My Mercedes Scar

Surgery Was a Success!!

2008-04-24T23:07:00.002-05:00

Surgery went well for both Charlie and I. We were both discharged yesterday afternoon and have been resting at home. We both feel pretty good. The pain hasn't been too bad; now anyways... that week in the hospital sucked, to put it bluntly.

I don't react well to anesthesia and made sure to let the docs/nurses know that ahead of time. The first two days after surgery were pretty much a haze. I didn't get sick and evidently know how to keep pushing that PCA button even while sleeping (that's the device that gives you a shot of morphine every 15 minutes... greatest invention ever, if you ask me). About day three it turned south. I started getting very nauseous and let me tell you there's no pain like throwing up when your stomach muscles have been cut and ribs pulled back.... actually, almost as bad as throwing up with 4 broken ribs. Not fun. After two days of that, we figured out how to get the pain and nausea back under control and things have been good since. Yea!!! I'm mostly just taking ibuprofen now... I have Vicodin but really don't like how that makes me feel.

Charlie is doing awesome! He started to get his color back even before he left the hospital and is getting his appetite back, which is really good. I talked to him tonight and he almost sounds like his old self, too. His spirits are really good and he's looking forward to summer, as am I!

The Night Before Surgery...

2008-04-16T01:24:00.000-05:00

Maybe I should have titled this "The Morning Before Surgery". I should be sleeping, as I need to get up in 3 hours, but my mind is not exactly cooperating and I'm running on pure adrenaline I think.

There are so many thoughts and emotions that have gone through my mind in the past few weeks and even more so today. I spent about 7 hours at the transplant clinic today going through more tests (nothing new, just making sure that I'm still healthy before surgery), pre-op teaching (explain everything that's going to happen before & after surgery), going through paperwork, etc. It's almost surreal that this surgery is going to finally happen. I have moments where it feels like I'm reading a book or watching a movie; it doesn't seem real and other moments where I'm completely overwhelmed with emotions. Mostly good thoughts, but I'd be lying if I said I wasn't nervous and a little scared. I feel so blessed to have the people I have in my life, though. I've gotten so many calls, emails, text messages over the past two days that have been so positive and supportive. I can't even begin to describe how much my family and friends mean to me and the love and support I have gotten over the past few months....wow, all I can say is I love you more than you can imagine!!

It's so inspiring to be able to do something like this for someone else and that we live in an age that this is even possible. I'm still in awe over the fact that a surgery like this can be performed and the skills that these doctors have.

I'm sure I'm going to be a complete teary mess before going into surgery. I'm not sure why exactly, but this surgery has really made me stop and "take inventory" on my life. I've always been very independent and very sure about what I want. That hasn't changed, but this has caused me to re-evaluate some of those things that I thought I wanted. I'm still very much a "live in the moment" person and something like this really makes you look at how fragile life can be. The stupid stuff in our day to day lives is just that - stuff. It's not what matters. Having family and friends that are there for you to help you through a bad day, share in your good days and just be there - that's so important and I realize how many really, great, great friends I have and the strength that my family possesses. It's amazing!

OK, time to try and take a little nap.

Hospital Information

2008-04-14T12:25:00.003-05:00

I've been getting a lot of hospital questions so here's the latest:

Surgery is at University of Minnesota Medical Center, Fairview. It's on the U of M campus, Eastbank. The address is 500 Harvard St SE, Minneapolis.

Parking is on the corner of Harvard and Delaware and you can take the underground tunnel to the hospital. The hospital also has valet parking, which is the same rate as using the parking ramp.

Surgery is at 7:30 am and I'm the first person scheduled that day. Surgery is 6-8 hours, I'll be in recovery for a few hours after and then moved to ICU. I should be moved to a regular room on Thursday. Visitors are welcome in ICU, but they will limit the number of visitors and no flowers/balloons in ICU.

I'm working on my phone/email/text list and my brother will be letting my friend Joanie know what's going on. She will then disperse that information. Once I've been moved to a regular room and know the number, my brother will send that out.

