The Debate Goes On

Yesterday Fiona talked to the transplant coordinator at Cedars. The word is that they are now saying the liver biopsy is absolutely necessary for them to list her. They have accepted her for liver transplant but they won't actually list her until that biopsy is received. Then the question is, will they be asking for heptopulmonary syndrome exemption points? So her regular doctors and the Cedars doctors have to talk and find some middle ground. She called her regular liver doctor and he said he thinks the biopsy is too risky but he would speak with the Cedar doctor and they would decide. He said he might have to change his mind if the biopsy was the only way to get help for her. He basically wants to know if they will be asking for exemption points for the HPS or not. If they do, he will support Fiona through at liver biopsy. This would mean hospitalization and LOTS of units of platelets. If they aren't going for the HPS exemption, then he will not order or support a liver biopsy.

He was concerned about her still coughing up blood. It is so unusual to cough blood with HPS that no one knows what to do. The debate goes on: is this liver related or not? Is this a different problem altogether and would a liver transplant help the lungs? Everyone is so puzzled. There are no clear cut answers.

I find it interesting the debates that we have gone through with Fiona. This isn't the first time we have heard, "This is so unusual. This can't be ----." She has NEVER fit the mold of anything. I'm tired of the mold. I'm tired of the medical books. You know what, some people are not textbook cases. The doctors know she isn't textbook. Why do they keep trying to look at her that way? All we ask is someone to help her. I have said it before and I'll say it again, we just want her to feel better and the lungs to stop bleeding. I really don't want to watch her drown in her own blood. That is not an acceptable option! If a transplant is one of the answers, then let's go for it. If it isn't, get us to someone who knows what to do. I'm not listening to taking her lung out until someone gives me better reasons why it isn't liver related. If it isn't liver related then we will talk about lung removal. It just hasn't been clear enough to us to make that decision. Heck the doctors don't even agree. Usually the answer we get is "Wow, this is really unusual. It is so interesting, we don't know what it is." OK that isn't a basis to make a good informed decision. But to leave her in limbo, totally disabled while no one does anything isn't right. They are playing Russian Roulette with her life and I'm not happy about that. I don't like having to make split second decisions on whether this is the right amount of blood to go to ER or do we just sit and wait to see if it gets better or worse.

I'm not giving up even though it seems so discouraging. We aren't discouraged. I know we are getting closer and closer to answers. We are all trying to sit back and let the professionals work. It is just hard when you see handfuls of blood. I think the main problem is she has liver disease. Sometimes liver disease destroys the lungs but it doesn't present the way hers has. Is that what she has or does she, unfortunately, have a separate lung problem with the liver disease being totally unrelated? That is THE DEBATE and no one has a clear answer to that question. We are just praying that together the pulmonologists and the liver doctors can figure out this problem. I guarantee you when they figure this out, it will pave the path for future patients. I don't believe she is the only one having this problem. She is just one that they are focusing on.
Peggy