be rare but not that rare!

Other than that Prof Turnbull was worried about my breathing  which was making me tired and so he said maybe i will need help with that overnight as he was worried about me sleeping long hours.

He also noted that i had to be really careful not to break any bones if i ever fell over as that would be a disaster in the healing process.

He is also going to arrange for me to have some physio just to keep my muscles moving  

Found out about mitochondrial disease open day where i meet up with others who have the condition in October i always look forward to that!

wet room

Me and the family have opted for a wet room for me as my needs are becoming more common i find it hard to get off the toilet without grip bars and we are thinking of the future when it comes to bathing me we currently had a bath which i struggled to get out of so the wet room has taken over 2 weeks to do so we are lucky we have a 2nd toilet as the builders have been in bathroom! They have also given me a higher toilet to get off more easily when im having a mito attack  pics to come later  

kanso review

kanso review 

ive now my kanso for 2 or 3 weeks now and its just as good as the N5 it took a few goes for me to turn on and turn off manually (we had to go back to the ci centre as they forgot to put the automatic switch off setting on!)

Disposables last a good few days depending on how much you wear it and its really good to just switch it on and go.

ive had 3 programmes on my kanso to "play around" with. i have 3 programs on it 2 new maps. At first i had it on old map as that was i was used to but it seemed quieter than normal so i switched between 1 and 2 over the last 2 weeks which are louder and better and im surprised how quickly i adapted to the maps. i now find my old map quieter and hardly use it My only complaint was that the microphones are very sensitive and all i could hear was my hair at times but it gets quieter in the background when sounds are around. 

i have only used the accessory microphone once in my phone listening to the radio which was clear 

i havent had any problems with the kanso fallling off unless someone knocks it when hugging me! 

an advantage for me is i can wear earrings again without the back pin hitting the processor. its still really weird i keep going for my ear when taking it off and there!s nothing there! 

I get kanso on 17th February! Can't wait to try it out!