Cedars has said that they will NOT continue with her liver transplant evaluation until the liver biopsy is done, PERIOD. There is no negotiation on this point. So while we were there for Fiona's appointment, the doctors talked on the phone. Her liver doctor is still not for the biopsy. It has too many risks with her platelet count. The Cedar team doesn't care. They want it. So the discussion was how to do this the safest way. The regular, needle in your side, is OUT. There is no way to keep her from bleeding. So they will have to go in through the jugular and down to the liver. Usually, as in most all of her procedures, she gets a platelet infusion first. But I guess there is a new drug study going on at Cedars for a drug that will raise the platelet count. Um...interesting....So Fiona's doctor and Cedar's doctor thought that might be an option to make this biopsy safer. Well Fiona got all the protocol last night. Pages and pages and pages. After looking it over briefly, we all have some concerns. This is still in double blind stage and there is only a 50-50% chance she would get the drug. It would mean going into Cedars MANY times and in the end she could very well end up needing the transfusion anyways. We will need to talk to her liver doctor but, as of right now, I don't think she is going to participate in this study. I simply don't have the time off from work to go into LA on a weekly basis for the next couple of months. PLUS, the side effects, though for most people are mild, can be severe. We are talking kidney failure, heart attack, stroke and cataracts. UM, at this point are we willing to take a chance? Let me think................NO.
When her liver doctor called Cedars and talked to the liver team, the team was not willing to say if they were going to ask for the heptopulmonary syndrome exemption points. They are staying very neutral until they see the biopsy results. They did say that the many thousand of dollars MRI they did showed nothing more than the MRIs we sent to them.....hahahaha told you so!
So we sit and wait. I have a feeling we are going no where really fast. I was interested in this drug that raises the platelets because this has been a discussion for awhile. One of the reasons to do the transplant now is that her lungs are bleeding and with a transplant the platelets would be higher so the lungs should stop bleeding. If we could raise the platelets without transplanting then the doctors would be able to get a better idea if the transplant would help the lung situation or not OR even if she needs a transplant. Remember her liver numbers are almost normal except her platelets. There is such a mystery as to what is going on with her liver/lungs that maybe this would give us a piece of information. However, at this time the risks of that drug and the time required are not good. AND the discussion of doing a left heart cath came up again. The shunting between her lungs and heart is still a mystery in that it is too slow for a hole in the heart but too fast for pulmonary AVMS. So there is still some doubt if there is an intracardial AVM somewhere. But her platelets are way too low to do that procedure unless it is an emergency.
Peg
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