Just a quickie....

Just wanted to let you all know, we made it home safe and sound! A great Thanksgiving weekend with family....I may have gained a pound or two here! It was hard pacing myself...'specially when I have to go take a nap but I hear talking and smell goooood food coming from another room. Sometimes, it was to much to handle, and like my son, I would whip myself outta bed, hair disheveled, blankey wrapped tight, neck stretched out...what's going on out here? ((Pouty lip)) "I wanna come out and play toooo" hehe, but I did good (mostly).

Today, besides sleeping, I got a call from Dr Anderson (I still say that matrix style) and my ammonia levels have dropped by half and are almost in the "normal" range... I guess I can't use that as an excuse (right now at least) for being loopy sometimes. hehe. This is good because it means that the HE is being controlled by the Lactulose medicine that I take daily now, however, I am learning fast that Lactulose is not a cure all. (Thank you Craig! www.livingwithliverdisease.ning.com)

Tomorrow, Jason and I head on back up to USC for more testing... These should be the final ones (except the fun colonoscopy and psych) and as long as these come back good (no reason to think otherwise) I will be on the list officially. They just need to make sure I am healthy everywhere else before they waste a liver on me! sniff sniff. Cross your fingers and toes!

Turkey day update

Well, I just wanted to post a quick update before we head on out of town for the weekend. Love, love, love, the holidays... Even more so now because I get to see everyone all at once. (I can't "house hop" like I used to)
In spirit of the season, I would also like to give another big Thank You to everyone who has said a prayer for us, donated time and/or money, spread the word...Everything right down to the little comments left on my blog, keeps me fighting this! I am still amazed everyday at the generosity of everyone, even in these hard times...
Ok -- enough mush, here is the little update and then I better get to bed...We have a long trip in the morning! So excited to see family and friends! Not so excited that I can only do about one/tenth of what I wanna do...mentally. (I'll get used to it) So, as I said - I have very good news! I received a letter from USC stating that my case was presented to the committee and they feel that a liver transplant will improve quality AND quantity of my life (duh), and they feel that as long as the results come back good for the tests I was just scheduled for -- THEY WILL GIVE ME THAT CHANCE! This is huge because it not only means that they are confident that my life will improve and I will go from a life expectancy of 2 years to a possibility of old age! It also means that of the many tests they have done (Lab tests, CT scans, Echo cardiogram, X-rays, and an endoscopy) I have passed with flying colors (I am one healthy 28 year old) Now I still need a Psychiatry consult, PPD controls testing, Arterial blood gas tests, Colonocopy, Pap, and mammogram -- But if these ones come back good as well, I will be good to go! (I have no clue what a couple of these are...but I'll be finding out soon) All but the lovely colonoscopy will be taking place at USC on Tuesday, Dec. 1st.... Wish me luck, I'll keep you posted. Have a great Thanksgiving everyone!!

How to be Ricki's donor.

A very special person pointed out to me today that I have not mentioned how someone can go about being MY hero. Like I have said before, asking for things is not my strongest asset, but it is true... A surgery, a few days off, a little scar (err Hero badge) for someone will mean a second chance of life for me. A second chance, without pain, vomiting, confusion, exhaustion... basically a whole NEW life for me!
So...Here is the information.

RICKI's HERO MUST:

• In relatively good health
• Between the ages of 18 to approximately 55 (or in good health with no medical conditions)
• Must have blood type A or blood type O

That's it!! The last step if you match the above....

• Donor themselves must make contact with the live donor coordinator for more information, and to fill out questionnaire to see if they qualify. (This contact is COMPLETELY confidential - in other words, the donors coordinating nurse and I will never speak to each other)
• Donor coordinator contact: Janelle Newkirk, RN: (323) 442-5847

So I will pray for patience and put the rest into Gods hands now.

Please remember though, that YOU too can be someone's hero, if not mine....Please make it known that you don't want to take your organs to Heaven! Live Life then Give Life! <3

There is something wrong with Kaya!!

This morning (Ok, around three-ish) I woke up not feeling the best so like most mornings, I went into the living room to lay on the couch. As I lay there wide-eyed, I noticed something and began to panic. I was already feeling a little dizzy, but this -- this justified waking up the husband for (and River too). "Jason....Jason, come out here, there is something wrong with Kaya!" I said. He came out (last year...he would have been VERY upset by this...hehe) and started his inspection. He finally asked me what was wrong with him, to which I replied. "I don't know... He looks all fuzzy." I just couldn't put my finger on it... but something was just not right, my CAT was lookin' fuzzy.
I should have known that all was not right in the land of Ricki when before I even got out of bed, I looked at the clock, noticed light on the wall, and thought to myself-- Wow! Almost 3am and the sun is already coming up... It took a few minutes to sink in. Oh wait, turn the T.V. off and poof! Nighttime again. hehe...

