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.
Newcastle update 2010 part 2...
We then went over to the BRAND SPANKING NEW part of the hospital and by this time, I was totally exhausted from walking around the hospital and the combination of not sleeping very well meant I was so tired that I was getting achey and couldn't walk far so they decided to give me a wheel chair to go round the rests of the tests because Newcastle Victoria is really huge and lots of long corridors meant a lot of walking. I had a brief chat with the mitochondria doc about how I was getting on with things. I then got wheeled to have my echo on my heart which was a bit uncomfortable but all was fine! Then I was wheeled to get a blood test which was OUCH! coz it was in a while as they took about 15 vials of blood!!! THHHHHEN it was back to the mitochondria doc to see the dietitian as I have been losing weight despite being on the feed. So we have decided to try another feed and see if that works. Our dietitian in Huddersfield should really be keeping an eye on me but we haven't heard from her since last year! The team at newcastle are great because they understand about mitochondria and take it seriously and keep an eye on me. just a shame we have to travel 3 hrs for that! So for now the priority is my eyes and wether I have the op done. So had a lot to think about on the way back home. i didnt cry the entire time i was at hospital but i shed a tear in the car. it was a lot to take in from the whole day.
We then went over to the BRAND SPANKING NEW part of the hospital and by this time, I was totally exhausted from walking around the hospital and the combination of not sleeping very well meant I was so tired that I was getting achey and couldn't walk far so they decided to give me a wheel chair to go round the rests of the tests because Newcastle Victoria is really huge and lots of long corridors meant a lot of walking. I had a brief chat with the mitochondria doc about how I was getting on with things. I then got wheeled to have my echo on my heart which was a bit uncomfortable but all was fine! Then I was wheeled to get a blood test which was OUCH! coz it was in a while as they took about 15 vials of blood!!! THHHHHEN it was back to the mitochondria doc to see the dietitian as I have been losing weight despite being on the feed. So we have decided to try another feed and see if that works. Our dietitian in Huddersfield should really be keeping an eye on me but we haven't heard from her since last year! The team at newcastle are great because they understand about mitochondria and take it seriously and keep an eye on me. just a shame we have to travel 3 hrs for that! So for now the priority is my eyes and wether I have the op done. So had a lot to think about on the way back home. i didnt cry the entire time i was at hospital but i shed a tear in the car. it was a lot to take in from the whole day.
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