Hopefully I'll have loads of energy.... Tomorrow.

Pray for me guys.... I can't seem to get more then an hour or two of sleep at a time without having to pee or shift for Larry's comfort, I'm down to 108.2 today, my nose is packed with (YAEH at least it's not bleeding!!) old blood clots and silver nitrate. I've got the in-laws coming in today, and a 1K walk to do tomorrow... (there will be no wheeling around for me either) Larry is doing this all the way baby!! GIMPING IT OR NOT!! Viva life.... hehehe. (if you could only see me now wrapped in my woobie, fuzzy slippers, and sprawled out in my recliner... whoo hoo, that's me, true motivator) I have got to get up.
Oh ya, and I have driven two days in a row (only to doctors appointments) but it was a little nerve racking still; although, I feel a lot better with my glasses on!! (Who would have thunk it!) I still get frazzled and can not have any talking or music on... but I made it there and back safely. Probably not worth doing to often though... I went out to the garage this morning to turn my water oasis on (that thing has brought SERENITY NOW... *Seinfeld quote*) anywho, I was startled by a shadow of a hand under my tire when I flipped on the light, but the first thing I thought... the first thing was "OH LORD, What did I do yesterday" hehehe. My second thought... did not occur to me until well after... which was, "Hmmm, could be someone hiding under there" but it was to late, I had already reached down and grabbed the whole hand. It was my gardening glove. hehehe... but still, I thought... if I had to question whether or not I remember hitting something yesterday or not, it is probably not the best idea for me to be driving much. ;)

Not always as it seems

I walked into my first Ear, Nose & throat appointment and had no idea what to expect, but when they called me into the back and told me to have a seat here, I almost turned around and left. Does this not look like it is out of some demented doctor horror movie? I sat though, and when the doctor came in and had a look, she said, "Ok, here is what we are going to do. We are going to cauterize the nose and then you are going to spray saline up your nose 4 times a day after that for 2 weeks and keep Vaseline on it" Great, I thought, another appointment! But nope, she then says... "We're going to do this right now" and started cleaning blood out of my nose. There are 2 parts of your septum (or something) in each nostril and she had to cauterize all 4 parts on mine because she said that everywhere she touched with a Q-tip was bleeding. It may take 1 or 2 more times to completely stop these bleeds, but you may not... she said as she sprayed numbing solution and then the silver nitrate in one quick move. "I'm done"... after I wiped the tears from my eyes, I asked "ok, done with what... the numbing? hehehe. Nope, she was done, cauterization complete!! Though it felt kind of like I stuck my head in water and took a deep breath through my nose.... it wasn't that bad, and it sure will be nice to not have to worry about a spontaneous bleed at the wrong time. And... Maybe, since I won't be loosing blood constantly, I will have some energy and won't be so dizzy all of the time.... is that to much to ask for? I think not!!

Back to team Larry for a second... look at our banner! How cute is that.... I am so excited and can't wait to see all my friends and family on Saturday for the walk! It means so much to us!
If you still want to walk with us... 

quick update

Yesterday's doctors appointment was a little less encouraging then I thought it was going to be. I expected to go in there and tell him of my symptoms that are now actually affecting my eating habits, and come home with it resolved. On most days, eating anything solid causes (like a 5 on my pain meter) a baseball bat to Larry and my gut feeling. I have mentioned this pain before, but now it is daily and can have me doubled over for a while. The fix I got was.... basically, start eating pureed food or juicing it. Things like Malt-o-meal, mashed tatoes, fish... so that it doesn't hurt so bad. It was kind of like a... "Doc, my neck hurts when I do this"... "Well don't do that" type of response to me, but I do know that there is nothing he can do about it... it's just frustrating (especially when you have a co-pay.)
He also asked me about my Hep C. Since I am a non-responder to the old treatment, the doctors at USC have decided not to retry the same Interferon treatment again, which as I said before... I know that the HCV will come back and distroy my new liver, but this still buys me time... maybe even another 20 years, but I will most likely have to go through this again at least 1 more time. I know this already, trust me, I do, but it still is never fun to hear. "29" my doctor said yesterday.... "so young".
Hopefully todays Ear Nose and Throat appt. will be a little more productive... Maybe they can cauterize right there in the office. I have been super weak and dizzy, so I know it is definitely time to go get this fixed. hehehe (such a procrastinator)

ON THE POSITIVE...  I AM SO PROUD OF TEAM LARRY'S FUNDRAISING PAGE. WHOO HOO.!!

