Sunday, December 12, 2010

It's been a long time...

I hope that everyone enjoyed their Thanksgiving Holiday!! We were able to go up North as planned and actually spent a few nights at the Hyatt in Monterey too. The poker party was a success, they plan on holding a few more next year. (It helps sooo much) We ate clam chowder in a bread bowl on the wharf, and then fed the seagulls the rest of the bread. (Even though we aren't supposed to.) We had a great time with Jason's family on turkey day... I ate waaaaaay to much.
Since then, I have continued with my shots. They don't seem to be as bad this time around. Either I have toughened up since I did the treatments 10 years ago (I have gone through years of puking and 6 surgeries to help) or the fact that they are only once a week instead of 3 times a week really does make a difference! (I'm sure that is the reason) Some of my symptoms have actually gotten better with the treatments, this is because my LFT's are dropping back into a somewhat "normal" range... well, maybe not normal, but better then they were at least. I also haven't been hospitalized at all this month! Can I get an AMEN!!
The shots themselves, I have not been able to give myself this time around, Jason has given me every one of them (Now that's love -- either that or he just enjoys sticking me with needles.) I now cover my eyes with my hands, hum a song, and rub my feet together back and forth while getting my shot. Tonight I actually tried blocking him from going in for the poke. heheee. The next day or two after are the worse of the rest of my week, mostly aches and pains, mixed in with random nausea and vomiting. However, the nausea has changed somewhat - I don't know how to explain it, but when my liver is hurting, there is a different kind of nausea, a more constant feeling. The nausea from the shots seems to be more of waves, giving me plenty of breaks throughout a day. It is much easier to tolerate (in my opinion) Though right now, it is the itchiness from my bilirubin being so high (still at an 8, as of last week) I hate to complain, and honestly, unless you have experienced some form of this torture - you have no idea what I am talking about. It is literally torture. You feel like you are going crazy. You have no control of it and must scratch every itch... and it itches from the top of my scalp to the cuticles of my toes. The other night, we went to my husbands Christmas party (very nice by the way - awesome place) but all I could think about was sticking my arms in the fireplace to stop the itching. Seriously, it can bring me to tears sometimes. On the bright side, yesterday I found something that helps. Painting. Nothing else (even as I type, I am scratching my palms raw) seems to have the same effect. Maybe because it distracts my mind and gives my hands something to do.
Other then that, not much going on. I have been feeling a little discouraged lately. Mostly since my last appointment. I don't know why statistics are so important to me. If there is a 90% chance of not catching some weird disease, I would be 1 of the 10% who do... Still, I consider statistics very important. So when I hear the doctors say I have about a 20% chance of this treatment working it is hard to stay positive. The chances of me eventually needing another new liver are high, but that is not even why I have been feeling discouraged. I met a lady at this appointment. She too has had a liver transplant. We sat and talked for a little while, when she said something that I myself had been to scared or ashamed to say out loud myself. She said she didn't know if she would do it again.I completely understood what she meant. Sometimes I wonder how much more I can take, how much more I want to take. Even though it hurt to hear the words I had thought to myself many times out loud, I am glad I met her. It is a hard battle we fight. Not many will ever understand we go through (Thank God) and just because we feel like this from time to time does not mean we are any weaker or do not appreciate life as much. It's just freakin' hard sometimes. Deep down, I know I will do it again and again if I have to. But knowing that there is no end to my sickness anytime soon makes it so frustrating and hard to carry on with a smile sometimes. Luckily, I have a husband who always sees the brighter side, and has an argument for every negative feeling I have.
I hope you guys have a wonderful holiday season. We've got a few things planned. Next week we are taking River to Knotts Berry Farm. They do an awesome thing where you take in a $20.00 unwrapped toy for Toys for Tots and you get in free. We are also going to take him down to Newport to watch the boat parade. Hopefully I will also have enough energy to bake some Christmas cookies.
Now, it is time for bed... well, it is time for me to lay in bed for a few hours until I scratch myself to sleep.

Sunday, November 14, 2010

Poker Party with a Purpose

Poker Party with a Purpose

As of right now, I don't know if we will have enough money to cover doing the party... Please, if you are in Monterey area on Saturday, November 20th, think about coming to this.  $60.00 will buy you in. There will be prizes (and if you went to my Birthday Bash in February you will know that my family knows how to throw an awesome benefit!!)

