March 2002

The pulmonary specialist at Akron was also dismissive about the possibility of there being an additional complication from Rebecca's lungs (on top of the PAVM's). He did provide additional insight into what is probably going on as far as her intolerance to activity now. She measured 82% oxygen saturation on the day, which he considered very low and close to the level that can very easily slip away to even lower levels. He said that even a slight fever would consume enough of her vital oxygen to cause her significant problems and that keeping her away from school was probably one of the best things we could do.

He openly admitted that he knew very little about PAVM's and set himself the task of calling other specialists in the Akron hospital.

The question that we will have to address very soon is whether to switch hospitals and give Akron a try or persevere with Columbus and try to force the departments involved to work together as a team.

Meanwhile, our concern that Rebecca might not be getting the right treatment has prompted us to contact the center of excellence for PAVM's and HHT at Yale University Hospital (hello Yale if you are reading this page!) to ask them if they would be willing to assist. Yale is situated about 550 miles east of us, north of New York City, in Connecticut.

Since having several of her PAVM's embolized, Rebecca has been having symptoms of oxygen starvation. In extreme cases, she gets a headache and is sick - classic altitude sickness, just like mountaineers! Her tolerance for exercise is very low and she has taken to putting herself to bed in the afternoon for a nap.

The Cardiologist at Columbus doesn't believe that this is being caused by the PAVM's alone and that there is something going on with her lungs. The family doctor tends to agree. Sadly, the Pulmonary specialists are dismissing all the symptoms as being cardiovascular in nature and do not appear to be interested in working with Cardiology to find out exactly what is going on.

Rebecca's family doctor has had quite a few problems recently with the Pulmonary department at Columbus and has decided that it would be in her best interest to see another specialist at Akron. What this means is that her care will be split between Columbus (Cardiology. Radiology and Genealogy) and Akron (Pulmonary).

She had an appointment for 1st April at Akron, but has since got a cancellation for Tuesday 26th March.

The preliminary results of the brain scan are clear. The radiologist will study the images more closely and report his findings in a couple of days time. The whole process took 15 minutes in the CT scanner, but there was 3 hours of driving and 3 hours of waiting around at the hospital - not the most efficient use of time!! It was good news though, so we are not going to get too upset about the time!

We visited the local doctor today and discussed a recurring headache that Rebecca is getting. The last time she had it, she was also sick and had trouble staying conscious (this weekend).

As a matter of precaution, we are going to take Rebecca for a CT brain scan to check to see if there is anything abnormal going on. Initially, an appointment was made for a MRI scan, but that was later ruled out because the magnetism could move the recently installed coils in her lungs. A six week waiting period is advised before a MRI can be safely done. This is unfortunate, because a MRI gives better resolution than CT. Nevertheless, they are confident that CT will pick up anything serious if it is present.

The CT will be done with contrast, which means a dye will be injected into her bloodstream to show any abnormalities up if they are present.

All this will happen tomorrow (Wednesday 13th March, 2001). Nothing was available at short notice at Children's Hospital, so we will be going to Akron (just south of Cleveland).

Rebecca went to the hospital today for a checkup with the Cardiology doctor. This was an opportunity to see her in a 'normal' situation (unlike on the ward). Her oxygen's were fairly low when they were checked (around 79%), but she had been very active just prior to the measurement.

The doctor was keen to see Rebecca get back into a 'normal' rhythm with school as soon as she can. He talked about patients with much lower oxygen's than she has in regular school. The important thing is that they (and she) have to rest when they get tired and just take things at their own pace.

The doctor didn't believe that Rebecca would ever be able to live a completely normal life and that an athlete, she would never be. It will probably be an ongoing process of correcting a few AMV's, maybe once a year. Indeed, the hospital is already thinking about scheduling here for February 2003. In the meantime, there will be regular checkups by both Cardiology and Pulmonary departments. Between now and next February, there are plans to do an MRI of her chest and do a heart echo (ultrasound).

Embolization of all the PAVM's was also ruled out because it would kill too much of the lung.

Colds are perhaps Rebecca's biggest threat. They could easily turn into pneumonia. For us, it is especially important to act early if we think that a cold is beginning to cause a deep infection in the lungs because there is a risk that the bacteria associated with pneumonia could travel round her body to give her an abscess of the brain.

Clearly the future is uncertain, but the hospital is beginning to look at the situation long term.

Whilst we were at the hospital, Rebecca was seen by an Eye Doctor to check for AVM's on her retina. They were clear, which apparently is very good news. He said that if he had found something, it would have pointed to a bad illness.

08/22/03