Tuesday, March 30, 2010

Larry's Last Horrah!

Almost 30 years down, and I am still clinging to hope that it can't rain all the time... and it looks like this storm may be passing soon!! Friday night Nancy got the call from Janelle at USC, and she is officially liver splitting capable (hehe... oh ya, I've got more clever sayings so stay tuned) So we will be setting up the surgery. And if all goes as planned, I will be taking River to preschool myself by September. (that's even giving myself a 6 weeks recoup time...hehe) I really am trying my hardest to prepare for the worst and praying for the best. :) Which was sort of the reason I wanted to take this trip to Las Vegas in the first place. It really is uncertain how this will all turn out. I am trading one set of problems for another if I make it at all, and what if it doesn't take all of my old problems away? Even though, right now I am pretty much in constant pain and on borrowed time... it is familiar and all I have, so I will try and make the best out of it. So, I thought I should send Larry out in style... but, it kind of turned out to be a reminder of everything we can't do... (and I'm not talking boozing it up and prostitution here people) At least when I am in the hospital, I know that there is nothing going on around me that I am missing... But in Vegas... Man, that's torture!! Hehehe... No, no, it wasn't bad, I joke. I got to do just about everything I wanted to do... Saw a comedy show, window shopped, went swimming (well, floating), and reminisced with the guys. I haven't spent as much time with them as I would like, so that was a treat. It just all had to be done between naps and from a wheelchair this time... hehehe. (By the way, I did feel really bad using the wheelchair, especially when they would roll me up next to someone who actually had their own, but it really did keep Larry from hurting and me from extra naps on Sunday - I didn't love it - I was even shorter then.
But it was nice, and now it is all down to business. Pray for the best and prepare for the worst... Me and Nancy have some paperwork to fill out, directives and living wills... Like me, I am sure she is taking extra note of the smell of her childrens hair... extra glances at the sky. And though I know in my heart and soul that she will be ok, I am amazed at the fact that she is doing this by choice (Yup, no money or pressure here folks) just to give me the opportunity live!! Just hold out a few more months Larry ol' buddy of mine.... Sally is coming to take over for ya reaaaaaaaaal soon...Like, July 15th (possibly) soon!!

Tuesday, March 23, 2010

Tuesdays appt... Check!

One appointment down... three more to go this month. This one was quick and painless. (And just to brag a little... Officially 116 lbs. Eat your heart out) I got my Ear, nose, and throat doctor referral to get my nosey done (can't waaaaaaait to smell that one) and also an appointment with the cardiologist, because they are going to do a 24 hour echo (Oh ya... I'm keeping up with all the geriatrics on medical procedures)  Jason did go with me this morning unexpectedly, which was a nice treat. Even he commented on the "laid back" feel of my doctors office. They breezed through questions and the nurse tried to shorten my heart problem to GERD... I said "No, isn't that something pregnant women get?" she looked at me like a nut and said "No", and I said... "Well, whatever it is... It ain't the shortened version of Tricuspid Valve Regurgitation, I tell you what."  and I was right (well kind of. I googled it when I got home because they didn't have wireless connection there -- it's heartburn). Jason said, "Ya, it's a long freaking word, but she's gonna have to do some work and type it all out" lol. I almost left that office with a new disorder... hehehe. So that is that, not much exciting, just trying to stay afloat right now. Waiting for my Vegas trip really... little something other then the mundane.

Monday, March 22, 2010

Just another manic monday... whooa woeee

Have you ever noticed that the closer you get to home... the more you have to pee? Just a little Monday morning visual... No time to waste, and starting out the week BIG. I emerged from the bathroom... Tissue in nose, puke bucket in hand, woobie wrapped around me tight, and dragging one foot and then the other behind me to scratch the bottoms of them... I made my way to the couch because Larry gets uncomfortable in the bed, plopped myself down, jumped up to remove the Hot Wheels first, laid back down and realized I'm not very sleepy anymore. hehehehe.... I'm ok really, not complaining. I think it really is just the anticipation... knowing that I may not be sick sometime VERY soon!! It's almost unreal. Although it hurts my heart so bad to think of all the sick people I am leaving behind. Still waiting... still dying...  This needs to change! We have to fix this guys! Ok, I'm getting emotional at 5 am... and lookin' pretty pathetic. Be happy I don't take a picture this morning. I looked like the hunchback of Notre Dame coming in. hehehe.
Have a good week everyone, and remember... you can either laugh or cry, and crying will only give you a headache.waka waka! :o)

