So much to be thankful for!!

Whoa! Another holiday just zoomed on by. We were able to make it up north to visit the families! Things are still wearing me out pretty quickly, food and I are still in a bit of a love/hate relationship, and don't even get me started on my tubes... BUT, besides all of that, I am doing a lot better (whoo hoo, ya, read that again - that there's some good news finally!!) After my last post, I had dropped down some more in weight (down a little under 90lbs for a bit) got a little sicker, a little yellower; but then slowly, I started feeling a little better. I believe (for me - I am definitely not recommending this) that it was because I had started to taper off my meds myself. I felt that the docs were lagging in doing this for me, which I expressed to them when I was still in the hospital. Now, I felt somewhat confident in doing this because I basically followed what I had just done the year before. Within the week I was feeling a little better, and by the time my next appointment came I had gained 2 pounds, was less yellow, and had more energy... but it was confirmed that clinic Friday when I got my lab results and my LFT's had dropped by about half!! My Bilirubin was at 5. --That is almost at a normal level. (Bilirubin is a HUGE indicator on how your liver is working. And raised levels of it will make ya miserable.. Itching, nauseous, yellow) My doctor was so excited that he called me himself (he doesn't usually do that) and told me that he had tears in his eyes, he was so happy. heheee.
Now, it was only my first good report - I don't want to get to excited, jump the gun... buuuuuuuuut, I am feeling better, I hardly see any yellow tint to my eyes, I am back up to 96 pounds (Thanks to the Albertoni family over the Thanksgiving holiday) I only threw up one time this week, and I have much more energy then I have had in so long! My next clinic appointment isn't scheduled until December 9th, but I am going to have to call them.... ummm, maybe tomorrow, because I "accidentally" pulled out my jejunostomy tube... the other day. (I haven't used it in weeks) Yes, I know it heals within a matter of days, but I am hoping that the docs will agree with me that I don't need these tubes any more (and not being able to just stick another tube back in the same hole might help convince them, teheheee). They are causing more pain then anything. Only after I pulled out the feeding tube was I finally able to stand up straight for the first time in a week or so. It was already out of place and leaking a lot.(excuses, excuses) My G tube is still hurting and leaking even more then the J tube was, so hopefully when I go in they will just pull that one out too. We were planning on taking them out by the first of the year anyway -- as long as everything is still going good, and I'm feeling pretty positive about it, so lets just think positive and take 'em out! (Besides it wasn't in a good permanent spot anyway, which was why all the stitches kept coming out) But I won't need it replaced anyway. :)
I just can't believe that just last month I was feeling like I was pretty sure I only had a year -maybe two, and now I'm thinking who knows... I could have 10 or 20 years -maybe even 30 years with this new liver. I have hope again!

My first months home

River and Noah (AKA Jason)

Hey everyone!! I hope you all had a safe and fun Halloween. I am happy to report that it is the first holiday or event in a loooooong time that I was OUT of the hospital, but not only was I out of the hospital... I felt good enough to actually participate in the fun stuff!! I went trick-or-treating with the family (without my wheelchair) and was not the one who said "lets turn around now" first -- it was River. But I will admit that it probably wouldn't have been much longer before I started asking for piggy back rides, luckily I had taped my tubes down pretty good because even they were starting to weigh me down... ok, now I'm being dramatic. I did good considering I can count on one hand how many "outings" I've had since I've been out of the hospital. tehehee. Anyways, speaking of one of those outings, we took River to a haunted house a few days ago (HORRIBLE PARENTS, I know, so I'll skip over this story real quick - but he said he wanted to go, and he actually did really good. The only thing that got him was the chainsaw guy at the very end, and that was just because of the noise.) AND, I was able to make cupcakes for Rivers class  -- whoo hoo! Normal stuff, normal moms can do!

