February 2002

Home - Rebecca is back home after having a further heart catheterization yesterday (19th February, 2002). Everything went smoothly and Rebecca came out of the procedure feeling better than she did after the last heart catheterization.

Duration - The procedure started at 9.10 am and finished at 11.40 am. This was shorter than we had expected, but by that time, she had used up her dose of radioactive contrast dye used in the procedure - so that was the determining factor for how many PAVM's they could treat. In any case, if the radiation dose was not an issue, there was concern that there could be some pain from the implanted coils, so the radiologist had no intention of filling Rebecca's lung with these metal wires.

Warnings - Before she went in, we were warned about all the possible complications that there could be including stroke (from air bubbles and if a coil were to break loose and travel through the bloodstream to the brain). The Anesthetist was especially concerned about possible complications. We were told not to be surprised if she had to spend a couple of days in intensive care. There was also a risk of fluid build up associated with the coil embolism's (pleurisy). Fortunately, all went well and none of the above came into play.

Coil Embolization - In the end, the Interventional Radiologist was able to insert 5 coils, treating 4 individual PAVM's and one cluster of PAVM's. I was going to talk about blood oxygen levels, but they are so hard to measure reliably in Rebecca. During activity, they will fall into the 70's, but at rest, they can go into the high 80's and low 90's. With such a span, it is hard to say what her average was before the treatment and what it is now. From what we can see, there has been an increase, but this could be as small as 1% or as high as 5%. We were told that as the embolism's settle down over the next one to four weeks, her oxygen's could increase a little more.

Feeling Good - Rebecca came through the catheterization much better than previously. She experienced much less discomfort in her legs (entry site) and came out of the anesthetic without nausea. She also seems very bright and energetic. It is hard to say whether this is because of the embolizations, but if we were to guess, we would have to say that there has been an improvement.

Next Step - The plan is to review Rebecca's condition on 6th March, 2001 with the cardiologist. A decision will then be made, after consultation with the radiologist, about whether to carry out further treatment in the near future (1 or 2 months time) or to wait for a while longer before considering any further work.

Cause - In the meantime, Rebecca will be undergoing tests to try and identify the underlying cause of the problems. The fist of these tests will be an examination of the eyes to determine if she has AVM's on her retina. If she has, this is a good indication that she may be suffering from a condition called Hereditary Hemorrhagic Telangiectasia (HHT).

Long Term - The long term prognosis is not certain. During the visit, we heard it for the second time that a lung transplant may be necessary in a worst case scenario as she got older.

Technical Explanations - For those of you with an inquisitive mind, I have written a more technical review of the proceedings on the PAVM page.

I have decided to leave the images of Rebecca's lungs before treatment on the site because of their clarity compared with the latest set of radiographs. The following images were taken during the first heart catheterization at the end of January. Contrasting dye was injected into the arteries supplying the lungs to trace their paths. If you look carefully at the images, you will see round 'nodules' at the end of many of the arteries. These are the PAVM's. To give an idea of scale, the catheter used was 1.2 mm in diameter (you can see it in the images). The number scale at the bottom of the pictures is in centimeters.

Lower Right - If you look closely, you should be able to pick out about 6 PAVM's. There may be more that have not shown up well or are too small to clearly resolve by this technique.

Lower Left - This image was less clear, but if you look really carefully, you can see that this lobe has many 'nodules'. It's really hard to make them out, but I can count 30 plus without too much difficulty.

Upper lobes - The upper right was said to have a few nodules (less than the lower right - including a fairly large one). The upper left was clear of nodules.

During the tests, oxygen saturations were measured in blood returning to the heart from the four lobes of the lungs. The three lobes affected by PAVM's were around 84%, whilst the lobe free of PAVM's was a near normal 94%.

08/22/03