Here's the link for a detailed street map: http://www1.umn.edu/twincities/maps/UHosp/UHosp-map.html

Here's a link for driving directions and detailed parking info:

http://www.fairview-university.fairview.org/Location_and_Parking/c_099483.asp

TransplantCafe.com and Other Links

2008-04-09T19:01:00.000-05:00

I added some new links under the "Links to Check Out" section. I received an invitation to TransplantCafe.com today which is a networking site for donors, recipients or those touched by transplantation.... kind of like MySpace, but specific for organ, marrow and tissue transplantation. What a great way to get in touch with other people going through a similar experience! Kind of cool!! It just launched this past February.

I found some interesting statistics that are really up to date:
~there are 98,793 people on the national waiting list for organ transplants (as of 5:46PM today... wow, that's a lot of people)
~there were 28,354 organs transplanted in 2008
~there have been 2,196 organ transplants performed this year (as of 4/4/008)

Also, April is National Donate Life month. Check out the Organ Donor link for more information about registering to be a donor. You can sign up online via Donate Life Minnesota, an organ tissue and donor registry or indicate your wish on your driver's license; both are legal authorization for donation. It looks like most other states also have an online registry.

Lastly, I stumbled upon a site (actually not sure how I got to it) that is a national database of statistics related to solid organ transplantation. They have transplant program specific data meaning you can check out the statistics for each transplant center in the US. The registry contains percentages for each center compared to the national average and is broken down to specific organ. That's the Scientific Registry of Transplant Recipients link.

Who Gets What - A Diagram of the Liver

2008-04-06T18:40:00.003-05:00

Here's a diagram of the liver and who gets what during a live donor liver transplant. The left lobe stays with me and the right lobe goes to Charlie.

In each of us, the opposite lobe does not regenerate, i.e.; I won't regenerate a right lobe, but the left lobe will regenerate to fill the space where the right lobe was.

*you can click on the diagram and it should open a new window with a larger view of the image

http://www.livertransplant.org/livedonorlivertransplant.html

What Causes Cirrhosis of the Liver

2008-04-06T18:08:00.007-05:00

Cirrhosis can be caused by many things, some known and some unknown. Anything that damages the liver can cause cirrhosis, but Hepatitis C, fatty liver and alcohol abuse are the most common causes in the United States. According to the American Cancer Society, Cirrhosis is the seventh leading cause of death by disease.

What Causes Cirrhosis
Cirrhosis is caused by long-term liver diseases that damage liver tissue. It can take many years for liver damage to lead to cirrhosis and then it can take many years for cirrhosis to lead to liver failure. This is because the liver can function adequately with some damage and it can even repair itself by replacing injured cells. But over time, if the underlying disease is not controlled, cirrhosis begins.

Alcoholism and cirrhosis
The most common cause of cirrhosis in the United States is chronic alcoholism. About 40 percent of the 26,000 people who die from cirrhosis each year have a history of alcohol abuse.
The liver breaks down alcohol into toxic chemicals, some of which trigger the inflammation that leads to cirrhosis. Cirrhosis caused by alcoholism usually occurs after 10 to 15 years of heavy drinking. The amount of alcohol consumption required to cause cirrhosis varies from person to person and not everyone who drinks excessively gets cirrhosis. However, nearly everyone who drinks excessively suffers some liver damage and between 10 and 20 percent of heavy drinkers develop cirrhosis.

Other causes of cirrhosis
Chronic viral hepatitis. Hepatitis C is the second leading cause of cirrhosis. About one in four people with chronic Hepatitis C develop cirrhosis. Long-term infection with the Hepatitis B and D viruses also can cause cirrhosis, although Hepatitis D is not common in the United States. It can take 20 years or longer for patients with chronic viral hepatitis to develop cirrhosis. However, cirrhosis can develop much faster in certain people who have chronic viral hepatitis and drink excessively.

Nonalcoholic steatohepatitis (NASH). Sometimes excess fat in the liver leads to inflammation, a condition called NASH. Eventually the inflammation may lead to cirrhosis. NASH is often linked to diabetes, obesity, coronary artery disease and protein malnutrition.

Bile duct disease. Bile is a digestive liquid made in the liver. It travels through the bile ducts to the gall bladder and the small intestine, where it helps digest fats. If the bile ducts become damaged or blocked from disease, bile backs up in the liver. This leads to inflammation and, eventually, cirrhosis. Two common forms of bile duct disease are primary sclerosing cholangitis, often linked to colitis, and primary biliary cirrhosis, which mainly affects women.

