Friday, June 25, 2010

Better Days :)

There have been some better days this last week or so... a few days of normalcy mixed in with many days of anticipation on my life to come. My boss from my previous job (On The Go Transportation) gave me and Jason some awesome tickets to see Sting play with the Phil Harmonic -- Orchestra seats. We were so close you could see their music sheets. lol. (lookin' pretty good after that 3 hour nap, hehe) All I wanted to hear were a few songs from his "Police" days and I thought I would be happy, but I ended up falling in love with every single song he sang! Just amazing. (Then I had 2 bites of the bacon wrapped hot dogs that the street vendors sell with sauteed veggies... OMGahhhh. I could have eaten the whole thing (If you have never had one of these - don't, because you will actually crave these for the rest of your life... and come on, "bacon-wrapped" anything just screams ascites build-up) hehe. Jason had no problem with helping me control myself... by devouring my dog!

This Tuesday's USC appointment went smooth. They added one more medication for my "brain fog" and LOWERED my diuretics... yup, see someone's been doing pretty dang good with her sodium (that'd be me - and this is good because less diuretic means less stress on my lil kidneys) :). They still had no news on when my surgery date was now going to be, but they said they would have the answer by Wednesday (and they did). It was very hard for me when they told me that the date was being changed because of conflicting O.R. scheduling... I started thinking that maybe it was a sign. If things started falling apart, maybe this wasn't meant to happen at all. But the next day my mind was put at ease when I got the call... the date had been moved up 2 days to the 13th, that's it. Phew! This was a great story all the way around because the reason that there became an operating room available on the 13th is because a little baby got his liver sooner then expected!! WOW.  This now leaves me with less then 3 weeks of "Sicki Ricki," and then watch out!

...Oh, but wait, there is more. I received an email from the "Fight Like A Girl Club" a new website that is launching for warrior women battling cancer and other life-altering diseases. It will be a "go to" site for tips on eating, living, and dealing with your disease, as well as a place for fundraising and support, and they have asked me to be their "go to" gal on Liver Disease!! How cool is that?!? Oh, like me you're probably wondering... Why you? Well I'll tell you my 23 blog readers... (clearing of throat) And I quote:
"Why you? I am being extremely selective with who I ask to write for the site. I have spent HOURS scouring the internet, Twitter, and Facebook looking for women who are passionate about their cause and who seem to truly want to reach out and help others going through the same thing. You stood out as this person for liver disease :-)" 
Oh ya... happy face and all. It brought a tear to my eye... now I might be fired after my first rambling article, but hey... I've never been a "go to gal" on anything, so I'll take it while it lasts (besides, can you really fire a volunteer? - that's just horrible)
Thank you so much Karen and Chris!
It was a great night off from being sick.

Tuesday, June 22, 2010

Louis, Louis, still WHINING Louis...

One of my all time favorite movies... but it is one of the last lines that I think in my head whenever I feel like I am whining. I can honestly say, I can't wait to have this surgery so that I don't have to listen to myself anymore...hehehe, (My family think they have it bad, and I only complain about 1/3 of the time I hurt) The other two-thirds of the time I'M THE ONE who has to hear it. hahaha. This morning I had decided that from now on I am going to turn everything into a positive... it is one of the reasons I don't call people anymore (people seem to be awkward on what to say to someone sick) and for some reason they always end up saying "How you feeling today?" which, in all honesty doesn't bother me... it is the response I get if I answer truthfully, the look or silence after that I would rather avoid. So instead, for this next month I vow to say "Good" and if it is a bad day, I'll say something like, "It could be worse" or "I'm still here!!"
Of course, today was not the smartest day to start this since I had a USC appointment. hehehe. But, I actually could report that I haven't gotten much worse, and that's positive. Jason almost got his butt kicked when they asked him how my mental status has been... They asked about my confusion, and my loving husband has the nerve to say, "Well she's been confused for a while now, sometimes she seems like she is in her own world and gets irritated with her forgetfulness..." The nerve of that man!! He won't be living this one down... I wrote it down - right here - he said it on June 22nd. hehehehe. He is right though, poor guy. Sometimes he will come into a room and I must look like one of the girls in a horror movie... just standing there for days in the middle of a room looking at their victim... (Ohhh spooky) but it really is usually that I am just trying to remember why I cam into that room, and it may take me many minutes to remember (or give up) Anyways, as you can see nothing new has really happened to report. They have put me on one more medication (I can't remember what it is, Jason took it to get it filled) but it is for my memory.... hence the fact that I can't remember what the heck it is. They also want me to try to lower my diuretics to only half doses on days I do not gain fluid, to give my lil kidneys a break... don't want them shriveling up and drying out, then I'll need new kidneys too. - Not to preach to anyone, but this is why people have to really watch their diets (always) but especially if they have a medical condition. I could rely on ONLY the diuretics to try to loose the edema and ascites, but it would only cause more damage in the long run. It is better to use the diuretics as (extra) help, when diet alone is not working. All these people who just go straight to the meds to lower cholesterol, high-blood pressure, diabetes.... it's just not healthy. YOU have to work at anything worth something, and life is no exception! <--Wow that's good enough to be a Dr. Suess quote so I guess I will leave you with one of my favorites from the great Doctor.

"Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind."
  --I am sure that in opening myself  up and sharing my theories on life and health, I have lost some friends and family members. For anyone that I have hurt, I apologize. Nothing I have ever said here or anywhere else has been out of malice or meant as judgmental. Though, everyone has a reason for entering and exiting our lives, so I'll leave you with another of my favorites!
"Don't cry because it's over, smile because it happened."

Spread the word! Live Life then Give Life!!

Sunday, June 13, 2010

Cranky and Flaky

One more thing to apologize for... I have a select few (you know who you are) that have continued to check up on me over this past year, yup it has been almost a year - this is one of the only things in a long time that I have stuck to doing for a whole year... that I didn't have to do. Anywho, this handful of people have called (and called again) and I have been, by far the flakiest person I have ever seen. I will blame some of it on my H.E. -- I forget to take my phone a lot of places now, but it is because my habits have been thrown off... I used to grab my keys and phone in one hand and my purse in the other, and I was out the door. Now I walk circles before I leave and end up with maybe one thing in my hand when I walk out the door... and I just hope it's not the remote control. Needless to say, my mind has not been completely clear, and then with these added 15 lbs or so of fluid, I feel about 8 months pregnant and cranky. Which makes me feel even worse, because if they do get me on the phone, I'm a real bummer.
So instead, I have slipped away to solice, and I am sorry... Yesterday, Jason, River, and I went to Huntington Beach, had dinner and sat by the ocean for a while. By the time I had walked down to the water, Larry was hurting so bad I wanted to cry, but it was still worth it (Luckily Jason has to forgive me for my snappiness when I'm hurting - I become short fused, to say the least) When I got home, I had several missed calls (quite a few from my mom too... sorry ma') but by that time, I was to tired to call anyone, though they didn't miss much, I wouldn't have been a hoot to talk to anyways. hehehe. Either way, no excuses, I have been far from dependable this year, but just stick with me another month... Then I'll be there... and FUN too!! OOOh, and I'll finally be able to console people with "Atleast we got our health" and not mean it as a joke. :)

Saturday, June 12, 2010

Somber days...

Sorry about my earlier post... it was more of an ammonia induced, OCD moment. I am just trying to cover all of my basis here. I don't want to forget anything, but my writing lately is seriously lacking. Sorry about that.
It has been a very emotional few months (ok, years... but more specifically, these last few months) We lost my Grandpa Earl three weeks ago and buried him today. It was a beautiful and symbolic service. Since my Grandpa was in the Air force, they honored him and my family with the presenting of the flag and played the "Taps" song, which I know sounds horrible, but I always thought was somewhat cheesy, until today. The haunting melody didn't leave a dry eye.
I tried not to let myself think about my upcoming surgery, but my thoughts did drift to how I would want my own funeral... and I for one, would love it if everyone wore some green. I want music played, songs like "What A Wonderful World" and "Everything is gonna be alright", stories shared and laughed about and then at the end I want my closest family and friends to take home a little "piece" of me... Put me in some necklaces or something so that I can still go places with 'em. hehe. I do hope that this celebration is a looooooooong ways away, but we never really know... It is one thing that I am grateful for learning through all of this, life is short -- so live like it!! Every beautiful miracle should be celebrated and not taken for granted. Live like you're dying... it is very humbling.

