Our first blog update comes today from Mom’s team at Mt.Sinai. We got a call this afternoon that her MELD score has increased which is great. A MELD (Model for End-Stage Liver Disease) is essentially a number doctors use to rate how sick you are and how badly you need a transplant. The score ranges from 6 to 40. 40 being on the side of you’re pretty much dead. Aunt Michele was in the very high side of the MELD, which led to an immediate transplant (thank ya jeebus). In the past mom’s MELD has only reached a 21, her most recent labs in the hospital put her at a 16.

Today Josan, her transplant coordinator called me to let me know her appeal was approved and her MELD has increased to 28-29. This is awesome news but it does mean she is increasingly getting sicker. The weekly thoracenteses (lung taps) put her at a huge risk of infection. Currently each thora fluid removal is increasing and we are at 2.2L of fluid a week. For those unaware, these taps remove all of the good things in your body too; all your electrolytes get sucked right out of you. This is nothing that Gabapentin fixes either. It takes almost 24 hours for her lung to re-inflate with air fully but because of her fluid retention her lung is already filling with fluid again and it takes less than 36 hours to get that fluid back fully.

This isn’t to make you upset by any means, it’s just a glimpse into what our past couple months have been like. Mom puts on a solid rockstar face and pushes through each poke and prod like a champ. The last thing she wants is for her friends or loved ones to see her hurting. Everyday we remind her this situation is temporary, we go into the city tomorrow to see her transplant team. I will update after.

Our phones are on at all times, fully on ring, and we are patiently (right) waiting for the call. We are hoping sometime in the next couple weeks will finally be our turn!

Below I posted some pics of a thoracentisis in case you were curious but can’t spell!

TA-TA for now!

xoxo

nell