So far our medical bills are through the roof, and that is only counting my Transplant. Now that my new liver is showing signs of fibrosis, the treatment I am on not only makes me feel drained of energy... but of funds too. hehe.

Please come! As long as my doc gives me the ok this Friday, I'll see you there!!

Sunday, November 7, 2010

HCV Treatments - Day 2

No, I won't be posting every day, I just thought you would want to know how my first night of treatments went. Though I have to admit it was not the worse night ever, it was not fun. I don't know how many times I told myself that I was going to tell the doctors in the morning that I don't want to continue them after all, but when my doctor really did make his rounds (peaking his head around the corner to see if it was safe for him to come in.) He was expecting to find me curled up in a ball and cursing him, but was relieved when I put my smile on and said it wasn't so bad.
I did throw up about 3 hours after my first injection. Chills started a few hours after that, and by the middle of the night when I got up to go to the bathroom I felt like I hadn't moved in weeks. Today there is more nausea, along with no appetite, and a pretty gnarly headache. I am still very achy, but it does seem better after I take a lap or two around my ward. I can't wait to get home and take a nice hot bath, oh, I wonder if I could get a jacuzzi paid for by my insurance. Hmmm - ya right, they won't even pay for a full month of anti-nausea medicine. Anyways, the treatments seem to be about the same as last time except I am almost 10 years older (and have had 6 surgeries)... I can feel the difference.
On another subject, something that blew my mind today, is my MELD score (which if you don't recall, is the scoring system UNOS uses to decide how sick your liver is. 40 is the worst, but you can be transplanted at 15) right now, my MELD is at a 14 again. Just 3 months post transplant, but unlike last time, this can get better if we can get the Hep C under control because there is no cirrhosis yet. I guess that is really why I put a smile on my face and say it's not so bad... Not to many other choices, at least nothing that I personally would choose right now.

Saturday, November 6, 2010

Round 2 Treatments - Day 1

The doctors may have tricked me again to get me in here. Yesterday I was supposed to have an appointment with the hepatologists, but with my tummy issues there was no way I would make it an hour in a car and then another few hours in waiting rooms, so I had to cancel it. In the evening my doctor called to ask what happened, but when I told her, she said I needed to come in and be admitted that night (At first I thought maybe she was just being mean because I skipped out on my appointment, hehe, but now I think it had nothing to do with my poo problems at all... she just wanted to get me in here)

Unfortunately, my last biopsy on the 20th not only showed inflammation of my new lil liver but also some fibrosis. I had agreed that if Sally showed any signs of damage, I would re-start the Hep C treatments - though at the time, I had no idea it would be this soon.

There is only about a 20% chance that it will actually knock it into remission, but it should at least slow the progression to cirrhosis. The side effects are still the same, and I will probably have the nausea, vomiting, chills, horrible aches, and extreme fatigue as I did the last time. It can cause low white blood cells, low platelets, anemia, thyroid problems, and post transplant, it can cause rejection. (among some other things) But in the opinions of my medical team, the benefits outweigh the risks... and I concur. (I think - well I do, but it doesn't make it any easier to actually stick myself with that stupid needle) 

My nurse came in about a half an hour ago to give me some Tylenol, so any minute now she will be back to give me my first dose. If it seems to be working and I don't have any real complications, I will be giving myself injections once a week until next Halloween. Biiiiiiiig prayers on this one please!!
{Basic information on the HCV treatment Ribavirin and Interferon **here**}

"Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go." Joshua 1:9

Friday, November 5, 2010

Not the sharpest needle...

When admitted to the hospital, you usually have an on call doctor come in to evaluate you and write up any instructions or tests they think you should have done... These were the orders the on call doctor gave.

The circulation leg cuffs to your right are usually ordered for patients that are immobile for long periods of time, or those with blood clotting issues... not for patients who come in because they can't stop getting up to go to the bathroom, especially those who when they need to go to the bathroom, need to go fast! I barely have enough time to unplug flo from the wall, let alone bend down to unstrap these bad boys. Needless to say that they only stayed on long enough for me to take the picture. However, I am trying to find a way to rig 'em to work on my shoulders and neck. heehee.

