Gastro and Respiratory information for Adults born with OA/TOF

Welcome to TOFS "Gastro and Respiratory information for Adults with OA/TOF" Q&A session. For this session we were joined by Head of Respiratory Medicine and the Centre for Cardiovascular & Metabolic Research (CCMR) at Hull York Medical School, Professor Alyn Morice. [Tip: Use the quick links below to jump to any part of the video]
This video was recorded on the 29th June, 2020.
00:00 Introductions
Covid-19 related questions
01:25 I am in the highly vulnerable category and have been shielding for nearly 12 weeks, even though I didn’t receive an official shielding letter. Should I go back to work?
04:20 As an Adult OA/TOF, I don’t have many chest problems, do I still need to take extra precautions?
04:46 What suggestions would you have about returning to university?
05:14 I'm an H-Type OA/TOF, and have a few minor breathing difficulties should I consider myself vulnerable?
07:00 My daughter was found to have extra narrowing in her trachea. Given the respiratory nature of COVID is she vulnerable ? 
08:06 Might an OA/ TOF who does occasionally aspirate, benefit from Azithromycin at this time?
Cough related questions
10:25 Why do I cough when I am eating?
13:30 What can we do when A&E say “your numbers are good” after an aspiration?
15:10 Do you have any suggestions as far as cough suppressants are concerned?
17:20 Can you recommend any cough experts in Germany?
Medication related questions
19:20 I am allergic to Azithromycin. Is there an alternative?
20:58 Is there anything I can do to help with these side effects of Azithromycin?
22:23 Which medications you would recommend for an Adult OA/TOF with a TOF cough?
25:30 Should patients who have had a gastric transposition be monitored for vitamin and mineral deficiencies?
26:55 What are the side effects from taking PPI’s long term?
Respiratory exercises
27:47 Is it beneficial to purchase and use a Lung Incentive Spirometer?
Post-Surgery
28:48 I was recently diagnosed with H type OA/TOF. I have VACTERL. What should I expect post-op?
30:04 What is the general experience for people who have a colonic interposition?
Barrett's Oesophagus
32:20 Should I be concerned about silent reflux and Barrett's Oesophagus?
Alcohol
34:04 How does gastric transposition affect alcohol tolerance?
OA/TOF
35:45 How can Adult OA/TOFs better manage their respiratory issues?
38:23 Should I have my Nissen Fundoplication re-done?
41:20 Would you recommend a scope for someone who has suffered from silent reflux?
41:57 What would cause a foamy reflux four years after a fundoplication?
42:33 During and after I eat, I get a thick mucus in my throat. What is it and how can I stop it?
General questions
43:22 Do you know of any specialists in Scotland who deal with colon interposition surgery?
44:00 My daughter has just had a thyroidectomy operation and now seems to have her TOF cough back. Is this normal?
45:25 Is smoking much more harmful to OA/TOFs compared to the general population?
46:36 I’m unable to be sick or bring up any mucus. Is this due to dysmotility?
47:35 Would you ever do an endoscopy just to check the oesophagus to see if it has grown or stretched?
48:27 I’m experiencing more food becoming stuck, especially bread. Will this deteriorate as I get older?
49:26 My 14 year old daughter has tracheomalacia and complains of her sore chest and breathlessness during exercise. Could she faint due to insufficient oxygen?
51:14 Are there any complications after H-type OA/TOF repair for non infants?
52:35 Can Botox injections in the oesophagus help with motility?
53:40 I've been told that I have no motility. Should I request to be put on Azithromycin?
54:04 Does a fundoplication have shelf life?
56:38 If someone has Barrett's Oesophagus, would Azithromycin be preferable to PPIs?
About TOFS:
TOFS (Tracheo-Oesophageal Fistula Support) is a charity dedicated to improving the lives of people born with the OA/TOF condition and their carers. For nearly forty years we have been helping families through the challenges of bringing up a child with OA/TOF (also known as EA/TEF in some parts of the world), VACTERL and associated conditions.
Visit www.tofs.org.uk for more information and support.