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.