...Now if you will excuse me, the techs are here to do the chest x-ray he also ordered (for some odd reason)

Wednesday, November 3, 2010

Am I being punked?

I thought it would be entertaining to you to hear some of the funny and sometimes inappropriate things that happen to me while I'm in. I'll just post them randomly.

This one happened the last time I was in (the hospital that is). I had a young nurse who was asking me questions about my sickness. I told her that I have done some things to prepare -- in case I don't live as long as I would like... She had to take it one step further and ask if I had a new mom picked out for my son. Hmmm, No -- I told her, for all we know, I could outlive you. (it wasn't a threat or anything. tehehe) That same nurse later said "ewe" when I tried handing her my bucket of puke while I grabbed for another (as if I didn't feel bad enough already)


'Ello! I know I've been quiet lately. I've been waking up these last few days in a panic thinking I have a USC appointment (which I don't - a bit of anxiety me thinks) I did have one this last Monday, and my doctor came in with her hands up and said "We are starting all over with your case!" This worries me some. They are completely stumped... supposedly Hepatitis C is one of the most common reasons people need liver transplants, and my case stumps 'em.  "Don't you worry - I don't know how yet, but we are going to get you better" she then said. This statement also worries me (as well as makes me feel nice -- the dedication! hehe) What she meant by starting all over is, they will be going over my case again in a meeting on Thursday, revisiting all previous medical records - and will hopefully find something that they missed before.
Meanwhile, some things have not gotten any better around here. My "liver pain" (I put it in quotes because doctors roll their eyes when you say that your liver hurts - yes it is an organ that cannot feel pain - what you are actually feeling is the tissue around it hurting when your liver begins to swell, but who the heck wants to say all of that when you're in pain? Whatever it flippin is... it hurts) Anyways, it has gotten worse, but doctors are hesitant - yes hesitant (which means that if I demanded it, I would get it) to give me anything stronger for the pain, but they did tell me I can take 2 of the pain pills that don't work if I need to. :) Besides that, going out has been a little rough because I am still getting sick after I eat, and other times too (just to throw me off) All of this is draining me, and I am becoming a hermit, but at least a hermit stays HOME... so I'm not complaining (really) As for my Liver Function Tests, they are still bouncing around like crazy, but my Bilirubin has come down to 7 (just 6 more points to go) and I am  less itchy and yellow! whoo hoo.
I also barely made it home in time to do some Halloween stuff with the family (It was my first time ever in my own home that I didn't decorate :() We started two days after I got out of the hospital with Mickey's Trick or treat bash at Disneyland and even made it to a pumpkin patch with a lil haunted house a few days later. Halloween night we took him around the neighborhood and he declared that Halloween was the best! hehe.

On a totally different subject: The other day my Nana came over to visit and River asked her why she talked so crooked. Crooked? No one understood, so River deepens his voice and makes it raspy as he says "You knooooow, like this?!?"
My Grandma starts cracking up and says that this was her second message from God to stop smoking! (Though I'm sure it's not really only her second sign) --I really have my work cut out for me with this kid.

Friday, October 29, 2010

Who's coming to Monterey??

Still hoping I get the clearance to be away from USC for this, but anyone in the area, please come if you can!! There will be Cash AND prizes (Please call Beverly if you have something you would like to donate - or you can get a hold of me at The funds raised will help us pay for my medical bills and medications now... and trust me when I say we can use all the help we can get.  It will be a fun night!
A very special (and huge) Thank You to my Aunt Bev and everyone who is helping put this together for us.  <3

Live Life then Give Life!!

Monday, October 18, 2010

There's no place like home!!

