Friday, December 30, 2011

2012 Here I come...

WOW! Happy New Year everyone!! 2011 was a tough year, but we finally made it through, and with some great memories too.
It was a big year for River! He turned 5 years old, lost his first 2 teeth, started kindergarten, and discovered Youtube.

In April, we did our second annual Donate Life walk (Yaeh, go Team Larry) Did you know that 1 life can save 8 others and help hundreds more? You did! Well, did you know that I can count on one hand the only reasons someone couldn't donate their organs (and religion or cancer ain't one of them)... you knew that one too huh. Well then I guess you probably already know that April is Organ Donation awareness month and we will be doing the Donate Life walk again this year, and would LOVE for you to join us!! (Now back to last year)

 We had our family camping trip in July (ok not really camping - we stay in a hotel) Here is a good time for me to add some good advise... always take extra's of any appendages you have. Not only did I bust my second bile bag while gone, (the first bile bag mishap happened at the Donate Life walk) but I also forgot the charger to my feeding pump. (every hour I had to manually push my necessary cc's of formula with one of those cartoonishly large syringes - and let me say, I got more awkward stares then a woman breastfeeding in public does, and you didn't even see anything on me) Anywho, it was a great trip and we really needed it. I was actually pretty sick by then and needed the reminder of all the beauty I was fighting to live for (besides my family and friends of course).

I had my second liver transplant soon after that. I thank God every day for my two heroes. This time around was a lot tougher, even coming out of surgery I had more tubes, stayed in ICU longer and was pretty much in the hospital most of the time in the following months. I missed out on a lot in 2011, life definitely does not wait for anyone. 

My little sister graduated high school (And turned 18),  another event I missed (...not to beat a horse to death, but Valentines, Mothers day, and Rivers first day of Kindergarten, just to name a few) But I think I  handled missing out on things a little better in 2011 (It took me a LONG time to get over missing out on Rivers first feeding, diaper change, bath, cry, smile... I think I'm over it now, maybe - he is almost 6, hehe) 

When the holidays started creeping up, I noticed I was feeling a little better, had some more energy. Was even able to participate in some stuff. By the time we headed up to Salinas for turkey day I was feeling better then I had in a long time. These last few months have been great. I also got my feeding (G and J tubes) removed... well, I got one removed, the other I accidentally removed myself) First time I have been without any tubes or bags attached to me in YEARS. As a matter of fact I just took my first bath in years the other day. Very cool. Sometimes I can't believe it, it truly is a miracle. There are still some little things, aches and pains. But I ain't complaining about that (just mentioning it. hehe). I've only thrown up a few times in the last month (MONTH, not day! Amazing!) and I haven't had to stay overnight in the hospital since October. And that was when they were sending me home saying that there wasn't much more they could do for me. Like I said, it was a tough year, but it was a great one too! And 2012 really is a year full of hope (well unless you believe in that whole "end of the world thing") 

In the new year I want to 
  • get organized
  • keep anything (or anyone) toxic out of my life
  • get River eating more of a variety of foods. He used to eat good foods - he even loved lettuce wraps, but because I haven't really cooked in the last few years, he has gotten used to some really basic (dad cooked) or restaurant food. When I first started cooking again a few months ago, he asked me what I was doing in the kitchen... EPIC MOM FAIL but I am already working on this. 
  • I want to keep in better contact with my friends and family (whether that be by phone, computer, snail mail)
  • write more 
  • travel somewhere new
  • and I want to become an ambassador for Donate Life
A very important thing that I have been trying to do, and I want to finish by the end of January, is my letter to my donors family. I have written it and re-written it, but it never seems perfect. How do I tell them how sorry I am for their loss, but how grateful for their decision to donate their loved ones organs I am, that I will try to live each day to the fullest in honor of them. I don't know..., but I hope it will come to me soon. I know that a lot of these things I couldn't do because I was sick and always exhausted, but that doesn't make me feel any less guilty. I was once a semi-funny, social, active, and not flakey person. It seems like so long ago, but lately I have found myself doing things and I think to myself, Hey... I remember I used to do this before I got sick. So I've got confidence that I'm getting better, I'm coming back baby... 2012!! 

A very Happy and Healthy new year to you and yours!  <3

Tuesday, December 6, 2011

3 more days and I'll be tube free!!

Just a  little holiday update. Just 3 more days and my last and final tube will be coming out! 2 years -- nay... OVER 2 years of bags and tubes... it was just months ago that I referred to myself as "the bag lady". Literally hours daily (still) spent daily cleaning and or venting and unclogging tubes no more! Hundreds of washcloths saved from feeding and liquid medicine spills, hundreds of dollars and landfield space saved from Q-tips, guaze, and alcohol pads used! hehehe (Oh the dramatics)
Anyways, FRIDAY, the G-tube is coming out. No more getting caught on things (cabinet knobs will no longer be my enemy) No more trying to find clever ways to wear clothes, River can now sit ANYWHERE on me, walking won't hurt!!  I have already noticed a huge difference walking with my J-tube out - sooo nice. Oh, the things we take for granted. And without as much pain, I haven't needed as much pain medicine, which means I'm less sleepy, which gives me more time to do stuff like this...
Another home made wreath

Frosty out of an old lightbulb

Getting our tree!!