So in case you have ever wondered why some days I'm here and some days...not so much, I go MIA when daily life gets a little ummm confusing. Which today seems like another one of them dayz. hump!

What's goin' on in there?

The other day, my mom said that I seemed more clear - alert. I agreed, I had already given River a bath, started the dishes, and when she mentioned it, I was wiping down the trash can with a Clorox cloth before I put the bag in. It was what I was doing right then that made me smile, because I was on a roll. I had taken out the trash, automatically cleaned the can and put a bag in.... 3 steps in a row that I hadn't completed so easily in months. These are the days I live for! BIG deal guys!!! - my head didn't even hurt with confusion. Lately, I have had to stare at each item for a second and then it clicks...What's this? Garbage bag. Where does it go? Garbage bag go herrre.
So below is my diagnosis along with MY symptoms (I took out the ones I don't have - please see the ALF website for a complete list) I have completed ultrasounds, MRI's, massive lab work, and physical examination for my diagnosis from multiple doctors now.

Ricki's Diagnosis and Treatment:

• Decompensated cirrhosis - End stage liver disease: means that the severe scarring of the liver has damaged and disrupted essential body functions. -- The reason? I was born with the Hepatitis C virus, I have high blood/iron levels, mixed together with shear luck of the draw! MELD Score - 15. Treatment options - Liver Transplant by either living or deceased donor with a blood type of A or O.
  

Ricki's whine fest.

• Fatigue and loss of energy
• Loss of appetite and weight loss (Kinda cool -- at first)
  
• Nausea / abdominal pain / Vomiting (This is what started it all last August - DAILY VOMITING)
  
• Spider angiomas - These are pinhead-sized red spots from which tiny blood vessels radiate. (I just recently, and very happily found out that these do go away, it just takes many months... Luckily when the ones in my eyes pop, it only takes a few days to go away, don't worry, I have found that not bending at the waist reduces the pressure that causes those to burst...Yaeh!)
  

• Ascites - Fluid buildup in the legs and feet (edema) and in the abdomen (ascites). Due to portal hypertension. (This so far has proven to be my greatest nemesis!)
  
• Hepatic Encephalopathy (Causes my confusion, irritation, lethargy, muscle ticks...)
  
• Jaundice. This yellowish cast to the skin and eyes occurs because the liver cannot process bilirubin for elimination from the body. (I prefer to call this color - tanned)
  

• Itching. Itching (pruritus) develops from buildup of bile products. (This just sucks)
  
• Easy bruising (This with the extreme tan look is what gives me the nickname BB...Bruised Banana)
• Excessive bleeding (This one scares my momma - even if it is just a nose bleed)
  
• Thinning skin (making it impossible to wax) and Thinning Hair :(
  
• Wasting (Malnutrition - This is what I find gives me that "models bone structure")

Ok, so what have we learned? One. Cirrhosis sucks. Two. Cirrhosis is broken down in two stages - Compensated and then Decompensated (People can live many years without even knowing they have cirrhosis) and Three. BE YOUR OWN ADVOCATE! Many people can slow, stop, and even reverse damage done to the liver! Transplant is the last option. I, for one, do not want to receive a liver ahead of anyone else suffering in need - I don't want to be part of the problem... the shortage.

