WE HAVE A LIVER!

Penny, the information you provide on the forum is invaluable.

We love you, too! 

Hugs,

Connie

Penny,

I am so glad Harvey continues to do so well. Reading your posts has been such an inspiration and so informative for those of us in the pre-transplant stage. My husband was supposed to go to the transplant clinic to see the hepatologist yesterrday, and upadted blood work, and several other tests. However, I had to cancel because he has been battling what we thought has been pluerisy for the last week, but he's not getting any better. So, taking him to a pulmonary doc Monday so see what the deal is.....I wanted to speak on the MELD score issue. My husband's score has fluctuated up and down alot recently, and the last MELD listing he had was a 7!! In the area we are, they have not taken him off the list, but they have informed me that they will not call us for a liver or call us in as a backup until my husband's MELD gets to 15 or higher.....so, basically, he is still active on the list, just at the bottom of the list. We are in the Dallas area, and I hope this helps some.

Sounds like you are doing a fantastic job taking care of Harvey!!! Keep up the good work!

Mer

Geography must be considered in organ donation due to the length of time it takes to transport the organ from the donor to the candidate.  The time the organ is outside the body plays an important role in a positive outcome.

Livers (all organs) are offered to the most critical patients first in a donor’s local area.  This is also determined by their MELD (Measure of End-Stage Liver Disease) score.  These patients are usually hospitalized in critical care and in imminent danger of dying due to liver failure.  They are listed on a completely separate list called Status 1.  If there are no such candidates in the local area (usually a state or large metro area), the liver is offered to Status 1 candidates in a regional area (there are 11 regions in the US).  Note:  A patient can be bumped to the Status 1 list and be returned to the regular blood-type compatibility list if their condition is stabilized.

The size of the organ is always considered.  So, if the donor is under 18-years of age, children (under 11-years of age) and adolescents (age 12-17) are always consider (and rightly so) before adults (age 18 and over).  Children 11 and under are prioritized on the PELD (Pediatric End-Stage Liver Disease) scoring system.

Once a donor is identified, the organs are offered in this order:

Status 1 (local area)

Status 1 (regional area)

Pediatrics (regional area)

Adolescents (local area)

Adults with a MELD of 15 or higher (local area)

Adolescents (regional area)

Adults with a MELD of 15 or higher (regional area)

Adults with a MELD of 14 or less (local area)

Adults with a MELD of 14 or less (regional area)

Then the organ is offered Nationally in the same order.

Since the PELD/MELD scoring system does not always represent the patient's true medical urgency, exceptions can be made to increase the score.  The transplant team would have to file an exception to the UNOS review board.  If the board accepts, the PELD/MELD would be increased and the patient would be reprioritized on the list. 

I personally don't know what criterial would be required to increase the MELD score, but I'm certain a good doctor would know.  If I get a chance, I will do some more research on this.  You would also have to have a doctor willing to process the red tape.  This goes back to my insistance that you (the patient) take as many family members to your follow-up appointments as possible.  The show of force could make the difference in the doctor's willingness to take on the board.

When you see the priority listing like that, it makes you realize what a true gift Harvey has received, and anyone who is able to get a transplant.

Thanks again, Penny, for all the info.

TRANSPLANT REGIONS in the US

The states comprising each region are as follows:

• Region 1: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Eastern Vermont
• Region 2: Delaware, District of Columbia, Maryland, New Jersey, Pennsylvania, West Virginia, Northern Virginia
• Region 3: Alabama, Arkansas, Florida, Georgia, Louisiana, Mississippi, Puerto Rico
• Region 4: Oklahoma, Texas
• Region 5: Arizona, California, Nevada, New Mexico, Utah
• Region 6: Alaska, Hawaii, Idaho, Montana, Oregon, Washington
• Region 7: Illinois, Minnesota, North Dakota, South Dakota, Wisconsin
• Region 8: Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming
• Region 9: New York, Western Vermont
• Region 10: Indiana, Michigan, Ohio
• Region 11: Kentucky, North Carolina, South Carolina, Tennessee, Virginia

Penny

I do know if sodium goes to 25 or lower you get extra points on your MELD also if a tumor is found on the liver I was told you go to the top immidiately.  We also have a Gastro Dr. here in Knoxville that gets my husbands blood work so we can keep track of his MELD.  He also helps me watch the Creatinine levels so he won't get too dehydrated.  As you know that lowers his MELD score.  It really sucks but he has been so sick in the past becasue of Dehydration.  I worry so much about his kidneys.  They have shut down a few time.  He is not on dialysis.  I'm so concerned by he time he gets a transplant his kidneys will be in terrible shape.  Vanderbilt runs a really tight ship.  Everyone on their list has received a liver.  Because of JErry's blood type (O) they have told us that most people with his blood type don't get thier transplant until they are about a 25 MELD>  I CANNOT immagine what his body will be like at that point.  He is so week now.  Actually he is much better then he was last year.  He's only been in the hospital once this year.  In 2007 and 2008 he was in the hospital as much as he was out.  It was horrible.  I am so glad Harvey is doing good.  All your information just gives me so much more hope.  I think of you often as I don't work and you are back to work.  I can not immagine how hard that must be.  I know family helps.  Jerry's mom is just to fragile and all our adult children have small children and jobs.  So we cannot ask them to help.  We just take it day by day.  Thanks Again

JoAnn

Dear Penny and everyone who posted on this thread,

I just read your informational post on another thread and then went to this one and read it start to finish.    Thank you for putting all of this information, advice and love into a thread.   Today we are having a snow storm in Virginia.   I had time to sit and look out the window at a beautiful landscape and I happened on this thread.   You all have made my day.  

Love,

Joan

Penny, the one thing about the tumor on the liver placing that patient at the top of the list doesn't hold if it has metastasized, as was the case with me.  I was never even evaluated for a liver transplant as my liver function was still good, but the metastasized tumor put me out of the game entirely.  I'm so grateful that Mayo had an alternative which worked out for me, and while I lost the entire right lobe of my liver I didn't have to go through the roller coaster of transplant.

Joan, I'm glad you found this thread and some answers.

Hugs to all,

Connie