2008 was quite a year!

I am certainly looking forward to a New Year of my new liver and I getting to know each other settling in so we can have years of fun and a long, healthy life together.....


Thank you all for listening to my ramblings, fears, stressing, obsessing and triumphs as I struggled through one amazing year of my life.

Thank you for all the support, cheering me on and most of all listening to me.

I have learned so much, so very much. From my family, friends, (online and off), my cruise buddies, my support group, my Dr's and health care providers and other cirrhosis patients and caregivers.

I KNOW there is a reason that I was chosen, if you will, to have this disease, to live with it, to deal with it, to learn about it and to come out the other side with a successful transplant, to learn how to live with all the things that come with that.

I have learned a lot about myself, about compassion of others, whatever they are dealing with, about patience with people and life in general. I have learned to take responsibility and take charge of the things you can, learn as much as you can, ask lots of questions, sort out the answers, do what you can and then enjoy everything you can while you wait..... because in reality you don't know what could be just around the corner.

Enjoy the warmth of the sun, the way your dogs run through snow when they live in the desert, Enjoy watching people open up about things they aren't really proud of and leave them feeling that you care about them even more for sharing because we don't judge them for past mistakes. We all have them. Watching your son struggle to become a man and your husband take care of you in a way he never thought he would have to, and smiling the whole way..........

No matter what my health brings in the future......good or not so good, I will handle it as best I know how and continue to try and reach others about the facts about what liver disease can mean to their lives and how to avoid it if it involves making a choice. Particularly to women who drink.........How I wish I had listened earlier when I had a choice before cirrhosis set in. Although I accept the journey I have been on, it certainly isn't one I wish for anyone....... A few vodka tonics less or skipped that bottle of wine...............well, I might not be telling the story I have been telling you all year or will be sharing with you shortly...

I will always support and share with fellow liver patients who are living with cirrhosis and have all the questions that I had about what is next??????

and finally I will fight for a better way for this country to deal with organ donation and allocation so there are enough organs available for people that need them. Be it a Liver, a Kidney, Lungs, Heart, Tissues for Burn Victims and Corneas so people can have sight. There are several options that are good ideas and it will take a lot to change the current M.O. But there has to be a better way.....Until then PLEASE Don't take your organs with you, HEAVEN KNOWS WE NEED THEM HERE.... and make sure that after you sign up, you tell your loved ones of your wishes.


In Fact........This is part of a document that you should read.....I had read these facts before but it hit me harder how lucky I was to get ONE of these organs....The odds were totally against me and everyone else waiting.....

A national crisis exists because of the critical demand for organ donations that is currently needed for over 100,000 gravely ill individuals on the national waiting list. While that number grows daily, a person on that list, or one who was removed because he/she was too sick dies every hour. In addition, over 2.5 million Americans die annually, but only a total of 14,400 living and deceased persons donated organs last year. ( From UNOS Facts 2008 )

Then when it crossed my mind more than once that I could be waiting for a kidney soon as well. Let's just say I wasn't very excited at the prospect. Here is a link to the entire Assembly Bill, The Organ Donation Enhancement Act.

I expect, hope and pray that the years to come will be wonderful for all of us! There is a lot to do, a lot of fun to have, love to share and people to share it with....

Stay Healthy and Don't forget to LOVE YOUR LIVER !!!!!

And the Parade Goes By.............

I don't know how many of you grew up watching the Rose Parade on New Years Day but I did every year......and in LA we get to watch it all day long on a loop !!! So Cal people are CRAZY about the Rose Parade in Pasadena ! They work on the floats all year and start decorating them the day after Christmas....Today!

I have always wanted to see the parade live but secretly love watching it on TV with a fire going and in my Jammies. We have gone down several years to see the floats on display the couple of days following the parade and I hope I can talk Joe into taking me this year.

One other thing that I have wanted to do is to help decorate the floats. It takes thousands of volunteers a week of 24/7 shifts in very cold hangars (think, KEEP THE FLOWERS COLD!) snipping, seeding, flowering each flower on all the floats.