Inherited diseases and cirrhosis. Some diseases that are either inherited or present at birth (congenital) can lead to cirrhosis. These include:

Hemochromatosis, the abnormal accumulation of iron in the liver
Wilson disease, the abnormal accumulation of copper in the liver
Alpha1-antitrypsin deficiency, the absence of a specific enzyme in the liver
Glycogen storage diseases, which prevent the body from properly using sugars
Autoimmune Hepatitis, an abnormality of the body’s immune system that leads to inflammation of the liver

Do People Who Drink A Lot of Alcohol Always Get Cirrhosis?
Most people who drink large amounts of alcohol harm their livers in some way; but not all of these people get cirrhosis. Women who are heavy drinkers are at higher risk than men. People who have Hepatitis B or Hepatitis C are more likely to suffer liver damage from alcohol.

How Can I Prevent Cirrhosis?

There are several ways to reduce your risk of developing cirrhosis:

Don't abuse alcohol. If you do drink alcohol, limit how much you drink and how often. Remember it's not only the heavy drinker who gets cirrhosis. If you drink more than 2 drinks a day, you are increasing your risk. A drink is a 5 oz glass of wine or a 12-oz can of beer or a 1 1/2 oz portion of hard liquor.
Avoid high-risk sexual behavior such as unprotected sexual contact with multiple partners.
Be careful around synthetic chemicals, such as cleaning products and pesticides. If you come into contact with chemicals often, wear protective clothing and a face mask.
Get vaccinated against hepatitis B.
Eat a well-balanced, low-fat diet and take vitamins.

http://www.webmd.com/ and http://www.liverfoundation.org/eduction/info/cirrhosis

Nerves!

2008-03-29T14:44:00.002-05:00

I cannot believe how anxious/nervous/stressed out I am right now! There is so much stuff to try and get done with work in the next 2 1/2 weeks. That and I've been fighting a cold that arrived at my doorstep and decided to try and take up permanent residency! It's been two weeks that I've had this cold and it just won't go away no matter how many vitamins, liquids, steam, you name it, that I've tried throwing at it. I finally went to the doctor this morning after I about had a meltdown. I woke up and literally had to use my fingers to open my eyes. The sight in the mirror was not pretty; it takes the term fiery eyes to another level and they were completely dialated... yep, half scared out of my mind at that point.

The doctor told me I probably had some reaction to the cold medicine I was taking, which was causing my eyes to dialate, to stop taking it and that I have pink eye. This was after a series of questions that scared the hell out of me. Granted, I was a bundle of nerves before walking in; I wasn't sure what was going on and worried about whether or not a possible prescription might cause surgery to be delayed. I have some eye drops to use for the next week and some antiobiotics to take for this cold. After about 7 phones calls, I finally got the ok from a Liver Transplant Surgeon to take the medication; that it wouldn't cause any problems. Thank God!

I really don't want this surgery to be delayed. Charlie was admitted to the hospital on Monday due to very low hemoglobin which required a blood transfusion (a result of the liver not working properly, but he is back at home now).

UUGHH. Happy thoughts, happy thoughts, happy thoughts. I'm going to go give retail therapy a try! Better yet, maybe I'll go get a massage. :-)

American Liver Foundation "Flavors of Minnesota" Benefit

2008-03-23T19:24:00.005-05:00

I mentioned in my previous post that I "went out in style" on my last evening of being able to consume alcohol before starting my 2 month "dry" period.

The American Liver Foundation hosts the Flavors Culinary Gala benefit in various states to raise funds for research and education in the fight against liver disease. The Flavors of Minnesota event was last Sunday, downtown Minneapolis and it was such an amazing event! 20 of the Twin Cities best chefs prepared a five-course dinner, each course paired with wine, table side for 10 people.

My friend Toweya and I joined about 200 other people for this benefit and got all dolled up in our gowns. I finally had a reason to wear that little black dress I bought!

The evening started with an hors d'oeuvre's reception and silent auction, followed by the dinner, awards presentation and a live auction.

Our chef was Bill Baskin of Red Stag Supperclub in Minneapolis and the meal was wonderful! Prosciutto wrapped Gulf Mahi, Butternut Squash Ravioli and Duck were some of the items he prepared and ironically (or not) we also had MN Foie Gras (duck liver). I did actually try it (yes, mom... really) and I cannot even describe that moment. Let's just say I'll stick to donating part of my liver. Yikes!