Saturday, March 20, 2010

Tuesdays doctor appointment

Jason told me today that cars do not really explode like they do in movies if you shoot the gas tank. (while I am very glad that this one is in fact "Hollywood" fiction, I am always slightly disappointed when movie magic is ruined for me) However, this got me thinking of other things that movies and T.V. exaggerate. Many episodes of House have shown blood spewing from cirrhotic patients mouths and noses with bleeding varices, but is that the way it really happens? I may be slightly desensitizing and diluting myself by saying. "Ah, I saw that on T.V. and theirs was A LOT worse before they went into see a doctor...I've got time, what do you wanna eat tonight?" hehe. For all I know we don't even have the amount of blood they lose on T.V. in our bodies... Needless to say it made me concerned enough to finally get up and call my doctor to get my nose done. (cauterized, that is)

I will also be going in on Tuesday to schedule my cardiologist appointment. I have been noticing some chest pain and chest flutters these last few weeks and although I am assuming that it is some hidden anxiety, I better check out the ol' ticker just to make sure... It is past my yearly check-up anyway. (I got a leaky valve... or as I like to say, Thumper is a regurgitator.) hehe.

One of these issues might be the cause of the (extra) dizziness, lightheaded, tiredness I have been feeling... but I have no expectations to fix that... I just know that my appetite will come back if I stop bleeding all over my food, and that's a good thing! hehehe.

Wednesday, March 17, 2010

Join Team Larry Now!!! Less then 45 days left!!

I must admit I am becoming very worried about my first attempt at fund raising for Team Larry. I know I have a lot of people who have said they will be there... but I have only one member so far -- FAIL. Well... Maybe someone will feel sorry for me and join my team (This is one of the reasons I have always hated organized sports and competitions). Next year though... watch out. I'll be going door to door.
Please... if you can, sign up. Help us out... I can't have a banner if there is only 5 of us, that will just look ridiculous... hehehe

Tuesday, March 16, 2010

You wanna give her whaaaat???

Meet Nancy. Nancy is a wife and mother like me... She is also my husbands cousin (just one more reason I'm glad I married him... hehe I joke) And incase you didn't know, Nancy had her first USC appointment yesterday to be the person to save my life. Whatever happens now is in God's hands, and we have agreed that if at any point it just doesn't feel right, we will throw in the towel. We will know... God will close the door if it is not meant to be. And I believe that with all of my heart.
But as I sit here in the dark again this morning, tissue tickling my nose and "puke bucket" at hand I can't help but to be excited. This can all change very soon... and I am ready for the change. Now, I guess this would be as good a time as any to also share, I am not going into this blissfully ignorant. I do know that this transplant does not make everything all better. First off, any surgery has risks. Secondly, I will be on anti-rejection medications for the rest of my life... any fever is cause for alarm because at any time my body could reject my new organ (but I keep everything... so no worries there) And ofcourse, there is the reason my liver has failed in the first place -- A transplant will not cure my Hepatitis C.  (I think Nancy took it a little personally when I told her that it will most likely begin to attack my new liver too) but it will give me precious time, and hopefully less sick time in this world with my friends and family. Plus, I'm holding out for a cure.                                                                               Tim & the Boss waitin'

Yes, this is only the beginning of our fight, but life is worth it, and Nancy... knowing that it is (literally) impossible for me to do on my own, decided to BE my miracle. She saw something that she didn't like, and decided to try and change it... Now I don't know about you, but this is something I aspire to! And that is why she is my hero now and forever -- Well... that and the obvious (liver sliver giver) reason. Yes, this is one amazing family right here, and trust me when I say that this gift will not be given in vain... I know that I may be one of the lucky ones; the fact that 18 people die and thousands more suffer daily waiting for this gift, never leaves my mind. And if by the grace of God I am given the gift of a second chance, I WILL BE part of this change.