RECYCLE ME! RECYCLE HOPE!

When you think of recycling you think of plastic and glass, shift your perspective and think of organs! 

Recycle Hope, Recycle life!!


Register to recycle your organs/tissue when you're done with them and get the facts on everything you need to know at:
www.donatelife.net

Live Life then Give Life. YOU can save up to 8 lives. Remember there are over 106,000 of us waiting in America alone. Don't take your organs to Heaven, God knows we need them here!! 18 die everyday waiting, but YOU can be their miracle. So do it... do it now. Be a HERO!!
And recycle your bottles and cans too... what good are our organs with no beauty left in the world to see. Happy Earth Day!

2014 is a little to long for me....

Jason seemed a little jaw "clinchingly" on edge this morning after receiving a phone call at around 9:00 or so... He kept walking into the bedroom to make a phone call here and then another right after... but I didn't give it another thought and went on with my morning with Mr. cranky pants. Then finally, he spilled the beans. The phone call he received was from his work. If his company goes under (sadly over 20 years, it very may well) Cobra will NOT be an option for us. However, I would be able to still wait and (hopefully) get a deceased donor's liver through medi-cal, but NO Aetna means NO living donor.... which means.. well, it means I'm going to get a lot sicker before I get better, if I get better at all. We can only pray that his company does not dissolve (or at least not within these few months) so that we can keep Jasons insurance and I can get betta!! They told him that until Obama's health plan goes into effect in 2014, (when insurance company's can no longer deny pre-existing conditions) we are shit out of luck! God knows I don't want to be a "Free-loader" and I am sure (although at times my monthly insurance share of cost has been as high as $1257.00 with Medi-cal) and I still couldn't have a living donor.
It is like UCLA all over again... worried about not being given the opportunity live after I have been working so hard...."I don't know" the UCLA financial coordinator told me. "A liver transplant for you is going to be very expensive, are you sure you want to go through with this?" ....Oh man, if I could have reached through the phone that day we could have seen just how much POWER the little one packs. But I'm a liver not a fighter... Hmmm?? hehehe...
Jason is going to check into another Aetna program called HEPPA (or something)... but these are all a bunch of what if's... I am not really worried, because I feel that his company will stay afloat or that we will be able to get onto this HEPPA program if needed. I feel very strongly on this... call me naive, call me a crazy religious nut, but either way, you'll be calling me, cause I'm stickin' around.
I always plan... a Plan A, and a Plan B, then I relax and go with the flow because whatever happens next is in God's hands. I truly hope that Gods plan is my plan A though and not plan B... because plan B is waiting for a deceased donor and I want to start living NOW!!! (haha, that sounded bratty like the little girl who wants a golden goose in wonka) But! I will keep the faith... it will happen as it should.

Momma's Garden Oasis...

Yesterday was a good day. My mind felt completely clear and most of the soreness from the tummy tap is long gone. Though I may have (OK I DID) overdid it a little, because this morning Larry feels like he needs to be in a sling. But even I got into the action yesterday in turning our lil landscape into a little DIY Network success. tehehe. (I love those makeover shows) Anyway, I had been bugging Jason for oh-umm, maybe 3 years now to give me a little water feature and some pretty flowers on my back patio, and yesterday it must've been coooooold somewhere because I GOT IT!!
I find it super important in my pre-surgery and recovery time, and I think that is how I got him. Sucka! Just kidding honey. But I do have to say it is only the second time I have used this power to my advantage... Ahh, when was the first you ask? (Hey my blog... I say you asked) I have gotten my husband to not only leave the toilet seat down, but the lid too. How? by telling him when we first got Kaya (bout 2 years after we moved in together, he  constantly left it open) I saw our new baby kitty almost fall in by jumping up there. And one day, maybe Kaya would jump up there thinking it was closed and it was open, he couldn't get out and would drown. Not one time after that did he leave the seat up again... and now at year 12 together (yup I have been dating only my husband for 12 years now on April 16th. WOW) Luckily back then, we didn't have Google, so he couldn't look up to see how many cat toilet deaths there are out there. lol  I was willing to risk it for the cause, am I the only one who doesn't think it's kind of gross to flush the toilet with it all open so dirty water can splash out?

