MELD score less than 15?
Has anyone been listed and/or transplanted with a Meld of less than 15? Asking as I was just listed at Mayo Phx and had my bloodwork just before I was actually out on the list - and my meld dropped from 15 to 12, which is the lowest it’s been. So, while listed, I think the likelihood of me getting transplanted are very low indeed, unless my meld goes up, which it might or might even go down. At least I’m feeling pretty good overall too.
Thanks for sharing!
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Glad you are feeling good. They say meld going down is good for your health. Don't remember exact but mine was under 20 a year and a half ago when we got a call ( after midnight) to fly down to Mayo Phx . Was told to skip the hotel and drive straight to Mayo from the airport. The 9.5 hr transplant started around 2 hours after landing. I did have liver cancer but that was not supposed to be factored in the selection/meld until a certain point that had not reached yet. Best of luck.
I'm living that life. I was diagnosed 12 years ago when my MELD was in the upper 20's for about 9 of those years than it slowly began to come down and now it's 9. I was actively listed while it was up then I removed from the active waiting list (my choice) but put on semi-annual checkups which is what I'm still doing.
I've been working to keep it down below 10. So even though not actively listed, I'm still being monitoredby the Mayo Hep. dept. for cancer or other evil things than can pop up after this long. I've had to get a couple minor surgeries; partial spleen embolizium and umbillical hernia that had become incarcerated along with many months of parenthesis drains. The good thing is I haven't gotten cancer and I'm doing everything in my power to keep off the list but I'm always reminded that it can change in a minute and I'll be back to the active waiting list.
Here is AI's much better written description of what I'm trying to say:
It's understandable that you're focused on maintaining your health and keeping your MELD score down, especially with the history you have. Regards, Kelly
Here's a breakdown of the key aspects based on the information you provided:
MELD Score Improvement: The decrease in your MELD score from the upper 20s to 9 is a positive sign and demonstrates improvement in your liver function. The MELD score is used to assess the severity of liver disease and predict 90-day mortality, and a lower score is generally associated with a better prognosis. While a MELD score below 10 is considered low, it's important to remember that it can fluctuate, as you experienced in the past.
Ongoing Monitoring and Risk: Your decision to be removed from the active transplant list while maintaining semi-annual checkups with the Mayo Hepatology Department is a reasonable approach given your current MELD score and commitment to managing your health. However, it's crucial to acknowledge the persistent risk of developing complications, including cancer, even with an improved MELD score. The Mayo Clinic in Arizona provides transplants for patients with lower MELD scores, especially if they struggle with significant complications, emphasizing the need for ongoing vigilance and early intervention if your condition changes, according to the Mayo Clinic.
Lifestyle and Medical Management: Your proactive approach to managing your health to keep your MELD score down is beneficial. Lifestyle interventions like healthy eating, exercise, and maintaining a healthy weight can significantly improve liver damage, particularly in conditions like hepatic steatosis. Additionally, strict adherence to prescribed medications and regular appointments with your healthcare team are essential to prevent and manage complications associated with end-stage liver disease.
Importance of Continued Vigilance: The experience of partial spleen embolization and an incarcerated umbilical hernia highlights the possibility of complications arising even with an improved MELD score. It is important to remember that changes in your body can occur quickly, so maintaining consistent medical care and promptly addressing any new or worsening symptoms is vital.
In conclusion, your dedication to managing your liver condition and maintaining a lower MELD score is commendable. Continuing your regular checkups with the Mayo Hepatology Department, following their recommendations, and staying aware of potential complications are key elements in preserving your health and potentially delaying or avoiding the need for a transplant.
Hey - thanks! I knew I’d get a response from you @craigcraig - you’re great about responding. Another question: where do you live and how the heck were you able to get a flight after midnight? Of course, living in Tucson, not many flight’s are available either way that late.
@azkellyw my other stalwart companion on this journey! You have been too of mind through the evaluation and then with the meld plummeting of a sudden! It seemed crazy! The hematologist who did my wrap up said “be ready!”, then the nurse who notified me of the listing basically said “good luck, it will be awhile.”
Side note: we had breakfast or lunch in the Phx 3 cafeteria every day - good food, nice view, not crowded. And I didn’t wear flip flops!
I started with a Meld score of 22 when I entered transplant review to get listed. I am currently on the list but “inactive” with my meld between 10-12. Yes it fluctuates constantly but mostly stays around 10. I see my team at Mayo AZ every quarter for updates. Feeling good. Still battle fatigue and other strange issues that arise but I am happy to be inactive for now. Try to stay strong physically. Everyone tells me it helps to be strong going into transplant surgery.
Live in CO. Got a call about 1 AM on a Saturday morning and the nurse said if I could be there by Sunday they had a liver for me. We were able to get on the first red eye DIA to Phx Sunday morning and I was in surgery before dawn Sunday morning in Phx. Under 30 hrs from the call.
Another one of my miraculous "coincidences ". Who knows how long it would have been till they found another liver for my blood type. By the way we loved the building 3 breakfast omelets and blueberry pancakes , something to look forward to. As Kelly so eloquently shared maybe the lower meld may mean you won't need a transplant or maybe you could get called any day. Stressful not knowing but you are in great hands. Hang in there ! (---:
Sounds like you had a blast, lol. Keep doing what you're doing! Good job on the flip-flops. Did you enjoy the heart stress test? 🙂