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!"

Friday, January 29, 2016

Angela's Liver

You liver people will understand this. I will try my best to explain for those who are trying to understand.

First, here is what the liver vascular anatomy is supposed to look like.

The IVC (thich blue vessel) runs kind of behind the liver, bringing blood back to the heart to be oxygenated. The portal vein (purple) runs directly in front of it, through the liver, bringing blood to the liver to be filtered of toxins.

Here's the picture the doctor drew on the board in Angela's room. This is a side view. Angela's portal vein, instead of running parallel with the IVC, it stuck to it and is open. The dotted lines show where the portal vein is supposed to go. Keep in mind, this is all inside the liver. You look at the picture and think, "So just cut it and sew the opening closed." Only it doesn't work that way. That junction is huge, and more than 1/2 of Angela's blood flow dumps into her IVC instead of going to her liver for cleaning.

On the left of the drawing of Portal Vein and IVC is a crude drawing of the liver. You see that bulbous looking thing. That is where the Portal Vein is blocked. The blood flow stops. There have been a lot of little tiny vessels the body created to get blood to the liver. If they just closed off that big Portal/IVC connection, those tiny vessels would explode because they can't handle the blood flow.

But that picture, and the drawing, make it all look so easy, when in reality the NORMAL liver vessels look like this:

Angela's liver has tons more tiny little vessels due to revascularization. The most major risk is blood clots. The IVC goes directly to the heart and *anything* they do around this creates an unbelievable risk for a blood clot, that would go straight to Angela's heart.  Lucky for Angela, because the blood isn't getting to the liver, her liver isn't able to produce enough clotting factor. It is that deficiency that has kept her alive for 19 years before we discovered this problem.

The doctors have proposed one option that has never been tried before. They want to bring this to the other leading liver specialists in the country for their opinion.

Our only other option is a liver transplant.

Because a donated liver has a maximum life of somewhere around 10 years, they want to buy as much time as possible with her current liver. The two drugs she's on to keep her ammonia levels down are very hard on the gut and Angela is already having trouble with them.  They are a band aid that will quickly lose their effectiveness.

The haters have already started commenting on the blog. I'm sorry if you hate us. I really don't care.


Donna Cooper said...

This is all so complicated and hard to wrap your mind around. I cannot imagine what you are going through. Thank you for the explanation. And the info that a donated liver only lasts for 10 years. I did not know that. Praying for you all. In my thoughts and on my heart day and night. And haters? Seriously, are there really people who are doing that to you? I cannot imagine such a heartless person (people) who would dare to say anything negative. May God open their eyes to love.

Heather said...

Thank you for sharing Angela's story with us! Praying that the specialists can come up with a plan (quickly!) that will help Angela's body feel better!

Carissa said...

Goodness... How amazing our body truly is! But this is difficult and scary. I am praying for you.

P.s. Why would any decent human day mean things about this family? Especially during such a difficult time. If you don't have anything nice to say, move along!

Janel said...

Do you have a good friend that could moderate the comments for you? You don't need that kind of crap.

Hang in there. Are and Angela are both tough broads.

Political Jules said...

I am a new friend but I also have a daughter with Down syndrome and an additional serious diagnosis. It is not the same, but I can relate to some of what you are going through. My daughter has Cystic Fibrosis as well as Ds. She is moderately healthy, but her lungs go downhill quickly. And Lung transplant is the only scary option if things get really bad. So I understand some of what you are dealing with. Some kids with Cf also get liver transplants, and I have a friend who did in case you just want to have a resource in your back pocket to save for later.

You know what is best for your daughter. No one else but you. And you are very knowledgable like myself. I was a nurse before my daughter was born, and sometimes it is a blessing and a curse. But you were picked for this job for a reason. You were born to care for her and God made the perfect match of mother and daughter to give her the best caregiver in the world. I have complete faith in your ability to guide her care where it needs to be. Never doubt that. No matter how many haters or new doctors or unprofessional people walk into your room to tell you otherwise. Stay strong. I know you have hundreds of friends out there, but I will offer a shoulder or just someone who has been in similar situations if you need to reach out, please do. If not that is ok too.

Peace, hugs and love. Julie & Phoebe too.

e wilson said...

Fuck the haters. Sorry, no other way to say it.

Sarah said...

Praying that the solution the doctors come up with leads to much better health for Angela.

Maybe one of the other orgs listed here would be able to help you out?

Jillian said...

I think I've only commented once since you brought axel home, but I've read everything. I don't have much, but is there a place where I could donate towards your trip? I know that a transplant would be last resort, but I'm wondering if there is a way to see if I could be a possible match for her? Sending so much love and light your way.

Ingrid said...

I am so sorry for you having to deal with the hateful comments. Those people should be ashamed of themselves! I am praying very hard for you, Angela, and the rest of your family! Many hugs!

Tamar SB said...

I've followed on the sidelines for years. Sending white light and prayers!!!

eliz said...

Haters??? Dear Lord help us. This is one sick world.
(((((HUGS))))))))) and prayers

Imogen said...

OMG haters? What the hell! I didn't read what he/she/they said but I hope that karma bites them hard!

Praying for Angela and you all. Praying like crazy, and sending love too xx

HS said...

I think there's only one hater and she's a crazy person. I've followed your blog for years and very much admire you and your husband for the wonderful care you both give your children.