Wednesday, December 30, 2009

Mugshot


Well, since I had made the comment that I don't mind what I look like, I guess I will post why I haven't done much lately....and a picture just for visual effect -- no, that's not Octo-mom, lol (I know, don't flatter myself) But I imagine that this is what Botox looks like -- in the nose and under eyes, if for some reason you were thinking about getting some there.
I had also not been taking my Lactulose for a few days - I picked up the prescription Monday. (errr... maybe I've been out since lil before Christmas) and have really been noticing the effects on that these last few days... and so has River. At 3 years old, I can already see him looking at me like a crazy mom from the 50's that can't figure out how to turn on his electronic toys.... It's very frustrating for ALL of us, and I have been forced to watch kid cartoons for days now on the big T.V.
I feel like I am bringing my health issues up way to much... but it really is hard when I look in the mirror and see this "new" me, or when I reach for something and Larry drop kicks me in the side, or I walk straight into the door, or forget how to open them (for that matter) NOT to be reminded of this crappy situation! However, I also know... Wow, it could be so much worse. I am even glad in a way, that I notice my ammonia levels have risen right now... because that means, I'm not so far gone that I don't realize I'm looney.... Or, God help the people out there who don't even know why they are experiencing this. My rising ammonia levels have caused such confusion in me, it has caused low self-esteem in a job that used to be so easy to grasp for me, cooking, crafts.... things I used to enjoy are foreign to me now. I also notice that I experience something similar to Roid-rage now... well for me, it feels like rage... it may look more like one of the chipmunks throwing a fit.
But... the holidays are over, the meds are REALLY kickin' back in and I have a lot to prepare for so I have got to snap out of it... Who's coming to pick me up?? :)

Tuesday, December 22, 2009

Body Ego - 0 (but apparently, I'm "OK" with that)

Luckily, I place outer beauty lower on my priority list, because someone a little more "body conscience" would leave every one of my doctor visits crying. Let me 'splain with some examples that I have heard within the last few months. Mind you, these are health care professionals.
  • "Ewe, what concerns me is the texture and how small Larry is" (Ok... he didn't say Larry, but there was an "ewe")
  • "You look pretty dry"
  • "Hmmm, I don't usually feel the kidneys from the front...but your so thin and squishy." (I shit you not on that one. LOVE THIS DOCTOR. (really - he's a good doctor, and thorough)
  • "You have a fat throat" (And now I realize that out of context that sounds disgusting, but I promise it was completely relative as I was getting an ultrasound of my thyroid.)
  • "When are you due" (haha... stupid ascites, never creeps up when there is Maternity parking out front!)
  • "Once you have your transplant, you won't have that strange tint to your skin anymore" (Hey... what strange tint? haha)
  • "Oops, I thought that was it, but it was just a whole lot of scar tissue" ...I won't mention the "it" she was referring to - but apparently, I don't have one anymore. Just one more of the many things missing.
  • "Wow, what is all this scarring from?" (Yes, techs AND doctors have actually said WOW when they see my battle wounds. Luckily I am a weirdo, now gaining some pride in these -- Like my tattoos. (Ok, that is overstating my enthusiasm waaay to much - they are UGLY - but there is nothing I can do about them, so I wear 'em with honor and Bad-assness!) I admit, I am also someone you would see saying, "That's nothing, check this bad boy out!" Although it pains me to think that my bikini days ended early.
Awe, well I am sure I made you laugh, you monster! hehe. All in all yesterday was actually a very good visit. I don't know why I was so worried about the psych consult... I was scared that he would see something in me (a weakness or something) that I was unaware of. Something that would be a sign to him that I wasn't strong enough to go through this, or recover after. It sounds strange, but I figure that someone like this sees a lot of transplant patients, some successes, some not... Is there a secret to those that do well? (besides the medically obvious), a quality they possess? How am I really handling all of this? Strangely... I will now think of Dr Cobb as the nice cookie lady in The Matrix...hehe. He set my mind at ease and I left feeling right as rain. What did he say, you ask? ((Still smiling as it echos in my head)) "What you are facing is going to be extremely difficult, but I have no concerns that you cannot do it -- My only concern is keeping you down long enough to recuperate after the surgery!"
YES. I could've kissed him - He even started the statement with one of my faves "Look, I'm not going to sugar coat this...extremely difficult... yada, yada, yada... you can do it!" ...REALLY! That was it, in a nutshell.
Oh yes, maybe someone can spread some light on this thyroid thing... I'm not to concerned, but the tech said he saw a few cysts or nodules on the left lobe of my thyroid? I'll keep you posted, but I have a feeling my thyroid is no different then a lot of other stuff in my body... There are simply some strange things growing in there. (That is my personal medical opinion and I'm sticking to it!)
Ok
, I had to post that before I try and get a little more sleep this mornin'. Finally getting out of the house today... It has been a while since I have not being chaperoned for an appointment, or groceries by my hubby or dad...It will be just us girls chattin' n bakin' for Christmas!!

