Hello,
Thank you very much for your message. It is great to hear from you. I think the computer cut off your signature. I am really pleased that you would be interested in coming to the conference. Referring to what said about being hard on yourself, I think alot of the problem is that we are few and far between so we end up comparing ourselves to totally fit people as we have no one in the same position to talk with. Sorry, that was aukwardly put.

How are you doing at the moment? It would be great to hear more from you, with your name.

Look forward to hearing from,
best wishes
Sophie

Dear Jayne and Francis,
Many thanks for your lovely message. I promise this is not a lone venture. It is being done with tofs and also with advice from fellow adult tofs.

How are you all?
Many thanks again.
Best wishes
Sophie

Hi Sophie
Thanks for your comments. The computer didn’t cut off my signature - I chose not to put my name, mainly because this forum and it’s member list is public. I have a ‘username’ which I’m happy to be called by! I’m not being deliberately awkward, but I don’t share my health issues with everyone I meet and if I put my name it would be quite easy to track me - especially as I’ve already stated my profession.

I am a ‘fan’ of the TOFS facebook page so I’d be happy to send you a private message if you would like to get in touch.

jaynefrances - 13 March 2010 07:40 PM

Hi Sophie,
Can I ask, just out of interest, and forgive me if this is a rude question, but what are your first memories of ‘being a tof’ eg. hospital appts, feeling different at school? etc.
I think that an adult conference is such a good idea not only for the adults but for us as ‘new’ parents to know what to expect and how to explain to our children that they are different - and after all, they will be adult tofs one day too!
Jayne x

Hi Jayne
I wasn’t sure if this was just directed at Sophie, but I’m hoping you are generally interested, so I took the liberty of responding!
I remember mostly the hospital appointments as being a quite scarey but also quite an exciting experience as there was a beautiful rocking horse in the waiting area and I loved riding it!  I went for check ups til I was about 11 or 12 and I remember feeling very uncomfortable with being prodded and poked by men I didn’t know, who talked to my mum rather than me. I was told I had only one kidney (I actually have a horseshoe kidney) and I was told that if I ever smoked it would kill me after one pack!! (Not sure if it was true, but smoking was never an option after that bit of advice!)
I didn’t feel too different at school - just a bit skinny compared to the other kids. When I was little I remember choking quite regularly and being quite used to getting food stuck. People used to want to pat me on the back, which used to irritate me as I knew I just had to wait for it to go down and fight to control my breathing.

I could go on but I have to go now… Hope this helps!

Hi,
How are you? I quite understand about not wanting to use your real name. For quite a while I used my cat’s name. Do you have a cat? I was about to read your comments to Jayne and Frankie, then I pressed the reply button and lost it. I used to be a nurse as did another adult tof I’m in touch with. Do you ever use Face Book?

It would be great to get to know you.
Take care and best wishes
Sophie

Hi Jayne and Francis,
Great to hear from you. I will check out your comments about gastrostomy feeds. Apparently my surgery to repair the atresia was put off because I had an infection around the gastrostomy site. It healed and I had the surgery a month or two later. My childhood memories are much like Welsh witch. Swallowing things the wrong way and/or food getting stuck and not wanting to banged on the back! Similar experiences regarding outpatient appointments too. However, hospital stays were less stressful. I loved the nurses and later trained as one. I have a particular memory from when I was very young, being treated at GOSH. Some dignitary was visiting and we children were given a little plastic windmill to wave from the balcony. I was so excited.

I was born without a thyroid gland. Although it was diagnosed fairly quickly (pre Guthrie tests) the lack of thyroxine did effect my co-ordination. It was that that made school difficult rather than tof problems. I had a colonic interposition.

Although we all have similar experiences, there is a great deal of variation in the amount and degree of health problems caused by tof. I hope paediatricians have got better at communicating with their patients and respecting their dignity.

One thing that I hugely appreciate Tofs for is making it possible to meet other people with the same condition. I wish it had been possible to meet other children with tof when I was young. It is wonderful to be in the company of people who you don’t have to explain yourself to.
Take care and keep in touch.
Very best wishes
Sophie

Hello Sophie, really interested to read all the postings. I was born in 1957 with TOF/OA, volvulus, extra thumb, odd vertebra etc. I trained as a general nurse in 1976 followed by sick childrens nursing in 1981. Currently work in community childrens nursing although get tired easily these days - is this a result of NHS or TOF or older age !!!
I am really keen to attend adult conference - hope this comes off
Best wishes katrina

Hello Katrina,
It’s great to hear from you! Wow, you’ve done well to keep nursing all that time. Working for the NHS pays a huge toll on energy. I only managed a few years. Where are you based? I am really pleased you will be coming to the conference. I am not sure if the date has been ammended here on the forum, but it is now going to be on the 16th October.

I guess if you have been working as Sick Children’s Nurse you must have cared for a number of young Tofs. As soon as I know more details I’ll let you know.

Hope you had a good day
Very best wishes
Sophie

I’m a 34 year old adult with OA, and would love to attend the Adult TOFS conference.

I have recently been diagnosed with Dysmotility of the Oesophagus which means I am now reliant on Gravity for my food to go down, rather than muscle contraction.

Has anyone else been diagnosed with this and if so is there any advice they can give me?

Mark

Hello Mark,
It is really good to hear from you. I am very glad you want to come to the conference. It is going to be on the 16th October, hopefully in Solihull, Birmingham.

Yes, a lot of us with Oesophageal atresia have dismotility. How was your atresia mended? I had a colonic interposition. I find eating slowly helps although that can be awkward socially. The other advice is to eat smaller meals but more frequently. Do you find some food can burn on the way down? With some pills I take a spoon of gaviscon before I take them or have them with yogurt. Both line the oesophagus and protect it from acidic things. If possible avoid certain foods that cause the most blockages. You are in good company.

Looking forward to hearing from you.
Best wishes
Sophie

Hi Sophie

Thats great. I occasionally work in Solihull so that’s perfect for me. Look forward to hearing more about it. Whereabouts in Solilhull is it likely to be?

My atresia was mended by joining the two bits of my oesophagus together through stretching.

It’s great to talk to people who know what I’m talking about - better than the ” there’s nothing we can do” that you tend to get from the medical profession.

I haven’t had burning, just general blockage or the feeling of blockage. I’ve not had any burning and I’m very lucky that I don’t suffer from reflux. I have used honey in the past to assist food going down, but will try yoghurt, if only because it’s better for my teeth!

Thank you for your guidance, much appreciated. It’s the greatest thing suddenly to not feel like an outsider.

Mark

Hi Mark,
Great to hear from you. Glad to have helped. I have just been speaking to a Mark Tof down in Southampton. There is a Facebook thread too. We seem to congregate there as well.

I asm glad you don’t get the burning, the blockage is quite enough. If things do get tight smoothies can be quite helpful for getting food in.

I am not sure where in Solihull but once we have the details I’ll let you know. It is handy that you sort of know the area. I haven’t a clue!
Take care and have a good day.
Very best wishes
Sophie

Hi Sophie

If I can help let me know.

Mark

Hi Mark,
Very many thanks. I will ask.
Take care and have a great day.
Best wishes
Sophie

Hi all - looking forward to meeting up in October - thanks for arranging this Sophie
Do you know if there are any older TOFs out there ie 50 years plus -
Best wishes Katrina