Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story

12 May 2014

Newcastle results...

wow this is the first time ive had to sit down and write a blog!! so he re goes

we went travelled up to middlesbrough first to drop in on family my nana and aunts and cousins esp little cutie 2nd cuz evie! she turned 2 on the day we went up she looked so sweet!! :) we stayed 2 hrs to catch up and then travelled to newcastle a premier inn in the city centre.  my nurse came on the monday and did my button and changed it from 3 months to 4 months since im only using it for meds not feeds 

the next day we traveled to newcastle victoria hospital and found somewhere to park (parking is a nightmare in newcastle ciry centre!!) we headed to the cafe first coz we were hungry and then we went on to the eye department luckily it was empty so didnt have long to wait! my eye doc who did my eyelid surgery 2 years ago was happy with my eyes although he said i have to keep them moisturised as they dry out quickly but over all he was happy and dont need to see him for another yr 

we then got myself a wheelchair as the next appointment was on the other side of the hospital and a long way to walk!!! We waited for 15 mins before we were called in and saw prof turnbull and my dietitian. we discussed what had been going on with everything like my diet and overall health which was good. they weight and heigh me although i wasnt happy about my pounds ive put on!! i blame crisps!! need to get back to the gym! 
Prof turnbull was more concerned about my mental health he wants me to be social and get out there be independence he sent me next door with a doctor and we did a mental tick test and hopefully that will show im of sound mind!!  while i was doing that prof turnbull was on the phone to my GP to make sure they get my meds right and are taking care of me then i went back in with prof turnbull and we had a chat about what i like doing and what i want to do he also gave me the results of the blood tests they took in December he told me they need to more investigation but he says what ever i have is very rare and im to keep calling mito MULTIPLE deletions for now til we find out exactly what i have! 

apart from that i have been crafting! :D i will put some pics up soon! 
Post a Comment