Sunday, March 14, 2010

A quick check in with USC

Just a little update, as it has come to my attention that I have now "officially" been on the UNOS Transplant Waiting List for almost 1 month! The days seem to be flying by with these extra naps, and it seems like every time I finally start to get used to my new level of (lack of) energy, it drops again. So while my mom has River and I enjoy silence, I thought I should inform you on the latest.
I spoke to my coordinator yesterday and was given some new information... and a few new rules. Number one, a living donor is a privilege for the ones who can stay healthy enough to receive one. In other words, I cannot slack off now that I have may have a living donor, or as I like to say "extra bits marinating over there" because if I get too sick, only a whole (deceased donor) liver will do... No worries on me doing my part... I don't like to be sick, so I won't do anything to irritate Larry (he's quite finicky).
Speaking of my possible "extra bits", Nancy has her first USC appointment on Monday. She will meet with coordinators, psychologists (I'm not worried about her) and surgeons... oh my. They will check to see if she is physically and mentally ready. They also need to make sure that her liver is big enough to give a sliver (and some other technical stuff). If it all lines up perfectly, then all is a go! I almost hate to talk about it, with the thought of jinxing it... but it is just to exciting and beautiful of a miracle not to share! I should warn my family and friends though, that with transplants, it is never a sure thing until they are actually wheeling you in to surgery. From what I have read, there are many factors that go into giving this second gift of life.
Lastly, hopefully I will be able to get a little more energy soon. When I spoke to my nurse, I was told that the medicine that is used to keep the toxins down in my body needs to be constantly adjusted to give you the "effect" it needs to give... So some weeks I may only take it 2 times a day and others, it might be 4 times a day. Not following that can cause coma and even death. It has already caused the following - which I found out are classic effects. I must admit that it is very frustrating that they originally gave me this medicine (Lactulose) and said... "Here, you need to have (There is no way to say this delicately) 3 to 4 bowel movements a day." ... That is it. They do not tell you that you need to play with the doses, or the symptoms to look for if the toxins start to build up. (kinda scary)
  • Lethargy - I'm sleeeeeeeeeeeepy... Oh, but NOT at night. Well, not as tired.
  • Disoriented - This is why I don't drive anymore... I have actually pressed continually on the brake pedal and became livid and very confused at the fact that my car was not moving...This is also the reason for my new MedicAlert bracelet. :)
  • Forgetfulness - I was told to have several alarm clocks set for normal things (like picking up River at Grandmas, taking food out of the oven, or blowing out a lit candle) 
  • Itching - I was told to cut my nails by my nurse... cut my nails and wash my hands because my skin is thinner now. I guess there is not much I can do for the itching itself. I laugh at Benadryl... hahaha!
Well, I am sure there are more, but I forget (bud um bum) I guess right now, there is not much to really update on - medically speaking. Anytime that I am not spending with my family (or sleeping) is kind of spread thin between minuscule housework and research. What amazes me, is that the more research I do, the less scared I become... but not for the reasons you would think. Yes, for me, knowledge is just plain interesting (I freaking LOVE the snapple bottle cap type of information most -- but I digress) But because the more research I do, the more people I come across... and people, people can be AMAZING. The biggest testament I have seen so far, is giving the gift of life to a complete stranger in your time of greatest sorrow... but it is not the only thing. Anyone who looks outside themselves, people who want to make a change, anyone who looks at life with innocence and childlike excitement, these are my heros! It is all part of the journey... sickness (and life) will end to a new beginning... Though I have to admit it is easier to say that when I am not face down in the toilet, I am really trying to remember these things when times are tough. (That first half could be on a Hallmark card... the second, not so much) Anyways, just something to leave you with, now that I have finally tuckered myself out. Goodnight... errr, morning my friend.

    Monday, March 8, 2010

    Raindrops keep falling on my head...

    I love this scene from Butch Cassidy. A song to live by - That Paul Newman was an amazing man as well (and not to shabby to look at) Paul said, "I expect to pass through this world but once; any good thing therefore that I can do, or any kindness ... let me not defer or neglect it, for I shall not pass this way again."  Just something to ponder. :)

    My pregnancy with River was complicated and slightly miserable to say the least. I realize now that the symptoms I had were actually liver related, but at the time, all I was focused on was getting him out to end it! And all I did was wait. Wait to see my miracle... wait to stop feeling miserable... wait to start our new life all together. What I took for granted, was the experience. (Of course I am now completely used to puking daily, itching, swelling,and pee pressure) which I wasn't at the time, so I will cut myself some slack. Nevertheless, I wish I would have gotten out more so people could rub my belly, taken more pictures, enjoyed the not so sick moments more, because it would be my only pregnancy.
    But even that aside, it was 9 months of my life -- and now,  I have been sick for almost 2 years  (which eventually some doctors may have some explaining to do) but I do not know what is to come tomorrow. Waiting for a new liver and becoming better has started to consume me, but I need to step back now. Learn from previous experiences -- I need to enjoy whatever part of this journey I can. And trust me when I say, I have seen more things through His eyes in these past few months then I had in the 27 years prior. The sun seems to warm me all the way through... the sound of the wind through the trees... and birds... just beautiful! The other day, River and I took a walk and we stopped at the neighbors to pick some lemons (we have permission). I picked a blossom too, just to smell it on the way home. (Thanks to Hot Dog on A Stick) I make some killer lemonade.

    Thursday, March 4, 2010

    You're no spring chicken!

