Hello,
Have now spoken to Diane in the Tofs office. She explained that there is going to be a TOFs council meeting at the weekend and they have the Adult TOF conference on the agenda. I am offering to take an active role in organising it. Diane has suggested I put in writing the particular issues that adult Tof and O/A people have. I am aware that one is finding medics with the knowledge and willingness to treat us. The Tofs office are working towards developing a database of professionals that we can turn to for advice. If any of you have suggestions of surgeons, physicians, physio’s, dieticians, counselling services that you have had a good experience of it would be great if you could mention them (with their consent) here on the forum. If you have something that you particularly want addressed in the conference please also comment on this thread of the forum.

It will take a while to get the conference organised but I will comment on developments as they happen. Any suggestions would be very helpful.

Many thanks
Sophie

Hi Sophie, yes I agree it is difficult coming to terms with disabilities. I have been awarded DLA, but mainly on the breathing side of things, I had to appeal 3 times and a Dr. came out to visit me. They tend to disregard the oesophageal stuff completely. But as you say, the beaurocrats dont understand the complications. As you know we are a rare bread, even when you look at the medical profession, they do not understand all the implications. I know that as I am a registered nurse, none of my colleages understood tof/oa.
If you can only work part time hours due to ill health, you should apply for working tax credits. Disabled employees can get their wages toped up to full time hours. A disability is termed a chronic condition that lasts more then 6 months, so your employer should reconise you as a disabled employee, so that you can apply for tax credits.
I think that as the years go past and more tof babies are born, the information will get out there. When I had my surgery, the odds were against me surviving, whereas now a days the survival rates are 95%. So us tofs are growing numbers. 
Thanks for phoning Diane at the tofs office, I’m really pleased that they are looking into a database of professionals. At the conference in Newcastle, the medical forum of specialists hilighted that care of the adult tofs/oa was lacking and it needs to be looked into.
If I can help with organising anything please let me know.
Take care xx

Hi,
How are you? I also trained in London but in the early 90’s (GOS). Have just been talking to my brother’s girl friend who is a very experienced practice nurse out in Australia. She had not heard of TOF or OA but did understand the implications once I explained what it was. We then moved on to talking about quakers.

tAKE CARE.
bEST WISHES
sX

Hi Sophie,
I wanted to train as paediatric nurse at GOSH, but my mum persuaded me to do my general training first. When I did my paediatric placement, I realised that I couldn’t cope with the babies dying. So I stuck with adult nursing. I guess that my mum knew me well. I wonder what role I will have in the future, as after my recent experience, I guess I want to work anywhere but the NHS.
Sam xx

Hi,
How wise your mum was! I wish I had done that too. It wasn’t until after I stopped that I realised how difficult I found it to inflict unpleasant procedures on children (however necessary). I cried when I gave my first injection, I felt I had betrayed the child (it was a premed.

Hope you all have a fab time tomorrow and your daughter has a very happy birthday!
Sx

I agree Sophie, it was a good suggestion of my mum, although at the time I was upset. As it turned out, she was right lol. I remeber having to de sluff the burns wounds of toddlers, the images will never leave me. But enough of that, its not always sensible to remeber the harrowing things from our nursing past. Even if it was a nesecary procudure. Have a good weekend Sophie xx

Hi,
I can imagine it was pretty grim, particularly as I guess the children were scared.

I was wondering if any other adult TOF/OA person has trained as a nurse, doctor or medically in general. It would be good to hear what we are all doing now. I was briefly in contact with Gary Spires a few years ago who has gone on to work for NASA.

Have a good weekend (what’s left of it) and keep warm.

Lol Sophie x

Hi Sophie,
one of the doctors on the forum at the TOFS conference was an adult TOF. I believe her field is dermatology.
I guess there could be a few of us that went into nursing or medicine, as a consequence of being patients from infancy. I always knew as a child, that I wanted to work for the NHS to repay them for saving my life. I am aware that in this country we are fortunate to have the NHS, as my parents would not of been able to raise the funds for the surgery required.
Sam xx

Hi Sam,
Just to say good luck for wednesday.
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Sx

Hi All

I’m a 29 year old TOF from Southampton.  I would be interesting in attending an adult TOF conference.

