Wednesday, December 30, 2009


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!)
, 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! :)

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. :)