The highlight of my evening was winning my silent auction bid on a basket of wine; six bottles of Trinchero - Mario's Reserve Maritage. I'm excited to open that first bottle! Everyone also left with recipes from each of the chefs' menu.

The chefs' and many other sponsors and volunteers donated their time and services to make the benefit a success. I learned a lot more that night about how many people are affected by liver diseases; more than 30 million Americans are affected by one or more of 100 diseases of the liver.

My invitation to the benefit was extended by Becky Waller of Chopped Liver. She is on the Board of Directors for the American Liver Foundation and the women I mentioned in my first post. Thank-you so much Becky!!! Toweya and I had a truly unforgettable evening and I really appreciate your support!

http://www.liverfoundation.org/chapters/minnesota/events/112/

Some Details about the Surgery

2008-03-19T21:01:00.007-05:00

So the questions I've been getting lately; what happens during surgery, after, how long will I be out of work, etc.

Charlie and I will go into surgery around the same time and it's about a 6-8 hr surgery. The liver has two lobes; a right and left which each have their own blood source. The gallbladder is attached to the left lobe. They'll take the left lobe of my liver, which is about 60% and remove my gallbladder (which I don't need). They'll remove all of Charlie's liver and replace it with my left lobe. The liver will regenerate in both of us and should return to normal size in about 2-3 months. The part of the liver that was taken out does not grow back. What is left of the liver grows to fill the space of the part that was removed. I'll be in the hospital for about a week. I should be able to go back to work around 6-8 weeks after surgery, but could be up to 3 months.

It sounds like I will have a pretty impressive scar, which is where my Blog name and URL came from. The scar is commonly referred as a "mercedes scar" because it looks like the Mercedes Benz emblem (minus the outside circle). I thought that was kind of interesting and cool! :-)

There are no long term side effects from the surgery. I won't need special medicine and won't need to change how I eat or live except for the short term, no alcohol & no birth control restriction. Yep, day 3 into my 2 months of no alcohol. Is it bad that I'm counting!! :-) I went out in style though Sunday night. I'll save that for another post.

Surgery date has been set!

2008-03-07T19:27:00.000-06:00

Surgery has been confirmed for Wednesday, April 16th (University of Minnesota -Fairview). Both Charlie and I will need to be at the Transplant center all day on the 15th. They'll be doing pre-op labs (checking vitals, doing a final blood cross-match and another chest x-ray and EKG for me) and introducing me to the nursing staff and then meeting with the transplant surgeons, although I've already met my surgeon at one of the previous appointments. They'll also go over the pre-op and post-op paperwork and pre-operative teaching (not sure what exactly that means, but it's in the letter I received from the Transplant Center).

Not much else to do before surgery (test wise), except try not to get sick! Everyone seems to have a cold, flu or strep. If I get sick within the few weeks before surgery, it may have to be postponed. Stay away from me people! :-)

What is Cirrhosis of the liver?

2008-03-05T22:58:00.001-06:00

Here's some background on cirrhosis (which I took from a non-copyrighted publication):

The liver, the largest organ in the body, is essential in keeping the body functioning properly. It removes or neutralizes poisons from the blood, produces immune agents to control infection, and removes germs and bacteria from the blood. It makes proteins that regulate blood clotting and produces bile to help absorb fats and fat-soluble vitamins. You cannot live without a functioning liver.
In cirrhosis of the liver, scar tissue replaces normal, healthy tissue, blocking the flow of blood through the organ and preventing it from working as it should.

Symptoms:
Many people with cirrhosis have no symptoms in the early stages of the disease. However, as scar tissue replaces healthy cells, liver function starts to fail and a person may experience the following symptoms:
--exhaustion
--fatigue
--loss of appetite
--nausea
--weakness
--weight loss
--abdominal pain
--spider-like blood vessels (spider angiomas) that develop on the skin

As the disease progresses, complications may develop. In some people, these may be the first signs of the disease.