On a different note, I have been swelling again and had a low grade fever for a few days, but as soon as I posted on facebook that I was going to call the doctor the next day, my fever disappeared and I haven't gained another pound (I haven't lost one yet either though) Hehehee.. I scared it away. That is why I always wait to go in... usually I can get it to clear up fine on my own, plus when I go into the E.R. it is like taking my car in to the mechanic because of a noise... as soon as I get there, the noise is gone! Anyways, my momma said my face looked a little better today... not so "chipmunk storing food for the winter" looking. :)
Well I better get back to bed... Being sick does have some perks, like, I can get Jason to go just about anywhere (he really sticks with the NO DRIVING rule - such a square) hehe... and we need some fresh fruits and veggies for the week, so we will be hitting up the farmers market in the morning. (ok, afternoon).

Friday, June 11, 2010

My plans before surgery

One day, I better get the thanks of a life time from my son River... I sure am going through a lot of stuff to be around for him in the future... hehehehe... (I sense a future guilt trip) I am just so sick of being sick right now... Being this swollen packs some serious nausea. But I have to stay focused. It is a busy month for me. I know this sounds weird, but I feel like I need to push myself to be as normal as possible right now... My only problem is (yes... my only problem... sure.) is the time it takes me to recoup from each day.
Tuesday was one of my last USC appointments before the surgery. I had to have a CT of  Larry and an echo. Everything looked ok (in my humble opinion) Of course I left with 4 more bruises - my CT scan needed an IV for the dye, the echo needed an IV for a "bubble" test... both took 2 tries to get it right. This is my new buddy Art, who did my CT scan, notice his green ribbon!! Whoo hoo. See, I even spread the word while testing! Anyways, so 6 hours at USC and another 2 hours driving (well, riding) Two appointments left and then show time!!
So what is the plan. Well, today, Friday, my family will be honoring my Papa. His funeral is at 2:00. I then have to stop by Dr. Anderson's office to grab some lab work that USC needs done... This weekend, recoup from that. (I'll give myself the whole weekend)
As for doctors appointments. I have 1 clinic appointment left on June 22nd. with Dr. Donovan, and then pre-op is on July 12th with Nancy!! (Wow, coming up quick)
And since this is a pretty major surgery, with life altering changes that need to come after, I really want to get some family time in before hand. So, a few things that I get to do this month... more then I usually do in many months... This Wednesday, we were given tickets to go see Sting perform with the Phil Harmonic... VERY good seats. (I hope he does some Police) On the weekend of the 27th, we will be heading over to Tim and Nancy's where we will enjoy church on Sunday morning, followed by a 2 year old's birthday party. (Oh my, I'm already tired)
Celina, who comes over twice a week to put me down for a nap and help me run any errands for the week (my buddy, I am VERY lucky to have yet another person helping me out) ...Her and her daughter, Lily, also tire River out nicely. Here they are enjoying lunch, River is already pooped! I snapped this just before I got in trouble for not being in bed yet... Oh ya... she looks cheeky, but she rules with an iron fist. hehehe. Anyways, they invited us to Knotts before my surgery... "I'll wheel you around - We'll go on a weekday, don't worry about a thing" she says! ...Sounds good to me. I'll do it!! So, we have 2 doctor appointments, 1 Sting concert, 1 trip to Knotts Berry Farm, 1 birthday party weekend, and since Jason and I have forgotten our wedding anniversary the last 2 years in a row, we have decided to go big (for us) and take a "weekend" camping trip, it will be River's first! I also want to do a family picture... Sad to say we have never done one. (though we take lot's of pictures) I would also like to hit our little nature spot in Irvine this month... have a little picnic there and see the butterfly exhibit. I wanted to go to the Grand Canyon, but I think I would rather do that after when I can go water rafting again!!  I can't think of anything else right now...
If you think we are ignoring the big polka-dotted elephant in the room, don't. I know I have like a 25% chance of not being here after July 15th, and my statistics drop even lower for a 5 year prognosis... It is quite the opposite actually. I think that we are embracing it, trying to savor each moment we have together (between a few mental breakdowns, of course) I just hope that I can do everything planned this coming month. Wish me luck... Oh, and if you think of anything that I HAVE to do before I go in for major surgery, you let me know.... Really! (It was Celina who came up with the family portrait... a great idea!) Of course, I can't do anything to crazy or active for that matter... and, Jason is still (luckily) doing freelance work Monday - Friday so he really can't miss work, which limits us... but we are blessed to just have this money coming in, we don't want to rock the boat!
Oh, now would be a perfect time for breaking news on upcoming fundraiser events!! My aunt Bev, still kickin' butt, has set up a legit poker tournament to help us pay for medical costs. More details to come on that, but I believe it will be (probably) sometime in August in Carmel, California. (WOW) and speaking of fund-raising... I need to get Larry's kids up and running before surgery... I will need to apply for a charity, get an EIN #, and get donations tax deductible, so that we can help others that are in need of transplants... any help or a point in the right direction will be much appreciated on that too.