When I found our local OPO (organ procurement agency) One Legacy, teams with Donate Life and does a float every year.....well, sounded like something I should do!

Last year I was just about on the list....but had a cold and wasn't feeling well, so 8 hours in a cold hangar didn't sound to smart and well, pretty much out of the question this year.....So, tune in NEXT year.....I will be there for certain!

In the mean time....check out the website, buy a rose for the float or some merchandise, donate some $$$$ and don't forget to register for organ donation if that is your wish while you are there!

http://www.donatelifefloat.org/
http://www.tournamentofroses.com/roseparade/

PS....The actual photo of a float is the one from 2004 one of my favorites and then there is the artist rendering of this years float. You will have to watch or come to Pasadena to see it....

Let's talk Liver.....Fatty Liver in particular (NASH)

The slide on the left shows fat accumulation in liver cells. The slide on the right shows healthy liver cells.

Ok, Enough with the pretty pictures and back to the subject at hand....Liver disease.


This photo as you have guessed by now is one of a fatty liver. Fatty Liver is one of the steps towards Cirrhosis. It doesn't always end up as cirrhosis but a lot of the time is does.

It can either be alcoholic related or not. NASH stand for Non-Alcoholic Liver Disease.

I am going to repost a little bit here and give you a couple of links to look at but what you should know is that it is becoming more and more prevalent and is effecting younger and younger people. Even children who are overweight. It is a serious health care problem today.

I will tell you how it relates to livers available for transplant in a minute...

Nonalcoholic fatty liver disease

Definition

Nonalcoholic fatty liver disease (NAFLD) describes a range of conditions involving the liver that affect people who drink little or no alcohol.

The mildest type is simple fatty liver (steatosis), an accumulation of fat within your liver that usually causes no liver damage. A potentially more serious type, nonalcoholic steatohepatitis (NASH), is associated with liver-damaging inflammation and, sometimes, the formation of fibrous tissue. In some cases, this can progress either to cirrhosis, which can produce progressive, irreversible liver scarring, or to liver cancer.

Nonalcoholic fatty liver disease affects all age groups, including children. Most often, it's diagnosed in middle-aged people who are overweight or obese, and who may also have diabetes and elevated cholesterol and triglyceride levels.

With the increasing incidence of obesity and diabetes in Western countries, nonalcoholic fatty liver disease has become a growing problem. Although its true prevalence is unknown, some estimates suggest it may affect as many as one-third of American adults.

Because early-stage nonalcoholic fatty liver disease rarely causes any symptoms, it's often detected because of abnormal results of liver tests done for unrelated issues. Treatments for nonalcoholic fatty liver disease include weight loss, exercise, improved diabetes control and the use of cholesterol-lowering medications.

Here is a link to more technical stuff from wikipedia talking about the differences between Fatty Liver related to alcohol or not....

One of the reasons I bring it up is PLEASE have your blood drawn at regular physicals and ask your physician in particular about your liver enzymes. ALT and AST. If they are high you need to pay attention !!!!!

I wouldn't be where I am if I had.....But then nothing is going to happen to ME !!! or so I thought. There won't be any outward symptoms....You won't FEEL sick but your liver may be screaming at you.

Something I learned from my coordinators at Scripps I find interesting. Usable livers available for transplant are getting scarcer as they can take a perfectly healthy looking donor. Get all the approvals for transplant from the family. Be ready to get the organs of that generous person ready for transplant. With a liver that includes a biopsy. And low and behold the liver is a *FATTY LIVER*, therefore NOT good enough for a transplant.

This is happening far more these days than in days past. There is more obesity, more diabetes or pre-diabetes etc and it is effecting the liver so much that it is no longer a viable organ for transplant.

ALSO, the increase of fatty liver in the general population is increasing the number of people who NEED transplants...

As you can see, it is becoming a huge problem and is effecting transplant from both ends. Donors available and an increase in recipients listed for transplant.