Rivers handprint reindeer

Happy holidays everyone, and remember - especially around this time of year to cherish life... Yesterday is history, tomorrow is a mystery, and today is a gift, that is why they call it the present. :) And I'll say it again, if you are out there this season (and even if your not) donating your time, money, food, and/or toys, don't forget to sign up to be an organ donor. Give the gift of life to others some day!

Friday, December 2, 2011

Lucy... You have some e'splaining to do!

How do you accidentally pull out 6" of tubing?
Tehehe, so I still have yet to call the doctor, but I am thinking for sure tomorrow... really this time. I'm just not sure how I am going to explain that I "accidentally" pulled out my darn J-tube. And then tell him, "By the way, I want the G-tube out too!" I don't have a clinic appointment until December 9th, but I am going to have to suck it up and go early because the G tube is just to painful right now and ice packs aren't cutting it anymore. But back to the J-tube, I believe it is the doctors fault it ended up coming out anyway. When all of the stitches (painfully) started popping off, they told me just to keep it taped and it should be ok. Well, it wasn't, it slowly started getting longer and longer, but this last time I had to take all of the tape off to clean it, the tube came out a few extra inches all at once, and those few inches that came out looked all dirty and gross,  so I wasn't about to try to shove that grossness back in. I guess that is just what I am going to have to tell the docs, it is the truth after all... unless I can convince them that a stray dog ran up to me, saw the tube hanging (since the docs put in one that hangs to my knees, instead of putting in what they call a button - which is much easier and less painful to take care of... but anyways) So, this stray dog runs up, grabs the tube and just keeps on running... what?? It could happen. Ok, I'll stick to the truth and let you know how it goes, but for now I am going to get back to bed. I had to get up and make some jello so that it will be ready in case I get sick later on in the night. Nighty, night my friends!!

(Just to let you know, in case you are reading this and have a G and/or J tube yourself... Both of my tubes were placed after my second transplant. Before these stupid tubes, I had a great combined G and J tube that was placed about 4 or 5 inches above my belly button. It was not painful and hardly leaked anything at all. If I would have even tried to pull that one out it would have not only been very difficult but probably very painful. It had to be removed and placed in a different spot because it was in the way for the transplant, but when they put the new tubes in -- or in my opinion, just threw them in anywhere, they only put in a temporary type. I knew this when I removed the one, so basically what I am saying is, don't try this at home. teheheheee)

Wednesday, November 30, 2011

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!

Thursday, November 3, 2011

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.

Tuesday, September 6, 2011

Busy Week

Well, the tests came back on that rare form of rejection, and since they removed the central line from my neck, of course it came back positive... so the line had to be put back in. I knew I should have fought harder to make them wait til Tuesday for the results! So another central line went in (this time unfortunately, it was much more painful - different doc., less patience and definitely less numbing medication. I felt like I was in the movie "Saw" when he was stitching it into place. I got goose bumps just thinking of it) Anywho, So Tuesday night they put the line in and started my plasmapheresis again. Hopefully it works, some of the interns hadn't even hear of it.

Thursday I had a whole lot of poking and prodding... special blood work, an upper G.I., a MRI, an ultrasound, and some X-rays,  (I'm sure I could throw a few more letters at ya! hehe) And it was a plasmapheresis day too. So I was wheeled (in my bed) from floor to floor, test to test, and started to feel like I was a float princess... I know a lot of people here now so I do a lot of waving. It was a busy day, but Friday ended up being even busier. I was resting when all of the sudden my nurse came in and said I was going for surgery -- ok, I must have been sleeping because I said "no problem" and started to doze back off, but within 15 minutes there were a flurry of doctors in and out of my room to have me sign consent forms. Not even another 15 minutes later (I barely had enough time to call Jason) and I was being wheeled into surgery - no pre-op room or anything. From the tests they had done the day before, they found that my abnormally large Hematoma was pressing on my bowels and tummy, which was probably the reason I was getting nauseous so much. So they did about a 2" incision and cleaned it out and since they were in there, they took a biopsy and looked around to make sure everything else looked ok. They also placed another JP drain to get rid of the extra blood and fluids. Lovely. All together it was about a 3 - 4 hour surgery, 1 hour in recovery, and then I was back in my room. All in all it was a success, even though it will take another 2 weeks to get the biopsy result back on whether or not the Plasmapheresis was a success...

So that was my week in a nutshell. Speaking of nutshells my cheeks have not seemed to stop growing, I now not only look like a chipmunk, but rather a chipmunk hoarder, storing nuts for the next few winters in my cheeks. And speaking of seasons, I realize I pretty much missed summer all together. I got to celebrate the 4th of July and then BAM, hospital... and now it's September! It has been pretty tough, and the world does not seem to stop spinning for me. Hopefully this week will be the week I go home!!

