MELD Score 32 - Frightened and Helpless

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lost_sad-09
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/12/2009 5:52 PM (GMT -7)   

I'm new to using forums, so I apologize in advance if I'm doing this incorrectly. I'm so scared and frustrated. My brother is 36 and was, up until the last month, a healthy, vivacious, happy man. He started losing weight in December of 2008, and his doctor attributed it to stress. In total, he has lost around 70 lbs in 9 months. He's 6'5", and was a bit overweight, so when he began losing weight it didn't seem completely alarming. A month ago, he became very lethargic, had zero energy, and his skin turned yellow. At that point, a doctor recommended he have a liver biopsy, and he was originally diagnosed with autoimmune hepatitis which caused liver disease. It was recommended that he schedule an appointment with a hepatologist immediately. We were told the hepatologist's office average 7-10 days to review the files to determine whether they would see him. A few days later, he became very confused, was slurring his words and looked terrible, so my Mom took him to the emergency room. That evening, he couldn't tell time, flush a toilet or operate a tv remote. He was in the hospital for 7 days, and during his visit, we were informed that he did not have autoimmune hepatitis as they had originally thought. Rather, he has alcoholic cirrhosis (although he was never a heavy drinker). He took lactulose 2X a day, which seemed to help moderately, although he remained very sleepy, and occasionally confused depending on the time of the day. My brother is a very quick-witted man, so it's a far contrast from the brother we're use to being around. It's breaking our heart to see him in this condition.

He never did see hepatologist during his stay, nor have we had conclusive information relayed to us about his liver biopsy. The doctor told us that he would need to come back in 6 months for further tests, and in the interim, attend alcoholics anonymous classes, and continue to see his primary care physician. The day after he was released, he collapsed in the bathroom and hit his head. His blood pressure had dropped dangerously low. An ambulance took him to the emergency room, where he stayed overnight for further tests. He was again released the following day and was told to move slowly from a laying, to a sitting and/or standing position. During his time at home, we ensure he was on a very low sodium diet (under 2,000 mg). 3 days later, he again collapsed from low blood pressure. We decided to take him to a different emergency room because he didn't seem to be getting the care/treatment he needed at the first hospital. The new doctors determined that his sodium levels were too low.

He's been at the second hospital for 5 days. My Mom tracked his MELD score, using an online calculator, and it has varied from 31 to 32. Based on my online research, he his gravely ill. I just don't know who to talk to, and where I can get a straight answer.

He was in a great deal of abdominal pain yesterday, so they gave him some morphine. Since then, he's been so tired he can barely speak. The doctors said he may need his body cavity drained, so they gave him vitamin k in preparation, which didn't do the trick. Today, he's had 2 plasma injections to get him ready to drain fluid. I'm not sure what this means. Now, the last communication I received is that this hospital is taking him back to the first hospital so that he can see the hepatologist. Why didn't he see the hepatologist the first go around? Why doesn't anyone care enough to want to treat him? What can I do? I'm so scared and feel completely helpless. I truly feel as though my family and I are useless and that my brother is all alone. Any suggestions would be greatly appreciated. I've been trying to stay positive and supportive through this entire process, but right now, I just feel broken down and so very sad for my brother. His MELD score is so alarming to me, I can't understand why his doctors aren't treating this as an urgent matter. It's as though no one wants to take responsibility for treating him.

Side Note: My brother took a very popular weight loss drug for over 2 years. I won't type the brand, as I'm not sure if it's against the forum's rules. The FDA recently recalled the drug because it was linked to serious liver damage. More than one doctor has indicated that this could have attributed to my brother's liver failure (toxins found in biopsy), however, since he admitted to being a mild/moderate drinker, his disease will still be labeled as Alcoholic Cirrhosis. Therefore, he will not be a liver transplant candidate for 6 months.

Thank you for reading my post and for offering any kind words/prayers,

KC


Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 10/12/2009 6:25 PM (GMT -7)   
(((KC))),

I am so sorry about your brother. I am glad you found our wonderful site. We are full of the most compassionate, knowledgeable and wonderful people.
First of all I want to tell you that you are a wonderful sister. Getting educated on this disease is the first best step you can make.