I don't know... it's an update or a mission statement

Wow...this waiting thing is tough! I remember a few years back, when I had more energy, if I asked someone to do something and they didn't do it in MY time -- I did it myself! This has been one of the hardest, yet maybe one of the most humbling experiences so far. The fact that many things need to be done for me now, and I am at the mercy of others...If you know me, you know I no likey! But not for the reasons you may think. There are no pride issues here. Sure, of course I want things done a certain way and timely, but most of all -- I just don't like to burden anyone. (Picture Eeyore asking for help, that's me). But quickly, my freedoms are flying out the window (hehe dramatics) The most recent one -- I have sort of, kinda, been unofficially, officially relieved of driving duties. (I think it was USC's very firm request that I get a medicalert bracelet that confirmed it for Jason) Once he knew that it is a possibility with my ammonia levels rising that I may become disoriented at any time...ya.
So most of the time, River and I shuffle back and forth between my moms apartment and mine. It leaves me with a lot of thinking time. (Unfortunately, it is usually the same things over and over because I forget I resolved the issue already. lol) It is even harder with the HE (Hepatic Encephalopathy) to stay focused... But I wrote them down. Well the ones I could remember at 4am.
~~The first...I am not sure who is aware, but I have some AMAZING people on my side, and a few really awesome events that they are throwing in my behalf. This brings me to my introduction... asking for help. One of the people who has put most of this in motion, my Aunt Bev ((props)) said something to me the other day that I am going to have to agree with and mention here... It is true, that I do not like to ask for help, but - and this is the biggest but ever! I will fight tooth and nail for my son.... and my son, needs his mother. I will fight for that. I joke about being dramatic, but this is not. The more research I do, the more I worry about my time. Unless I fight, I could easily be one of the 19 people that die daily waiting for my second chance. And I have to make it through this battle, because for me...this is just a battle. My war is on Hepatitis C, Cirrhosis, and Organ Shortages. I know it sounds big... But those are the bases I must cover to keep River safe (well, his liver anyway)
Hmmm, I guess I kind of rolled all my thoughts into one, at least the basics. Oh yes! Which brings me back to the AMAZING people!! I know it is another topic I am probably beating to death, but really! It's redonkulous! I don't know how I got blessed with sooo many living Angels.
These angels include my little sister Rylee and a friend of hers Kelly, who have put together a benefit for lil' o me here in Fullerton. (*click here to go to facebook link* for more info) I know that they can use donations, volunteers, items to raffle....etc)
In February (for my birfday...hehe) My Aunt Bev, has put the wheels in motion for a BIG BIRTHDAY BASH/FUNDRAISER for me at the Highlands Inn, Carmel. In Salinas, my mother-in-law, Rhonda is finding ways to raise funds too... (more info on those to come) It is amazing and oh so needed, but the most amazing thing of it all... Is that there is at least 1 person out there that will become an organ donor and SAVE up to 8 lives now because of us! Yes, US! Muwahaha, you didn't even know when you started reading this that you were binding yourself to my cause...hehe, you too must go and spread the word on being a donor now!
Don't take your organs to Heaven, Heaven knows we need them here! :)

Lord....Make me Sally!

These last few months have gotten more difficult, and every new level of lost energy is ten times worse then the last! I'm losing all my spoons here people....and my mind is going with it. In my mind, I want to do things, but my body -- that is a different story. My life right now, consists of small snip-its of energy, and some serious frustration in between. (and I'm a lucky one) But hopefully, soon I will be able to do the things that most everyone else seems to do effortlessly....Soon, I will be SALLY!

Sally! I am jealous of a cartoon car! My Three year old has affectionately nicknamed me Lizzy from his favorite Disney movie, Cars. Though I think it is clever and cute, it hurts my heart when he is disappointed that I will be Lizzy in a race. "Why can't you be Sally" he asks as he gets ready and "revs" his engine. I explained to him that it will be a while...but I will be Sally soon. Doc Hudson has to replace my engine and then I am good to go! This answer seems to suffice, because now, every time he asks to race me, he lets me know that it is OK that I am Lizzy, "Cuz Doc hasn't given you your new engine yet, huh? -- but then you will be fast like Sally, right?" :) So I "putt putt," out the door, shakin' my caboose and slowly run down the sidewalk, while River does circles around me.... Collision diverted! hehe... Oh what the neighbors must think.

Angels EVERYWHERE!!

Maybe it is because I am so openly vulnerable right now, but I prefer to believe that I have been sent many angels to get me through this time. (...He may be getting a little sick of me) But today, as I got on the computer and saw that donations to help pay for my transplant are over ONE THOUSAND DOLLARS! It really sunk in that it is going to be a long road, but we can do this!! I cannot say enough about my closest angels, those who are there day in and day out... But right now, it is the ones I'll never meet again and the ones I don't see everyday that I want to thank. Let me 'xplain.

Recently Jason and I went to The Slidebar for dinner... It was the second time in a row that I had gotten sick there (BEFORE we even got our food) I went to the bathroom and started umm...(in the words of Rylee...) Worshiping the porcelain god. I thought that Jason had sent someone in to check on me because right on que, I heard, "Are you Ok? Can I get you a glass of water?" When she came back, I opened the stall door and saw that she didn't even work there. I thanked her and apologized..."I get sick a lot" I told her, and as she smiled and said she understood, I realized that she was wearing a wig... a glass of water and piece of gum from someone who truly understood... What are the odds of that?
~~By the way, dinner was great. I got back to our table, Jason and I talked and listened to music. I ate my lettuce wraps, creme brulee for dessert and kept it alllllllllll down!

I met a man at Target who (for some odd reason) I shared that I needed a transplant with him. He then pulled his shirt down to show a massive scar down his chest. "I'm on my second life too" he said excitedly, "You will be fine!" ...I left Target happy. I believe him too!

Larry has now been prayed over at family dinners, churches, doctors offices, (although it worries me when one of my nurses asks to pray with me...hehe) And yes... it is a long story, but even in front of Disneyland in our pirate costumes. I have been told recently that I am an inspiration, a fighter, brave, and skinny... and lets face it, who wouldn't want to hear those words. Complete strangers are praying, holding fundraisers, donating, spreading the word on Organ Donation FOR ME... in other words ~ giving me hope, strengthening my faith in the world... so if you have not yet realized, I am thanking YOU! :)