Well well...guess I made it to one year and six days =) Purty darn exciting if I do say so myself. Of course I know I should keep up with this blog more, since Prograf robs me of my memory, but I don't and so I'll update you with the most recent events of my 'interesting' life.
About 10 weeks ago, we found out a great and very close couple was pregnant. Jon and I were elated-their amazing people and couldn't deserve it more. Then, Tuesday we lost a fellow family friend at a young age, 19. He passed doing what he loved, but that doesn't ease the pain. We went to his funeral this past Saturday-and saw how amazingly loved he was by everyone he's ever met. Then Monday, I began my journey for my 'annual' testing. Boy, oh, boy! It was basically my evaluation all over again-just this time I'm able to leave the O2 at home =) It was a lot easier. We had 3 days of testing..and the first day I needed to get 2L of saline since my kidney function was crapo (2.9, when 1.0 is normal). I was completely prepared to bloat up after that, but I didn't-which means I must've been severly dehydrated. Drinking 3L of fluid a day still isn't enough, and its incredibly hard to drink more than that too. So I found out about the kids, then on Wednesday I got the news from my gastric emptying study that my gastroparesis is still there..My bowels don't move like they should..So again, I was basically told I'm full of sh*t. LOL...really? I think I knew this...So I'm starting Reglan. I was able to come down on my Valcyte (partly the reason my kidneys are bad and I'm backed up) and I came down on Prograf too. CMV was there on my 3rd run of labs, but not the 1st two. This time reading a low 750 instead of 25000..so that was good (even though I thought the little booger was gone!).
So through all this testing, I learn my parents are ready to put Mojo to sleep. My lifelong dog of 16 years. He's in horrible shape, but so happy when he hears the voice or smells someone he loves. That's what makes it really hard. I had to have my Dad reassure me he wouldn't do it until we got back from Tampa and I was able to say one more goodbye. The idea is more than hard to bare, especially since he's far away and I can't be there to comfort him. I love that dog-truly an amazing character.He's one family member who loves ya even when your puking =)(really can't talk about Moe without crying too much so I'm skipping the subject)
When I returned from Tampa I was beat. I fell asleep sitting up several times, passed out on the gastric emptying table, and slept whenever there was a dull mintue. So yesterday was my first time with my husband and we got to see our good friends in Ocala. Unfortunately though, we found out they lost the baby.The news hit me hard. Yes, I know this baby wasn't mine, nor am I a blood relative-but I was truly happy for them, and it gave me a good feeling about life.
I couldn't help but be mad. G-d seemed to be making stupid decisions lately. He took C way too early, and he took this baby too early. And damnit if he hadn't made Moe ill and uncomfortable. Why is picking these INNOCENT people to take, meanwhile I'm here. I should have been dead for about 6 months now. Why am I being left here? I wish He could just drop some sign on me and say "Ashley, this is what you are here for, now get to it".
In the mist of all this survivor's guilt, I thought about my donor's family. How would they feel if their daughter's reciepent was bitching about being 'left behind'. It'd piss them off. I respect my donor too much to give in because I'm not open enough to hear what G-d is saying to me. So my next journey is to find out why. Why He chose to give me 2 lives, and some people one, and some none. Something great is destined to come of all this-so I need to get to work. Sorry for rambling, but the guilt has been piling up for about 2 weeks now and I felt it was time to show that post-transplant is not all 'unicorns and glitter', but we do feel 'down' every now and again-and I'm learning that that's okay, as long as I get back up.
Saturday, June 25, 2011
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