Wednesday, December 16, 2009

Correct Live Donor Contact

(...Pay no attention to the incorrect phone number
on the pretty banner to your right!>>)

Hi Ya'll, I got a phone call from USC yesterday... It seems that the paperwork they handed out had the wrong contact number for the USC live donor contact, Janelle.

Here is the correct phone number if you would like more information on becoming my hero, and sharing a lil' sliver of your liver with me! (say that 3 times fast..hehe)

~~Janelle Newkirk, RN (323) 442-7403~~


Thanks guys and remember to LIVE LIFE then GIVE LIFE! Your organs can fertilize the ground, feed cannibals, or CHANGE THE LIVES OF HUNDREDS! Choose to be a hero.

Friday, December 11, 2009

Well it is 4am and besides Larry feeling a little beaten up, I feel wide awake... OOhh, I should organize something, actually get the Christmas cards out I bought LAST year... just thinking about all of the things that have fallen to the wayside makes me kinda sleepy again, and after actually getting out of bed, I realize that I didn't have that much energy after all. This last week has been a tough one. My tiredness, sickness, duration of sickness, and pain has all steadily increased over the last few years, but this week -- I literally cried getting out of bed, and it scared me, because I thought to myself, is this it? But then I woke up yesterday with a fever... and sighed relief. River was sick last week. I most likely just caught his cold, but I'll keep an eye on it. It is hard when I look in the mirror and see dark sunken eyes. I look frail and tired and can't seem to stop the flickering thought that this could be my last Christmas... or one of them. I just wish I had more energy, what will River remember? I want to bake cookies, and go to candycane lane. I want to stay up late with cocoa and watch It's a Wonderful Life, make ornaments and wrap presents... I barely remember waking up without sickness, pain, or exhaustion. When I asked my doctor if after my transplant I would at least feel like I did before last year, and he said, "Ricki, I have no reason to believe that you won't feel better then YOU have in many years." --Whenever I feel like I can't take much more...I think about that! :) On a side note... I think that because of my sickness, Rivers future wife will thank me. hehehe... A heart of gold this one!

Monday, December 7, 2009

USC Testing - Day 2


Fighting through rush hour traffic on our way home from USC... It was another very long day. The good news - I got the results back from the PPD test, No Tuberculosis for me! Yaeh. :) Bad news... not really, but what should have been 1 or 2 days of testing has turned into 3 days because my transplant team scheduled me for a mammogram at a time they weren't even open. So now I have to go back again... When they told me I had Cirrhosis, I said, "Ok, What do I do to fix this." but when they tell me they mixed up my appointment, the waterworks start. I don't cry about much... but that was TO MUCH TO HANDLE! hehehe.
Yesterday as I was decorating the house for Christmas, and had the carols going... "Feliz Navidad" dododododo..." the Garland did me in. Trying to reach the nails on the wall... It was a challenge I would have mastered a few years ago, but now, I cannot jump up on things or even reach for that matter, without some reminder from Larry. I had a sharp pain, flinched a little, and the garland went down (along with my spirits ~awe~) More waterworks...Luckily River came out and said "Ooooh, How cute it looks" (really - he did) and lit the fire back under my butt. My husband followed suit and once he saw my watery eyes, put the rest of the hangin' stuff up for me - which I have never been able to get him to do in the past! So yesterday was a great day, and even though I cannot do everything I want to do - I can still do enough. Besides, I'm sure River doesn't mind that our homemade tree garland only fit around our heads :)

Wednesday, December 2, 2009

USC testing - Day 1



It was another full afternoon of testing at USC... Some strange things they do to you in there. After a nice long wait, my first test was a set of 3 injections under the skin (PPD) PAINFUL! While she was injecting the fluid into my arm, the skin starts to raise from the liquid (and once I found out that it was normal) I went into conspiracy theory mode (just for fun) What if this was like the matrix and green numbers started spreading from the 3 new bumps on my arm... What would this lady do if alien tentacles started coming out of these things and I started screaming "Get 'em out!" and then ((reality)) I look up and see the lady looking at me, because I am half giggling now at my imagination... These people probably think I'm crazy! So I looked down at 3 pea sized (now blue with bruising) bumps on the inside of my arm...still bleeding a little as we head on over to the other side of the hospital for more tests.