Surprise visit @ USC

Ahhhh!! Guys, these last 2 days have been so awesome. First off, my amazing friends Patty V and Melissa G flew down to LA just to visit lil' oh me at USC! I feel so blessed to have some amazing friends and family. (Even some family came down for my surgery, including my cousin Boo who flew all the way down from Oregon just to support me for my this scary and exciting moment.) I mean come on!! How amazing are these people!! My mom and sis helped my girls plan the surprise and even though I wasn't quite feeling good enough to go out with them after, just them being there when I got released meant so much to me! We sat and talked about old times (ok gossiped mostly-but nicely) while I finished my magnificient magnesium, and Patty nearly fainted as I explained just how far a picc line goes in (and again when she saw the nurse come in) tehehehe. They are so great, makes me wanna cry. Then I got home (I know I'm skipping over a lot of stuff.... I didn't escape, the doctors let me out. They didn't really want to because my bilirubin is still so high, and my LFT's are still up - basically in those 3 - yes 3 weeks, nothing at all was resolved, only new weird things, like my first faint from internal bleeding, and stents in my bile ducts. But I think they knew I needed to go home - there was a sort of wild desperation in my eyes) Anyways, yes, then I got home. Took my first bath in 3 months (couldn't before because of the surgery site) ate some dinner Jason brought from Cheesecake Factory, caught up on a few episodes of Sons of Anarchy, and went to bed in my own bed. Then this morning, I laid with River on his little bed and watched him sleep for a while. So peaceful! I got up and fed the cats and let them out on the porch and then sat by the window quietly for a bit (until the wild child woke up) In the afternoon I made us some hot chocolate and set up the fire pit outside, and we sat there for a while on this gloomy day. My mom brought over a little board game my aunt had gotten for River and we played that a few times. It truely is the little things that are Gods greatest blessings!! Physically I don't feel much different then when I went in, but mentally, I'm appreciating life even more.

One more thing before I go! The power of one person is truly amazing. I just want to show this little picture - seen by thousands on the Television. Made possible by my friends at Garcia Boxing. Eloy Perez has gone green... for organ donation that is. Everyone of us can become a voice for what we believe in, just get the word out as much as possible and eventually someone will see the passion in your heart!

Saturday, October 16, 2010

Sicki Ricki

Sicki Ricki sat in her room
Sicki Ricki fell down and went BOOM
All USC's doctors, and all USC's men
Sent her up to ICU then.

heeeheee I'm like Andrew Dice Clay... only not so degrading. And as you can see... VERY bored.
I have now been in the hospital almost 3 complete weeks, and let me tell you, it is hard to stay sane in here. So you may know already, but blood -- you really need that stuff. How do I know? Well it all started about 2 weeks ago. (hehehe - just kidding with the dramatics) Anyway, I had been in for about a week, and the docs were still baffled at why my LFTs (Liver Function Test) were bouncing around so much, and did not just want to chalk it up the Hepatitis C so they decided to do a little more of an invasive test to check the bile ducts (my Bilirubin was up to 10.2 and they didn't quite trust the results of the MRCP - it's like an MRI) So they decided to to an ERCP which is when they actually go down your throat with a camera to the bile ducts and take a little looksy. They did see a little bit of narrowing of the ducts this time, about 25%, but it really wasn't enough be causing my numbers to be as high as they have been. They placed some stints there just in case and we all just hoped that it would do the trick. About 4 days went by and my numbers were still rising and I was feeling worse, with added weakness, dizziness, and something a lil gross - Black poo. I had mentioned it to one of the doctors (I thought maybe one of the medicines I was now taking was the culprit) Just a few hours later, I got up to go to the bathroom and had the spins a little, but by the time I started walking back to my bed, my head was in a sweat and the room was whirling around me, when I thought to myself... I feel like I'm gonna pass....... boom. The next thing I remember I was looking up wondering what I was doing with my arm twisted behind me on the floor. I was bleeding internally. I guess, though not common, an ulcer can form (mighty quickly) at the site and just slowly leaks blood. Mine had gotten bad enough to cause the fainting spell. (I would not make a graceful damsel in distress) After that they took me to ICU and gave me a few units of blood. The next day there was another camera down my throat to fix the "leak", another unit of blood and I started to feel a little better. I joke now, but actually those 4 or 5 days in ICU were probably tougher then the rest of the time I've spent here this stay. Not only do you feel like a fish in a bowl (there is one whole wall that is just glass facing the nurses station. I was hooked up to IV's pumping me full of fluids and antibiotics that kept me going pee every hour, and I was hooked up to so many other monitors that had to be removed every time you had to get up, that I didn't even want to get out of bed to go... which by the way, the toilet was literally 1 inch away from the glass door, with only a curtain for privacy. Nice.To top it off, no shower and the smell of everyone else sick in ICU wafting into your room... (That's all I'll say about that) By the time I got out of there and back to a regular room, I didn't even care that I was still in the hospital... well almost. (Oh, and some interesting info -- to get rid of smells you can put coffee grounds in a little bowl, it soaks up the yucky smells and makes you feel like you're in Starbucks) Any ways, it was tough, and I found myself becoming more and more discouraged. I mean they are telling me that they really don't know what is wrong but I am getting sick again, and the only thing I kept thinking was "Well let me outta here then so that I can enjoy the precious time I have left with my family." I mean I haven't even gotten a Halloween costume for River yet. I was even crying to Jason to just sneak me out and take me home... "I'll come back... eventually" but he wouldn't do it. Once I got back down to the 6th floor, where I usually stay, logic started coming back, and self-pity started leaving. This really is just a bump in the road. No one really knows when they are going to go - no matter what a doctor may think.And, there are so many out there even worse off then me, many sleeping in the rooms in this hospital. I just have to continue what I was doing, go with the flow, pray for the best, and expect anything.

