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 Support Group.

JK | @contentandwell | Jun 25, 2019

In reply to @gaylea1 "@contentandwell is Biotin a sort of shampoo or rinse? How is it used?" + (show)

@gaylea1 As @cmael said, it is a supplement. Here is a picture of the one I use.
JK

gaylea1 | @gaylea1 | Jun 26, 2019

In reply to @contentandwell "@gaylea1 As @cmael said, it is a supplement. Here is a picture of the one I..." + (show)

@contentandwell thank you so much. I went on line and looked it up. We have a Jamiesom brand and I'll be buying that.
What dosage do you take?

JK | @contentandwell | Jun 26, 2019

In reply to @gaylea1 "@contentandwell thank you so much. I went on line and looked it up. We have a..." + (show)

@gaylea1 That brand has 2500 mcg but I recently bought it again and had to take straight biotin. That comes in 1000 mcg pills so I am taking two a day.
My transplant team suggested the biotin, so they are definitely on board.
I have no idea if it helps growth or what but my hair definitely did get thicker when I was using it.
JK

Colleen Young, Connect Director | @colleenyoung | Jun 26, 2019

Here's some additional information regarding biotin.

Healthline - Biotin for Hair Growth: Does It Work? https://www.healthline.com/health/biotin-hair-growth
NIH - Biotin https://medlineplus.gov/druginfo/natural/313.html

JK | @contentandwell | Jun 27, 2019

In reply to @colleenyoung "Here's some additional information regarding biotin. Healthline - Biotin for Hair Growth: Does It Work? https://www.healthline.com/health/biotin-hair-growth..." + (show)

@colleenyoung Thanks, Colleen, good articles.
JK

gaylea1 | @gaylea1 | Jun 27, 2019

In reply to @colleenyoung "Here's some additional information regarding biotin. Healthline - Biotin for Hair Growth: Does It Work? https://www.healthline.com/health/biotin-hair-growth..." + (show)

Thank you very much ❤

kimestes | @kimestes | Dec 25, 2020

In reply to @gaylea1 "@amyintucson you are right about the MELD score not being everything. My meld score was 25..." + (show)

The anxiety and depression are the worst thing for me, especially with Covid and not really being able to see people. Gives me too much time to think!

Rosemary, Volunteer Mentor | @rosemarya | Dec 26, 2020

In reply to @kimestes "The anxiety and depression are the worst thing for me, especially with Covid and not really..." + (show)

@kimestes, You are not alone with the waiting and feeling miserable. I remember that the clock seemed to slow down as I watched the minutes and days pass ever so slowly. I tried to remain positive by focusing on one day at a time, and relying on my faith and friends for strength.

Here are some possible ways for you to fill up your alone time, and to support others at the same time.
- Just Want to Talk - You will find discussions where you can enjoy a brief escape from medical talk. What are some of your interests: Recipes? Journaling? Sharing a laugh? Pets? The list is endless, so I invite you to scroll thru these discussions and read and join in anywhere. If you want to direct a question or a comment, you should add their @name just like I used @kimestes at the beginning of this reply. You are not alone.
https://connect.mayoclinic.org/group/other/
You are always welcome and we are here everyday all day 24/7.
https://connect.mayoclinic.org/page/about-connect/newsfeed-post/open-for-the-holidays-and-welcoming-2021/
Covid is 'getting to all of us' and if your depression and anxiety are becoming an issue, please talk with your transplant team.

digibson | @digibson | Dec 28, 2020

In reply to @contentandwell "@johnshaw Great question, I am interested in the answer also. My MELD never went down at..." + (show)

I am curious of the same thing. I started with a meld score of 8 and went to 10 after diagnosed with two small carcinomas on my liver. I had those treated with Y90 radiation and they continue to shrink. Now I'm back at 8 and wondering if its because my cirrhosis is healing? Additionally I was diagnosed with HEP C which along with what little I drank caused the cirrhosis. The HEP C was treated and has gone away. I at least hope further liver damage has ceased.

Rosemary, Volunteer Mentor | @rosemarya | Dec 29, 2020

In reply to @digibson "I am curious of the same thing. I started with a meld score of 8 and..." + (show)

@digibson, This is such a positive and uplifting post! I hope for continuing positive progress.

I am a patient, and like you, don't fully understand the amazing properties of the liver. And I don't know much about our MELD scores, except that we (and our scores) are all different. I want to share the following article written by Mayo Transplant Staff: The MELD Score: Definitions and Frequently Asked Questions
https://connect.mayoclinic.org/page/transplant/newsfeed-post/the-meld-score-definitions-and-frequently-asked-questions/
How long has it been since you were diagnosed with the carcinomas, and when did you begin the treatment? Is that when you learned about the cirrhosis and HEP C?
Have you been able to ask your transplant doctors about your liver's health?