In My Shoes: Are We In The Right Line?

Thursday, January 29, 2009

Are We In The Right Line?

MyHotComments

We are at the amusement park of life and all the rides look fun but there is one that is the best ever. Are we in the right line?

It is amazing how all the news over the last month or so is really adding up and making us happy, scared, apprehensive, nervous, excited .....this is just so surreal. Fiona and I truly feeling like we are afraid to hope but glad there is hope there. This whole journey has been so up and down. We get our hopes up and then it is all torn away from us. Now it seems like hope is truly possible. Yet we talk to each other and remind each other to take it one day at a time. There are no guarantees. Fiona, however, is really struggling with emotions. She is starting to more seriously think about what the surgery will entail, what will happen, how it will happen. Never has she let herself "think" about this in detail. It is always better to just not think about something you can't do. (She has learned denial from the expert---ME) This is so much harder when you are old enough to know what is going on. Wish they would have transplanted her as a baby!

Fiona,
There is so many people here for you. God, your guardian angel and your doctors have been working overtime to help you get to this point. None of us (and there are a LOT of people who care about you) are going to let you do this alone. We are here and you will have a really hard time getting rid of us. Breath, smile and let's do this one day at a time. Miracles are coming your way...are you ready for the ride? You might even get to touch the end of a rainbow. Get ready for the wish of your life! :)

Love you,
MOM

P.S. NO, Scarlet can not come with you to the hospital when you get your transplant. She will just have to learn to cope without her Mommy for a little while.

MyHotComments

No comments:

Post a Comment

Biliary Atresia

Biliary atresia is a condition in which the ducts that carry bile from the liver to the gallbladder and small intestine are not normal. These ducts can be injured, blocked, or missing. When the ducts that carry bile out of the liver are closed, bile backs up and damages liver tissue. In time the liver can develop scarring or cirrhosis. The gallbladder may also be abnormal or missing. The cause of Biliary Atresia is unknown. It occurs in one infant in every 15,000 live births. It is a serious disease which requires immediate surgical and medical treatment.

Arteriovenous Malformations AVMS

I have been diagnosed with AVMS in my lungs do to my liver disease. These have caused me to have 2 lung bleeds which were very scary. I still have more AVMS and they are causing me breathing problems. Below is an explanation of what the AVMs are and a picture of what is happening in my lungs.

Arteries and veins are part of the human cardiovascular system. Normally, the arteries in the vascular system carry oxygen-rich blood at a relatively high pressure. Structurally, arteries divide and sub-divide repeatedly, eventually forming a sponge-like capillary bed. Blood moves through the capillaries, giving up oxygen and taking up waste products from the surrounding cells. Capillaries successively join together, one upon the other, to form the veins that carry blood away at a relatively low pressure. The heart acts to pump blood from the low pressure veins to the high pressure arteries.
If the capillary bed is thought of as a sponge, then an AVM is the rough equivalent of jamming a tangle of flexible soda straws from artery to vein through that sponge. On arteriogram films AVM formation often resemble a tangle of spaghetti noodles. This tangle of blood vessels forms a relatively direct connection between high pressure arteries and low pressure veins.
The result is a collection of blood vessels with abnormal connections and no capillaries. This collection, often called a nidus, can be extremely fragile and prone to bleeding.