Hey all!! I realize that my last post ended a little on the dramatic side and a bit of a downer. I wanted to clarify a few things and just let you know how I am doing.
Yes, I was sent home and told that there was not much they could do right now, and that I will probably be re-listed for a new liver within the next few months. They are also not going to do any more "exploring" or invasive procedures on me either. This is not to say I am stopping all medications and being made "comfortable"... (though I did come home with some mighty happy meds. tehehee) I am still being watched, if (and when) my numbers shoot up drastically, I will still be brought in and checked for rejection or infection. It is just that now, if they don't find those things I will be sent home. No more month long stays as they run tests like doctor House.
I wrote that post literally seconds after I found out and had all sorts of things going through my head... First I was thinking that I should cash out my lil 401K and take a family vacation to Hawaii or Bermuda or something, but then realized that wouldn't be very responsible. Jason and I did decide today that we should take a few days together before he has to go back to work. It was after all my 30th birthday last month, teheheee... so we are going to Vegas for a few days at the end of this week. Maybe see the Beatles Love show. Every where else that I wanted to go consists of a lot of walking, and I am really not up for a whole lotta that. In Vegas we can grab a wheel chair if I need one. (I know it is sad) Anyways, I figure unless my labs do just start dropping for no reason (stranger things have happened) I will only become sicker and sicker. We just have no idea how fast it will happen and how long before I get a new liver, so we have got to do things while I still can! But I have decided that I should not be any less excited about getting this one (if it comes to it) then I was about getting the last one. (((Thanks again to my amazing living donor, Nancy!))) I know that sounds weird, but before my transplant last year I was so excited. My mom actually thought that I was in denial because I was so excited. I looked at it as a whole new life. No more sickness, no more tiredness. I was going to be healthy after this!! ...And I was, for about 3 months. I knew it wasn't going to be easy, but it wasn't supposed to be this hard. Slowly I am becoming just as sick as I was before transplant, only more delicate.But instead of thinking of this as just the continuing of a life full of sickness, I need to believe that it just didn't work last time... this next transplant can fix me, and I can live the rest of my life somewhat healthy! Or, maybe my liver now will start working properly all on its own and I jumped this whole thought. Ahh... what the heck, at least I am getting a vacation out of it. teheehee.
Thanks again for all of your support. Big hugs and prayers coming to ya!
1 comment:
Even though I don't know you, it breaks my heart to read your latest posts. I have cirhossis caused by hep C and dread the onslaught of the symptoms you are experiencing. I am currently compensated and awaiting the new hep c medicine telaprevir this summer as my last ditch effort to save what is left of my liver. Your shining spirit comes through in your writing and pictures and I truly hope that your new liver starts working and you do not have to go through more anguish. My thoughts are with you...keep on keepin' on
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