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, February 18, 2016

Bits and Pieces, gained and lost.

I hate when the information comes in bits and pieces. Just give it to me all at once so we can figure out what to do, make decisions and all that stuff!!

Today Angela had a Hepatic Venogram (also called and IVC/Portal Venogram) The purpose of this procedure was to take a closer look at the portal shunt inside her liver as well as measure the pressure inside the portal vein. We have known its high, but how high? The procedure was done under general anesthesia. They put a catheter through both her neck and groin and ran the catheter into her liver and injected die so they could get another picture of the shunt. The doctor showed me the images and the pretty much mean nothing to me. LOL I can totally understand ultrasounds, but these make no sense to me, except where she injected the dye into the little veins. And they are little! Less than half the size they should be and unable to support even 1/4 of the blood flow they need to be carrying. 

When the portal vein pressure was measured, its is at 14. The radiologist explained to me this puts Angela at significant risk of vessel rupture. So much information. I do better when I have information in print so I came home and looked it up. 

The normal HVPG value is between 1-5 mmHg. Pressure higher than this defines the presence of portal hypertension, regardless of clinical evidence. HPVC > or = 10 mmHg (termed clinically significant portal hypertension) is predictive of the development of complications of cirrhosis, including death. HVPG above 12 mmHg is the threshold pressure for variceal rupture. 

But that's as much as we know. Now we have to wait to talk with Angela's medical team and hear what they have to say about this. What do we do with it? Can they fix it? Is it too big to be fixed? (the radiologist did not sound very positive about this based on the size of the communicating vessels) When we met with the liver specialist last week she listed the options as surgical fix, manage medically (with  the medications and protein restriction she is currently on) or transplant. We really do NOT want to manage this medically. Angela has lost huge areas of independence from her life. The drugs have caused her to have *major* GI problems that are very unpleasant to deal with, both for her and a caregiver, and she cannot manage it alone. She can no longer just go hang out with friends. She can't spend the night at friends' houses. She can't leave her school program campus (which I don't even remember the last time she was actually there) without a nurse with her. She really cannot attend anything or go anywhere, without a caregiver with her. She can no longer swim thanks to last week's increase of the drugs. She went from being able to spend time home alone to never being alone. From being dropped off at a social event to having a caregiver within eyesight at all times. Although she is taking all these changes in stride, we can see her sadness. She sees pictures of friends attending parties that she was not invited to that she normally would have attended. She misses being away from mom and dad and hanging out with her friends. She misses eating food. She misses school. She misses everything she has lost, and we miss it for her too. We don't want to "medically manage" this problem. We want it fixed. We want for her to have her life back. 


Imogen said...

It breaks my heart that you see the sadness in her eyes. This is all a lot to take in; those numbers look frightening typed out. Praying for the best possible solution for Angela's medical problems. You all have been through so much. You all deserve a break. If I could give Angela my liver, I would do so in a heartbeat. It is evident that the Spring women are made of tough stuff, but man, you must all be so very tired right now :( C'mon God, please send some healing for this beautiful family.

Sending you all so much love xx

Heather said...

What a tough situation, especially for a teenager! Praying that her health care team can come up with something so she can regain her independence!

Cindy said...

Praying that something can be done to get her healthy again. Hugs and prayers.

Twilson9608 said...