By the way, if you have Facebook, you probably already knew all this... sorry bout that. It is easier to update there daily without all the emotional mush. :)

Friday, August 26, 2011

Jumpin' the gun

The oversized cheeks are from the steroids  

It is just my opinion, and I am glad they are not doing nothing at all, but I do believe my docs are jumping the gun on some stuff here. Take my plasmapheresis, they still have not gotten the final test results on if I have this rare antibody that is fighting off my new liver, yet they sedated me and put in a central line (creating more scar tissue, which isn't good because eventually that vein will be to scarred to use) They completed one round of it on Monday and Tuesday; They then put it on hold, and today took the line out, but still have not received the final result... it should be in this Tuesday. I don't get it? If I do have the antibody the line will have to be put back in to restart the plasmapharesis. Of course I have looked up plasmapharesis and have really only found the procedure done on kidney transplant patients... it must be rare, very rare. hehehee. And just a suggestion, if they tell you that you don't need any meds besides the local numbing shot, I'd tell them they crazy... at least get a little something IV for pain, with something to relax you. It is going to be sore after. The nurses were laughing at me because every time I needed to move my head I would grab the top of my hair (like I'm holding a shrunken head) and maneuver it to where I wanted. Taking the line out on the other hand is not so bad, takes 'em a couple of seconds to get the stitches out and then they just pull it out... that feels weird though - not really painful, just weird.

Anywho, back to jumping the gun. Those aren't the only lab results that they have not received back before starting treatment. I have quite a bit of antibiotics flowing through my veins, most of them we haven't received results back on yet. Jeeze, I don't know why my liver counts keep going up... maybe all these extra procedures, sedation, and medications on my poor new lil liver? Maybe not, we'll see.

Now today they say my labs are about the same as they have been these last few days -- to high, and they are thinking that the hematoma may need to be taken out, but since it is in there like a bunch of grapes full of fluid, they cannot poke a bunch of holes to drain each one, so that means another surgery to clean it out. They say that it is most likely not the reason for my numbers rising, but they don't have much else to go by, and since it is not going away on its own (like it is supposed to!) they might as well remove it. It does put a lot of extra pressure on my belly, and has grown from 10cm x 4 x 4 to 14cm x 4 x 4. Yuck. So that is it medically speaking. My hubby is going to spend the night with me tonight, ooh la la. teheheehee, just kidding. No funny business here. And Monday, River starts his first day of kindergarten. I'm coming to terms with it but it still really hurts my heart to know I won't be there. I had planned to make him some ABC shaped pancakes and cry all the way home from dropping my big boy off, but instead, I'm making daddy film it all - I don't care who it embarrasses. hehehe

I'm on my 6th week inside and I'm going a little stir crazy, but as they say, I'm feeding my faith and starving my fears! I'll be home soon enough and will have many years with my family to enjoy... and believe me, I will be enjoying every moment of it, I'm not taking one second for granted. :) Don't sweat the small stuff my friends, its not worth it. Enjoy what you have... you could have less. (Oh ya, I should make bumper stickers or something)

Friday, August 19, 2011

3rd one's a charm!

Nancy, my living liver donor!
July 19th, 2011. Just one year and 6 days after my first liver transplant, I was blessed and amazed at the miracle of a second transplant - my 3rd liver! Most of my life, I have lived with the knowing I had a sick and failing lil liver (Remember Larry?) Then last year God answered my prayers, not only by giving me more time on this earth to be a mother, a wife... but by giving me Nancy, a cousin-in-law who matched me AND had nothing but faith in Jesus. I still can't believe the sacrifice she made for me. She is a strong and beautiful woman!! I knew I was blessed, but I never thought I would be THIS blessed!

But I was... It was one month ago today that I went into the hospital (knowing that I would be admitted for one thing or another - but nowhere in my mind was that it would be for a new liver) I had missed my last clinic appointment (we went to the Kern River. tehehee) and I was not feeling tip-top. Jason had dropped me off at USC and went to work and I was sitting there waiting to see what would be poked and prodded next when my doctor came in and said "We may have a liver for you!" My mind went blank but I knew not to get excited because I know others who have had a few false alarms and that is probably what this was... but I called Jason and my mom, just in case. The doctors told me that they were going to see the liver (they go by helicopter - how cool is that), but told me that it was very small so it may not be the right fit for me - It had been to small for the others on the list, but as it turned out, not for me - it was a perfect match!! So at 3:00am I was wheeled into the E.R. and about 8 hours later I had a new liver! A second miracle!! It is still hard for me to think about my donor. To think of the grief that they must have, and yet were still able to be so selfless to give others the chance of life in their loss. I will be writing my letter to them as soon as I muster up what to say... how to say thank you.

Since that day, my numbers have been bouncing around so much that I have yet to leave this place. The other day Jason came in and I said Wow, you're home early. He looked at me and said, "Home?" That is when I knew I really had to get out of this place. I have had 1 episode of rejection, 3 biopsies, 2 cholangiograms,2 EKG's, 1 MRCP, 50 staples removed, a partridge in a pear tree, and way to many shots, blood draws, and X-rays to count. But they still have not been able to figure out why my numbers are bouncing. On top of all the procedures, I am on waaay to many drugs - these steroids are one of the worse with the mood swings! They have also caused medicine induced diabetes - I have been taking 4 shots of insulin daily, sometimes 12 units worth. It has also caused high blood pressure, which I take Norvask everyday for that... not to mention I look like a chipmunk storing nuts for the winter - lovely moon face. I also take such a high dose of my prograf (another anti-rejection med) that I have tremors from morning to night -There is a lot of erasing and "Go Back" button being pushed because I am constantly hitting letters twice. But as long as I get home, it is all worth it - I ain't complaining. Besides, I will be getting home soon if I have to break out myself. I have to be home by the 30th so that I can take River to his first day of Kindergarten.:) I can't believe he was only 2 when we first started getting ready for a transplant "in the future"... and now, I am going to be making lunches and asking my boys around the dinner table how their day went, all without my puke bucket sitting next to me. I am so excited!!

