Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, March 03, 2016

Meeting of the Minds: Abernethy Type II Malformation

Today we met with the surgeons at the University of Minnesota to discuss our three options for treatments of Angela's liver malformation, Abernethy Type II Malformation.

As I mentioned in a previous post, we have three options:

1) Medical management: This is what we're currently doing. Everyone on the liver surgical team agrees that medical management is not going well for Angela. The drugs cause side effects that are not just unpleasant, but life-altering. She has lost all independence, is limited to how much time she can spend away from home, and is now embarrassed to have friends over. As for me, I do what I need to do, even if that means donning a hazmat suit for the cleanup that must happen multiple times per day. Ok, I don't *really* need a hazmat suit, but I feel like I do. And, it doesn't matter how careful we are with planning and timing, the moment we're due to walk out the door, or the bus arrives at our driveway, or we arrive at a desination, we have a major problem that requires not just a trip to the restroom, but a full shower for Angela. You can read about the medication and its effects here.

2) Liver transplant: Angela qualifies for a liver transplant, and we could put her on the list now, however she would never get a liver. She isn't sick enough. Her liver cells themselves work fine, they just don't get enough blood to do the work that is needed. There are a lot of people on the list who are far more sick than her, and in end-stage liver failure. And even if we put her on the list, that doesn't solve the problem of #1.

3) Lastly, the surgical fix: This is where we're at. The team has proposed a multi-stage process to attempt to close the defect. It is complicated, it is risky, and it has never been tried before in her particular variant. The good news is, they think she is a really good candidate to give it a try. If it fails, she would then go on the transplant list and be more likely to get an organ because her options would have decreased. Because Angela has a history of wound healing problems they'll be talking to her previous surgeons to come up with a pro-active plan to manage this. However, its very possible those problems were caused by the high ammonia levels we didn't know she had. The biggest risks for Angela are blood clots and stroke. (and it is suspected her previous strokes were caused by this disorder, as there is an old, calcified clot inside her portal vein, and vascular malformations in the liver are often accompanied by vascular malformations in the heart, spleen, and braid.) The surgeon expects 3-4 surgeries to get through the repair process, 10-12 days in the hospital with each phase, and somewhere around two months between each phase She will be on anticoagulants shots for the entire process (the first surgery through to several months after the last) in hopes of preventing her from developing clots.

I am waiting for a surgical scheduler to call me back, but we are looking at scheduling surgery for the beginning of April.

So thats it. That's where we're at with this. Deana and I are scared to death about the potential for problems with this surgery but really, we don't have any other options for Angela to have any quality of life if we don't at least try.

1 comment:

Heather said...

Prayers for Angela and the rest of the family during this scary time!