So Meditation!! Crucial part of recovery in my opinion. I'm not talking palms to the sky "Ommmmm" type. I just mean closing my eyes, listening to God's (and man's) creations and breathing slowly. I also believe in visualization therapy. (Check it out) But we only use such a small part of our brain, and I know we have the power to will yourself better - to a point at least. I like to visualize Larry kicking cirrhosis' butt! When I was in the hospital, they offered a touching healing technique that I know calmed my anxiety down right away... all with the power of touch. -- Did you know that you should hug your loved ones for atleast 20 seconds to release actual chemicals in your brain that make you happy? My last councilor taught me that. It's true too!
So meditation and visualization here I come... Babbling brook and all. tehehe. My way of looking at health is kind of like a triangle. I have God (or Allah, or Ishvara) whatever His name to you is. Then below you have Western and Eastern balancing out the bottom, Inside... a whole lot of good energy and prayer. That is what gives me confidence from somewhere deep down.
And now the sun is coming up, the birds are chirping and when I go outside this morning the first thing I am going to do (after turning my waterfall on) is smell my beautiful roses and lavender outside... revitalize.
I also wanted to give a special thank you and ask that you all keep my Landlord and her family in your prayers. Jackie has been a Breast cancer warrior for many years and was recently told that her cancer has come back. She is an amazing woman, and they have been a blessing to us. It saddens me that we haven't beaten this disease yet, but she has told me that in the near 2 decades since she first had cancer, they are coming along! So please pray that the treatment she is undergoing now will beat it once and for all for her and lets keep the fight going to find a cure for this!

3 days in Solitare and I promise to be a good girl!!

On the 13th, the day before River's birthday. I had finally gone in to see my general doctor for the UTI infection and share that I have been experiencing some anxiety attacks. I got in there thinking I was coming home in an hour with a prescription for cipro and xanex, but was mistaken. I had a 102 degree temperature, and weight was 129 lbs, they wanted to makes sure that the infection wasn't in the Ascites fluid I've been lugging around with me.  
I was so sad when I heard that I was going to have to stay in at least 2 nights to get the results. I already had my heart shaped pancake cutter and a gift ready to give to River right when we woke up... I like to make the whole day special. Even though I think we should never take anyone for granted, birthdays I have always took as a day to really show someone how happy you are that they were born and chose to spend it with you. Anyway, besides the fact that I have pretty much been sick every single one of his b-days, and that just sucks!

So early on the 14th, instead of making heart-shaped pancakes, I was wheeled into the ultrasound tech's room, and prepared for (probably one of the bigger needles I've seen) a test to drain some of the extra Ascites fluid. Once they got their sample, they let the rest of the fluid in that pocket drain as well... removing a 300 ml. Trust me when I say this is nothing, the guy next to me (I shall call him Bob) Bob was there being drained when I got in my room and when I was being rolled out, he was still filling bottles and didn't even look half done. Poor Bob, it don't feel good. I am still pretty bruised feeling, but nothing to bad. And River did get to open his presents and eat cupcakes *made by Auntie for his actual birthday. I'm not worried about him becoming a bitter kid... He really does seem to take all of this like a trooper. Always in good spirits. I am sure that all kids are complimented, but people have always commented on his happy nature and caring heart... and he is only 4. He just has something about him though, you can see it in his eyes sometimes. Old soul maybe. Anyways, he can go 2 ways with this...."Poor me, my mom was never there for me as a kid" or "My mom's my hero for giving me empathy." Lets pray for the second one. 