Friday, June 4, 2010

Hepatic Encephalopathy (and a hodgepodge of stuff.)

Being that I have been M.I.A. these past few months I thought I would explain to you the reason. Yes most of it is from a symptom of my cirrhosis, Hepatic Encephalopathy... Not only has it caused me to be slightly O.C.D. (I do things over and over again, and check time repeatedly because I don't want to forget something) and now I can't even be all "Martha Stewart" with home projects because of this twitching and low attention span. hehe... I know, the things I whine about)  We have also had a few real issues, kinks, and losses to deal with. The toughest, the loss of my Papa Earl this month. He was 80 years old. Rest in peace papa!! We have also had a few financial scares (who hasn't) my husband has pretty much lost his job, but God has provided. Jason has been doing free-lance work (lets pray the company does well, and likes Jason enough to hire him.) AND (by the grace of God, and the amazing owner of Rezn8) We have been able to keep our insurance, at least for now. We have such amazing family and friends that not only have sent their prayers and good vibes, but also donations! Donations of time, Harley rides (hehe), and money from $1.00 to hundreds of dollars, and again, just when I think we cannot be any more blessed... The biggest gift anyone can give, a second chance at life, my liver sliver giver (sorry, I can't resist) Jason's cousin, Nancy. << Trust me when I say, this is HUGE, and doesn't happen often for people... Whoa, whoa, Nelly... Reign 'er in there Ricki... tehehe, this post was supposed to be about Hepatic Encephalopathy, I have found some interesting articles on conflicting research on protein restrictions (I myself have come to the conclusion... in my expert opinion that doctors mislead us by saying low protein, but what they REALLY mean to say is low animal proteins, stick with mostly vegetarian type proteins... and lots of carbs. Low protein will lead to malnourishment and no energy, trust me) ...Please correct me if you disagree. Also, I have found some interesting stuff on vitamins and BCAA's (Branch-chain amino acids), L-carnitine, rifaximin... and have come to the conclusion that Lactulose is probably not the most effective treatment for H.E., rifaximin is probably better (even though Lactulose is what I use) I also personally take Zinc which has been shown to improve HE (I think B-12 has also helped with the mental fog for me... but that is just me - could just be the extra energy of B-12.) And I really don't see any negative effects of these or even the BCAA's many recommend. I hope I am not leaving anything out... Of course the obvious, as with any toxin, the goal is to get it out of the body, so to add to it by taking any drugs whether over the counter, prescribed, or not... ANYTHING that is not absolutely necessary (and obviously alcohol will intensify the effects of HE) should be avoided! Ok, I think that is all I have to say right now about that... I know I should cite where I found all this golden information... but I'm tired, and like I said, I do not claim to be a doctor, but here is one great site that explains it much better then me, the rest you will just have to take my word for... muwahahaha. (Click here to learn more about my newest nemesis... So bad it needs no other name then H.E.) hehehehe... I'm not going to even try to blame my cheesiness on it though.

Wednesday, June 2, 2010

I wanted to change the world.

As I sit here at 3 am...partially because I can't stop twitching (twitchi Ricki) hehe. Partially because of plumbing issues... (two words - LACTULOSE SUCKS!) and partially because I have a slight headache (and because I try not to make the same mistakes twice) I did take my temp and do have a slight fever of 99. Not to bad, but I also weigh 119 again so I'm keeping an eye on it. Speaking of my fever, I feel slightly guilty because it has been kind of hard to remember to take my newest med. which is an antibiotic (so that the fluid build up doesn't become infected) But I have to take it atleast 1 hour before or 2 hours after a meal (and there are a few other restrictions with it) so I can't take it in the morning because of my nausea issues and then at night... by the time 2 hours after dinner rolls around I am out! But I will try harder... Oh man then if I start getting massive cramping (and I mean from jaw down to my toes) I have to take my Potassium Chloride, but I can't take that any time near the antibiotic and I have to remember to stay up at least a half an hour after I take that one, or I end up puking up some weird acid stuff... sorry for the complaining, but I have another point, really I do... If I could only remember what it was... hehe. 
Oh, yes... I used get mad at my nana and papa if they didn't take all their meds correctly, but that is another mistake I will not make again. Especially with my encepalopathy, I can honestly say, luckily I am typing this because it would be very difficult to say with my foot inserted into my mouth... Anywho, It reminded me of something beautiful a friend of mine shared a few days back... Them old people, they've got a lot of wisdom, they do! hehehe (I'm sorry, to be politically correct... ahhhhh who cares, if your reading this your not old... obviously you are hip with the times.) 

