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amyintucson
@amyintucson

Posts: 33
Joined: Feb 07, 2018

It's not all about the MELD Score

Posted by @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.

REPLY

@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

Liked by amyintucson

@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

@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

Liked by jerrydrennan

@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.

Liked by jodeej

@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.

@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

@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.

@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

Liked by jeanne5009

@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.

@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.

@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.

@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

@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

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.

@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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