Friday, 3 May 2013

Brilliant appointment with the TOF Dr.

I had an appointment this afternoon with the Dr who is now dealing with my TOF (Tracheo oesopahgeal fistula).
He asked me many questions about the history of the TOF. I am sure I was born with it as I have always choked on liquids. I can remember as a child that I coughed and spluttered on dilute juice.
TOF means that I have a fistula, a tube, connecting my food pipe and windpipe. It is an abnormality.
My son, Richard was born with the same condition, his was a variation to what I have.
He needed a major operation the day after he was born to correct it.
A nightmare time for my family and I. Siobhan was about 2 1/2 and coped with it all very well.

I am figure 4 (4% of 100 babies have this variation)  Richard has figure 2 (84% of 100 babies have this variation) It affects 1 in every 3000 babies. Both Richard and I were very lucky as we didn't have any of the other difficulties that go along with tracheo oesophageal fistula.

The appointment went very well, it looks like this Dr TOF is going to try and close it. He is liaising with Dr TOF in Taunton and with my oncologist.  I was very surprised to hear that the Dr who put in a stent (May 2010) when the TOF was first found said I had mesothelioma in the oesophagus. This has never been reported on any CT scan reported by Dr TOF when he did an endoscopy. There were no blockages, this was also confirmed when I had my last CT scan, no blockages. The Dr back when the TOF was diagnosed wasn't happy with me having the stents out so I am not surprised he wrote that. Fear tactics with some Dr's.

I am very happy with the way things went. I am not sure when I will have the procedure, it would be great if it is before I start chemo, we shall see.

My day has been very good, my breathing is a lot better. After my appointment, I picked Siobhan up and we went to buy some lamp shades and ceiling roses so we can change our awful 1070's porno lights and dimmer switch. It is the cheap gold looking lights, I have hated them since we moved into the house. We went to B and Q, well customer service isn't their strong point. I asked where the ceiling roses were. The man I asked pointed and said "the back wall", well where ever they were they were not on the back wall. We were going to give them our custom, we decided against it and went off to home base where we found exactly what we wanted.

I was so pleased that when I came out of the shop and sat in the car I wasn't gasping for breath. I have more capacity, I know I have. The pain killers are working perfectly and I am resting when I need to.

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