...Well I better get some sleep, I've got to get up at 3 to check my insulin and then again at 4 & 4:30 to get my vitals and have my blood drawn. Hopefully this sleeping habit will be easy to break.

Monday, July 4, 2011

Feeding tubes, Stomach suction, and Dehydration

Ok, so I knew that life after getting the feeding tube wasn't going to be A-OK right away, but I was expecting to feel a lot better... I am starting to realize that things do NOT happen as quickly as I expect. :(  I know it has been a while since I have really updated anyone on what has been going on, and I would looooove to say that I have been out living it up, but, I haven't. Though now, almost 2 months after placing the G and J tubes, I think we finally have it figured out... Normally I don't like to place blame, but this time I have to admit that I am a little peeved at my Docs. From the very beginning of my feeding tube, I had asked them several times, "Is this enough water for my daily needs?" It just didn't seem like enough to me, but they assured me that it was. I was sent home in mid May, and after a few days I started to notice that I was throwing up daily and getting weaker and weaker. Honestly, about 4 or 5 days after being released I should have called and went back in... but I am a stubborn one (sometimes) and a baby, and I just didn't wanna!! I wanted to wait until my clinic appointment the next week (don't judge me) which I did, and of course was admitted. It took quite a few days to get my electrolytes balanced back out and re-hydrated. But what caused the throwing up in the first place?? A few tests, (another endoscope) but nothing showed unusual. So another week in the hospital and I was released feeling pretty good again. But again after a few days I began throwing up and feeling weak, and again decided to just wait until my next clinic appointment to be admitted again. Again they had no idea why I was vomiting (it should have just been coming out of my G-tube), the feeding tube and venting tube were in the correct spots so it was a mystery. One thing different this time though was I spoke to the dietitian and was told that I should be pushing about 300 mls extra down my J tube to keep me from being dehydrated. Hmmm... that's interesting. Meanwhile my weight was continuing to drop, I was about 108. Again I was sent home... again I was admitted about a week later. This time they decided that because I was loosing to much weight, my formula needed to be changed to a less concentrated formula with higher protein and more calories. (I prayed real hard my tummy would handle it) And it did. Yaeeh! Now I needed about 500 to 600 mls extra pushed through my J tube daily. You are probably really sick of hearing this by now, I'm sick of writing it... but again, I was sent home, weighing 101 lbs. And no joke, (almost 2 weeks I lasted this time) but I was admitted again, and finally  they added Potassium to my list of medications (since it had been low every time I was admitted - this time it was so low they had to keep the heart monitors on me for the first few days - the worlds hardest crap to get off your skin after - anyways, they also FINALLY decided that besides the 500 ml that I need in addition to my formula, I also need to make up what I lose through my bili drains (Billy and Billi Jean are their names. hahaha! I have to find ways to entertain myself - like I said before, don't judge me. hehe.) --It does make sense to me, and irritated me greatly that they didn't think of it before.
So I was released again on Saturday, July 2nd. But I am feeling much more optimistic this time. I was even able to go to the family 4th of July party yesterday and sneaked in a little rice too (teheheee) I sat in the sun, watched River swim for a few hours as we listened to classic rock. My uncle even went to the store and bought me a fuse banana colada (No - there is no alcohol in those) but I freeze 'em a little and they turn into a yummy slushy treat. They lit a few fireworks and then I went home and slept almost 14 hours (building my spoons back up!) It was a great day out, and hopefully the beginning of nice break from USC! I tell you, these last two months... they've been a real bummer. I was becoming very discouraged and started to wonder if I was even going to make it for another transplant. I just need to remember to take it 1 day at a time. It's kind of like when I clean my house (well when I used to) If I started thinking about everything I had to do I felt like you could see the smoke coming out of my head as the list in my mind was becoming longer and longer until I would just throw my hands up and say "I can't do all this" But after I was done freaking out, I would remember to just look at it section by section, and it became doable. Same with this... so these last few months have been filled with me dragging my purple puke bucket around in one hand, my I.V. pole in the other, and having mini nervous breakdowns, but like I said... I know it has only been a few days, but I feel different this time and hopefully I can keep it up and stay out of the darn hospital for a while!

