Dear all,
A young TOF adult who is struggling to receive ‘knowledgable’ follow up care would like to hear from/make contact with others. This is what she says: “I often get things stuck but as I have been discharged from paediatric care all follow up has been lost. I have also struggled since I came to university as I don’t seem to be able to get hospital appointments either here, or at home without a brand new referral.
In terms of associated problems, I have a VSD which was diagnosed prenatally on Ultrasound scan. Aged 10 I suffered back pain and an XR revealed lumbar and thoracic scoliosis, which often stops me sleeping due to the pain. I was diagnosed with asthma as a child and despite never having had an asthma attack this label stayed with me into my 20’s until I found a very good practice nurse who finally got me referred to a respiratory clinic - it turns out I have an obstructive airways disease known as bronchiectasis. This predisposes me to chronic chest infections - I am still waiting to find out what has caused this as I am 21, and have never smoked. The most common cause in the developed world is Cystic Fibrosis - I haven’t had any GI symptoms, but it can still be diagnosed without that on the basis of genetic testing. I failed to thrive as a child and had repeated chest infections (a cardinal sign of CF), but this was put down to my TOFS. I do not yet know if it is related to the lung problem, but would be interested to hear from anyone else who has experienced anything similar.
I also had a congenital hip problem known as FAI (femoro-acetabular impingement) which is where the ball is the wrong shape for the socket in short. I had it corrected in 2005 but have been in pain ever since and have been told I will need a hip replacement in my late 20’s early 30’s. Again, I would be interested to hear from anyone else with a similar problem.” Please call the office if you can offer any advice to this TOF Adult, tel: 0115 961 3092.
Thank you in advance,
Diane