My change is learning to live each moment to
its fullest, to be humble, and of course
to share my story so that others may be inspired
to Live Life then Give Life.

I Wanted To Change The World
By Unknown Monk, 1100 A.D.
When I was a young man, I wanted to change the world.
I found it was difficult to change the world, so I tried to change my nation.
When I found I couldn't change the nation, I began to focus on my town. I couldn't change the town and as an older man, I tried to change my family.
Now, as an old man, I realize the only thing I can change is myself, and suddenly I realize that if long ago I had changed myself, I could have made an impact on my family. My family and I could have made an impact on our town. Their impact could have changed the nation and I could indeed have changed the world."

Tuesday, June 1, 2010

A momma's plea...Live Life then Give Life!

To anyone that can help:

My name is Ricki, I am a 29 year old wife and mother... and my two men are what I live for. Unfortunately, we have recently been hit with a few blows that has changed our entire path. In April of 2006, we were blessed with our only son, it was a complicated delivery that resulted in a total of 3 surgeries for me, including a partial hysterectomy. My health began to decline. Now, I was never what you would consider a "healthy gal", I had my appendix and gallbladder removed, a spinal tap, EEG's, EKG's, CT's, and a few tests I would rather not mention (tehehe) but the biggest is that I was born with Hepatitis C, which is the reason I am writing this letter. Last year we found out that our son was also born with the Hepatitis C virus.
There are so many preventative measures we can take, diet, vitamins, exercise to keep his little liver healthy so that he may live a long and healthy life. Over the past 15 years or so, I have learned so much about the liver, and have tried my hardest to keep the disease at bay, including 1 year of the Interferon injections. However, for me, nothing has worked and this past June we found out that my liver has began to fail. Without a liver transplant, I have between 2 and 5 years to live. This is when my eyes were opened to the shortage of organ donors in America alone. All the men, women, children waiting to start living again and many are not making it. Though I am officially on that list of over 107,000 people, I am blessed to have a living donor, my hero, Nancy. My surgery has recently been set for less then 2 months away, July 15th. and though the statistics of survival are in my favor, I must prepare for the worst and just pray for the best! There are many "what if's" involved in my case, and because of my HepC, a large chance I will need another transplant... possibly within the next 5 years after my first. I may come out of this feeling worse then I am going in, and though I have many symptoms of liver failure and pain daily,  I am still pretty confident of what to expect from day to day, so we just try to enjoy the time we have. But now, with this transplant coming up, I have to get busy. I have to have something set in place for my son... his health and all the others that are waiting for life saving transplants... My son may be on that list one day, and I don't want it to be a wait. Like I said before, we are preparing for the worst but praying for the best. I guess what I am looking for is a miracle. I want everyone to choose to LIVE life then GIVE life, I want them to be organ donors. I also need some form of awareness program, training for doctors, something so that people learn to be their own advocates with their health and doctors learn to treat and prevent liver damage, especially with children - before any damage is done.
I am not worried about what may happen to me (and I am trying my hardest to instill this into my whole family) I haven't been brought this far to fail now, but if my body does... I don't want my family to grieve. We will all see each other again one day. I want my son to know that I tried my hardest to stay on this earth for him and that I helped to make a difference.
Please help me to spread the message that this life is a gift, and to pass it on. So many are suffering and dying and each person can help to change that. One person can save so many lives. I need to know especially that the doctors treating our children learn to detect and properly treat liver problems; but if damage can not be stopped and they do need a transplant, may there be no waiting list so that they can bounce quickly back into living life.

Thank you,

Ricki Albertoni
Recycle Yourself - Recycle Life - Recycle Hope!
Flickr Photos - Ricki's journey