Hope everyone got out and voted today!

I have BIG NEWS

But THIS is way more important.......................................... Click Here

And don't forget the tissues...............................

The Listing Committee - Scripps

The Organ Transplant Waiting List

In the United States, more than 84,000 men, women and children are waiting for organ transplants. Their struggle to live depends on a complex and technologically-advanced organ allocation system that links patients with organs donated by strangers.

Subjected to intense scrutiny by the federal government, the public, and the medical profession, no other aspect of modern medicine is more analyzed and debated. Such scrutiny is essential. Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

In 1984, the National Organ Transplant Act established the Organ Procurement and Transplant Network (OPTN), a national organ sharing system to guarantee, among other things, fairness in the allocation of organs for transplant. Since 1984, the nonprofit United Network for Organ Sharing (UNOS) located in Richmond, Virginia, has operated the OPTN, under a contract with the Division of Transplantation in the Department of Health and Human Services. UNOS maintains a central computer network containing the names of all patients waiting for kidney, heart, liver, lung, intestine, pancreas and multiple-organ transplants; the UNOS "Organ Center" is staffed 24 hours a day to respond to requests to list patients, change status of patients, and help coordinate the placement of organs.

Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

Transplant Journey

Transplant Journey Website - stories of donation and transplant

Above I posted some photo's and interesting links for you. The first phot is of the Call Center at UNOS. I have found some interesting things to share with you this weekend as we head into fall but first let me share with you about my status for being listed at Scripps.

They did present *me* before the transplant committee last Monday and they came back with a YES, we will list you at Scripps....(YIPEE!) conditional upon completing and clearing a couple more tests...

They would like a colonoscopy... I am excited about THAT one.... but at this point you might as well look there as well. LOL

They also would like to check the status of my heart again with a 2D Echo.... no big deal as long as I pass. That test last year lead to a stress test and an angiogram to which I had to spend the night in the hospital in order to have a transfusion of platelets and plasma before undergoing the heart catheterization.

My Dr's at Loma Linda are also going to be ordering at least a stress test in November so we are working on trying to co-ordinate what everyone needs so I only have to do it once.

Sounds easy until you get the insurance company involved and then it comes down to who needs to place the order for which tests so they know who to pay, etc, etc.

So, I spent much of the last week on the phone, sending e-mails, faxes and heading to the hospital for (which is why I haven't posted yet).

I want to say to fellow patients and caregivers...MAKE SURE THAT YOU ARE PROACTIVE in making sure that the tests you need done get done in a timely manner. What I mean by this is ask if there are other options for completing the tests or lab work that might get them done sooner.

At Scripps, for example, they are the transplant center ordering the procedures but they aren't the closest to me geographically and they were also backed up to December on the colonoscopy. Now, this is something that doesn't HAVE to be done THERE... I am the one who wants it sooner so I have to be the one to MAKE it happen sooner. It isn't' a problem to find out what you need to do, you just need to take control of the things YOU CAN in your health care. Think about what needs to be done and why, Ask questions, Make phone calls.... In this case for example I have an order from Scripps scheduling both procedures, an order and referrals from my primary care doctor so I can have it done other places and My Dr's at Loma Linda are also looking at it and working on their schedules as well as calls to my insurance company for prior approval for the various places.... That way I can choose what is the faster, better choice for me so I don't have to wait 3 months for one test....

What I am saying here.....is open your mind, look at the options and make something happen.. Don't just wait around...It is your health. Your primary concern is YOU...They have lots of patients... All my health care providers have been very appreciative that I help in the process. Don't worry that you are being a pain...you are not...and even if you ARE.....so what! Just remember to thank everyone that helps you and ask nicely...you will be surprised at the help you can get with a pretty please, a smile and a thank you!

So, this is GREAT NEWS! I am NOT on the list officially yet...as in my name is not in the hat yet but it is ready to be thrown in as soon as I jump through the proper hoops.... Kind of reminding me of the kids board game *CHUTES AND LADDERS*. I will let you know when it is official and we are packing bags.