    Last night, my sister and I sat and watched an episode of the Golden Girls where Dorothy had a mysterious sickness, but when she went into the doctors they all kept telling her that it was in her head. Just to face it, "She was not 30 years old anymore" This made me very curious to think... What does a normal 30 year old feel like? I think it was around the age of 20 that I started telling myself the same thing... Well, I'm no spring chicken anymore! I just need to face that I'm getting older...  I remember high school, waking up around 5:30, walking to school for my 0 period at 7:00am... after classes came either cheerleading or track. After that, straight to Hot Dog on A Stick for work til closing, home for homework, bed and then back up to do it again. By my senior year in high school I had 2 jobs, just because... and still had time to meet Jason. (Of course, having 2 jobs was my only way of being out of the house past my 8:00pm curfew. hehe)  But I digress. Even after high school I remember getting up early to drive to the beach in Carmel before work to take pictures... I took classes in Monterey after work, and then slowly classes were replaced with naps and by the time I was 23 I remember leaving my work for lunch to go eat a sandwich and sleep at the cemetery around the corner... Luckily after that, it seemed like there was a cemetery within a block or two from every job I had.

    I was 25 when River was born, and doctors blamed everything on that - What do you expect, your body went through a lot of trauma, you nearly died, and you had a baby! ...of course your tired. The puking -- must be stress. Oh, and to think, all this time I could have been in bathing suits, hehe! It's just extra weight from the baby, you'll lose it - just work out harder.  Ahh, Ricki, Ricki, deer-eyed and dumb-founded, I followed... probably with a stupid smile on my face. hehe. jk. Anyways, I just thought I would share. If you take anything with you from this, let it be to know your body. Like they said on the Golden Girls, some doctors will blame the patient's mental health or what they think the "natural" aging (or a recovery) process is, if they can't diagnose you. They can make you feel guilty or crazy instead of just saying "I don't know" and refer you to someone who might.
    Dorothy did end up finding out what her mystery sickness was (Chronic Fatigue Syndrome) and Ma got her pussycat back... I love that show. As for me... still here, trying to stay afloat and upright for that matter. I have decided to cauterize my nose finally. Not because of the inconvenience or embarrassment, not because I am scared that I won't be able to stop it, not even because of the sharp-as-glass blood clots I have to grossly dig out of my nose every morning - very discreetly, because I know River would mock me) Nope, it's the smell that is making me nauseous -- and that is all I am going to say about that.

    Also, in keeping with the "Golden Girls" theme... I received my Medic Alert bracelet this week! Whoo hoo. There is actually a bit of freedom that came with receiving that - Both my cats have their security chips, and now... if someone finds me, I'll be reunited with my family too... Good things! On a side note, another "get out of jail free card" if I WAS a drinker... My medic alert bracelet actually says -- May appear intoxicated. Darn, could you imagine that... "No, no, ocifffferr... I haven't been drinking -- seeeeeeee my lil' bracelet thingy right here." (over exaggeratedly pointing at the wrong wrist and stumbling backwards) Man, one more thing wasted on me! hehehe... Oh, and the bracelet is green! And speaking of green, not so "Golden Girlish" I am reaaaaaally, really wanting to get a new tattoo to signify this journey, just a little one with a big punch - a green ribbon perhaps. :) and on an even more personal note, I did make a phone call yesterday as well (besides doctors and my mom - there really are no outgoing calls, I'm just to tired) Who did I call? I did it, I called my father, and I am proud of myself, even if it was for not, because I sang the "Happy Birthday" song and told him River's age now (har har, I JOKE -- I left it at Happy Birthday!) but I made the call. I don't know if I am doing the right thing by letting that relationship go... but again, I am just to tired, and I feel like -- well, I would rather use my bits of energy on those who want to be with me, people that make my days brighter... and people with English accents :)
     ...We only pass this way one time....

    Tuesday, March 2, 2010

    Lopez Tonight Photo Bombs!

    I just thought this was funny... I had gotten on to George's site to email his show on doing something on Organ donation? Why George Lopez? Well, a few years back George had a kidney transplant. Here is my letter to him: (I know... I have no dignity, but I am willing to do whatever it takes to get the word out)

    Ummmm... Ok, so I'm not very funny and I don't know how Mexican you would call me considering I named my son River (that was my funny... hehe) But the one I wanted to talk to you about anyway is ORGAN DONATION!! I am a 28 year old wife and mother who was born with Hep C. Recently I was told that within the next 2 years I will most likely die with out a life saving liver transplant. My liver is failing. 18 people die each day waiting for this 2nd gift of life... and the number is only growing. 3 years ago I had my one and only son, River, who also was born with the Hep C virus. Though I will be his greatest advocate to keep him healthy, if it comes down to the SLIGHT chance that he needs a liver one day too, I want to make it so that organs will not be in short supply. Please help me to get anyone who will listen to do so and Live Life then Give Life. Thanks guys!!!

    ...So far no response from him (awe) or Ellen tehehehe.