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amyintucson
@amyintucson

Posts: 29
Joined: Feb 07, 2018

It's not all about the MELD Score

Posted by @amyintucson, Sat, May 19 9:53pm

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.

REPLY

@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.

@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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The waiting is hard but I try and do what I can. There are days I can't make it out of bed but others where I can accomplish some things. It's hard to make plans as I never know how I'll feel on a given day. I do travel some – got to try to keep the brain engaged somehow!

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.

Hi @hogan_g1937
You'll notice that I moved your message to the existing discussion about MELD scores that @rosemarya mentioned. I did this to bring everyone discussing the topic of MELD scores together "around one table" so to speak. 🙂

@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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Thanks, overall I am holding up good. I guess my concern with the MELD is because in my eyesight and caring for him is a transplant really needed at this time. We were told the transplant will probably be around November of this year. I didn't mention in original post that he was treated for Liver Cancer this year. Maybe that's what upped the meld score. I love reading your post and thoughts. I log on everyday to read your advise to others. Such a sweet and wonderful person.

@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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@rosemary So typical of you to show such compassion. I absolutely love your very informative links. Even more so your concern for others well being.

@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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I hope that my experience can help someone else.
I would have loved to have a group like this when I was going thru the transplant waiting and accompanying symptoms and declining health. It can be a frightening time, and a lonely time because of the emotional, physical, and spiritual struggles involved.

I am 9 years post transplant, and I continually learn and gain support/inspiration when I read about all of our amazing members.
Has there ever been such a show of support and strength and hope among 'strangers' anywhere?

@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 have been following this MAYO Clinic site for a while now. I am from Canada – London Ontario, and have not found anything similar here. I have found the members here to be informative, caring and honest in their posts. I have found a lot of comfort as i have no one here i know to discuss issues and experiences with. I thank you all. My MELD has been stable at 27 for over a year and have been on our wait list 1 year. Praying that my day will come soon.

@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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Does anyone happen to know the history of when Mayo Connect became a public forum?

Liked by beckyjohnson

@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 Is it possible to start something like this through the Transplant network in your country? Maybe you can get some ideas on "how to" from Mauo Connect moderators. You will know who they are by their title that is listed under their profile picture. I'm sure those of us who believe in prayer will keep you in our prayers.

Liked by beckyjohnson

@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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Hi Becky,
Mayo Clinic Connect has always been a public forum.
The mission of the global community is to connect people wherever they may be receiving care. People participating in the Connect community come from around the world, including members from Canada, Mexico, Sweden, Germany, Holland, South Africa, Australia, New Zealand, Venezuela, Columbia and many more countries. Some members are Mayo Clinic patients, some are perspective patients and still others may never be patients. All are welcome to the informative and supportive discussions found here. By keeping the forum open, members can help as many people as possible.

You can read more about Connect here:
– About https://connect.mayoclinic.org/page/about-connect/tab/aboutconnect/
– More about https://connect.mayoclinic.org/page/about-connect/tab/more-about-connect/
– Why & How We Moderate https://connect.mayoclinic.org/page/about-connect/tab/moderators/

@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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@colleenyoung Thank you for the links. I will check each one out.

Liked by beckyjohnson

@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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@beckyjohnson thank you for the great idea. I will have to liaise with my coordinator on this. I appreciate your prayers. There is s lot of power in prayer.

@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

@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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