I hope you are all enjoying this beautiful holiday weekend!! I can't wait to be free from all these bags, poles, and machines. Actually, I can't wait to be free from this disease!! But that is something that is really taking a lot longer then I had hoped... Thanks for reading these novels, and if you have any questions feel free to ask, believe it or not I do leave out a lot of information, but it is only for length reasons - I can't even stand all this babbling sometimes. Hehehe. I hope you are all doing great, and if not, just remember to take it one day at a time - "just keep swimming" and that it will always get better - "It can't rain all the time" ...(I hope)

Thursday, May 19, 2011

The Bag Lady

Besides Sicki Ricki and Banana mama (you have to say banana the weird way for it to sound right) The Bag Lady is officially my newest AKA. These last two weeks, most of my time has been utilized untangling bags and tubes coming from every which way (not that I'm complaining, since it ate up a lot of  time that normally would have been spent just been sitting in my hospital bed)
I checked in on May 2nd - I knew I was coming in because the doctors and I had been discussing putting a feeding tube in for a while, but April was a big month for me (Rivers, Jasons, and my moms Birthdays, and the Donate Life Walk) so I told them it would have to wait until May (I'm sure my docs just looooooooove me. hehehe) They also had to do a few tests before the tubes were put in. Did you know that it takes about 90 minutes for one half of an egg to digest, and just a while longer for the rest to be completely out of your stomach? Well it does, unless you are me. When I went in for the 3 hour test (a 3 hour test - hehe, Gilligan's Island) to see how long my egg took digest... well, it didn't. That egg sat there the entire time, but did leave my tummy about 6 hours later -- when I threw it up. I guess since my liver isn't working well, my stomach figured it could slack off too. And this is the cause of most of my vomiting, why I'm mal-nourished (no matter how many boosts I drank) and why a lot of medications don't seem to work. Basically, everything stayed in my stomach until it fermented (that's nasty) or until after several meals, it was just to full and had to come out somehow. Needless to say, the feeding tube was necessary. The procedure was easy peasy and even though it is right smack dab in the middle of my tummy, it is not that painful. Getting regulated on feedings is another story. We tried 3 different formulas (for some reason the easiest to digest was the last one they tried) and luckily that 3rd one worked. Then we had to work on the amount, and so far I can only handle a small amount (40ML) an hour, which means that in order to get almost a full days amount of calories, I have to be on the feedings 24 hours a day -- I'm hoping I can build up tolerance so that I can cycle 12hrs on and 12hrs off, then I'd just hook up at night and wake up content and with a whole lot of energy! But for now I am fine with 24hrs, because it's better then barely having the energy to make it to the bathroom to puke. hehee. The feeding tube (J-tube) bypasses my stomach all together and goes straight into my small intestine, but there is also another tube (the G-tube) which goes into my stomach and sucks out anything that I drink, and the stuff that the stomach makes on its own.Which I love, even though it sounds just like when they suction the spit from your mouth at the dentist, but this is what keeps me from being nauseous (about 90% of the time) In Martha's words... this feeding tube -- It's a good thing!!
Anywho, after the G/J tubes were in, I started noticing that I was getting a bit bloated. I thought it was from the feedings and the doctors (even though I mentioned it) didn't seem to notice, that is until a few days later when I started looking about 5 months pregnant. An ultrasound was ordered, and I was sad to hear that I was developing some Ascites (which I haven't had since before my transplant) So the next morning I had a parasentesis, 2 1/2 liters were drained from my abdomen (that is 5 1/2lbs) and I felt a little better - a little lighter. The day after that, my doc reminded me that it had been a month since my last bili drain change, they might as well do it while I was still here. And I knew I wasn't going home that week. When they replaced that drain they noticed a second stricture on a biliary duct a little higher and deeper in the liver. Am I ever going home?? Another procedure was now scheduled to put in a second tube and bili bag. And this one they said would be a little more painful (well they use the word "sensitive", but that's a load of poo - it's pain) which made me nervous because I had woken up in pain and calling for Faith (my sedation nurse) during the last replacement... and that worry was for good reason, because I did in fact wake up several times crying for Faith when they started to put in the second drain, but as soon as they said they were going to stop the procedure because they couldn't possibly give me any more drugs, I begged them to continue -- the sooner this got done, the sooner I'd get home, but they still had a long way to go to finish and I was in to much pain. They were going to have to put me completely under with the good stuff. So I was sent back to my room and told they would do the procedure after the weekend... greaaaaaaaat. Meanwhile my tummy started to grow again, again the docs didn't notice until I looked about 8 months pregnant (popped out belly button and all). So uncomfortable. They decided to add another parasentesis to my Monday procedure (which ended up getting bumped to tuesday) So I waddled around the hospital for the next few days, to full feeling to even keep my feeding tube on. Tuesday finally came, and both procedures were completed with me in la la land. My second bili bag was in place , and this time they drained 5 1/2 liters of ascites (yup, that is 12 lbs) I now weight 115lbs - eat your heart out Richard Simmons, fastest weight loss program yet hehehe)
So, yesterday when the docs came in, besides the pain in my ribs from where they placed the 2nd drain, I felt much better then I have in a looong time. Even thought they told me that my MELD score right now is 22 - higher then it has ever been, and in other states would put me at the top of the Unos list. But when they were talking to me, I could see the little wheels spinning in their heads, and finally one of my surgeons looked at the other and said, "We should do another biopsy" That is when 5 year old Ricki came out. "But I thought I was going to go home tomorrow." I whined. Ok, they said, we will schedule it for today then. I wasn't sure my body could take going under one more time, but it did, and I didn't wake up one time during the procedure.
Wow, are you still with me here? So that was 7 procedures in 17 days, and I'm going home with 3 output drains, 1 feeding tube, and a few new medications... but at least I'm going home!! :) Ya Baby!!