Complications of Cirrhosis:
Loss of liver function affects the body in many ways. Following are the common problems, or complications, caused by cirrhosis.
--Edema and ascites. When the liver loses its ability to make the protein albumin, water accumulates in the legs (edema) and abdomen (ascites).
--Bruising and bleeding. When the liver slows or stops production of the proteins needed for blood clotting, a person will bruise or bleed easily. The palms of the hands may be reddish and blotchy with palmar erythema.
--Jaundice. Jaundice is a yellowing of the skin and eyes that occurs when the diseased liver does not absorb enough bilirubin.
--Itching. Bile products deposited in the skin may cause intense itching.
--Gallstones. If cirrhosis prevents bile from reaching the gallbladder, gallstones may develop.
--Toxins in the blood or brain. A damaged liver cannot remove toxins from the blood, causing them to accumulate in the blood and eventually the brain. There, toxins can dull mental functioning and cause personality changes, coma, and even death. Signs of the buildup of toxins in the brain include neglect of personal appearance, unresponsiveness, forgetfulness, trouble concentrating, or changes in sleep habits.
--Sensitivity to medication. Cirrhosis slows the liver's ability to filter medications from the blood. Because the liver does not remove drugs from the blood at the usual rate, they act longer than expected and build up in the body. This causes a person to be more sensitive to medications and their side effects.
--Portal hypertension. Normally, blood from the intestines and spleen is carried to the liver through the portal vein. But cirrhosis slows the normal flow of blood through the portal vein, which increases the pressure inside it. This condition is called portal hypertension.
--Varices. When blood flow through the portal vein slows, blood from the intestines and spleen backs up into blood vessels in the stomach and esophagus. These blood vessels may become enlarged because they are not meant to carry this much blood. The enlarged blood vessels, called varices, have thin walls and carry high pressure, and thus are more likely to burst. If they do burst, the result is a serious bleeding problem in the upper stomach or esophagus that requires immediate medical attention.
--Insulin resistance and type 2 diabetes. Cirrhosis causes resistance to insulin. This hormone, produced by the pancreas, enables blood glucose to be used as energy by the cells of the body. If you have insulin resistance, your muscle, fat, and liver cells do not use insulin properly. The pancreas tries to keep up with the demand for insulin by producing more. Eventually, the pancreas cannot keep up with the body's need for insulin, and type 2 diabetes develops as excess glucose builds up in the bloodstream.
--Liver cancer. Hepatocellular carcinoma, a type of liver cancer commonly caused by cirrhosis, starts in the liver tissue itself. It has a high mortality rate.
Problems in other organs. Cirrhosis can cause immune system dysfunction, leading to infection.
--Fluid in the abdomen (ascites) may become infected with bacteria normally present in the intestines. Cirrhosis can also lead to impotence, kidney dysfunction and failure, and osteoporosis.

When complications cannot be controlled or when the liver becomes so damaged from scarring that it completely stops functioning, a liver transplant is necessary. In liver transplantation surgery, a diseased liver is removed and replaced with a healthy one from an organ donor.

--source: http://digestive.niddk.nih.gov/ddiseases/pubs/cirrhosis/

Where to Start?

2008-03-03T21:41:00.000-06:00

Wow, this is a lot harder than it seems. This is my first time "blogging". I really wanted a way to be able to keep everyone up to date with what's going on and on my quest to find answers on the internet I realized that there is a lot of information out there, but trying to weed through that information is really consuming... time-wise and mentally.

My step father has liver disease; hepatitis and cirrhosis and needs a transplant. I found out that I'm a match and surgery will be in April. More on the exact details later.

Trying to find details about what exactly these diseases are and the surgical procedure for a live donor liver transplant (LDLT) was easy enough to find on the web. I was more interested in the what happens up to the point of surgery; how one goes from a donor candidate to a donor and what happens post-surgery.

I received an amazing booklet from the hospital where the surgery will be held which gives me a lot of information and I was introduced to a woman that donated part of her liver to her brother a couple of years ago. After reading her blog, I was inspired to start my own for various reasons; keeping everyone informed, as previously mentioned, but also to share the personal side of this event so that maybe it can help a future potential donor with their decision and help future donors feel a little less alone.

I definitely have a lot of love and support from my family and friends, but not having someone to talk with that has been through this exact experience leaves a mix of emotions. For me, reading through this woman's blog and exchanging a few emails to date, have somehow left me feeling uplifted, empowered and determined all at once.

Wow... welcome to my Blog!