Liver for LuLu: 8:39 PM

Thursday, January 14, 2010

8:39 PM

We are still waiting due to a series of complex events that surround transplant. Details I wont really be able to go into-mostly because we don't know due to HIPPA. But, we finally have a somewhat definitive time for surgery to start.................4 AM. So, grandparents have fled to get some sleep before returning in the early hours. One last night for James and I with LuLu before our lives change dramatically. We are prepared for her first week to be spent in the PICU and the following 2-3 weeks in the Immuno Comprimised Unit due to her complete and total lack of immune system because of the high immuno suppressents she'll be on to avoid rejection of her new liver.

14 comments:

Dayton and Candice said...: Wow...I can't imagine the day you guys have had...I pray you will all ( James & Liz especially) be able to relax enough to get some well needed sleep tonight, your adrenaline has been on high alert all day, I will continue to send all of the good ju-ju I have your way and prayers too! love you guys :); January 14, 2010 at 8:25 PM
Douglas Lai said...: My prayers continue... I can't wait to see how your lives change dramatically for the better.
Erica; January 14, 2010 at 8:26 PM
mIcHeLLe said...: I am a neighbor/ friend of your sis cydnee and have been following LuLu's journey. I am also a nurse at pcmc on the third floor. I am praying for your family and the donors family... Such a bittersweet moment for you guys. I know you are in great hands w/ dr book. The ics unit is great and I know they will take good care of you guys. Get sleep while u can. Sounds like a busy but exciting day to move onto this next journey. All my love, Michelle Peterson; January 14, 2010 at 8:27 PM
The Davidson's said...: You really couldnt be in better hands and Im not just saying that because I LOVE PCMC!!! Everyone there truly was chosen to be there so what else can I say. God loves you and your little girl and "every little thing, is gonna be alright" :) see you soon. Lots of love. And try to rest; January 14, 2010 at 8:33 PM
Jamie said...: Just happened to check your blog last night and then checked again today....and miracles are coming your way. Totally praying for you little darling.; January 14, 2010 at 8:44 PM
Amanda said...: Oh Lizzie, I am sooo happy for you and your family! The time has come for little LuLu!! I can't imagine how your day has been. It brings tears to my eyes everytime I read about what you guys have gone through and what your going through, just think (it's all gonna be alright) here's to a great new beginning for 2010! Can't wait to hear how it all went! Hang in there and get some SLEEP!! Our prayers are with you guys!; January 14, 2010 at 8:46 PM
Sarah said...: 4am... alright, 4 it is! although i'd love to read updates all through the rest of 'my' day... i hope that you use the time to snuggle with little Lu, and get some sleep.
i know that the transplant is only the beginning of her journey to recovery, but i'm so happy that she (and you and james) are soon to begin on this new path-- one that will lead to a vibrant and healthy LuLu. :)
I will be thinking of you all day!
{{{hugs}}}; January 14, 2010 at 8:46 PM
Julia said...: Already wishing I was still there. Love you, my sweet sissy. Sleep well.; January 14, 2010 at 9:04 PM
Christi said...: Dear Liz and James,
You have been in our thoughts and prayers all day. I got home from work and got updated on the latest info about London from the wonderful blog site. We will be hoping you both can get a little rest for the big early morning start of your next great challenge, but a new and healthy life for your beautiful daughter. With all our love to all of you and our continuing prayers,
Randy and Christi
and family; January 14, 2010 at 9:16 PM
Vic, Linds, and the girls... said...: We are praying for your sweet little london.
xo; January 14, 2010 at 9:17 PM
BWeaver said...: Will be praying for your sweet girl and that the family of the donor will find peace in knowing their little one helped so many i'm sure that there will be no sleeping there tonight so enjoy cuddling and kissing on little LuLu tomorrow will be a long anxiety filled day of miracles. Love from the Weaver family; January 14, 2010 at 9:18 PM
About us... said...: I have kept looking at your blog several times today hoping for updates! :) You are so amazing, Liz! Thank you so much for allowing all of us to have a glimpse into your world!! I am eagerly awaiting more updates as beautiful Lulu gets her new LIVER!I am so excited for her and your family! Hopefully you can get some zzzzzz's tonight! How exciting! Love ya!
--Amanda(Scott)Skowronek; January 14, 2010 at 9:23 PM
Carli said...: thinking about you guys and praying tonight! :); January 14, 2010 at 10:37 PM
allieb said...: enjoy your night with your precious lu before the big day...sending lots of loves and happy thoughts your way : ) (i'm taking poetry lessons from tyler ; P) <3 you lion! xoxo; January 14, 2010 at 11:04 PM

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Welcome to liverforlulu.blogspot

Meet beautiful, brave, tough-as-nails London (aka "LuLu"). She's been fighting Alpha 1 Anitrypsin Deficiency since birth. It's a genetic disease that causes liver disease and sometimes lung disease later in life. She received a new, clean, healthy, pink, perfect, beautiful liver January 15th 2010 thanks to the generocity of a family willing to donate their childs organs to give life to others. She is LuLu's Angel. We thank every person who takes the time to look at LuLu's blog. I am so happy that many now know what Alpha-1 is. I am grateful that some may change their veiws on organ donation because of London's life that she's been living with such dignity, strength and grace. Feel free to email me, elizabethbarnum(at)hotmail(dot)com with questions or comments.

What is Alpha-1?

