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October 14th, 2015

Wow!!! Who's kid wrote that last post?? I just read it for the first time...let me wipe my tears before I begin.

As most of you know, Steve has been miserable with this awful disease for sometime. As time has gone on his itching has become increasingly unbearable. He literally just wants to crawl out of his skin. When you itch CONSTANTLY there is no rest....even if you are taking sleeping pills. Needless to say, we are a little tired in this house. :)

Steve was suppose to have an ERCP ( a procedure to open up the blockage in the bile ducts) this past Tuesday. Unfortunately on Friday morning he received a call saying that the procedure was being postponed due to a scheduling conflict for one of the teams of doctors and they have rescheduled it for ...NOV 3! You could say that I was slightly upset...if these doctors had to suffer with this constant itching, lack of sleep, lack of desire to eat because it just makes you feel lousy, they would certainly NOT be postponing anything!!!! But, my husband, being him....did not want me to be upset. Because he was looking at the bright side. Stephen was going to be home for fall break and if he was having the procedure that was one less day to hang out with him. One of the many reasons my husband is fabulous!

To continue the roller coaster ride of the day...in the afternoon he received a phone call from his coordinator. She wanted to let him know that his MELD (your end stage liver score) is now at a 25. He had his first transplant at a 17. She continued to go on by saying that since they can continue to request points every month or so for quality of life that "by December 18th his MELD would be a 28 and that he needed to have a bag packed and to be prepared." ...........I once again, need a moment to let that sink in.....So, this is a GOOD thing!!!! We are that much closer to having another transplant. But it is also incredibly scary. Another surgery. The last one was 12 hours. This one will be even longer. He is older, he is sicker, he has lots of scar tissue to get through.. BUT there is certainly one thing that NO ONE can take away from Steve. HE is the MOST strong willed, resilient individual I know! Maybe that is why we like bulldogs so much! :) No matter how sick he is....he gets up and goes to work every day! It may not be all day, but he goes to work and then when he is home, he continues to answer his phone.

Anyway, we just wanted to let you all know where we stand at this point. As we know with the first transplant, things can change quickly. It only took three scheduled dates to get one transplant!!!! :))) So even if this is where we stand today, tomorrow could be a different story. Things can change in an instant!

I think I will let Bailey do most of the posting. She is obviously a lot better than I am! Thanks for your continued concern, support and offers of help! They are greatly appreciated and I am sure will be taken up in the near future. Hugs to all of you! My apologies if there are errors or incomplete sentences. There is only so much time I can give to proof reading as this stinking computer likes to jump around and continue sentences in the middle of earlier sentences!!!!


 

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