Good Morning!!!

Well it's FINALLY official...Rob made the UNOS transplant list!!! YIPPEE!!!!!!!!!!!!!

Rob had an appointment with Dr. Hoffman yesterday to go over the logistics of everything. Dr. Hoffman says Rob is doing really really well and is extremely proud of how far he's come. When Dr. Hoffman saw him yesterday, he said to us: if someone had told me last spring that you would be sitting here, in my office, looking as amazing as you do, LESS than a year after your first hospitalization, I would have told them they were crazy! If you all remember, he and Dr. Singh (his main doctor when he was in the hospital all three times) had both said to us that we should be prepared for the worst; we didn't think Rob would make it. Now look at him! He's proven to everyone, and most importantly himself, that he was NOT ready to leave ANY of us and that he still has a lot to live for! Thank God For That!!!

Dr. Hoffman has taken him off of his lasix...Rob has zero swelling anywhere so he doesn't need water pills anymore. We're also going to try taking him off of his Xifaxan (the drug he's on treating his hepatic encephalopathy OR brain fog as I'm going to call it as that's a mouthful to keep spelling AND saying...LOL). Rob is also on lactulose (which is a syrup) which he takes twice a day which also helps with the brain fog. Dr. Hoffman seems to think that Rob's doing well enough that he can stop the Xifaxan. We're giving it a trial run. IF any of his brain fog symptoms start to come back, confusion, slowed slurred speech, extreme sleepiness, he goes right back on the Xifaxan. We're both a little nervous about this but Rob's willing to give it a try to get him off more of his medication. If he's successful, then he's really only taking vitamins, an acid reducer, and the lactulose and that's it! If the brain fog does come back, then we know that Rob will be taking the Xifaxan until he gets a new liver.

His final MELD score was a 12...Which is AWESOME because it's SO low...that means he's doing really really well. The bad thing is that puts him at the very bottom of the list for a deceased donor. A MELD score takes several things into account...one of them being your kidney function. Rob's kidney function is back to normal so that lowers his score. We didn't know this. Dr. Hoffman told us that some of his patients have MELD scores that are just as low as Rob's but they aren't going to live longer than a month if they don't get a new liver! It's crazy how it all works. Dr. Hoffman was very upfront with us telling us that even though Rob is definitely doing SO much better, things can change on a dime AND the liver he has now is NOT going to last forever.

 As I think I've said a few times, Dr. Hoffman has told us over and over that a living donor would be the way to go for Rob. If anyone has ever given any thought to living donation OR would want to donate part of their liver to Rob, the phone number for the very first part of the screening process is 1-866-925-3897. For ANYONE that makes the call, even if nothing comes of it, Rob and I thank you from the bottom of our hearts!!!!! It's a very hard, yet courageous decision to make, one that's not made lightly we know....Thank You!

That's all I have for now. Until a living donor can be found, or by some miracle he gets one off of the UNOS list, things will be quiet until then...as long as he stays healthy....which isn't a bad thing since last year was such a mess! LOL We're both looking forward to some quiet!!

Everyone please continue to stay safe and healthy!! Take Care :)