So, I know you are wondering how it's goin'? What's goin' on with me (besides having a good Halloween week) The last time I wrote I was still in the hospital (opps, sorry 'bout that) But let me tell you why, really. I did end up going home soon after that post (September 8th to be exact - 50 days - dude... not fun!) That small surgery to take out the hematoma healed pretty fast, (but I do notice that there is a lot of scar tissue on that side, of course it was the 3rd time they cut in that same spot in 2 years -- but still, if anyone knows of a way to soften that up, let me know, because all I can say to that right now is... ewe. and it hurts too.) I digress. So, it healed fast, however, it did not stop the puking or help the nausea as we had hoped. By that time I didn't care. I told the doctors that I had to go home. I was going crazy in there and with River starting school, some things weren't being done as I really wanted and I was beginning to have a lot of bad panic attacks. You know, I am so grateful for everything that anyone does for me and my family. I am especially blessed to have my mom take care of River when I am in the hospital. I have said many times that I would not have been able to stay in the hospital so much these last 3 years if I didn't have her because I wouldn't be comfortable leaving him with a stranger. I'd be so stressed, I'd never get better... but even so, there are things that we do differently, some views on child raising are different, and of course there are the things that every single parent says they will not do like their parents... but I had to sit back and bite my tongue (on most things) because there is not much you can say when they are selflessly taking care of your most prized possession. Either way, I had to go.

This was a bit of a problem for the doctors because my numbers were still jumping around and my bilirubin was in the teens again. After all of the tests they had done, they weren't one step closer to finding out why my numbers were so high or how they were going to fix it... and that was the case I argued to win my freedom. They could observe me in my natural habitat just the same. hehehee. So on the 8th I headed home still puking, itching, jaundiced, weak, and extremely tired -- but happily with 2 bags less (and a new liver, of course) then when I went in. (I still have my feeding and venting tubes) So here is why I haven't really been up to getting on to update everyone. The last biopsy that I had just before I left the hospital came back a few days after I got home. My new liver is showing slight cell changes already. They can't tell me for sure but it looks like the same as with my last liver. The last time the slight cell changes turned into fibrosis and then cirrhosis within the year. Again, they don't know... is the Hep C starting to show itself (which this time the docs are saying "probably not") or does my body just not take to foreign organs well. Last time the hope was, maybe this just isn't "The one". The doctors said it happens sometimes, and then the patient gets another liver and BAM they are out living it up after... but this time, the doctor said that there are just some patients that won't accept any liver.
This should be one of the warnings in their little books on why you should wait as long as possible before getting a transplant, along with how much responsibility it is with the meds and appointments, that it is life changing, that you may experience rejection.... oh, and your body might just not want another persons organ. So what do we do? Well, we wait it out. Prepare for the worst, pray for the best, and let it go. I have doctors appointments once a week or at least labs drawn. I take my morning cocktail of meds, check my blood pressure, blood sugar, temperature, and weight (my main goal right now is to gain weight - I am at 95 pounds right now. Gulp - I haven't been that thin since I was like 10) Some days I can get up and help River get ready for school, but Jason doesn't skip a beat on the days I'm not up to it. Some days I get up and clean and have even gone with my mom a few times to pick River up from the bus stop. These last few weeks I have felt the best I have in a looong while and haven't even been throwing up as much. That sounds so sad. Anyways, the first few weeks after hearing the results of that biopsy were hard... After everything I went through and this liver is already causing concern. And it is not like they are going to keep giving me new livers every year (Not that I would keep taking them, with all the people out there who are still waiting for their first liver.)  With my last transplant I at least had 3 months of great health - food was my friend again... but this time I still puked after the surgery, so is this the best I'm going to feel before I start going down hill again? Am I already going down hill? How long is this liver going to last? Would they even give me another liver if we know it is just going to fail? Is there anything that can be done to stop this? To many scary questions!!! And that's why all I can do is pray about it and let it go, otherwise everyday would be unbearable. I also had to switch my thinking -- I had started to feel like there was no point in getting up in the morning... I might not be here in a year, River won't even remember me. But that is ass-backwards, I might NOT be here in a year, so I better get up in the morning! Get going on those days that I feel good enough to! So that is it. Again, I am sorry that I have been a hermit, I am just sick of giving bad news. I really am feeling a little better though, less itchy, and I am eating on a regular basis now. Good things! Speaking of good things. I want to give a big THANKS to everyone who is helping put together the benefit for this Saturday to help us with my medical bills. It looks like it is going to be an amazing and fun night for everyone who will be there!! If you're in Monterey this weekend get out there and join my family and friends -- there are still tickets left.