Blood Gasses - I will say that I have never had a problem or even a chill about them taking blood from me (I only hate shots)...Until now. They take it veeeeeery slowly, NOT with a butterfly needle, and from the artery in the wrist. "Hold good pressure" he said after - "We don't want it to look like a murder scene in here!" hahaha. Another test down, (along with the sun) one test to go!


The Ticker! The easiest test, the only one that isn't supposed to hurt, and they guy hurts my feelings... "What is all of the scarring on your abdomen from?" (pouty lip) He should have topped it off with "You gonna have more kids??" and then stabbed me in the heart he was testing! Waah! Thanks a lot buddy... OH YA! Where's all the hair on your head, huh?!! haha (Ok, that was mostly said to be funny, but really... why?) Anyways, he was actually very nice... and my ticker is tip top! :)


Next:
Round two testing - Friday, December 4th. Another 3 tests, 2 hours driving (Ok...riding), and 1 VERY sleepy n bruised girl.

Main concerns:
Jason taking yet another day off.
My share of cost... Unlike St. Jude, USC will not accept many payments, so my monthly $1257.00 is pretty much due in full at time of "service".
These next test results, (I could still be denied a transplant if any results come back negative.) Although, besides Larry, I think I am pretty healty... almost like someone in their 20's even. :)

Monday, November 30, 2009

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!

Wednesday, November 25, 2009

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!!

Thursday, November 19, 2009

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

Tuesday, November 17, 2009

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!

Sunday, November 15, 2009

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.

Friday, November 13, 2009

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! :)

Friday, November 6, 2009

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.

Sunday, November 1, 2009

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! :)

Tuesday, October 27, 2009

Orientation Day











Our big day started at 6ish yesterday morning. Around 8:30 we were called into orientation, where they briefly described the anatomy of a liver, what a transplant consists of, and of course chopped down the entire rain forest to supply me with the amount of paperwork I got... including my "GOLDEN TICKET" (A.K.A. the boarding pass that every specialty doctor, social worker, financial and nurse cordinator had to sign off on). We then started musical rooms, switching back and forth with the other patients (talk about making you feel like you aren't alone... to them transplants are an everyday thing).
They went over the basic things I can and cannot eat, drink, or take medically. Dental work and tattoos have to be pre-approved by my team of doctors, and blood tests taken to see if I need a platelet transfusion first. They gave me my order form for my MedicAlert Bracelet, gave me contact numbers, recipes, and idiot proof pictures with big "X's" over words like Aspirin, ibuprofen, alcohol and salt. Then told me about the patients they have upstairs - they can't move, some can't breathe on their own, they have had their stomach drained repeatedly, they are vomiting blood, and they -- they are still waiting for new livers having MELD scores of 25 and above.
There was so much information, but here it is... (summary style) my MELD score is 14 (as of July's lab tests), and unless USC sees a mass -- which as of today I have NONE! I will get progressively worse as I climb the MELD score ladder, since there are just not enough deceased donated livers to go around. So unless i want to get sicker and sicker I am going to have to start making travel arrangements to regions able to transplant patients with Meld scores as low as 14.
The surgery is going to be tough, and though statistics are great that I will survive, there is a chance that my HCV will come back with a vengeance and destroy my new liver within 5 years, also, a risk that I will lose the new liver to rejection. They are very concerned with my tumor marker levels and will continue to do CT scans every three months until either a mass is seen, I receive someones precious gift as a living donor, I reach the top of the list...or God forbid, until I glow green from all of the dye they put in me (hehe). Secondly, they are very concerned with the amount of weight I have lost in the past 8 months (70 lbs). The doctors want to get to the bottom of it to control and monitor it.
So in a nut shell, I need a new liver, there are no visible cancer tumors, and without a living donor I will probably be flying to Tennessee (where patients don't have to be bleeding from their eyes to get a new liver).
So until my next post, when I hope to inform you more on how to be a living donor, who qualifies, and what my blood type is... hint, hint :)

