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.

@colleenyoung

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. 🙂

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That's good. Thank you.

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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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@rosemarya
I wear one and have several from Lauren'sHope.com
Both men and women.

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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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@rosemarya I had given that a thought, but then forgot about it until you mentioned it. I'll have to talk to my husband about getting one after his surgery.

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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 worn the same "silver" one for 9 years! It can be 'dressed up' by adding an extra bracelet on my wrist, or worn 'as is' like I did last week during my hiking adventure. The important thing for me it to wear it all the time.

I opted to get mine thru MedicAlert Foundation because they provide a 24 hr phone number that will connect the emergency services to my current medical status.
There is an annual feel for this service. However, I can update my medical history and changing medications as needed. Also provides a means to add my personal contact info, and most important to me (and comfort to my husband) is that I can include the 24/7 emergency call number to Mayo Transplant Dept. Here is their site ( https://www.medicalert.org/ )

While I was post transplant status, and during the preparation to go home phase of my recovery, my transplant team recommended that I wear a medical alert ID. They did not recommend any particular type. I think that you might hear more about this after husband's transplant.
My son, a first responder, says that the emergency personnel are trained to look for the medical ID's.

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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@gaylea1, I finally took the opportunity to look at diamond crystal art. I can understand the fascination with it! I used to do counted cross stitch and it was hard to put down because I always wanted to see what it was going to look like. The good thing is that you do not have to be in a hurry (you can't be in a hurry) when you work on it. I think it will be lovely when it is finished.

I never used to get more than 2 hours of sleep at a time, either. And my belly was so swollen with ascites that I could only sleep those 2 hours if propped up. So I completely understand your current misery.

Also, do not be concerned about errors! I have funny incident to share as a result of spell check on my iPhone. A couple of years ago, when I was at Mayo and had just completed my annual transplant checkup, I texted my brother from a restaurant that the doctor told me that 'my liver and kidney are happy'. Gotta love spell check because it sent that 'My lover and kidney are happy!' My husband and I almost choked when he sent his reply;-)
I hope that you are feeling as okay as is possible for now.
Hugs,
Rosemary

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I just had my one year check up and have been on the for the same time. My MELD was high enough at one point for me to be activated. At this check up my MELD has gone down to 11. I feel bittersweet about it. I’m going to work on moving on to goals I thought I would have to address after transplant – change in housing, etc.

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@kltchrmn, I can understand your 'bittersweet' reaction to your changed transplant status due to the lowered MELD score. Liver disease has a way of causing confusion and upheaval in all aspects of life. I believe that you are making a wise choice by going to work and moving on to your goals. When/if you do become activates, there will be no way of knowing how long you will wait for a transplant or how you will be feeling. Each one of us is different and our bodies, our diseases, our medical histories play such a unique role in what will happen. You will be happy to have a normal routine that you can participate in as long as you are able.

Sometimes, with dietary modifications, avoiding alcohol and certain medications, and treatment, the liver damage can be reversed; sometimes there is no cure except transplant. I had Primary Sclerosing Cholangitis (PSC) and there is no treatment to reverse the damage. But I was monitored carefully throughout my entire time with the disease. I did have a successful transplant.

Do you know what caused your liver condition? And did you make any healthy changes that were responsible for the better score?

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@rosemarya

@kltchrmn, I can understand your 'bittersweet' reaction to your changed transplant status due to the lowered MELD score. Liver disease has a way of causing confusion and upheaval in all aspects of life. I believe that you are making a wise choice by going to work and moving on to your goals. When/if you do become activates, there will be no way of knowing how long you will wait for a transplant or how you will be feeling. Each one of us is different and our bodies, our diseases, our medical histories play such a unique role in what will happen. You will be happy to have a normal routine that you can participate in as long as you are able.

Sometimes, with dietary modifications, avoiding alcohol and certain medications, and treatment, the liver damage can be reversed; sometimes there is no cure except transplant. I had Primary Sclerosing Cholangitis (PSC) and there is no treatment to reverse the damage. But I was monitored carefully throughout my entire time with the disease. I did have a successful transplant.

Do you know what caused your liver condition? And did you make any healthy changes that were responsible for the better score?

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@rosemarya I was diagnosed with fatty liver disease and cirrhosis at the same time. I was activated last year when my MELD hit 26. I remain activated for now.

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@kltchrmn

I just had my one year check up and have been on the for the same time. My MELD was high enough at one point for me to be activated. At this check up my MELD has gone down to 11. I feel bittersweet about it. I’m going to work on moving on to goals I thought I would have to address after transplant – change in housing, etc.

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@kltchrmn I am always amazed when I hear of MELD scores going down like this. I really don't understand how that happens. I thought the best I could do was to slow the progress of my cirrhosis, and my MELD continually increased slightly.
Since yours is down to 11 now I hope that indicates that you are feeling fairly well also.
JK

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@rosemarya

@kltchrmn, I can understand your 'bittersweet' reaction to your changed transplant status due to the lowered MELD score. Liver disease has a way of causing confusion and upheaval in all aspects of life. I believe that you are making a wise choice by going to work and moving on to your goals. When/if you do become activates, there will be no way of knowing how long you will wait for a transplant or how you will be feeling. Each one of us is different and our bodies, our diseases, our medical histories play such a unique role in what will happen. You will be happy to have a normal routine that you can participate in as long as you are able.

Sometimes, with dietary modifications, avoiding alcohol and certain medications, and treatment, the liver damage can be reversed; sometimes there is no cure except transplant. I had Primary Sclerosing Cholangitis (PSC) and there is no treatment to reverse the damage. But I was monitored carefully throughout my entire time with the disease. I did have a successful transplant.

Do you know what caused your liver condition? And did you make any healthy changes that were responsible for the better score?

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@rosemarya Rosemary, am I incorrect in thinking if it has progressed to being cirrhosis that it cannot then be reversed? I know that fatty liver can be, but I was under the impression that cirrhosis could not be.
Thanks. JK

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