Regarding packing bags.......There isn't too much that the patient needs to bring to the hospital for the first couple of days as they will be in surgery, recovery and ICU etc for awhile. The people who REALLY need to pack are the people that will be waiting for you and the further away from home you are the more you should think about this.

Immediate Family and Friends who are most likely to be in the waiting room a lot will need a few things. Comfortable clothing, a few changes, a blanket, medications, toiletries, laptop, cell phone, chargers, magazines, crosswords, etc... Lists of phone #'s. any folders of things that have been prepared, places to stay, copies of advance directives....

Ok, well I am off to have a late Sunday breakfast with Joe and Joey....more to share about our get away cruise next....today, I promise!

donorcycle: Organ Donor Awareness Month

donorcycle: Organ Donor Awareness Month

Here is another post from donorcycle on donation.

donorcycle: The Real 24

This afternoon I recieved an e-mail from a fellow blogger, a recent kidney recipient in Austrailia. How I LOVE getting mail from my readers. Makes my DAY! His blog is The Ballad of Bill the Kidney Funny, maybe Bill the Kidney is friends with BillyBob the Liver. tee hee... (see the blog list)... This is what John had to say about the Real Life...............

Nancy is an American cruise fan who is working towards a liver transplant. Her blog is very out-there and well worth reading.

Anyway, one thing leads to another on the web and next I found a Blog called Donor Cycle written by a Transplant Coordinator. Both very good reads.

I am going to add them to the blog list below and wanted to post a couple of articles written by TC.

The first is an article that tells a story of one day in the life of:.... as he goes through a process of the day of an organ donation. A liver...

donorcycle: The Real 24

My First Appointment with Scripps and Dr Hillebrand Tomorrow

As you can all tell by my recent posts, I have really been focusing more and getting my Transplant sooner than later if possible. In all the things I have read, patients both pre and post transplant, My medical team at Loma Linda and the wonderful transplant coordinators, Judith at LLU and Thomas at Scripps along with Dr Darling and Joe of course, we are ready to start our next step of my journey by having our first of many appointments at Scripps Green as I attempt to be listed to be transplanted there in addition to Loma Linda.

I want to talk to you about what I am doing here..... You have the RIGHT to be what they call *DUAL LISTED*. Actually, you could be listed in as many *AREAS* as you like and are willing to go through the process to be listed at.

Your Transplant Team will advise you of this right. In fact you sign a piece of paper acknowledging that they have advised you of this right. (You sign LOTS of papers...!)

But it is important to know how the system works.

UNOS, who is the United Network of Organ Sharing Organization, ( I highly suggest your visit their site), is the organization in charge of Organ Allocation. Here is a brief description of what they do.

*The UNOS Organ Center is available 24 hours a day, every day of the year, to facilitate organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S. The primary functions of the Organ Center are to:

• assist in placing donated organs for transplantation
• assist in gathering donor information and running the donor/recipient computer matching process
• assist with transportation of organs and tissues for the purposes of transplantation
• act as a resource to the transplant community regarding organ-sharing policies*

Basically, it works like this.

The country is divided into regions. We are in region 5. Region 5 consists of Arizona, California, Nevada, New Mexico and Utah. Now within region 5 there are smaller more localized groupings. We at Loma Linda are in a group with other major transplant centers. Cedar Sinai, USC and UCLA are the big 4 in this area. San Diego has it's own area with 2 major centers and Northern Ca has 2 as well including, Stanford, UC San Francisco, UC Davis and California Pacific in San Francisco.

In order to better allocate and distribute viable organs the organs are best placed locally (they don't have a long shelf life...... :-) (I am still SO SURPRISED when people ask me when my transplant is SCHEDULED????? Which they often do!)

So, if your insurance allows it...which is a HUGE thing, or if you can afford the transplant yourself and if the Transplant Center agrees to have you as a patient and list with their facility, You have the right to be listed in any area you feel you would like to be transplanted at.