Sunday, October 25, 2009

Bad BLOGGER... Good LIVER!

video

No pun intended...hehe! Well here are a few pictures of our last few adventures...and the reason for my lack of blogging. We had the family in town for a few days... I've been makin' ribbons, and we've been enjoying Halloweeeeen time! Now, that may not seem like much within a few weeks to you, but for me -- Pre-napping and the downtime after takes a lot out of me... and that is only IF I am not to sick to go in the first place. Blah! But, as you can see by our pictures.... It is worth it!
I have also been swelling quite a bit lately -- maybe it's all the crazzzzy partying I've been doin'! Lol. (The waitress at the restaurant/bar last night even made a point to mention that --The Shirley Temples cost the same as the alcoholic drinks (Psssh... Give me 2 cherries then!) hehe.
Anyways, where was I... Yes, swelling, nausea, vomitting and the most extreme exhaustion EVER! I was tired when I was pregnant, I was exhausted after my 3 surgeries and having newborn-caused sleep deprivation....but this! I can't explain the lead in my veins, and the anticipation of not feeling this is already getting to me. I haven't even started my wait yet (technically, but I have been waiting to really wake up and live for years!) Which brings me to the most recent and IMPORTANTE` news!!
USC Called me Friday mornin' and rescheduled my appointment for THIS monday! October 26th. Why??? You ask...well, I did. No reason...they just had a cancellation. hehe. SCORE.
So, after a weekend with the family and makin' ribbons, and then a weekend of Halloween (Disney...and NOT so Disney) parties -- I will be filling out my medical history (repeatedly), gathering all my medications, not sleeping, and then -- with a few members of my "support team", our sea of questions, and sack lunches; we will be heading out to USC at 6AM tomorrow morning! We are one step closer to no more pain, vomiting, dizziness, lack of appetite, swelling, confusion, depression, bruising, forgetfulness, and constant napping!! Watch out baby!

Thursday, October 22, 2009

Larry's story


Click on Larry above to name my new Liver and view important liver news.... There is also a link to the right hand side.

Sunday, October 18, 2009

Bored anyone???

So.......what do you guys think of the new layout?
Tried to make it a little more navigator-able (<-- my blog - my made up words)
Jason said he might work on a lil' something special for the Title border and I'm checkin' on fixin these strange yellow butterflies, but I like it.
Just for grins and giggles, lets see if the comments work by leaving one, huh? hehe...

Wednesday, October 14, 2009

Ribbons, Ribbons, Get your green Ribbons!












Well, I am sure you can see by the pictures that it was a busy day for me, and I am pooped...My first stop -- Pick up lab slip to take down to get MORE blood work today; Where I was greeted with a, "Hey, sexy momma" (Yes they share my sense of humor at the doctors office, and she was rubbin' da belly, laughing as she said it) ...Uh huh, Ascites -- still present aaaaand slightly visible. Anywho, then a trip to the local walmart (hehe) for my meds, which, THANKS TO YOUR DONATIONS WERE PAID FOR ME! Also picked up some more green ribbon, then it was off to mom's to help Rylee and Bryan with the first set of awareness ribbons!!! A few bloody and errr...glued fingers and I think we got it down now -- Mean Green Ribbon Machines. (dude, I crack myself up)
So please everyone, if you see Rylee out there with her green ribbons, stop - donate - and wear one...Don't hurt our feelings, a lot of blood, sweat, and River's tears went into making these. (He didn't get to help as much as he wanted :( hehe)
All and all, besides dealing with one little prick (...which you're bound to have once in a while. tehehe) it was a nice and productive day. ;)

Saturday, October 10, 2009

Our Journey

video

**For some reason you have to click the little sliding thingy next to the "play" button to get it going...Maybe someone can help me with that**
Our reason for keepin' on....

This year has been our toughest to date. Earlier this year, we got the news that River too was born with the Hepatitis C Virus. And though his chances of developing Cirrhosis and ESLD are 20-30%, we will be his biggest advocate...diet, monitoring, prayer, and the faith that God and Science will have a cure for this disease that has already affected three generations of our family. It was only months later that we found out that my liver is failing. Though my energy levels are low, my spirits are high, and we are moving full force ahead, because this is not only a fight for me, but a fight for anyone waiting to start living...for my son, for anyone's son or daughter who God forbid may need a transplant in the future. Our decisions now can give them life later!