Monday, May 9, 2011

Donate Life Walk 2011

It was another magical day in Fullerton at the 9th Donate Life walk. There were over a thousand more people this year and it just keeps growing! We even had some more people there supporting Team Larry. I almost didn't make it that morning, I was so sick... but I HAD TO DO IT! There are so many people waiting for the gift of life (and I am one of them... again)  Hopefully people are starting to realize just how much of a shortage we have, and how many people are dying waiting. But when you go to an event like that, it brings back hope. If everyone can just get the word out and sign their donor cards. We as people have the chance to be someone's miracle, and will live on forever with the recipient and their family :)

The Najera's and Albertoni jrs
The Albertoni's
The Starks' and Rocha's
I do have to say, about half way through we were all asking... did we accidently take the 5K instead... My whole team was looking a little tired (and hot) But as you see, we all made it to the finish line!! After that we headed over to the free food and listened to some music (some that made you wanna cry, like "somewhere over the rainbow" Sang by an American Idol runner up. Of course that was only until the kids found the bouncy houses and big slides. The only thing I can really say is.... if you have a bag attached to you for any reason... bring a spare. Thank God for the Red Cross truck who had some tape I could wrap it in to stop the leak but still, I was a little upset at Billy the bili drain for keeping me off to the sidelines even more. hehe. Anyways I wanted to give a HUUUUUUUGE thank you to those who came out and supported Donate Life! It was a great and uplifting day. Donate life!! Donde Vida!!

Wednesday, April 27, 2011

Team Larry - Last Day to Register On-Line

Hey guys! I am so excited about the walk this Saturday, I even delayed putting my feeding tube in just to make sure I wouldn't miss it. hehee. It is the least I can do for the miracle that Nancy gave to me. Plus it is a fun and up-lifting day. I don't know anyone who would not become an organ donor after attending this walk. Anywho, here is a bit of information you might need if you are attending.

First, we will meet near the table where the shirts are handed out at @ 8:00. (If anyone will be late, it will probably be me - but don't forget mornings are hard for me :( I'm usually sick, but I will try my darndest) I want to head over to the picture area to get a team photo sometime after that, so try to make it!!

Also, today, Wednesday, April 27th is the last day to register on-line for Team Larry, but don't worry, you can still register at the walk (you just have to get there a lil early -- 7:00am)  
Register here today >>>

Frequently Asked Questions

Q:  Are strollers, wheelchairs, bikes and rollerblades allowed?
A:  Yes.

Q:  Can I run with a running stroller?
A:  Yes

Q:  Can we bring our dog?
A:  The campus’ answer is no, but if you bring a dog, we will not make the dog leave ☺

Q:  Where do I check-in if I’ve already registered?
A:  Go to the Pre-Registration area and pick up your bib and wristband (for food).  If your team has 25+ members or if your team is a Hospital Team, proceed to the Team Villages where you’ll find your team tables and team signs. (Team Larry didn't make 25 members this year :( )

Q:  What happens if someone wants to join my team but they haven’t registered?
A:  They can come to the Walk Up Registration line beginning at 7a.m.  They will receive a general Run/Walk t-shirt.

Q:  What do I do with fundraising money I have collected?
A:  Thank you for fundraising!  You can bring your fundraising money to registration and turn it in there.  Any fundraising prizes you’ve earned will be sent to you in the mail.

Q:  To whom do I have my sponsors make checks payable?
A:  Donate Life Run/Walk

Q:  Can I make my own team banner and sign?
A:  Yes!  Have fun!  They just may end up in a photo on the website or our brochure.

Q:  Will there be food?
A:  In the morning, the Vons Breakfast Court will serve fruit and granola bars.  Starting at 10:30am, the Placentia Rotary Lunch Court will serve hot dogs, salad and chips at no charge to registered participants with a wristband.   In addition, there will be a few booths where food items can be purchased.  If you have any dietary restrictions, you may wish to consider bringing your own food. 

Q:  If I am walking, do I have to do the 1K?
A:  Everyone can choose whether they’d like to walk, run, roll, or skip the 1K or the 5K.

Thank you for your participation and support of the Donate Life Run/Walk!  We look forwarding to seeing you and your team on April 30th! 

Thursday, April 21, 2011

Tests, tests, and tummy aches

 Hey guys, it's a shocker but I'm in the hospital again... hopefully I'll be out in a day or two. I was admitted on Monday at my normal clinic. My doctor didn't like the fact that I puke (almost daily now - again) I also have a bili-drain that drains waaaaaaaaaay to much other stuff besides my bile (like all my nutrients) and my all night randevu's with the toilet. She said there is no way I am getting nearly enough nutrients... well duhhhh (I said in my head) I've only been mentioning this for months now - but not with enough confidence to be really listened to I guess. Anyways, they did an endoscopy for that and took a few biopsies of some of the swollen red parts of my intestine. They also found a lot of fluid still in my stomach, which should not have been there anymore since I hadn't put anything in my mouth since the day before. This is called Gastroparesis and hopefully they have a pill that will work to fix it it along with some diet changes (again). Basically, your stomach contracts to push all your foods and liquids to its next stop, but mine is not doing that, so everything is staying stagnant in my stomach, which is why I can throw  up food that I ate days before. They suctioned everything out of my stomach and I did not throw up the rest of Tuesday or Wednesday, though I am starting to feel a lil heavy again.
As I mentioned before, they also found that the veins in my esophagus and small intestine are swollen, which confirms that portal hypertension has began. As for the biopsy, I'll keep you posted on the results, I am sure it is just one more swollen area due to my liver.