You and your mom are going to have to be your brother's healthcare advocate. His eyes and ears and MOUTH. If you have to go to the administrator of the hospital to have them get the Hepatologist to see your brother then do it. Be as nice as you can doing it. It's better to have everyone on your side. Kill them with sweetness. And if that doesn't work.....Don't be afraid to step on some toes if need be.

I would really make them accept the role the weight loss drug played in his liver damage, not his mild to moderate drinking. Get the exact definition of an alcoholic and if your brother doesn't fit the bill I would fight them saying that he has to go to AA for 6 months.

Lastly find out about the class action law suit..........there's got to be one going on...........Get your brother included in it. This is one expensive disease for someone who is too sick to work.

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.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/12/2009 7:11 PM (GMT -7)   

KC, welcome to the forum.  PG has given you some great advice.  I am sorry your brother is so terribly sick.  I would also suspect the weight loss drug for his liver disease.  With a MELD score that high, he should go to the top of the transplant list.  Of course, as you stated, the problem is their labeling him with alcoholic cirrhosis and requiring 6 mos. of documented AA meetings or alcohol counseling, depending on the transplant center. 

It doesn't seem to me that he has been getting the best of care.  When he initially started losing weight w/o dieting, blood work should have been done.  That might've shown abnormal liver enzymes.  At this point, it is imperative that he be under the care of a hepatologist.  Most liver patients need to be on a low-salt or no salt diet to prevent retention of fluid.  However, if it drops too low, that also causes problems.  Getting the electrolytes in balance is very difficult with liver patients.

Either your brother hid his actual alcohol consumption from everyone and lied about how much he drank (something that alcoholics do) or something else caused his liver disease.  You need to find out which it is.

My thoughts will be with you and your entire family.

Hugs,

Connie



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


lost_sad-09
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/12/2009 7:37 PM (GMT -7)   
Thank you so much Connie and Pink Grandma. I just can't believe how fast this has progressed. I feel like I'm in a nightmare, and I just need to wake up & it will all go away. However, It's truly comforting to know that I use this forum as a resource for emotional support and eduction about the disease.

A question that has been waying on my mind. Can MELD scores fluctuate? I ask because I know that his life expectancy is not good unless it decreases. Can people with end-stage cirrhosis "get better", or is his quality of life at its best until he receives a transplant? I'm grasping for anything that will make me feel better... if even just for tonight.

Thanks,
KC

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/12/2009 8:54 PM (GMT -7)   

Lostsad, yes, MELD scores do fluctuate, although usually not by much.  With proper nutrition and care, he could conceivably drop down into the 20s...but still needing transplant.  Try to focus on his overall condition rather than the MELD score, though.

Hugs,

Connie


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


lost_sad-09
New Member


Date Joined Oct 2009
Total Posts : 3
   Posted 10/12/2009 9:32 PM (GMT -7)   
Thanks so much. You are all wonderful.

Good Night,
KC

lavendar
Regular Member


Date Joined Nov 2007
Total Posts : 450
   Posted 10/13/2009 1:19 AM (GMT -7)   
Dear KC
I know how hope less it may seem to you. Don't give up be there for your brother. I am so very thankful to have a huband who cares enough to get me to where I am at today. And my son who has be here for me an time.
I had the one incident where I was lost. After that is was Dr. for six Months till the Biopsy. After the biopsy the gastrointerolgyst. told me I had to find a Transplant Center ASAP. So thats what we did the diagnosis of biopsy was ESLD. I wont go on blabing about me. Final diagnosis was made by the clinic which is Cryptogenic LD. Meaning they dont know cause. I am currently on transplant list with a
Meld score of 10 . I believe it was massive doses of Tylenol I used to take for my arthritis pain. Who knows anyway they gave me 5years to 48hours. So I have been waking from this same terrible dream for 3 years now not knowing when time will run out. Feel free to as me any questions you may have I read the posts every night or morning because I have insomnia . Help your brother as much as you can. \
********I will include you in my posting friends prayer*********june********

vasquez
New Member


Date Joined Jan 2009
Total Posts : 11
   Posted 10/21/2009 6:43 AM (GMT -7)   