Mark

Hi Mark,
It’s really good to hear that you are interested in the conference. Have you got something you would really liked to be discussed there? So far genetics, on going physical problems, nutrition, emotional issues and our own achievements are on the agenda.

Keep in touch.
Happy New Year
Sophie

Hi Sophie

I can’t say I have any particular topics that I would like discussed as this would be more for personal interest and the opportunity to meet other TOF adult to share experiences.  I am aware that some TOF adults have developed over complications as they have got older and therefore this topic would be of particular interest to me.  The topics you have on the agenda sounds great and I look forward to attending the conference

Happy New Year to you too.

Mark

Dear Jan And Frannie,
Thank you very much for the message, it is really good to hear from you. How is Frannie?

One of the main issues we want discuss is how to get treatment for various TOF/OA related problems as adults. Many Paediatric surgeons and physicians now know alot about the conditions but adult surgeons are less clued up. At TOFs there has also been a suggestion that a database of specialits who know about our potential problems, (swallowing, nutrition, respiratory etc)should be created so there is somewhere that we, or our drs can turn to for advice. Not all TOF/OA/Vacteral Adults have ongoing problems with their health.

The other aspect of the conference will be to actually meet each other and celebrate what we have achieved alongside growing up with TOF/OA. I initially trained as a paediatric nurse. I have since worked in bookshops and have now completed a Montessori teacher training and currently work in a Montessori based nursery.

It must have been pretty scary when Frannie had the Polyp. I was born in 1970 with a longish gap. When I was 13 months the surgeon (Mr Waterstone) used some of my colon to bridge the gap. I’m really glad to hear that there are now people with our condition training to be Doctors.

Very best wishes
Sophie

Hello Everyone,

Just to let you know a potential date and place has been set for the adult conference. The exact date will be confirmed soon but it will be in October 2010 and would be really helpful if people interested in coming could respond on this forum. The various subjects for discussion are ongoing health problems, a talk from an adult thoracic surgeon, a respiratory specialist, hopefully a nutritionist/dietician and a genetisist.

The conference is being arranged so that adults who have TOF/OA and related conditions can gather together to discuss their experiences and have a chance to ask questions that their own drs cannot answer.

We are hoping that, if the conference is successful, one can be held on alternate years just as the main Tof conference is.

One particular aim is to develop a database of doctors and other medical specialists who are interested and have experience in caring for adults with Tof and related conditions. As more of us become adult and leave the care of paediatricians it is often difficult to find GPs and consutants who understand our condition. The creation of a database will make it possible for medics treating adult tofs to gain specialist information regarding the care of that person.

So, if you are an adult with TOF/OA or in the medical profession and are interested in coming please respond to this message.

Many thanks

Sophie Smallwood

Hi this is my first time posting. Just typed a great big long reply and it disappeared! So… short answer is that I would be very interested in attending this conference and I am particularly pleased it is in the Midlands and not the South. More accessible for most people I think.

I am an adult TOF/OA and an occupational therapist. I always said I wanted to be a doctor when I was a child but then I realised how much work it would take, so that was that!
Anyway, I think it would be very interesting to explore the long term impact of having TOF/OA, not just on people’s health but also on their ability to function in their everyday lives, choice of work role and general wellbeing. 

I know from my own perspective I have struggled with physical activities over the years (mainly because I couldn’t breathe properly) and have shied away from sports.  If I had known as a child that it wasn’t my fault, but it was because of the TOF, I might have been less hard on myself and more inclined to give things a go. 

As has already been identified, all the ‘dramatic’ and clever medical stuff (life-saving surgery and so on) happens at such an early stage (thank goodness) that these tend to become the focus of the medical and other health care professions who deal with neonates and children. 

So ... perhaps there is an opportunity for some research here… Not just from the medical perspective, but from the experiences of people who have lived with TOF/OA.