Tuesday, October 6, 2009

Big News! Big News!













I finally got the call from USC this afternoon! YAEE! Tuesday, November 10th is my orientation...8:00 to 4:30...bring a snack she said. Humm, they don't know my family....I'll take my picnic basket (just to be safe) hehe. They are sending a packet in the mail with all of the information, but she did say that I will meet the surgeons, dietitian, financial coordinator *gulp*, and take a tour of the hospital along with all of the routine tests...
Speaking of poking and prodding the bruised banana... It had been 6 weeks since my last AFP tumor marker test. And so time again. (We are prayin' for declining numbers here people!) I took Rylee in with me today and we snapped the above pictures. These are just my normal days now...between River and family, napping, research, bills, coordinating appointments, and more napping... Ahhhh... I am just lucky to have such an amazing support team!! (I feel that I should say --I am in no way mentioning the above in hopes to persuade someone from UNOS, that I am going to be the PERFECT transplant candidate... hehehe... awkward silence)
But anyways, I just wanted to let you all know the big news...and share some goofy pictures. I love my lab techs in Placentia. They seem to have my kind of humor and are always up for anything. We decided against snapping one of the other bloody sign that said "butcher shop" -- Sooo tastless.
The nerve of some people!! tehehe :)
So, we are rollin' right along now....Good things.... :)

Monday, October 5, 2009

Maybe the Dingo ate yo' baby!

Well I thought I would post a little update... No, you didn't miss any postings... I am not 5 months pregnant. Although the first time it happened, I looked a few more months along, and I admit, I was tempted to find my old maternity clothes and prance around town! --go park at Babies R Us and do some window shopping...hehe.
Anyways, I have not heard any news from USC and am starting to get frustrated. Tomorrow I go back in for my 6 week Tumor Marker blood test. I have a good feeling about this one!...All of this extra praying going around. We have also raised over $570.00, almost enough to cover my first out of pocket portion for USC, without emptying mine! Good Stuff. Hopefully I will be able to get this swelling down without having to go back into the E.R. (Yippie) I'll keep you posted.

Thank You! Thank You!

To my first 3 Donations over the weekend!
Every single penny is appreciated!

Thank You Joseph and Rhonda Albertoni
Thank You Jesse and Amanda Rocha
Thank You Diane Tye

With these donations, Jason and I are no longer worrying whether or not I will be able to schedule my first USC appointment. When they call this time and inform us again of the up-front fees (which they will) We can say with all confidence that we will NOT need to reschedule this one!

So Thank You again!

I also want to give a special thank you for all of you who are praying for us and those of you who have sent words of encouragement. I keep every single one of them and (sit and toot my own horn) when I am really feeling down. No, but really, it means so much! And for those of you who worry about what to say, just remember....The worse thing you can say, is nothing at all...
God Bless! Live Life *then* Give Life!

Friday, October 2, 2009

Costs of Transplant and After-care

The cost for a liver transplant surgery starts at about $500,000."

Liver transplant
http://www.enlmedical.com/article/003006.htm

ENLMedical separates transplant costs into five parts:

"Surgery charges can be separated into five parts: 1) the surgeon's
fee, 2) the anesthesiologist's fee, 3) the hospital charges, which
includes nursing care and the operating room, 4) the medications, and
5) additional charges.

1. Surgeon's fee: variable
2. Anesthesiologist's fee: averages $350 to $400 per hour
3. Hospital charges: basic rate averages $1,500 to $1,800 per day
(more for the intensive care unit (ICU) or private rooms)
4. Medication charges: $200 to $400
5. Additional charges: assisting surgeon, treatment of complications,
diagnostic procedures (such as blood or X-ray exams), medical
supplies, or equipment use."

Liver transplant
http://www.enlmedical.com/article/003006.htm

------------------------A F T E R * C A R E * C O S T S--------------------------

Anti-rejection medications, which the patient will require for the
rest of his life, are not included in this figure. Such expenses can
reach more than $21,000 annually:

"According to the United Network for Organ Sharing (UNOS), estimated
charges for liver transplantation are:

Estimated First-Year Charge (1996 dollars): $314,600
Estimated Annual Follow-up Charge (1996 dollars): $21,900