The other reason I am here at USC is to finish up all the testing for my second transplant. So far so good, I even got told I have a beautiful heart. awe... I know, I said. hehehee. I think that I have completed them all this week... Since my organs aren't as mature as a lot of the other people getting transplants I do get to skip a lot of the evaluation tests... like the colonoscopy and mammogram. Of course if you are going in for a transplant evaluation test, it also helps if you still have the organ they are testing. (that was an awkward one) tehehee.
There isn't much more they can do for me, so they might as well send me home... otherwise there is going to be an easter egg hunt on 6 south at USC. :)

Friday, April 8, 2011

Liver Transplant.... Take 2

Today is the day that the USC surgeons are placing my name on the UNOS list for a second liver transplant. (I'm sorry Nancy (and Sally)... It's not you, it's me... really!) My MELD score is 17, which is actually 2 points higher then when I was transplanted in July. It is somewhat confusing to explain the reason why the second transplant is needed. I am not rejecting my new liver (otherwise an increase of anti-rejection meds would usually solve the problem) Nor is my new liver cirrhotic already (though there is some fibrosis) They have just exhausted all possibilities and my lab results are still climbing. We were hoping that this bili-drain would solve the problem but it has been a few months now and many of my numbers are still about 5x higher then their normal ranges. The good news though is that my numbers were about 10x higher then normal before the tube was placed, so it was part of the problem... and thank the Lord that dropping my bilirubin by half was enough to stop the constant itching!! (Remember that!?!) Those months were torturrrrrrrrrrrrre. But it's not enough, and now Sally is not functioning right, and is already causing daily tummy aches, tiredness, and nutrient absorption problems. (oh my!)
Ok, so back to the bag (my bili-drain) It was supposed to stay in for 6 months. If it was successful in fixing the stricture after the 6 months, they were going to remove it and that would have been that. If the stricture was still there, they were going to perform surgery to remove that part of the bile duct so that I wouldn't need this tube and bag permanently. But the surgery is pretty dangerous, and since I am going to get another transplant (which would fix the problem too) docs said they will not do the surgery... So this bag is probably going to be with me a while longer (wah waah)
As for the transplant... It sucks, but I am far from the first person to need a second transplant. It is nice to finally have a plan though! Something to look forward to. (Not the surgery -- the results of the surgery, GOOD HEALTH!) There is a light at the end of the tunnel (ummm... again, really this time though -hopefully) tehehee. just kidding. I know I sound like I am just ecstatic about this, I'm not. I feel horrible that I have to get rid of this wonderful liver that Nancy gave me. I hate all the tubes in me after surgery (I know that shouldn't be such a big deal, but it is), and once in a while I get a flickering horrible thought of... what if this one doesn't work either? BUT! Then I pick up my bootstraps and remember to have faith. Sally might not have been meant to be my permanent liver, but is giving me time to get the one that will give me a full, long, life. :)
Since it is going to be a deceased donor this time (most likely) I don't know when it will be. USC is transplanting my blood type at about a MELD score of 30... That means I am going to get pretty sick first, but I have no idea how long that will take either. It has taken me 8 months to get to a 17, so if it continues at this rate, it will take about another 8 months at the earliest before I am at the top of the list. It is going to be tough, but it is doable. There is always the option of duel listing in another state. Some are transplanting under 20. It's a thought.
All I can really say right now is ...Dude!

Wednesday, March 23, 2011


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:

Tuesday, March 15, 2011

...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!

Friday, March 11, 2011

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. :)

Saturday, March 5, 2011

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.

Tuesday, February 15, 2011

"The Doctor on call said NO"

I was just sitting here this morning, watching the birds outside my window and drinking my Boost on the rocks. tehehee. Yesterday was my clinic appointment --yup on Valentines day, which I hope you had a lovely one, shared with the ones you love and appreciate!! Most of my day was spent with nurses, but my hubby stayed with me the whole time. Awe. Anywho, my labs haven't changed much, still not good, but they didn't need to admit me! Thank you Jesus!! I will be admitted some time next week though. They are going to up-size my bili-drain again. Ouchieeeee! But, before I forget, (I know I have said it many times before) I wanted to remind you guys that you have to be your own advocate! (and sometimes that demands you to be a little ...ummm, demanding!)

Last month I had to pull myself out of my comfort zone and fight for myself a few times in the hospital, and let me give you a little tip. There is always someone higher on the medical ladder then the person you are talking to. I know I have mentioned nurses that said "ewe" when I threw up and others that left me sit in the bathroom while they went on lunch, and each time I could have done something about it. If you are having a problem with your nurse, try talking to them first. This time I had a nurse that was getting ready to give me my I.V. pain meds but decided to first lecture me on how pain "normally" works, how it grows on their magic pain level scale from a 1 to a you should ask for the pill form of your pain medication before it gets so bad that you need I.V. form. After a few seconds of this, I quickly stopped her - told her to give me my medicine first please and then explained to her that I in fact have been sick majority of my life and have actually had 6 or 7 surgeries (depending on how you count) and sometimes pain does not climb the number scale at all, but jumps it and hits an "8" full force. Originally I could tell she was irritated with the fact that I had made her go back and get the I.V. med after she had already brought the pill, and was actually a little stuck up sounding while she educated me on pain, but she calmed down after that. Now, sometimes they may not see the errors of their ways, or maybe you just don't like confrontation (which believe me... a few months ago - I would have just bit my tongue and cried after, repeating, noooooo one understands me.)  So if that is the case, NEVER forget about your charge nurse. They are above your nurse and have authority to change your nurse at any time, or they can talk to them for you.

