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

30 July 2008

Plasma exchange

Me in 2005, when i was 6st

When I got to the intensive care unit, the nurses were very nice and told me not to worry. As they wheeled me in, I saw lots of machines and people with tubes in them but I was too weak to be bothered by it. I just wanted to be better again.

Mr Busby decided to try a
plasma exchange, (which puts your blood through a machine and cleans it and then returns it to your body) to give my body some strength. They couldn’t find a visible vein on my arm so they had to do in a vein in my groin; a surgeon used an ultrasound scan to determine where to put it. I hardly felt a thing to be honest because I was just lifeless and so tired.

After 3 days in intensive care, I was moved to an adult ward in a private room. I had 6 plasma exchanges and each of them took 2 hours to do. After each plasma exchange I felt myself getting stronger and I began walking around with the help of my mum. I had visits from my dad every evening and my brother came occasionally! After a week or two I started to eat slowly again with easy food that I could swallow like yogurts and mashed up fruit.

Mr Busby came round and told me what he suspected, "
Myasthenia gravis" a serious muscle weakness condition. I worried how it would affect me and got a bit depressed the more I knew about it.

By this time, it was December and I would have been out buying presents for my friends but I was in hospital. I wondered whether I would be out in time for Christmas Eve as I didn’t want to spend Christmas in hospital, I wanted to spend it at home with my family. Thankfully, I was nearly well enough to go home and agreed to discharge me if I drank a nutritional milkshake and take some steriods everyday. I agreed and they took my feeding tube out from my nose! It was very uncomfortable but I was pleased it was out. I was home on the day before Christmas Eve! Although I was feeling rather isolated despite having all my family and friends at our house and I tried to join in the festive season. I had various check ups over the Christmas holidays. I felt very depressed about the fact I might have
Myasthenia gravis and how I would cope with it. My family and friends reassured me that I would get through it. I was so grateful to hear those words at the time and motivated me to get better!
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