I cannot handle people who use their situations and experiences as a get out of free butt-head card, or a crutch, instead of taking it as it really is... a tough experience that YOU were a warrior through and made you better for knowing. I am 29 years old now. Born with Hepatitis C, shuffled around very unsavory situations and lived with my Aunt and Grandma, I have seen a man stabbed, walked in on a what I thought was a dead mother on several occasions, lived with family death, I had a father that I hardly ever seen and who has completely disowned me now that I am sick. I have slept in garages, trailers, and to full houses, and on food stamps. I have been touched in places little kids shouldn't be touched, and pretty much left to my own demises until my mom came back healthy, and we moved up North; where I couldn't STAND my "new dad". (course I'm quite partial to him now... he is the only dad I've got and I should have given him more credit for only being 19, hard to tell that to a 7 year old though. I have had I have been in and out of hospitals, I tried a treatment for my hep C that did not work but had the effects of chemo on me. Though I did not loose ALL of my hair. (just patches) Gallbladder, Appendix, Uterus - Gone. Chances of ever giving birth again - Gone. Spending the first 3 weeks with my one and only newborn - never experienced. wow... where in the heck was I going with this. (Let me scroll up a bit) Oh yes. My point... because of this or despite all of this... I am who I am... and I'm not someone who blames anyone for that.  So I am sure my son will feel the same when he is older. I hope. That was the point I was trying to make fifteen minutes ago. (before everyone in my immediate family disowns me. tehehe) HEY I think you should always be open and truthful, you never know how many people are in similar situations unless you do.... like tell me this one gals. any one of you leave an empty shampoo bottle in your shower to see how long it takes for your husband to throw it away... I thought I was the only mean one when we first got married, turns out, a lot of wives like to piss themselves off by performing such tests on husbands. See. :) 
Speaking of Jason, he is still handling everything like a rockstar. Although, you can tell it is taking it's toll on him. He did get to PUFF out his chest a little wider last night though. hehe. I am not sure if I informed you, but Jason's job has now left the CNN building. They couldn't afford the lease and now since Jason's pay has taken a 30% cut. I actually am making a few dollars more than him with my disability checks... and that is pretty hard. But he got a call last night to do some freelance work (I'll find out the name of the company) and he was really excited about that. He is good enough in his profession that people remember him and ask him, instead of him having to get a demo wheel together and really get out there and sale himself. (because that he is not so good at...guy showing up in flip flops and a hat) hehe. So that is awesome and couldn't have come at a more needed time. I also learned that if something does happen to Rezn8 and Jason looses his job, Cobra though even moooooore money, will still pay for the transplant for both me and Nancy. YA BABY!! Good things.
I'll leave you with a dream I had in the hospital (because everyone loves hearing dreams. not really but this is a nice hopeful sign ((and short))

The scene is a nice sunny house and I am chopping veggies (looks like I'm making a stalk, hehe, anywho) there is a pretty young girl sitting at the island with me and she is laughing as I am giving her what seems to be embarrassing info on River. she is laughing hard now and then as still laughing, I sighed, looked straight at her said "well he was a stubborn boy, but that was back when I was sick" Awe. I woke up smiling... "back when I was sick" best dream ever!! See. At least something in this post was short and sweet. 


By the way, official discharge was for kidney infection (I waited to long w/ a UTI) and high ammonia levels right now. What I am going to do... work harder at only going in there 1 more time, and that's on July 15th baby. hehehe.

Meanies, always giving me tests they know I'll fail....tehehehe

You know, I am definitely more of a kill 2 birds with one stone kind of gal... Since I had noticed a UTI starting when I went into emergency (It's ok, I'm sure I lost any male readers I had a long time ago) anywho, I mentioned it amongst the other "symptoms" assuming they would do a test to confirm... and since I haven't received a call from my General doctor to date, I called him. And besides the fact that I was treated like a hypochondriac for wanting to obey my discharge instructions and make a follow-up appointment, I was told that I should make a follow-up with my GI doctor, not GP. Just like that... I was like, what about all the other blood work? Any infections? what about my UTI? Do I have one? What the heck... "Ok...Thanks for ALL your help... tehehe" CLICK. I am easily defeated when given information from ah-hum ((BIG throat clear)) "Professionals" -- So I called Dr Jamal. I love them anyway... actual empathy; And besides the fact that they are actually going to help me out, she told me something funny that I had to share with you.

Though they failed to do the urinary tract infection test... They did (thank God) remember to do a pregnancy test. Tehehe... I asked her if I should be holding on to hope that it may be positive one of these times... "Umm, No Sweetie, I'm sorry"....  NUTS!! Ahh, don't feel bad for my nurse, she knows my sense of humor.
Sorry guys, no matter how many times I take this one, it's gonna be negative. hehehe.

Oh ya - current weight 124.2 - I've got to get this 6lbs of Ascites off!

All the Medi-cocktails in the Hospital!