Hopefully I will get out with in a few days so that I can enjoy the rest of the Halloween season. Take River to the pumpkin patch and the Disneyland Halloween bash!! But for now, I am going to call the nurse in to give me some Benadryl, wrap my feet in cold washcloths (to help with the itching) and call it a night.

Wednesday, October 6, 2010

They call me Mellow Yellow

...But not today! I'm still yellow, but not mellow. I have been in here 10 days now and was told that I will be in until Friday at the earliest. Tomorrow the docs want to do an ERCP (where they go down the throat to check out the bile ducts) and are hoping that there is a huge bile duct stricture (in the doctors words) but sadly, I have a feeling they won't find one. I am guessing that it is just the Hepatitis C coming back. According to the Hepatologists, it is coming back pretty strong, so they want to start the treatments again on me pretty soon... like next week soon. Rats - I was hoping to wait at least until the new year... I did the treatments already in 2001 with no response, except the response from my body saying it did NOT like it. I lost a lot of my hair, stayed in bed (garbage can close at hand) with chills, aching bones, headaches, for many many months. And this time I have a 4 year old to take care of and all during the holiday season. (Yes, I'm whining right now) Oh and... they said the percentage of me going into remission drops from 50% to 25% after transplant, but they don't think I have time to wait for the new treatments to come out before starting. Needless to say, I need LOTS O PRAYER right now - it sounds weird, but we're praying for them to find a bile duct stricture. hehehe. Other then that, everything is doing pretty good. I can tell my husband and mom are becoming tired again, so hopefully they will let me out soon, besides, I really am getting sick of the food here. (Don't worry... mentally I am actually ok - there is just really no other way to put all this information without sounding like a whine... the only thing I am whining about is having to start the treatments before all the holidays... I love to decorate, bake, and shop a lot these next few months, and I have a feeling I won't be feeling it this year so much now.) ...but who knows, maybe with my new liver I will still have more energy then I'm giving myself credit for. :)

Monday, October 4, 2010

Poker with a Purpose

The Hyatt Monterey
1 Old Golf Course
Monterey, CA

Saturday, November 20, 2010
Starts at 5:30PM
$60.00 Buy in
WIN Cash and Prizes!!

Mark your calender for a Poker tournament to help Ricki and her family pay for the medical expenses of her second gift of life. OH YA, it's gonna be AWESOME.


Sunday, October 3, 2010

Day Six

Day 6 and I won't be going home today either. Though my LFT's did drop some, they want to keep me at least until tomorrow. Yup, that will be 7 days... the same amount of days I was in for the actual transplant itself.
A bit of good news though is that my immuno-suppressants have been lowered again. I am on only ONE pill a day, whoo hoo. 0.5mg of prograf one time in the morning. Dr Matsuoka came in this morning to tell me, and as long as my labs don't start going up, they will be able to keep me on this dosage. This should help to keep my HepC at bay, and also of course just helps so that I do not have so many of the side effects that go along with all the drugs that are usually needed to keep my body from rejecting this new liver... but I knew that Sally was going to feel right at home. hehe. Speaking of home... man, I miss my home!! Jason brought River to visit yesterday and today, and besides his million questions and making me nauseous from moving the bed up and down, up and down... it was great to see them. The other day my mom said that he was standing outside and picked a dandelion to make a wish. He thought real hard and decided to use his wish on wishing me better and coming home soon. I'm coming bubba!!!

