The story of Tracey and Brenton
Traceys story:
In 2005 when our daughter (Jessica) was 7 years old when she collapsed at school. She had complained of a headache to her teacher earlier but she said she did not want to go home. The school called an ambulance and the ambulance officers that attended thought she had suffered a seizure.She was taken unconcoius to the WCH. The doctors in emergency could tell by looking into her eyes that she had pressure on the brain so they took her to radiology and a CT scan revealed that she was bleeding from an avm on her brain. She had emergency surgery which saved her life. The pressure from the bleeding had caused her to have a stroke and we didnt know what the outcome would be for many days. She was in induced coma in intensive care for about a week.
After 10 days she was transferred to a ward and spent a further 4 weeks there. At first her recovery would take months and that she may not walk for months but she was determined to get better and with the help of all the doctors, physios, OT specialists ect she walked out of the hospital around 5 weeks after her surgery. Her original ct scan showed she had 3 avms in her brain, the one that bled was fixed with the surgery, the other 2 she had radio surgery on a couple of months later.
She had follow up MRIs in 2014 which showed an avm on her brain yet again they think it was one that was previously treated with radio surgery , she had surgery in Septemer 2014. A follow up angiogram revealed that they were not successful in removing the whole avm so she had to have a third chraniotomy in December 2014. She has since been given the all clear with an mri in November.
Both Jessica and I do both get nose bleeds ( not serious) and have positive bubble echo’s so probably have a small avms on our lungs but have not had any issues with this. I have also had treatment for intestinal bleeding in the past.
Brenton Wangs story :
My daughter Tracey Gibbs, my son Brenton Wang, and my granddaughter Jessica Gibbs have inherited HHT from their paternal grandmothers side of the family.
They have always suffered nosebleeds. Tracey in particular had to have her nose bleeds cauterised often when she was a child and teenager. We didnt know about HHT then. We found out about the HHT when my son Brenton collapsed when he was in his early thirties with a very low blood count and at first the medical professionals thought he may have lukemia. His family doctor guessed it may be HHT because he already had another patient with it. I asked the dr attending him if his problem could be HHT she said no because the lesions appear in the mouth first. Brenton did not have any in his mouth. After examinations and tests over the next week, they indeed did find it was HHT, and the amzing thing was that by that stage Brentons inside mouth was covered in lesions. His main problem with them has been in his intestines , he has had alot of treatment in the Adelaide Hospital with them burning off dozens of them in each treatment which went on for a couple of years every 3 months. They say he is clear of them on his intestines now but when he was having a liver scan they say they found lesions in his lung. They told him to try not to cough and if he feels blood in his throat to get strait to hospital, hopefully if that happens he will have time to do that, he has regular blood tests to monitor his blood and iron levels.