 I wanted to post the below articles because no matter how familiar I become with my disease and the symptoms it can cause, I do not know much. Because my heart rate kept dropping well below the hundreds and I was becoming weaker and weaker this last time in the ER, the doctor prescribed me a Nitroglycerin pill for my heart. What they didn't explain was just how much it can scare someone who never even knew such a drug and its effects existed.

My point... know as much as you can, and definitely know YOURSELF. Every time I go in there vomiting they want to give me Zofran, and though it may work for 90% of the population, it doesn't work for me... Keep track of what they give you... they are telling you for a reason when they pump it in you... The second article is just a reminder.... seriously, overdosing with zofran, pain meds, pepcid and whatever else they decide to add to your medi-cocktail may not be a great idea... My papa was so constipated his last hospital stay and they kept wanting to give him more drugs to fix the constipation the other drugs caused... NO MORE, he said! And one of his doctors finally gave him some Epsom, and like Emeril says....BAM!! ...ok, that's not a good quote at a time like this, but you get the point.

In Surgery: Knowing what you can.

Jennifer Heisler, RN, is a registered nurse who has worked in the areas of surgery, transplantation and home health care.

Experience:

As a member of a hospital surgical intensive care unit (ICU), Jennifer helped critically ill patients prepare for and recover from surgery. She educated family members and loved ones about the intricacies of patients' conditions and care, putting what she calls "surgeon speak" into easier to understand terms. During her time as an ICU team member, Jennifer also provided nursing care in in-home settings.
Today, Jennifer is an ICU organ procurement coordinator. She manages critical organ donors prior to surgery, monitoring ventilator settings, medications and fluids. Jennifer also identifies organ donation recipients who are on waiting lists and provides support and information to family members whose loved ones are about to donate organs. She works in both ICU and operating room settings.

Education:

Jennifer earned an associate degree in nursing from Central Ohio Technical College.

From Jennifer Heisler, RN:

My experience as a nurse has taught me one very important lesson -- knowing as much as you possibly can before having surgery is the only way to make the right decisions for your health and well-being. The decision to have surgery is a big one, and I hope you will use the information I've provided here to take great care of yourself.

n Surgery: Dealing With Pain After Surgery

Tuesday February 17, 2009

I've noticed something about people in pain after surgery that I find rather interesting. All of the normal things we do when we are normally in pain go out of the window. You know what I mean by normal pain; the headaches, muscle aches, cramps and other small pains that plague us on occasion. What do you do for the normal pain in your life? Do you take a few ibuprofen or Tylenol? Do you find a warm compress or a cold compress and put it to work? What doesn't work for your pain? I ask because if Aleve doesn't work for you for normal pain, the likelihood that prescription strength Aleve will work isn't so good.
So, if you are reading this because you're having some post surgery pain, I will first ask did you take the medications that were prescribed for you? If so, great. If not, seriously consider it! Not in so much pain that you need the strong stuff, but you still could use something? It is time to try out those things you do when you haven't had surgery.
Words of warning: make sure you are not double dosing yourself. If your prescription medication contains Tylenol (acetaminophen) don't take more in the form of over the counter meds. This goes for ibuprofen and other medications too. If you are going to use a hot or cold compress, do not apply it directly to your skin. The skin around an incision typically does not have the sensitivity it normally would and you can easily burn or well, freezer burn yourself, for lack of a better term. Seriously.
Let me know if this helps you!
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Test Run

Well we failed terribly on this little test run here.Like I said, Easter Sunday was not a great day, but the days that followed were a lulu, and even though it was just a few days I don't think my blog was updated (So I need to work on that - Give Rylee my password, although Ry did update facebook, which rocks my socks... and also saddens me that we get that much information through fb) Anyways, it started out like a normal... "I need to go to the hospital because the pain is unbearable" so again the ambulance came and dragged me out of my bathroom, and Thank God they did, because once I got to the hopsital, I started puking up a pretty good amount of blood. This was probably the scariest to date, mainly because of the pain, but also, once the pain was gone, I was so drugged up I could not keep my eyes open. I actually am still seeing polka dots, hehe, and still pretty much sleeping day and night. I did meet some new people. Adnus and Anna were my two roommates and I finally learned the name of my nurse that I always get, Sheryl. She's awesome.. I also like that I get in there and explain the wonders of the liver and the donation process... ehehe
So, I left again with a follow up appointment. My vitals were not staying stable and they kept me on a 10 hour drip that kept my intestines from bleeding (lovely, huh) As for the cauterization of my nosey, in their opinion, there is no reason to do it. Capillaries will keep on bursting and I can't do my whole nose.
So I think that is it for me... I hate to have to mention that Jason's job is in a lot more trouble then he originally told me. He didn't want to worry me, but yesterday slipped and said something like "Well, we can always get Cobra if worse comes to worse" - That is not encouraging at all.
And lastly, I guess I should mention, since my hospital stay my weight has gone from 117 lbs to 124 lbs. I am going to keep an eye on that for a few days... make sure that goes back down. My ammonia levels were a little raised as well, so I need to ummm... get...rid...of that too. ahaha...

