It's not all about the MELD Score

Posted by amyintucson @amyintucson, May 19, 2018

There are lots of threads out there with questions and comments about MELD Scores. I just had my 1year/3 month pre-liver transplant review and my MELD is a 10. The doctors at Mayo/Phoenix emphasized that the MELD isn't everything as some people are sicker than their scores indicate. They have me on the "active" list and am in the discussion at their weekly team meetings. I have venous congestion that is of major concern because if it continues to grow it causes other operative problems. I have had esophageal varices banded – 6-8 times (no bleeding so far) – but that has precluded using a blood thinner to allow the body to dissolve the clot on its own. If my next upper endoscopy – in the next 2 weeks here in Tucson – shows no new varices we may try the blood thinner even with my low platelet counts. Though it increases the risk of bleeding, with weekly monitoring its a risk/reward decision. The bloid thinner will likely raise my INR and temporarily raise my MELD, it's worth a shot if the body breaks up the clot.

Interested in more discussions like this? Go to the Transplants group.

@gaylea1

@amyintucson you are right about the MELD score not being everything. My meld score was 25 a year ago and 27 now. I am on a wait list and have been for the past year. Apparently I am stable and though my score is high I am not considered a high priority. The wait is what is killing me now. Not being able to travel or drive. Anxiety and depression now seem to be my worst enemies.

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@amyintucson The wait is hard. I did live my normal life, but I did not travel anywhere for fear of having an episode and landing in an unfamiliar hospital. I did keep active locally though.
JK

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@gaylea1

@amyintucson you are right about the MELD score not being everything. My meld score was 25 a year ago and 27 now. I am on a wait list and have been for the past year. Apparently I am stable and though my score is high I am not considered a high priority. The wait is what is killing me now. Not being able to travel or drive. Anxiety and depression now seem to be my worst enemies.

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I have the same concern about traveling but I have family in Texas that provides great support. I have a card that I carry listing my conditions plus my medications.

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@gaylea1

@amyintucson you are right about the MELD score not being everything. My meld score was 25 a year ago and 27 now. I am on a wait list and have been for the past year. Apparently I am stable and though my score is high I am not considered a high priority. The wait is what is killing me now. Not being able to travel or drive. Anxiety and depression now seem to be my worst enemies.

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@amyintucson During the summer of 2015 I was totally independent, I drove long distances by myself with no problem, and the only reason I didn’t do any long distance traveling was because I did not want to be stuck in a strange place, particularly one where I could not speak the language, and have an HE episode.
At the beginning of the summer of 2016 I told my husband, much to his surprise, that I did not want to drive long distances alone. Even though I had not had a problem I did not trust myself. Then things went downhill in July, and further and further downhill in August, so I guess I knew that things were heading south.
JK

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@hogan_g1937

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

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@gaylea1 , I am happy that you are finding some comfort during this difficult time of waiting for your transplant. I am a liver/kidney recipient (2009) and I clearly remember that time in my life.

I live in central US and even though I am surrounded by many acquaintances who are involved in medical fields, very few had any experience with serious liver disease, much less liver failure-transplant. My friends and family were in denial until I showed the jaundice!
It can be a lonely time/place. My best support (other than my husband) was a friend who is a nurse with some experience with transplants. She understood, and she was able to talk to me openly and honestly.

When I returned back home after my transplant. I needed someone to talk to about living with my transplanted organ and that is when I found Mayo Connect. I want you to know that you are welcome to drop in anytime, even if you just want to pass time. Here is a good place to fight boredom! – https://connect.mayoclinic.org/discussion/this-and-that-and-talk-my-transpant/

Here are a couple of interesting articles from the Transplant Pages https://connect.mayoclinic.org/page/transplant/tab/newsfeed/
https://connect.mayoclinic.org/newsfeed-post/liver-transplant-patients-can-avoid-costly-stay-in-icu-after-surgery/
https://connect.mayoclinic.org/newsfeed-post/frailty-what-is-it-and-how-can-it-affect-patients-with-cirrhosis/
I look forward to hearing more from you. What do you do to pass the time?
Rosemary

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@hogan_g1937

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

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@hogan_g1937 I too was not physically sick until very shortly before I was transplanted. I did have occasional bouts with HE, but other than that my only problem was when I was taking lactulose it made me feel very nauseated, and of course I had the very smelly bowel movements and gas from it.
Liver cancer does add points to your MELD score, I had that also.
I was also told by my hepatologist's NP that it would be at least November before I was called, but I was called on September 22, transplanted on the 23rd.
I hope your husband does get the call sooner than November. It is such an incredibly wonderful feeling to wake up and feel the worse is behind you. Sure, there is discomfort following surgery, but you know that is temporary.
I will be thinking of you and looking forward to hearing when your husband gets "the call".
JK

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@gaylea1

@amyintucson you are right about the MELD score not being everything. My meld score was 25 a year ago and 27 now. I am on a wait list and have been for the past year. Apparently I am stable and though my score is high I am not considered a high priority. The wait is what is killing me now. Not being able to travel or drive. Anxiety and depression now seem to be my worst enemies.

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I wear a medical ID bracelet. I was advised to wear one after my after my transplant. I chose to purchase a pretty silver one because I knew I would wear it every day. I am able to make updates to my medication list as well as other vital information in case it is ever needed in an emergency.

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@hogan_g1937

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

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@rosemarya thank you for your kind support. I hope your post transplant life is going well. To pass the time, because I can't drive now and am somewhat isolated, I watch Netflix and Britbox. I also play the piano, colour, and have started with diamond paintings. I read quite a bit too. I'm hoping living in the now will teach me patience. Will be posting when I finally get the surgery.

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@hogan_g1937

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

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@gaylea1 I can't guarantee that this experience will teach you patience, but it will give you a new appreciation for the simple things in daily life (after your transplant). I used to like to do puzzles, but as my symptoms got too bad, I could not sit at the table to do them for very long. I even found the laptop to be too heavy for my lap (think of a 2008 model) and I was too exhausted to use it anyway.

Are you able to still enjoy the piano? I play violin, and years before my transplant I loaned it to my sis-in-law. After my transplant my brother brought it to me and I started playing again. I've been at it for around 5 years, and I am enjoying it very much.
Life is very good for me, and I credit that to a healthy lifestyle pre and post transplant, along with healthy genes.

I have never heard of diamond paintings. What is that?
Have you thought about keeping a journal during this time of waiting?

Rosemary

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@hogan_g1937

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

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@rosemarya I am so happy to hear you're playing the violin again. What a beautiful instrument. I do weary quickly but I take shirt rests. My sleep is much to be desired. I am unable to sleep more than 2 hours at a time. Diamond art is a new craft you'll see it advertised a lot on FB. I'm not really a crafty person but I'm going to try my hand at this. It's like paint by number except you use coloured "diamonds" or crystals. They're create quite an effect. I'm starting a pug for my daughter. I am so glad you are doing well. I have thought about journaling as I took journalism in college but am finding it hard to keep my mind disciplined right now. That's why I'm doing random arts. I try and okay the piano when I can.

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@hogan_g1937

My husband has a MELD Score 30. Even though his MELD is considered to be high and possibly first on the transplant list he is not physically sick. It has been a couple of years since he has been hospitalized with HE and Ascites. Yes he is in a lot of pain most days and he push through it. He does drive, keep the yard cut and just about anything he wants to do. So I guess the MELD does not mean the sickest. Just a little confused about the MELD and what it really means as far as your overall health and placement on the transplant list.

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@rosemarya also I apologize for errors in my posts. Sometimes I depend too much on spell check lol

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