Following your transplant, you will need several drugs, called
immunosuppresives, to sustain your transplanted liver. The
immunosuppressive medications may include Neoral, Cellcept, Prograf
and Prednisone. The following are estimates and depend on the dosage
and pharmacy used. Note that most health plans pay a percentage of
medication costs, as described in the next section.
# Neoral or Prograf: Total monthly cost is approximately $1,200
# Cellcept: Total monthly cost is approximately $800 (required for
first three months only)
# Prograf: Total monthly cost is approximately $1,077
# Prednisone: Total monthly cost is approximately $12
# Acyclovir or or Cytovene: Total monthly cost is $100-$1,500
(required for first two to three months only)
# Nystatin: Total monthly cost is approximately $200 (required for
first three months only)
# Prilosec: Total monthly cost is approximately $300 (required for
first three months only)"

Transplantation costs
http://www.cpmc.org/advanced/liver/patients/topics/finance.html#Transplantation%20Costs

The National Transplant Assistance Fund provides the following
breakdown for charges billed in the first year after a liver
transplant:

Evaluation: $16,100
Candidacy (per month): $9,600
Organ Procurement: $26,900
Hospital: $121,600
Physician: $32,500
Follow-up: $48,400
Immunosuppressants: $12,800
==========
TOTAL: $267,900

Average Estimated Charges Billed During First Year Following
Transplantation
http://www.transplantfund.org/homepage2.html


As with any surgery, recovery times vary from patient to patient,
based largely on the patient's age, how sick they were prior to
surgery, and how complicated the surgery ended up being. Tufts-New
England Medical Center puts the average hospital stay for liver
transplantation at about three weeks:

"The length of hospital stay after surgery largely depends on a
recipient's condition prior to transplant, but is typically three
weeks. Individual patients' circumstances differ after liver
transplantation, so during their final few days in the hospital,
Tufts-NEMC's transplantation team devises a customized outpatient
program for each patient.

Liver Transplantation
http://www.nemc.org/surgery/html/trnsplnt/tpliver.htm

A study published in the Southern Medical Journal puts the median
hospital stay for transplant receipients between 10 and 20 days:

Thursday, October 1, 2009

The road that brought me here (medically speaking)

Well, It is 5:00am and my back is killing me (well...technically my liver is killing me) ba dum dum.. just kiddin' ma.
Anywho, I started thinking that my new "peeps" might want to know how this all came about...so I figured I would do a little post...If anyone finds out, please let me know. (ahahaaa! I'm cracking myself up) No really, just venting...and kind of shows the warning signs (mine atleast) This was by no means a sudden attack on my body.....{Fade out} hehe so dramatic.
It all started on a snowing day in February - 1981 (I'm sure it was snowing somewhere) hehe.
Ok seriously, It really does start with my birth, since doctors assume that
--
I was born with hepatitis C. [A blood-borne virus, that causes inflammation of the liver. It also causes end-stage-liver-disease in 20 - 30% of patients] <-- I'm in that group.
--Side note: from infancy to toddler hood, if I cried hard, I would turn blue and pass out. (May be important if Dr. House is reading) Not good for spanking...hehehe sucka's.
--When I was 7, though I remember the pain like it was yesterday...I was sitting down in the living room, when I got a horrible crushing pain in my chest. I started crawling over to my mom (scared the crap outta her) but passed out halfway and peed my pants. Blood work, spinal tap, and EEG: All normal.
Due to YEARS of unexplained stomach aches and the onset of depression at 12, I was finally diagnosed with non-hepatitis A/B...(Now called...you guessed it -- HepC)
...more tummy aches and yearly testings.
--At 20 I decided to be pro-active and start treatments of Interferon injections 3 times a week (similar to chemo) and Ribaviren. It was a year long battle that proved unsuccessful for me...and delayed my spring wedding until July. Liver biopsy showed no signs of cirrhosis.
--At 23, due to the same ol' stomach aches and a new unbearable one, I went into the doctors again...where they found a rupturing appendix, gallstones, and ovarian cysts.
Surgery to remove the appendix was done immediately, surgery to remove the gallbladder, 6 weeks later - where the doctor said I had scarring so bad it was like an old man (no offense old men)
--At 25, I was 9 months pregnant with our son, River. I had gone in for my check-up and for the 3rd or 4th time in a row, my blood pressure was high. Besides an early Placenta previa scare, the only problems I had during pregnancy were the gnarly side effects. But I was taken into labor and delivery where I was induced (April 12th, 2006) On April 14th, 2006, my Booga was born. They opened up ap pinata on that day my friends and found a 9 pound boy along with... Placenta Accreta, Pre-eclampsia, HELLP syndrome, and the dooozy...DIC. After the C-section, partial hysterectomy, and then on the 3rd day....a 3rd "exploratory" surgery, I was in the clear...I woke up a day or 2 after Easter to the most beautiful (1 week old) miracle! There was no explanation of why it happened...until now.
--About 1 year later I went in because of chest pain....maybe it's your asthma, or scarring from the pulmonary emboli (blood clots in the lungs) you had after labor...nope, A little heart defect - Tricuspid Valve Regurgitation. A second disease to monitor yearly.
**Blood tests for liver always fine or slightly elevated.
--3 years of exhaustion, pain, nausea off and on and in Sept. of 2008 I went in due to daily vomiting. The doctor prescribed me anti-anxiety meds, and I quit my job for a less stressful part-time job...All of this did not stop the vomiting and increasing "funk" I was in. I went back a few more times...changed my medi-cocktail up...but nothing worked.
--Finally, in May of this year I went into a walk-in clinic and saw a PA who ordered an ultrasound on my belly (Why did I decide to go to this clinic? jusssst for the heck of it while I took my sister in for an infection.) What they found was Ascites. In June, I had my first visit with Dr. Jamal ( A great doctor A.K.A. The bearer of bad news) where I was told I have De-compensated Cirrhosis caused by HCV. As of now, they cannot explain why my liver scarred so quickly, the only thing they have found so far is that my Iron saturation levels are at 85% (as opposed to less then 35% normal range) I am the 2nd youngest transplant patient my doctor has ever had...And that my friends, brings us up to date (I think). And now...I'm going back to bed, I've pooped myself out and the sun is now up.