Saturday, October 2, 2010

Biopsy #4

Last week, I started to lose my appetite again, (just ask my full pint of Ben & Jerry's "Half-Baked" ice cream from the week before that is still in the freezer - almost untouched) and not only that, I am now nauseous after I eat again too. It feels like it did prior to my transplant, and that scares me... I don't know if it is mental or what, but it seems even more difficult to deal with the sickness this second time around. (It's probably mental) This Monday when I went in for my clinic appointment I was even worse then the week before, and my labs showed it. All of my LFT's were up, even my Bilirubin, which had been one that stayed within normal range, was at 4.1 (which is why I have been so itchy and a lil yellow looking). The doctors admitted me again -- which this time, I wasn't so disappointed because maybe I could get some good meds via I.V. for some temporary relief.  However, it wasn't all fun and games for me... hehe... Wednesday they broke the news that they wanted to do another biopsy that morning, yup, that's biopsy #4 for those counting... Luckily there was no rejection, but the Hep C was again showing its ugly head, my new lil liver is inflamed. (Sorry Nancy - you gave me a perfect sliver and look at what I've done with it) Of course I fear the worse at times - the other 3 HepC patients that I am aware of that had transplants, have not shown signs of inflammation yet, and they are 3 months to 6 years post transplant. But deep down, I have a good feeling that somehow I will be ok, just not as quickly as I had thought and hoped for.
Because my liver is showing signs of HepC instead of rejection, my doctors have began lowering my anti-rejection meds... which is a blessing in itself. As of today, instead of the 14 pills I was originally taking (only counting the anti-rejection pills) I am down to 2 pills... alltogether that is less then 10 a day that I take. whoooo hooo... and as long as I do not show any signs of rejection, it will stay like that, which means I will be less likely to get skin cancer, diabetes, heart or kidney disease then I would have if I had to stay on all those original meds.(That is one smart body I have, it knows not to reject a good thing. hehe) Now hopefully since they have reduced all these meds, my LFT's will start to drop and there won't be any more inflammation right now.
For now, the doctors had a conference yesterday and discussed my case. They are debating on whether or not to start the interferon treatment again on me... and if so, when to start it. This is another thing that is really hard for me to think about right now... I was just getting used to feeling good and these treatments really put me through the ringer last time, and now I'm almost 10 years older. I do trust in my doctors though. I have prayed very hard that God guides them through each decision with me. But again, hopefully my LFT's will drop and there will be no need for treatment yet anyways... and then maybe I can get home and start doing some livin'. I've been in here 1 day short of my actual transplant! and that is depressing!! Even River is saying he misses me... and usually he is just happy to be at his Ahma's house with the dogs (and doing just about anything he wants) but my mom said that yesterday he picked a dandelion and before he blew it he wished for me to be better and come home. Isn't that the cutest!?! He has such a beautiful little soul. I can't believe I haven't seen him in 6 days - that is definitely the toughest part of being here.
Well it is 4:00AM and they just came in to draw my blood... Praying the LFT's are down and Sally is a happy liver again. I'll keep ya posted.

Oh, and thank you guys all again!! Your prayers and warm wishes really help to get me through! :)

Monday, September 20, 2010

"She's got the Jimmy legs"

Before I forget again... I've been wanting to ask, anybody out there on anti-rejection meds that has the "Jimmy Legs"? ...I am assuming that it is the meds, because since I have been out of the hospital I have kicked my poor cat twice now. (He does get very offended by this. When I jump out of bed to find him after, he turns his back to me for a minute or two, completely ignoring me, until I have apologized enough in kitty massages) I have also kicked my husband a few times... (ahhhh, no apologies there, he looks up confused and I just pretend I'm still sleeping. muwahahaha)

I've also got a mild case of the "Jimmy Arms". Yes -- they do have that too... but luckily for my husband, so far all I have done is wake up with my arm (or arms) outstretched, still reaching for something from my dreams. Speaking of my dreams... they have also been VERY strange and strangely vivid. Mostly high anxiety type dreams, usually consisting of me running, hiding, fighting, or very late to something... but maybe it is just me, not the meds so much... anybody?

