Sunday, 1 July 2012

1st July already!

How can 6 months go by so quickly?
Half way through the chemo regime as well. I am feeling tired and spent most of yesterday in bed or on the sofa with my onsie on and cuddles from Stork and Amber.
Kieran went to a college open day, Siobhan and her boyfriend, David, took him to have a look around. He wants to do catering, he is very enthusiastic. He came home on his own while Siobhan got a little bit of shopping. He told me he liked it, he will have support which is good. Where did the time go, where are my little ones, they have grown up so fast.

I was talking to my sister Wendy about my TOF, she was wondering how I didn't have the same op as Richard when he was born. This makes it easier to understand. Richard was born with the most common form of TOF. He had tracheo oesophageal fistula which means his oesophagus (feeding tube) was connected to his trachea (Windpipe). He is diagram 1 (84%) after the normal diagram. He also had oesophageal Atresis as his feeding tube was cut off at the throat. He had a major operation after he was born to repair this. He choked on his food a lot when he was a baby due to scar tissue and strictures (tightening of the oesophagus) this makes it difficult to swallow.
My TOF was missed because I have a different variation. I was born with both oesophagus and windpipe complete but had a tube (tracheo oesophageal fistula) connecting the tubes. this was missed until 2009 when I had a barium swallow that showed it up. I recognised it right away as the radiographer showed me. After reading my Dr's notes, I realised this was why I had always had chest infections, bronchitis and pneumonia so often, a lot of it masked the mesothelioma which started, I think, in 1994. I hope this explains things better. My Dr's notes do say that as a child it was difficult to feed me milk as I would splutter on it. I went back a few times about this, the reason I was spluttering was because the fluid was going onto my lungs.
After seeing Dr TOF, things are a lot easier, I have had 3 procedures done to clip off the tube, I can't have an operation now because of the meso but Dr TOF has been wonderful and has tried his best and I do think he has succeeded where i was told there was nothing could be done. If it did succeed I would have been the first in he UK to have it done and second in the world. With development, this may mean that babies born with my type of TOF would not have to go through an operation, it would be so much easier for them.



No comments: