meld score & transplant

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laser1921
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/6/2010 5:31 PM (GMT -7)   
Hi,

when I was 1st diagnosed with cirrhosis a year & 1/2 ago my meld score was 18

i was listed this past April at 13, since then my score is fluctuating between 10-13

i feel great, in fact better then I've felt for years.

I am 59 years old, and don't know what to do, I'm scared to death about getting a transplant, and would be more than happy to live the rest of my live as is.

has anyone else experienced this, I never feel like I'm getting a straight answer from my transplant team.
will I just wake up one day and feel really sick & not be able to function?

also, the risk factors of surgery & the financial burden that will effect my family weigh heavily on me

I would welcome feedback from anyone with similar experiences.

Thanks,
Laser 1921

Butterflythree
Veteran Member


Date Joined Oct 2007
Total Posts : 954
   Posted 9/6/2010 6:05 PM (GMT -7)   
Welcome to the forum Laser. I don't think anyone can tell you what to expect from this disease, as it affects people so differently. There are several good posts here that can help educate you on what may be to come. My husband was diagnosed about 5 years ago. The only symptom he had was fatigue. Since then he has had a bleed in his stomach from varices which developed from portal hypertension. He had a TIPS procedure to prevent that from happening again. The only thing he seems to suffer with now is encephalopahty which we have been controlling with Lactulose. He is currently trying to get listed. He is also very afraid. Just be thankful you are on the list. As you get sicker your name will move up. I think the average MELD score for liver transplant is between 25-30 (at least in our area).

My thoughts and prayers will be with you as you battle this disease.
Butterflythree
 
There is always hope!

laser1921
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/6/2010 6:26 PM (GMT -7)   
Thanks, Butterflythree

your comments & thoughts are much appreciated

Laser1921

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/6/2010 6:44 PM (GMT -7)   

Hi, Laser, and welcome to the forum!  That is very good news that your MELD score is staying low and that you are feeling great.  You could continue that way for some time to come.  However, you could also suddenly have problems with bleeding varices, ascites, etc.  Our member, David, had a transplant just over a year ago and it was rather unexpected.  He turned bad suddenly. after having hep C for 40 years from a transfusion.  Remember that transplant is a last resort.  They are going to treat your symptoms before proceeding to transplant.  So enjoy the fact that you are feeling well and live each day fully!  Do you care to share what transplant center you are going to?

Hugs,

Connie



hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

laser1921
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/6/2010 7:28 PM (GMT -7)   
Connie,

thanks for your encouragement, aside from the transplant (which i try not to think about) for me the struggle is the anticipation that i will start feeling ill & when that might start

i am being treated at Lady of Lourdes in Camden, NJ

Laser1921

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 9/6/2010 7:47 PM (GMT -7)   
Hi Laser,
Connie is right about the suddenness of my transplant. I had gone for just over 5 years with a MELD score in the low to mid teens, though there were two times when it was high teens. I didn't realize how sick I'd been, until a few weeks after my transplant. If your docs think you may someday need a transplant, get in the program, now. You may never need one, but if you did, that's not the time to try to get all of the testing done. Besides, once a liver is offered to someone, they are free to turn it down. It's not uncommon. I took my offer and I'm glad I did. Be well.

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 9/6/2010 8:21 PM (GMT -7)   
Laser,

My husband is on the list, but very low on the list as his MELD right now is only 7. However, it has fluctuated up and down at times. That is fantastic that you are feeling better than you have in a while. Take every day one day at a time. Enjoy the fact that you are feeling good and don't worry and stress about what may or may not happen in the future. The stress is no good for your body. So, take care of yourself, and enjoy the good days you have.

Blessings to you!
Mer

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/6/2010 8:40 PM (GMT -7)   

I agree with Mer, Laser.  It's good that you are taking the steps you need to in case things should change down the road, but it does you absolutely no good to worry about when that might happen.  It's wasted energy.  Use that energy to do positive things while you are feeling well.

Do keep us updated on your progress.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 9/6/2010 9:14 PM (GMT -7)   
Hello Laser and welcome to HealingWell.   My advice to you is to keep doing what you are doing.......apparently it is working good for you.   Enjoy your life now, as others have said .....ya never know when you may take a turn for the worse.
 
I also want to congratulate you on being listed........no easy thing to accomplish.  Hopefully you will not need a transplant for a long time........but it is great to have that option if and when you really need it. 
 
It took my husband well over a year for my husband to get listed.  By the time he got listed his cancer had grown too large and multiplied too much......they took him back off within a month.  He died about 6 weeks later.  So, I know that transplant surgery is scary...........but the alternate.......is even more scary and more devastating to the family left behind. 
 
 
Lot's of thoughts and prayers.........
 
 
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.

laser1921
New Member


Date Joined Sep 2010
Total Posts : 4
   Posted 9/7/2010 1:32 AM (GMT -7)   
Thank you all for responding to my post.

It is comforting to know that there are others who have had similar concerns & you have all been so kind in your response.

I know I should feel lucky that I made the list, it also took about a year for me to qualify,

does anyone know if you reject a transplant if offered, do you remain on the list or removed?

Thanks again for your thoughts & prayers

Laser1921

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 9/7/2010 10:05 AM (GMT -7)   
Had I turned down the liver offered, I would have still been on the list. That was MGH. I can't speak for other hospitals.
"No good deed goes unpunished."

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 9/8/2010 7:30 PM (GMT -7)   
Laser, I guess the hardest thing about turning down an offer for a liver is if you suddenely get worse will you get another offer in time. So I would really make sure of that decision and what you want as for quality of life!
I wish you the best what ever direction you choose.
Sue
Adapt yourself to the life you have been given; and truly love the people with whom destiny has surrounded you.
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