Waiting to … wait?
05/29/2025I am not an organ recipient … at least for now. But I am closer than most people would ever want to get.
In 2022, my liver health took a turn with a stomach bleed that caused damage to my liver and kidneys. It resulted in a cirrhosis diagnosis. My liver faced long-term damage from permanent scarring, and my doctors asked me to prepare to be listed on the national organ waiting list in case a transplant became necessary.
Qualifying for the national organ waiting list required a significant commitment: three months of intensive sessions, three days a week for three hours.
These sessions were vital, encompassing therapy, sharing experiences, managing triggers and weekly urine tests. Nutritional counseling and dietary guidance were crucial and emphasized the importance of low-sodium and high-protein diets because certain foods could interfere with testing.
Being considered for a liver transplant with cirrhosis involves an evaluation at a transplant center—where I still have check-ups twice a year. This comprehensive assessment looks at liver health and general well-being to make sure I’m free from alcohol use.
The next step involves your Model for End-Stage Liver Disease (MELD) score, which plays a critical role in determining transplant priority. This score determines a person’s transplant priority, with a range from 6 to 40. A higher score signifies a greater urgency for transplantation. Typically, a MELD score below 10 suggests stable liver function.
Living with the awareness of my MELD score, which was 12 as of December 2024, hanging over me is incredibly taxing, as it can change for better or worse. It’s more than just watching what I eat or getting enough exercise; it’s this persistent anxiety that every decision could impact my chances. The worry about sodium, protein, and the shadow of the tests is always there. It’s a stark reality that before you can even hope for a transplant, there’s this crucial step of ruling out cancer. It’s another significant emotional weight to carry.
WHAT’S NEXT?
Once eligible, a transplant center can add you to the national organ waiting list administered by United Network for Organ Sharing (UNOS). Your transplant team will continue to monitor your MELD score. The wait for a donated liver can range from less than a month to over five years and often leaves people waiting on edge. The availability of a suitable donor triggers a careful matching process considering your MELD score, blood type and other lab testing, body size and the distance from the donor to the transplant center of the best matching potential recipients.
The wait can end on short notice with just a phone call. You might need to be ready to go within an hour, otherwise, the opportunity passes to the next person on the list. And once you get your transplant surgery, it is not the end.
Navigating the financial and emotional aspects of transplantation can be challenging. Transplant centers often provide vital financial and social support services to help patients through this process. Additionally, a standard part of the evaluation, which might surprise some, is a dental check-up.
A PATHWAY TO SOBRIETY
For those whose transplant is due to alcohol-related liver disease, lifelong sobriety is not negotiable. There are no second chances; continued alcohol consumption would disqualify you from future transplant if you were to need the transplant surgery.
I’m grateful that my MELD score hasn’t required me to need a transplant, and my health is steadily improving with daily medications. Like many others, I dealt with brain fog, dizziness and fatigue which have lessened, although balance can still be an occasional issue.
My current lifestyle prioritizes regular exercise, careful attention to sodium and protein intake, ample hydration, good sleeping habits and frequent guided meditation to relax and unwind. It’s been 947 days since I last had alcohol, a choice I made without experiencing withdrawal or a desire to drink.
Willing to give what I might have needed to receive, being a registered organ donor is something I truly value and have been committed to for a long time. I’ve met people who’ve been donors and recipients and I’m very grateful for both. If I ever have a chance to donate I would and if somewhere on my journey if I need an organ I hope someone will donate to me.