Alpha-1 Antitrypsin Deficiency (Alpha-1) is a condition that is passed from parents to their children through their genes.This condition may result in serious lung and/or liver disease at various ages in life. For each trait a person inherits, there are usually two genes and one gene comes from each parent. People with Alpha-1 have received two defective alpha-1 antitrypsin genes. One defective gene came from their mother and one from their father.There are many types of defective alpha-1 antitrypsin genes. The most common abnormal genes are called S and Z. Normal genes are called M. A person who does not have Alpha-1 will have two M genes (MM). People identified with Alpha-1 most commonly have two Z genes (ZZ). Current evidence suggests that there are about 100,000 people with Alpha-1 (ZZ) in the United States. Another deficient gene combination is SZ, although people with this gene combination are less likely to get lung or liver problems than those with two Z genes. (lulu is ZZ)

Alpha-1 occurs when there is a lack of a protein in the blood called alpha-1 antitrypsin or AAT that is produced by the liver. The main function of AAT is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke. The low level of AAT in the blood occurs because the AAT is abnormal and cannot be released from the liver at the normal rate. This leads to a build up of abnormal AAT in the liver that can cause liver disease and a decrease of AAT in the blood that can lead to lung disease.

The most common signs and symptoms of disease caused by Alpha-1 are: Shortness of breath, wheezing, chronic cough and sputum (phlegm) production (chronic bronchitis) reacurring chest colds, eyes and skin turning yellow (jaundice), swelling of the abdomen (ascites) or legs, vomiting blood (from enlarged veins in the esophagus or stomach) decreased exercise tolerance, non-responsive asthma or year-round allergies, unexplained liver problems or elevated liver enzymes and bronchiectasis.

Alpha-1 has been identified in virtually all populations and ethnic groups. It is estimated that about 1 in every 2,500 Americans have Alpha-1. Individuals with Alpha-1 may remain healthy throughout their lives. Early diagnosis and avoidance of risk factors such as cigarette smoking, can help prevent Alpha-1 from causing disease. An estimated 20 million people have one normal and one defective AAT gene. People with one normal gene and one defective gene (for example MZ) are called “carriers”. (james and liz) Carriers may pass the defective gene on to their children. Alpha-1 can lead to lung destruction and is often misdiagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD). Alpha-1 can’t be diagnosed by symptoms or by a medical examination; you need to get a blood test to know for sure. Alpha-1 is the most common known risk factor for emphysema and COPD. About 3% of all people diagnosed with COPD may have undetected Alpha-1. Alpha-1 can lead to liver disease. The most serious liver diseases are cirrhosis and liver cancer. The World Health Organization (WHO), American Thoracic Society (ATS), and the European Respiratory Society (ERS) recommend that all individuals with COPD be tested for Alpha-1.

What does YOUR liver do for you?

How important is the liver?
The liver is a vital organ. Without it we would not be able to live. Apart from the brain, it is the most complex organ in the body. It has a wide range of functions and acts very much like a factory. One of its most amazing features is its regenerative power. Some 9/10ths of the liver can be cut away and provided the remaining 1/10th is healthy, the liver will grow back to its original size.

The liver is a processor
The food that we eat passes into the stomach via the esophagus (gullet). The food is broken down by the action of the stomach and the small intestine. The nutrients from the food are then absorbed into the blood via the vessels in the walls of the intestines. These drain to veins which lead into the portal vein which carries the blood into the liver. The nutrients are processed in many different ways in the liver. This processing of the food is known as metabolism. The final products made are used by the body for energy and growth.

The liver is a manufacturer
The liver produces a number of different substances which are vital in order for healthy growth and development. For example: 1. The liver cells produce substances which assist with the clotting of the blood, e.g.Prothrombin. 2. The liver cells make proteins which are carried in the blood. These have many functions. Albumin, for example, helps to control the distribution of fluid in all parts of the body and transports many substances to and from the liver and kidneys to other parts of the body.

The liver is a storage depot
The liver stores energy in the form of glycogen (sugar). It also stores a number of other substances, e.g. copper, iron and vitamins.

The liver is a controller
The liver plays an important part in controlling: 1. The correct level of many hormones within the body. 2. The blood sugar (glucose) levels. The liver stores glucose in the form of glycogen when there is too much glucose in the blood and releases it when the blood sugar level falls. 3. The amount of fluid the body retains and its distribution throughout the body. 4. The concentration of cholesterol which it converts into bile salts. 5. The action of many drugs

The liver is a filter
The liver removes many unwanted substances from the body. It plays an important role in controlling the harmful effects of some drugs and products of metabolism by changing them chemically before excreting them into the bile. Bilirubin (unconjugated or indirect) is produced when old red blood cells break down. The average life of a healthy red blood cell is 120 days. This bilirubin is carried in the blood stream, attached to albuimin, to the liver where it is altered into a different form (conjugated or direct bilirubin) which is then: 1. Excreted in the bile. 2. Transferred into the bile which passes via the bile ducts into the intestine and appears as brown pigment in the stool. Bile is continuously produced by the liver cells mainly by the action of bile salts. It collects in and passes out through the network of bile ducts into the intestine. Bile salts play an important role in the digestion of fats.

The liver is a defender
The liver plays an important role in fighting many types of infection. In particular, protects the body against infection which arises in the gut. With so many different and complex functions, it is not surprising that more than 100 types of liver diseases have been identified in babies and children.

Liver for LuLu

Thursday, January 14, 2010

8:39 PM

14 comments:

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