Finally!!!!

My hubby Jeff finally got his appointment to get evaluated at USC. Looks like it was a little mess up with updating the right person that his insurance had changed. She felt bad and was embarrassed but then jumped right on it and got it done in one day.

So, off to California next month (June), with his appointment starting on the 23rd. Airfare is booked and we are ready to go.

Lena

Thanks ML,

I ask him how he is feeling. Some days I can tell he really isn't feeling well, other days he seems like he is doing better. But, he tells me every day he feels like sh** But, for now he is only very slowly getting worse, nothing major. The recent changes is now he is on Lasix and Aldactone and he now has varices, but so far no banding needed as they are small.

Thank you! :)

Lena

Hi themiz,

I'm not sure, I will check when we go down there. I'm sure up in the 30s. It's a starting place for us. Once on the list, I will try to get him listed in another region. Yes he did have the TIPS procedure a bit over a year ago. He never had varicies before, so that is a recent thing for him. Just that they are small and not bleeding much ,if at all is what I understand.

Just glad we are finally moving forward 😀

How is everything going with themister?

Lena

Lenamarie,

I searched through your old posts to see if you wrote somewhere about what caused his cirrhosis...couldn't go further than last 10 posts :-( 

So I'm curious if they know as your tag line only says, "non-alcoholic, non-hepatitis cirrhosis" (which I'm guessing you mean non-viral hepatitis).

Glad to hear he's starting evaluations!

Thank you Sandia, it was good news to me too. I appreciate your prayers very much!

Dany, he has no hepatitis, so maybe I phrased that wrong. I guess it would be more accurate to say his is from NAFLD. Thank you so much!

themiz, you know the more I read and learn that more apparent it is that everyone's road to transplant is so different. Some people get sick really quick, for others slow. A different order of events, etc. In August of 2012 he wasn't feeling well and went to the doctor. He had his labs done on a Saturday morning. Within two hours of having those labs done the on-call doctor called and said his white blood cells and platelets were dangerously low. From there he went to a Hematologist looking for cancer, there was none. After cat scans and ultrasounds they found fatty liver and a very enlarged spleen. In December, 2012 he was diagnosed with Stage 4 cirrhosis. February 2013 he had his TIPS done. Not the usual circumstances for TIPS. They said he was kind of an anomaly. But after a few conferences with doctors in our area, that's what they decided to do. He did have some improvement to his lab numbers and did start to feel better after having the TIPS done.

From there edema, HE and ascites. He had his first EGD a couple months ago. So, that's it in a nutshell :) Currently his MELD is 17 and that's the highest it has ever been. His spleen remains huge and platelets and white blood cells really low.

He is good about taking his medication so his HE, ascites & edema is controlled.

Thanks for sharing all that information. I do know that things may have to change and he may need to move closer to the transplant hospital at some point, so we will just have to deal with it. I'm so glad you guys are in a good place right now and the mister is doing well. So, here we wait, love all the waiting :)

Hugs to you!

Lena