Ok, I better get back to bed. I've got another MAG-nificient Monday tomorrow... errrr, today.

Wednesday, September 15, 2010

Blaaah Biopsy!

Yesterday was not only my second biopsy since my transplant, but it was the first time I have thrown up since the morning of my transplant. (Darn, back to day 1) It was definitely nerves plus the meds, less food in my tummy... They had gotten me prepared for the biopsy -- neck scrubbed down, towels placed around the spot, large sterile blanket placed over my entire body, with a hole on the neck area taped down... and then, blaaaaaaaaaaaah! All over the side of the bed. With me apologizing in between. After a few minutes of that, and some stuff for my tummy, I was ready for them to start all over again. Another 10 minutes (and about 20 more apologies) and it was time to give me the good drugs. hehee. I actually stayed awake during this one. The worst part of it was the shots of numbing medication to the neck, other then that, a little pressure and some strange movement in my chest was all I felt.
The results on the other hand... not as good. According to my docs. the Hepatitis C is beginning to affect Sally. I had been hoping for something a little less permanent, but I knew eventually the HCV would return. It is hard to take in, that possibly within the next few years I will need yet another transplant... If I am given that chance at all. I pray for Gods will to be done, but it scares me to think that Gods will may not include me being on this earth for many more years. I do know though, that the time my new liver has added is completely worth it, and a miracle in itself. My son will forever remember me and how much I love him. --I am definitely not saying my time here will be less then everyone else though, I can go another 5, 10, or 30 years with this new liver.There are also new treatments like I have said, though it may include the combination Pegalated Interferon and Ribaviran, it adds boceprevir, which can increase the "cure" rate from 30something % to over 70% for my genotype, and for that jump in percentage I am willing to go through the nausea, vomiting, headaches, hair loss, and fatigue again. But there are more treatments in trials, like INX-189, which may have less side-effects.Hopefully one of these will be a possibility for me soon, but for now, we will take it one day at a time and try to enjoy each moment given to us. :)

Monday, September 13, 2010

2 months down...50 years to go!

Well, I was hoping to be writing this anniversary post from my ETC room while eating my tacos and getting my Mag drip... but as it turns out instead, it will be a mag-nificent Tuesday...  though, it will include a not so fun biopsy, boooooooo.  My enzymes are still climbing, so they are going to do the biopsy as well as check the bile ducts for blockage, at which point they will put in a drain (if there is a blockage) So that is that... I do hope that they get my magnesium under control soon. I am starting to look like a scared Chihuahua... except, since my transplant, I have incorporated a new diet rule... Always order dessert, you never know when it might be your last day in here! (the hospital, that is... although I guess you could apply it to life in general, but then I'd be really chunky) Which I actually better stop anyways, because I have been in the hospital more days then not lately. :)

On a different subject... I am becoming increasingly concerned about my sons womanizing ways. hehehe... You may have heard a few weeks back, when we went to the store to buy our bikes (I'll tell it again just in case) There happened to be a young girl (about 8 or 9) He started following her around the store... around and around and around - it was a small store... I'm not sure if he asked her name or if he just wanted to change it, but he announced that he shall call her "Flower" he then told her... and everyone else in the store that he came across, that she was pretty. Somehow, the lil' guy won her heart because before she left with her dad, she gave him a bead off of her charm bracelet... which he slept with that night (and to this day it sits on his dresser) I did later find out that he also calls my little sisters friend Flower (Sorry Susan, I guess it is just easier to call you all by the same name) but it doesn't end there... this last week we went out to dinner, and a couple with their young daughter sat down at the booth next to us. My son whispered to me "Can I sing a song to her" and pointed at the little girl. I told him that he could after he finished all of his dinner (which I figured, like usual, he would NOT do - I know, I am mean) However, on this night he must have been really hungry, or he just really wanted to get her attention, because he finished that meal! I apologized to them as soon as he stood up and got ready... saying, I bet you weren't expecting dinner AND a show. hahaha (nervous laugh). He then proceeded to sing "Another one bites the dust" while doing the robot and some break dance moves, until I finally told him that he needed to sit down. They didn't seem to be upset about this serenade, and it definitely got their daughters attention... but like I said, I am becoming very concerned. tehehehe

Wednesday, September 8, 2010

The Young, The Old, and The Sickies!