Sunday, September 27, 2009

Remember Me By Robert T. Nest


To Remember Me
The day will come when my body will be upon a white sheet neatly tucked
under four corners of a mattress located in a hospital; busily occupied with the living and the dying.
At a certain point a doctor will determine that
my brain has ceased to function and that, for all intents and purposes, my
life has stopped.
When that happens, do not attempt to instill artificial life into my body by
the use of a machine. And don't call this my deathbed.
Let it be called the
bed of life, and let my body be taken from it to help others lead fuller lives.
Give my sight to the man who has never seen a sunrise, a baby's face
or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but
endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of
his car, so that he might live to see his grandchildren play.
Give my kidneys to the one who depends on a machine to exist from
week to week
Take my bones, every muscle, every fiber and nerve in my body and
find a way to make a crippled child walk.
Take my cells, if necessary, and let them grow so that, someday a
speechless boy will shout at the crack of a bat and a deaf girl will
hear the sound of rain against her window.
If you must bury something, let it be my faults, my weakness, and all
prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.
If by chance, you wish to remember me, do it with a kind deed or word to
someone who needs you. If you do all I have asked, I will live forever.
written by Robert N. Test

Wednesday, September 23, 2009

The latest info


So, here are my most recent projects...Above is the beginning of the bills, lab results, medical instructions, and release forms that really need to be organized, and my regiment of meds. I am mainly documenting this because right now, though I am on a few meds and vitamins already, I know that within months this can change. Eventually my medication costs will be averaging over $10,000.00 a month...(yes...month) This is of course if I am blessed with a second chance of life. I know that a new liver for me is in no way a right, it is truly a gift!

As for the latest scoop. I did receive a call and letter from USC, stating that my financial information is being reviewed as we speak, (gulp) and I should be receiving a call for my first appointment by Monday.
(Just a side note: When you call the USC Transplant center, the automated voice says, "For kidney transplant, press 1. For Liver transplant, press 2....." and so on down the body. It gets me everytime.)
Today, my swelling was good, slight pains in the kidneys seem to be better and I don't think I have bumped into a single wall today!
Tumor marker decreased slightly (which is encouraging, the doc said)
Ammonia levels are rising - Hepatic encephalopathy - (which means I am only gonna get loopy-er)
Kidney function is decreasing slightly (double gulp)

So that is it for now....Except, in the near future we will need to start fundraising to help with costs, as of right now...my medical share of cost is $1257.00 MONTHLY. that is over $20k yearly out of pocket minimum. So, if any one has any ideas. I am looking into the NFT - National foundation for transplants for some help with this but if ANYONE has any info on fundraising organizations or even ideas for fundraisers, please, please let me know!!