Updates!!

Hey friends! We got home from Vegas this last weekend. It was nice and (believe it or not) very relaxing. We also went and saw the Beatles Love show at the Mirage. It was AWESOME! I napped between things, but not as much as I thought I would, and I did not use a wheel chair one time (although at times I probably should have... ouch) We did a lot of walking, Jason even did a little shopping with me. Very nice.
Since I had my labs done the day we left for Vegas, I figured I would be getting a call the next day, and since I didn't, I figured there was nothing to big going on... No news is good news (usually, if you have good docs. hehe) And I was right. I was low on my magnesium, again, but it could wait until we got back she said... Just have some fun!! ..Ok, will do! So Monday, Jason and I drove to USC for my clinic appt. and infusion. And now for some good news! My liver function tests had come down some since I was discharged from the hospital. (This is good, but only if it continues to trend down - If so, it may keep my name off the transplant waiting list for a few more months... or heck, if it keeps going down, I may not need another for years!) But that is jumping the gun a little. --Bigtime.
My numbers do tend to jump around a lot, which drives my poor mom crazy, and is why I don't always post when my numbers are really jumpin'. They redid labs on Monday and the numbers did not go up or down really from last Wednesdays tests. So that's not bad (it ain't really good per say) but it's not bad. It just means more time in limbo.

Now! On to more important news.

April is a BIG month for me. Not only are half of my family's birthdays this month, but Rivers 5th birthday is April 14th. It is so hard to imagine that this little angel is going to be 5 and starting Kindergarten. I want to have a party for him, we haven't really had one since his 1st birthday. I told my docs that my "mini" surgery will have to be done the week before (to have my drain replaced again) and they said ok, so I should be out of the hospital for sure this year. That's big!

Then on April 30th is my big walk for Donate Life... and I haven't even started to prepare... I need to know who is walking so I can see if we can have a bigger team and get more goodies. This is so important to me. I just hope I have the energy to recruit and get the word out. Let me know if you will be in Fullerton the weekend of April 30th. It is a heart-warming event. Live Life then Give Life people. That is what it is all about. I want to form a team again so let me know what you think. Get some more info here: http://www.donatelifeoc.org/buildateam.html

...Just me again.

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!

Another Transplant?

Hey guys n gals. This is probably one of the harder posts I have had to make. I know that some of you have been following my story for a long time, some strangers, some family, and I appreciate every prayer and warm wish from each of you.... unfortunately it looks like there is going to be many more prayers needed (and probably a lot more posts to read from me. hehee) Little Sally is not working as we had all hoped, and the doctors have exhausted all other possible reasons for my continued sickness and rising labs. So unless my numbers miraculously drop, they will be re-listing me for a new liver within the next few months.
The problem with this is that in California MELD scores have to reach about 30 in order to receive a deceased donors liver. --This would be different if everyone signed up to be an organ donor. I have always trusted in Gods plan for me, but I am scared now that His plan is for me to be remembered and to show others the importance of giving life.I pray that this is not the case...
As for now, today they are sending me home. They will leave the bili drain in for now, but most likely will not be doing any more invasive procedures. They will do what they can to keep me comfortable and continue to watch my labs in hopes that they drop on their own, but that is not likely. I love my team at USC and I have faith that they will do whatever possible to keep me going, but it is now completely in Gods hands.

So today when I get home I will give my family a big hug and kiss and make every moment count... which is something we should all do everyday anyways. :)

LFT's on the rise again

These last few years I feel that I have been trudging through quicksand, and am so focused on trying to get out that I am missing my life (well, what I could enjoy of it in between all of this.) I know that my body has gone through a lot, but it has been almost 8 months since my transplant and my body is still hunched over --of course some of it could be habit... I did seem to hang on to my pregnancy "waddle" for a while after River was born. Plus, since July, I have had 3 "mini" surgeries, about 7 biopsies, a stent placement (and removal)... and so on, but still, it just seems like I should be pushing myself to do more. Right now, I am mostly just trying to make it through the day. Between keeping River entertained, cleaning up the house (and I am using "cleaning" very loosely) and managing my daily roller coaster of health, I don't have much time to do much else; and even if I do have a little time to make a phone call or do some crafting, a nap always ends up winning.
Though I cannot do much about it right now... I am back in my adjustable bed, halogen lights above --yes, I am back at USC. Thursday I had my routine blood work (it was supposed to be Wednesday but my car battery was dead when I tried to go - see... that is how little I do... my car never used to sit long enough to drain the battery!) Anywho, I had an inkling that the docs were going to want to admit after reviewing Thursdays labs, not only because of the "kicked in the gut" feeling that  is back -- I usually feel it when my liver is inflamed, but also (I now realize) I have a little extra nausea, a little extra tired and weakness feeling when my liver enzymes rise as well. For example, (not to get to technical) there are a few tests that are always done to check how the liver is doing; 2 of them, one called AST and one called ALT normally range between about 5 and 50. Higher levels of AST & ALT indicate damage or injury to the liver. When I was discharged last week, my counts were just over 400 & 500 (still pretty bad) but today, 600 & 700. NOOO BUENO! Even my bilirubin went up a little... and I was almost half way to a normal level on that one.
So, I am not quite sure what the plan is for me in here this trip. I do know they have me NPO (no food or drink after midnight) so there may be some kind of procedure done in the morning... hopefully just an MRCP or something - I don't feel like doing anything invasive.Either way, hopefully they get me out quick, painless, and without any  new meds to take. heheee. I'll keep you posted.
As far as my life living, I guess I can cut myself some slack until sometime in August... that should be the last of my "mini" monthly surgeries. Hopefully my bile duct will be flowing freely by then, without the extra baggage. teheehee.