I've got the FEVER... Cabin fever that is.

Wow, mentally I feel like I have been out of the hospital for months... though, my physical "feelings" reminds me that it has only been about 3 weeks since my transplant. Still no driving, no lifting my son, bending over is still quite painful, and with all these bruises, I look like a serious domestic violence case. Actually, the last time I was getting my Magnesium infusion one of the nurses asked me if I was in a violent relationship... I said "Yes, but only with you nurses" heheheee.
Since this is my 6th surgery, I thought for sure I would be used to it, but I guess it is something you never really get used to - being dependent on others... I can't even open my windows, well... I'm not supposed to, but you try living in Southern California in summer and your husband forgets to open the windows before he leaves for his 12 hour day.
Speaking of my husband... Please pray for him. He is running around so much, he looks like a chicken with his head cut off. Being that he is "free-lance" if he doesn't work, he doesn't get paid and probably would be let go real fast, but since he is the only one bringing in any real income... he has to work, which means that pretty much a few days after my surgery, River and I were pawned off on my poor mom. Which isn't so bad, for the two of us at least, except sometimes I feel like a kid again... and there is a reason kids leave home at 18. hehehee. I will be happy when I can stand on my own two feet again! ...I think Jason has lost weight, we aren't eating properly, and no offense to my husband, because the fact that he has started cooking dinner for us in the first place is VERY impressive, but I am getting a little tired of broiled chicken, green beans, and white rice (sometimes he broils fish instead - same seasoning so it starts to all just taste like Ficken) heheee, it's actually very good, but we have it 3 to 4 times a week, soooo ya! I have started cooking a few side dishes this week... Spanish Rice, Gnocci's (Ok, I used the Gnocci's Jason's Grandma made and sent up, but I made the sauce) and I think by next week, I'll be able to cook a full meal without sitting down or taking a pain pill (which don't really work anyways - stupid glorified Tylenol) Not this week though. My ribs are one of the main things that bothers me. (In order to put Sally in, they had to separate and hold my ribs apart) ...Bra's are really tricky right now - I know, TMI Ricki, TMI!! Back to Jason, He also has to do all the grocery shopping, cleaning the kitty litter box (forever now, since I cannot be near animal feces with my new liver... awe, darn!) and, he has to deal with ME on STEROIDS, can you say ROID-RAGE. I am on an emotional roller coaster, and not used to being this tightly wound. One little thing can get my blood boiling, but hopefully my doses will be lowered soon. This will help the balding too, yup... one more side effect from anti-rejection meds. I swear, luckily I am not vein, and happen to be a fan of Sinead O'Connor, tehehee, but again... My poor husband.
Sometimes bad thoughts come into my head. I wonder if I made the right choice, or was I selfish and cheated my death? Was this Gods plan, or did I force the hand? Am I really someone who deserved this gift when so many others are still suffering and dying? Is my Hep C going to come back with a vengeance to rectify my fate?

Don't worry, these thoughts ARE normal! They disappear just as quickly as they came, and honestly, I do believe that it is mostly due to the medicine and cabin fever... maybe a little bit of fear too, the devil tries to get in there, but I am confident - and MOST of the time, I am just plain happy to be alive and not puking! :) OH, and here is a little article (one of many) just to prove I'm normal.
http://www.hepatitis.va.gov/vahep?page=trans-03-02 I will admit that for me, it is all about keeping my mind busy, which isn't to hard with a wild 4 year old running circles around me and asking questions about everything under the sun. Staying connected to the outside world helps too, even if it is just by writing or facebook and twitter, although sometimes I do have to force myself to do these things too. Hopefully soon I will be right as rain, and can focus on what I really want to do, a program to help transplant patients, mentally and financially. Don't laugh, I think it helps that I in fact need help... with BOTH of these things. hahaha. I do have knowledge to share though... This ain't my first rodeo!
Whoooooooooo hoooooooooo! LIFE, live it then give it!!

Weren't you just here?!?

Sometimes you wanna go where everybody knows your name... Unfortunately for me, that would be the hospital. tehehee. The statistics are high for returning into the hospital after transplant, (20 - 70% of patients experience rejection, not to mention the risk of infection due to the anti-rejection meds and the possibility of bile leaks. I am actually doing pretty dang good so far, if I do say so myself. However, I still get my fair share of the hospital. I have "clinic" every Monday, and up until today, I had to (well Jason or Lee had to) make the drive to USC so I could have labs done on Thursdays too -- always resulting in me needing more magnesium. Not to mention the extra trip we made last weekend when I noticed some redness and oozing at my incision site, which in combination with a high white blood cell count (meaning possible infection) caused them to admit me for another night... of course, some more Magnesium and -- more tacos! The culprit of my magnesium continuously dropping below normal is the Prograf - one of the three anti-rejection medications I take. I start to notice I am pooped out, shakey and weak. The IV infusions do the trick, but only seem to last about 2 days and then I start to fade back into that ol' familiar feeling again...Which I was feeling early this morning, pre appointment.
I went in and got my normal hugs and hello's at the lab and then the tx clinic, but again I was sentenced to 2-4  hours of being tethered down to my pal flo. (yes, that's my I.V. machines name.) So I am also becoming known at the "Evaluation clinic", which is where I've been going twice a week to get my magnesium... they even ordered me lunch today  -- more tacos :) I also met a nurse who was at the Donate Life walk in May (Which is pretty impressive for her to remember... I still can't do that without my H.E.) but I digress... The real news is, I got my staples out today!! I am now foreign object freeeeeeee, well except for my new healthy liver, but I don't really consider Sally foreign anyways. They also lowered my Prednisone, which is another of my anti-rejection medication that is also a steroid, and YES, it gives me ROID-RAGE, so my family is happier today too! Yup, things are definitely looking up and after my infusions I feel better and more awake then I have in almost 10 years! Ahhh, to be what the lucky ones call "normal"!!

