June 2002

During the first day, Mandy had a contrast echocardiograph (bubble study) to check for shunting and therefore the possibility of PAVM's. The test was positive, which showed that PAVM's were very likely. This was followed up with a CT scan that confirmed the presence of around 7 or 8 PAVM's located on both lungs. The good news was that none of them is large enough to compromise her health right now. She will have to take antibiotics during any future dental work to avoid the risk of brain abscess, but can otherwise live life normally. Follow up CT scans will be required every 5 years to check for growth of the PAVM's.

This work ultimately confirmed that Mandy and Rebecca do have a hereditary condition called HHT and that it is likely for other members of her family to have the condition.

Rebecca also received a CT scan that showed the areas of her lungs that might need the closest attention during the Trans Catheter Embolotherapy later on in the week. It suggested that the right lung would be the target area. Her oxygen levels were measured at about 79 to 84% standing and 90 to 92% laying down (supine).

Wednesday was the day that Rebecca was admitted into Yale for heart catheterization and embolotherapy. The procedure lasted about two hours. Dr White felt that the embolotherapy carried out at Columbus in February had actually taken care of the worst PAVM's, but he discovered a segment of Rebecca's lower right lung that was affected by a significant number of diffuse PAVM's. The whole segment was occluded using platinum coils.

Rebecca did really well and came out of the procedure feeling groggy only from the general anesthetic. That night, the doctors reported that she had been chatting with them until the early hours. When we came to see her the next day, she was more tired from being awake for most of the night than from ill effects caused by the catheterization.

By lunch time, she was up and about playing. Not long after that we were taking her back to the Ronald McDonald house where we had been staying.

For any readers that can get Japanese television (not many of you, I think), Rebecca's time in the hospital was followed by a NHK film crew. They will be screening a documentary on 30th June, 2002 in Japan.

08/22/03