It's Not This, That, But What the HECK is That?

We are learning more what Fiona doesn't have rather than what she does have. So we are waiting for more testing, more doctor consults. What we know right now:
1. She has had 2 lung bleeds.
2. She has arterial-venous malformations in the bottom of her right lung.
3. There are at least 4 AVMs that are visible. One has been embolized so it won't bleed anymore. The 3 others are small. All were present on original CT films but we were only told of one a year and half ago and only of 2 more in November.
4. Bronchial artery embolization was successful and no more bleeds. It was large on the original CT film as well but we weren't told about it. (The bronchial artery was 3x larger than it was suppose to be)
5. There has been NO change in her CT films over the past year and half.
6. The doctors are surprised she has had lung bleeds. Maybe from the low platelets? So they can not prevent them or predict when she may bleed again.
7. Liver disease is causing these lung problems.
8. It is NOT Heptopulmonary Syndrome as diagnosed in December. (All oxygen levels are normal)
9. The pressures in her heart of normal.
10. She does NOT have pulmonary hypertension. (This is a very good thing)
11. She has a positive bubble echo, which means the heart is shunting from the right and left sides.
12. They don't know if it is AVMs or a hole in her heart.
13. Cardiology says there is nothing wrong with her heart.
14. Pulmonology says that the AVMS shouldn't be shunting that much. A year and half ago the shunt was 4-5 seconds, now it is 2-3 seconds. Pulm thinks the shunting is a hole in the heart.
15. The doctors can't explain her trouble breathing and chest pains. More tests are needed.
16. All pulmonary tests have come back normal.
17. In December all blood levels were low: red blood cells, white blood cells, platelets and albumin. Liver tests are NORMAL except the platelets.
18. She is developing more spider veins all over her hands, arms and chest.
19. Her mental clarity has improved but itching is still a problem.
20. Basically, the doctors don't know exactly what is going on. There are still a lot of fingers being pointed at each other but it all comes down to liver being the original cause.
21. So her liver is causing problems but these aren't bad enough to sugggest transplant at this time. She "can live with these" and she doesn't qualify for any exemption points if they were to list her. So her MELD (the rating scoring for transplant) is so low she would wait for years on the list.
22. At this point we are not being referred for transplant. Will see the liver doctor next week and maybe we will hear something else but I really doubt it.
23. We are no longer on the bumpy road. We are off-roading now!

Peg