Home and Happy! 1st post - post transplant.

Me and my Live Liver Donor Nancy. Discharged together!

Well, honestly... All of the doctors (and my medical past) had us all thinking that I was going to have a lot of time recouping in the hospital... time to get all creative with my first posts after transplant!!! (Not that I am complaining. tehehehe) Instead, so far, I have been the quickest in USC history to return home after transplant... 7 days exactly, and both Nancy and I were doing to good to stay in the hospital, and we were ready to go home and cuddle with our families!
I have so many amazing stories to share with you guys... I get all giddy just thinking about some of them, amazing!! Most important and even harder for me to believe are the changes my body feels with a healthy liver (Half a liver, even) The day of my surgery I threw up all morning (delaying our surgery start time by about an hour) and I haven't vomitted since.... Not one time. --If you are just tuning in.... this is HUGE! but it doesn't stop there... even the nausea is gone. I wake up with no pain OR nausea! (well besides the 40 staples across my belly... yes, River HAD to count them, he says it looks like a necklace - Great... looks like I might have a hard-core piercer on my hands later on down the road.) hehe... Anyways, besides that, I also have MENTAL CLEARITY and ENERGY, no more bloody noses, no more ascites build-up, no more walking in circles! ....Did I mention the nausea yet. Makes me teary-eyed just thinking about it! Not only did Nancy give me a part of her liver, she gave me HOPE. Hope and actual anticipation (instead of the looming dread) of what is to come!!

Four little words

As the months turn into weeks, and the weeks into days, my 4 year old seems to really sense the change in the mood of all of us as we wait for my transplant. He has even asked after I come home from these last few doctors appointments if I "got my new engine yet?" Which kind of breaks my heart a little when I say no, and actually see that little glimmer of hope disappear, "but soon" I say, and he will smile again and run off like nothing ever happened. He says he will be happy when I can run and play with him... I agree, but I will be happy when the balance in our home returns and I become the true "Alpha" in the house again. hehee.
My son, as angelic as he is, can be quite the stinker! The only thing that I can (lovingly) compare him to is my cat Kaya. My cat HATES water and will go crazy trying to get away from a bath if he sees the opportunity. However, as long as I am quick, focused, calm, and keep one hand firmly planted on him at all times, he will sit patiently and take it -- and I will have no claw marks up my arm and down my back. River in his own way, waits for the same... He senses the weakness, slow and unfocused mom and the kid pounces. He knows that I can't catch him... and if I do, plan B is hunker down, because if I do catch him, there is usually no way that I am going to pick him up. --Although, he can get my adrenalin going and then is shocked at my cat like reflexes. teheheee. And THAT is when the 4 little words come in! The over dramatic "YOU DON'T LOVE ME"...Now, I know that it is normal, but the kid has no idea WHY it hits me as hard as it does right now. All he knows is that I was never a sucker for those tactics, and all of the sudden now -- I am.... and that's good news for a 4 year old.

So while I am a little worried about the (hopefully) little 2 weeks away from him and Jason... Part of me smiles a bit. This may be a little like boot camp for my stinker. Mentally I have always expected a lot from River, he really is a bright kid, but these last few months I have really slipped into a babying mode. Sometimes he even humors me and will let me (as he says) treat him like a baby and cuddle with me, but these last few weeks especially he has been taking it a little to far... and as you see below, Daddy don't play that. In my defense... A few years ago I wouldn't have thought this was so funny but now, there is a part of me that just laughs and another part of me that thinks to myself... it kind of looks like fun to play in your mashed potatoes, live life little one, DIG IN!!... Of course I try to only show the "this is totally unacceptable" mom face (as I take the picture) though I'm quite sure that he has picked up on the fact that when I turn my face and cover it, I am hiding a laugh.

It was tough (at first) to let Jason step in and start handling situations like this... and quite frankly I think he enjoyed it a bit much, but maybe... just maybe, River will be so happy when I come out of the hospital, that he will appreciate the "softer" side of mom and not abuse it so. teheheheee. Otherwise, it looks like a lot more of this...

...muwahahaha