I hate the Liver

I have no really good reason today to hate it... I just hate it everyday of my life.

The more yellow John gets and the more it hurts him and the more he suffers from it I just hate it that much more everyday!

It's been a year now since we started this "journey" into Liver Land and it is exhausting! I feel awful now that I look back and think about this last year... I should have noticed the jaundice and ascites... I just didn't see the subtle changes until it was one big cluster and much too late!

Doctor's make you feel guilty for not coming in sooner! All of them always ask us why we never came in sooner! WE HAVE BEEN TRYING!! We fought with doctors for 1 year before we found our team of doctors we have now that are trying to save him! And, the first thing a doctor says to me is "Haven't you noticed the changes in him? Ususally it's the significant other who notices it first!" Oh great buddy that's all I need is more guilt! Thanks a friggin bunch!

John has always had a sense of humor even when it is inappropriate but of course that's why I love him. He makes some of the awful times at the hospital really fun! Which seems kind of awkward to say because people think we should be morbid and depressed and crying all the time. When the doctors (the interns and visiting doctors) come in and ask John why he is there he jokes around and says he is as healthy as a horse! We both start chuckling and the doctor just kind of stands there like he has no idea what to say next which is pretty funny! Some of them understand that he is joking and joke with him (especially all of our friends in the GI and Radiology departments)!

It makes it much more bearable to be in the hospital when you can joke about it! Even though it is sad and we kind of try to forget about the illness I have read somewhere that that can be theraputic! We try to make it aas fun as possible! Sometimes pain and thousands of med names and treatments can be overwhelming and not fun but anytime we find fun we take it and run with it! I have learned that nurses are really funny sometimes and can make it 10,000 times better to be in the hospital when you get a good one! Doctors need to pick up on the sense of humor that is in the hospital!

My dad has been sick all his life too and both he and my mother always ask us how we can stand to be in a hospital all that time and not go crazy and we can't really explain it but it's fun to a certain extent! Might seem crazy... as this whole post might just seem a little bit out there! But really? Why not make it fun? Why not enjoy life while we have it? Maybe there will be a miracle or something and we will have more time but right now... now that we know our time will be cut short we have to enjoy it as much as possible and take every chance we get to make other peoples lives better too!

Thank you to all the people that have touched John and I's life... the doctors, nurses, housekeeping, dietary, nurse aids, friends, family, everyone!! You have changed our life, some for better, some for worse, and some of you have made yourselves part of the family and circle of friends! We will never forget youand everything you have done for us that you didn't have to do! You have all put in man hours that you will never be able to get back and some of you don't even get paid for doing things you do for us! We love you all and if we could find you again and thank you again personally we would!

Much, Much Love
John and Julia