Now, not all transplant centers are created equally and I am not going to get into that here but do your homework as you should with any major health issue you may be facing.

I have and these are the best choices for ME..... I will leave it at that.

So, tomorrow, Joe and I head down to meet with my new hepatologist, Dr Hillebrand. He has been highly recommended to me by some of his former patients including Don, who just had his 10 year anniversary with his new liver, he is the head of our LLU support group along with his wife, Betty, who runs the caregiver support group. He was/is also Dr Darlings Doctor who is a 3 time liver transplant patient, who I wrote about in a previous post.

As you may imagine I am very excited and a bit nervous about tomorrow. I feel very safe and comfortable at my hospital home of LLU and it is a bit out of my comfort zone to venture out to another. The other reason for my feelings is that I am of course doing this in the hopes of getting my transplant sooner as they don't have as many people waiting with my MELD score and blood type. SO, that could mean that I am on my way........

I haven't mentioned to you all that it has been exactly ONE YEAR since I entered the Emergency Room Doors at LLU and was diagnosed and began this journey. It has been quite a year...I have learned a lot....more on that later.

So, I have my list of questions for Dr H and away we go!

Giving Blood for my Transplant

THANK YOU, THANK YOU, THANK YOU TO ALL THAT ARE

GIVING BLOOD, PLASMA AND PLATELETS IN MY NAME!

What a wonderful gift! xoxoxoxoxo I can't thank you enough......................

Set your DVR's!

I am pleased to announce that ABC7 morning anchor and living kidney donor Phillip Palmer has produced a 30-minute special, "Giving Life: The Story of Organ Donation", that will air on ABC7 this Sat Mar 22 at 6:30pm. The show will focus on both living and deceased donation and the ongoing need that makes donation such a critical public health issue.

If the below inspires you and you don't want to be left out of the fun..

Check the sticky to the left..................................

If you THINK you are a CA organ donor because of the pink sticker thing....well, you might not be.

http://www.donatelifecalifornia.org


Donate Life California is a nonprofit Organ and Tissue Donor Registry dedicated to saving the lives of thousands of Californians awaiting life-saving transplants.
Officially formed in 2004 after being authorized by the state, California's four federally designated non profit organ procurement organizations (facilitating the donation process across California), are committed to giving every person waiting for a transplant — a second chance at life.
Right now nearly 20,000 Californians wait for an organ transplant. That's 21 percent of the 94,000 people waiting across our country. Tragically, one third of them will die - waiting.
Until now, no Registry has existed for those of you who wished to give consent to be an organ and/or tissue donor. Historically, while signing a donor card and placing the pink dot on your license served as an important symbol of your intent, it did not place you on any list or Registry.
Now, Donate Life California allows you to express your commitment to becoming an organ, eye and tissue donor. The Registry guarantees your plans will be carried out when you die.Since July 1st of 2006, individuals who renew or apply for a driver’s license or ID with the DMV, now have the opportunity to also register their decision to be a donor in the Donate Life California Registry, and the pink "DONOR" dot symbol is pre-printed on the applicant’s driver license or ID card.
You have the power to donate life — sign up today to become an organ and tissue donor. Your generosity can save up to eight lives through organ donation and enhance another 50 through tissue donation.

I just went and registered for organ donation and it was quick and easy. If you decide to do the same please add my e-mail to the list of notification. It would make my day. One day your 2 minute online registration could save many, many lives of people who are waiting like myself.

I am also checking on the blood donations in my name as I have had many requests for that.

Currently you can only donate in my name in San Bernardino County. You do that by checking the REPLENISH box in the bottom with my name and Loma Linda Hospital on it.

I may be moving my surgery to Cedar Sinai in Los Angeles after I get put on THE LIST with UNOS officially. My transplant may take place there and that will be where I need the most blood, platelets, and plasma. I will let you know when that happens.

It is STILL always great to donate blood where ever you live.... You can find out your locations easily on the web.