Another issue I had was that my pain seemed worse at night (when my regular doctors were already home sleeping) By then my I.V. pain meds had been discontinued. One night the pain got real bad and I needed some serious pain relief. My nurse called the doctor on call and they said "No" to giving me anything via I.V. so I told my nurse to call them back and tell them that I wanted to talk to them. Within 20 minutes my nurse came back in --not with a phone, but with my meds. The next day when my doctors were making rounds, I let them know what had happened and they spoke with that doctor, letting her know that if I needed it to give it to me... It is not that I am trying to get anyone in trouble (and trust me, that is the first thing out of my mouth each time) but as patients, we have rights, and one of them is to be comfortable... I'm just sayin' :)

Sunday, February 13, 2011

Another long run!

I can tell just by their ringtone when they call. (I'm not psychic or anything, they just have their own ring tone. ehehe) Any who, on Friday, January 7th, my nurse coordinator Kaily called and said that I needed to come in that night because tests had come back positive for CMV. (click here for CMV info) They also wanted to "readdress" the fact that I was still jaundiced and oh so itchy.  Right when I got there that night they started me on antibiotics and fluids. Sunday they did another biopsy. The good news was, there was no CMV infection in the liver, the bad news was that my liver was NOT happy. My LFT's were very high, and as I have mentioned before, fibrosis had already started on my new liver. We had (kinda) hoped that the CMV was in the liver because that could have been the reason my liver was so unhappy, but it wasn't. My bilirubin had climbed into the 20's now (normal range is under 2) And just for fun I had calculated my MELD score with my latest labs, not expecting it to show my score to be in the mid 20's itself. (Though this drops significantly when your bilirubin drops)
Because they could not find anything else wrong with my liver, the cause for the rapid damage was assumed to be because of my HCV, but they wanted to do one more test just in case. They re-did the MRCP (like an MRI) and like before, did not see anything significant; but unsatisfied with that, my docs decided to do another ERCP (tube down the throat) Low and behold, they found a stricture in my bile duct... a pretty bad one at that - it was completely closed and double the length of most strictures. They were unable to put stents in, so later that day they came and got me to put a bili drain in (click here for more bili drain info) My only question was... "How many times can you put someone under in one day?" ...More then twice I guess. :) This drain was much more painful then the one I had right after transplant... they go through the ribs (and I guess through the diaphragm too) and boy does it hurt to breathe sometimes! That first week I was pretty loaded up on the good stuff. I would start to dream as soon as I closed my eyes (and sometimes I just closed my eyes for a second when someone was talking and I would see something else, and when I opened my eyes I would say something completely off subject or just strange) Needless to say my mom was a little concerned with the amount of pain meds I was receiving. The next week I was taken off most of the pain meds and was starting to feel a tad better, and that's when they decided that the drain needed to be larger. I went back under and again was in some serious pain after (but they wouldn't drug me up again all crazy) This time the drain was draining like crazy, and my numbers, including my bilirubin, began to drop. THIS COULD BE THE REASON MY NUMBERS WERE SO HIGH!! It's possible that my Hep C is not as bad as we originally thought, it could be the stricture causing the damage!!  This is better news, because it was finally diagnosed and it is something fixable!  I am now doubly hoping this is the case because while I was in the hospital they also discontinued my Ribavirin and Interferon treatment. It wasn't working, and actually may have been working against me this time. Still though, it was a blow to me when they said they were taking me off. There was only a 20% chance of it working, but I thought I miiiiiiiiiiiiiiiiiiiight be one of those 20%... maybe? Well, C'est la vie. I hated that stuff anyway.
After about a week of my new lil' bile bag draining, the docs decided to cap it off (meaning no more bag - and hopefully the duct would do it's job now that the drain was in there to bi-pass the stricture) but that was short lived, as my numbers (mostly my Bilirubin and Alk Phos) began to rise again. A new bag was put in, and the numbers dropped back down some. By now I have been in the hospital for over 3 weeks. Each day, the doctors would come in and say "...Maybe you will be able to go home tomorrow." Finally, after a few days of working out some kinks (more blood transfusions, Neupogen injections, fever, and of course, magnesium drips) and dealing with some pain management "issues" --On Saturday, February 5th, after 28 days in the hole (tehehee) Dr. Alexopolis came in and said "Well, your numbers are still pretty bad, but they are way better then when you came in... so, what do you want to do?" (overly eager) I said, "I wanna go home!!" and just like that (6 hours later) I was heading home!

The only great thing about being in the hospital for so long is when you finally get out. You know you made it through, and everything you see seems even more beautiful then it did before!