Looking for some help/advice for my mom. Cirrhosis and MELD related.

[aa86]

I was hoping to get some advice from anyone here with experiences dealing with cirrhosis and MELD scores...

My mom has been battling with cirrhosis (liver cancer) since July 2014. She has had 2 Radio Frequency Ablation operations done (once in 2014 and another in 2020). Her latest MRI and lab results show that even though the cancer is not there anymore, her liver is failing her. She has been getting fatigued way more now, developed ascites, and her feet are more swollen than before... Her MELD score is currently 30...

We received one call for a transplant earlier in November 2021, rushed to the hospital, but unfortunately it wasn't a healthy liver so they didn't go through with the transplant. I am praying we get a call ASAP, because her situation is not getting better and I would appreciate advice from anyone who has any thoughts as to what we can do to help her further. We have an appointment with her liver specialist from UCLA who has been great (we live in Los Angeles) to go over the latest lab results...

Here are her latest lab results:

- Bilirubin: 5.9 (High)
- Albumin: 2.3 (Low)
- Alkaline Phosphatase: 261 (High)
- Aspartate Aminotransferase: 92 (High)
- Sodium: 133 (slightly low)
- Creatinine: 0.86 (seems normal compared to the rest)


I know the MELD score is not something we can really control, but I've been hearing stories about people who received a transplant in about 2-3 years of diagnosis. My mom has been dealing with this for almost 8 years now. She just developed ascites last month and I can tell she is getting more and more tired each day... I am helping her with her diet due to the ascites (some fruits and vegetables, low carb, almost no sodium, and some well cooked chicken/salmon with home made salads. I have also been going on daily slow walks with her (1-2 miles) to better prepare her since liver transplants are quite the stress test on one's body.

It's also worth noting that they put her on a temporary hold on the transplant list in early December due to an increased heart rate (AFIB), but she has started taking medication for that and her heart has been consistently stable now. She was put back on the list 3 days ago. Nothing in my life has been more urgent and important than to make sure she gets a proper liver transplant as soon as possible. Any advice would be greatly appreciated.

[flyinlynn]

Unfortunately there aren’t many people here anymore to answer your questions.

I have heard that the transplant centers in the California region has the highest average MELD scores at transplant due to demand and availability in that region with most transplants happening with MELD scores in the 30’s

Is it a possibility  for her to be registered in another region with lower average MELD scores at transplant? That would require her to be able to travel further and on very short notice but it has been done before.

I wish I could be of more help but I am sending you and you mom my best wishes.

[aa86]

Thank you for the kind words and suggestion. Traveling to another state is not something we have considered...but it is something I might want to bring up to her liver specialist tomorrow during our visit. Her current MELD is 30 right now, but given her recent test results with her bilirubin being much higher (5.9 now compared to 4.1 three months ago), her developing ascites just a couple weeks back, and her being a lot more fatigued/tired... I would assume those factors should increase her overall MELD.  

[flyinlynn]

The MELD score is a composite score calculated based on a few test results.

The MELD score is based on Bilirubin, Sodium, INR, and Serum Creatinine blood tests only.

Extra points called exception points can be added for patients with liver cancer

Here is a link to a MELD score calculator

https://optn.transplant.hrsa.gov/data/allocation-calculators/meld-calculator/