--> Check out River's new awareness gear! Whoo hoo. ((@@)) It is kind of for his 4th birthday, but if you know me... you know he gets "birth-month" presents. hehehe... I have no self control. :)

Do over, please.

Good morning!! I hope you all had a greaaaaaaaaaat Easter!! Mine, on the other hand was filled with puke and sleep... and THIS time, it wasn't only me doing the puking. River wasn't feeling well yesterday either. He woke up not his chipper (bouncing off the walls) self, and lost his breakfast soon after eating it. Poor daddy probably hears the wretched noises in his sleep... Yes, both me and River were throwing up; and Easter Sunday this year, was not happening.
River being sick has all kinds of secret meaning to me... my mind starts running as soon as he catches any kind of stomach bug... "Oh no, is he going to be just like his momma?"  Of course, the fact that he has never been on antibiotics in his lil' life (so far) usually calms me down. I don't know what caused my liver to begin failing, but maybe I can keep River's from doing the same... at least until they find a cure "momma approved".  For now, River takes his multi-vitamin and an extra dose of Vitamin C (Vitamin C has been linked to expelling the HCV virus from children) and he eats a pretty well balanced, low sodium diet. That, with no damage from antibiotics and over-the-counter drugs should at least prolong the onset of symptoms (I pray) for him in the future. My poor baby. I don't know how moms do it with hurting children... I just sat there and watched him (now I know how Jason feels with me) so helpless... waiting to see if he needed anything. Once he wakes up this morning back to himself, I will sigh and do a nervous laugh..."See...he-he-he... everything's fine, River is OK." Then I'll have aunty Rylee and Ahma come over and do a little Easter egg hunt with us this afternoon. :)

On a totally different subject. Jason found out Friday that starting next week, his company is going completely virtual. (Which is another way of saying, they can't afford the lease on their floor in the CNN building anymore, so Jason will be working from home.) They have also cut their animators pay to 70% again until they pick up. So pray for them... and us, because without their medical insurance I cannot have a living donor... and I don't even want to think about what that would mean. But Jason has assured me that it won't come to that... Rezn8 has been in business for over 20 years, and as we know,  they have been slow before...  They are a great group, uber talented, and have been so supportive... But a little prayer won't hurt, times are definitely rough out there.

APRIL IS DONATE LIFE MONTH!!!

I shall cut myself some slack this year and consider my computer postings and doing the walk on May 1st as enough "extra" awareness... but starting next year, it is on.
..Of course, if you would like to go door to door for me, I would be much obliged. I'm feeling mighty emotional right now, and I wish I could do so much more... everyday I read stories and talk to others like me...(or even tougher, I talk to their caregivers) I have gotten to know people waiting, people who have had their miracle, and sadly, I have known some that have lost the battle. My heart soars when I hear stories like Rachy's who finally got her lungs, breaks when time runs out for those like Eva and Ken, and has nothing but faith that precious Gabriella, Jenn, and I will get our miracles and be terrorizing the town in no time. hehe

So get out there and spread the word for us! We are nearing 107,000 mothers, fathers, sons, daughters, brothers, sisters... you get the point. Each one of us has a story, an actual life, and 17 of us are dying each and every day. We can change this... we have to change this!

And make sure if you are anywhere in the Orange county vicinity on May 1st, you get your butt over to Cal State Fullerton and join Team Larry for the family festival!!

Oh and totally unrelated, but worthy of mention in my opinion... This is my 100th post. Wow huh? what a whiner I am. Hey... any kind of publicity for organ donation has got to be good publicity, right? (I have no shame)  hehehe.