So sorry to hear what care and Doctors are doing. It is hard to get on a transplant list. It took my husband about two years. But he is on it now and all most to the top with a meld score of 13, but because of his liver cancer he gets placed at a score of 22. You can get placed with different hospital that may let him on their list. You can be put on more than one list at a time if you are able to go thought the admitting process for that transplant center. The wait list can be difference lengths depending on where you live. It's because some areas people are better at being donors. Also they can do living donor transplants too. Not all centers do them. I know that California and Colorado do and Oregon does not. You just never know what will happen. He was too sick last year to be placed, but his score is higher this year and he is doing better on some days. I really did not think we would get this far. So there is always some hope even if it looks bad.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 10/21/2009 1:26 PM (GMT -7)   

Hi, Vasquez!  Good to see you posting and that your husband is on a transplant list.  Hopefully, he will get a liver soon.  As you may have read, I also had liver cancer.  However, because it had metastasized to the inferior vena cava, I was not a transplant candidate.  Thankfully, with treatment and a rt. liver lobectomy, I am still here today and cancer free for 2+ years.

Please try to keep us updated on your husband.  I know you are busy with work and kids.

Hugs,

Connie



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

Post Edited (hep93) : 10/21/2009 3:01:15 PM (GMT-6)


DGinSD
Forum Moderator


Date Joined Apr 2007
Total Posts : 839
   Posted 10/21/2009 7:00 PM (GMT -7)   
Lost_sad,
 
I have AIH (autoimmune hepatitis).  They don't know what my trigger was but if your brother's initial biopsy indicated AIH, why don't they think it's that anymore?  The diet drug he was on could have caused it as there are a few drugs out there that are known triggers.  He NEEDS to see a hepatologist.  You should also insist they check for AIH from bloodwork (ANA and ASMA---not always positive but lots of times they are) and second opinion on the biopsy.  The biopsy is the definitive diagnosis that hepatologists use when making AIH diagnoses that's why I'm surprised they are thinking it's alcohol related now.
 
I think you are a wonderful sister and I'm sorry it seems that the medical field has pushed him aside.  Are you going to a hospital affiliated with a university?  Some of those have great hepatologists on site.
 
Please keep us posted,
Dany
 
Diagnosed with AIH January 2007,
CMV (cytomegalovirus) June 2008
meds: Azathioprine 100mg
 
 


albatross111
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 5/18/2013 10:30 PM (GMT -7)   
 
     Hi KC,
 
     Two years ago I was new to this as well.  Extremely healthy at 46 antibiotics destroyed my
   
     liver in 5 months.  If  it were not for the advice from Johns Hopkins I don't know if I would have lived.
 
    They advised me to go to FL for less waiting time.  I got a transplant and am feeling alive again and doing
    
    very well.    
 
    My MELD was 22 when I was listed and 33 at time of transplant.  All the above advice is good.  If  your
   
    insurance is approved the best places to go
 
     are Mayo clinic Jacksonville (where I went) Cleveland clinic( in Weston FL too, GREAT surgeon) or Oscher clinic
 
    in New Orleans.
 
     The 3 things to consider 1 - waiting time at the
 
     center (there are 11 regions) 2 - long term results and 3- number of transplants performed in a year.
 
     Each center will have a social worker on the Transplant team who can be a great resource for insurance options
 
     etc. I just called a lot of people and eventually found some very kind ones. I went through alot of similar
 
     suffering as your brother.  A big help is the book First Cirrhosis on amazon. There are people at Mayo who      
 
     took OTC supplements that destroyed their liver.  For me prescribed meds.  Alcoholic LD does NOT happen 
    
     overnight.  There are early physical signs and warnings.    
 
 
     I'm here  sending you warmth, caring, support and prayers.
 
Mayo Jacksonville has alot of people from far away
 
they stay at the MAYO Inn(most insurance covers and it's a super support network).
 
 

**David**
Veteran Member


Date Joined Nov 2009
Total Posts : 3708
   Posted 5/19/2013 6:59 AM (GMT -7)   
albatross,
You're posting to a thread that's 4 years old. Not bad information, but....
nullum beneficium impunitum...

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4716
   Posted 5/19/2013 8:59 AM (GMT -7)   
Hi Albatross,
 
If you'd like to participate as one of our post transplant gurus, start a new thread and cut and past your intro information.
 
Can we help...or are you good now?
 
Mama Lama
MamaLama
Forum moderator - Hepatitis


Partner received liver transplant May 1, 2011, Jackson Memorial, Miami, FL
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