Now, don't take this personal... but I am going to reiterate this one more time. IF you are sick with a cold or flu, or have been in the last few weeks, (heck, I don't care if you just think you have allergies) show me the same consideration as you would a newborn babe... and stay away from me! This is a new found phobia for me, but with great reason! I must admit, though it may be the steroids talking, I have very little tolerance for people who do not show great concern for this -- and will make it known. 
A few weeks back, a patient in my transplant clinic came in (wearing a mask) with a woman sniffling and coughing like crazy, she however, was not wearing a mask. This bothered me... greatly. Never mind the huge signs next to a station of hand sanitizer and masks for your convenience that says "COVER YOUR COUGH" (which is actually in all hospitals and just common flippin' curtousy) But she had to have known how easy it is for us transplant patients not to get infections... her husband was wearing a mask for Gods sake. Still she sat down, with us transplant patients watching in terror. (hehehe) and me shaking my head in disgust. (I'm telling you... ROID-RAGE) however, I did nothing but continue to give her the evil eye every time she coughed. That is until she went to the bathroom while her husband went in to see the doctors... she came back and plopped herself right next to me. Her butt had not even hit the chair when I jumped up and grabbed a mask to put on. She at that point got the hint. (I'm guessing) because after at least a half of an hour of being there, and spreading her germs, she got up and got a mask for herself...(I would have loved it if all of us patients would have stood up and cheered) I know, I'm brutal -- and I have never been that way about these things until now.
Now, I know that most people are unaware of how bad certain infections can be to us transplant patients, or that like newborns and elderly our immune systems are so weak... They go around spreading their colds and flues like gumdrops and smiles (don't ask... I don't know where I come up with these things) ... they just don't think about it, know, or maybe even care. But for all my family and friends... (that read this) NOW YOU KNOW!! So remember, because right now, as I type this, it is 3:00 in the morning, and I have just been woken up for the umpteenth time... Why you ask? Because I am in the hospital again, away from my son, costing me money, and exposing me to even more infections. (And that I know because I had left 2 different waiting rooms while waiting for my room today (for 7 hours, but that's a whole other story) due to people coughing, sneezing, and just plain sick looking.) The reason for this hospital stay?? My AST/ALT levels have jumped up this time which could be due to A. rejection, or B. infection... but one of the first things my doctor asked me was. "Have you been around anyone sick" at which point I could have shot myself... or my in-laws. (Just kidding guys. I was very happy to see you, and had a lot of fun) Anywho, not placing any blame here... But they visited us over the holiday weekend from out of town, clearly infected with some bug...  and I'm telling you now again... every single one of you... I love ya's all to pieces, but if you have so much as coughed in the last few weeks, stay away until you are completely better... and if you are at all offended by this... just plain stay away! Ahahahaa. No, really though, even if we don't become deathly ill (which is sadly possible) the slightest infections can cause a rise in our blood work, which sends our doctors and us into panic mode. Even now, knowing that I probably just caught a cold, I am nervous and thinking, what if it's not a cold? Or, what if it is that I am sick, but it is something dangerous for me like CMV or Pneumonia? What if I have to be in here for days or weeks? What do I tell my son?... he worries. And, how long before I get sick of USC's tacos? Which besides their chocolate pudding and apple pie, is the only thing I really like. teheheee. I know... so many things... It's making me sleepy again. (Finally)

Here are a few good pages to read on keeping us patients healthy after transplant... I suggest you read it if you know a transplant patient too (like me) so that you know the do's and don'ts. Some of it is just common sense -- at least for us, but some of it, I hadn't even thought of... Like for us patients that are also parents. Contact your kids school faculty and let them know that you need to be contacted if any communicable diseases are going around. That's a good one.
USC's - Avoiding infection after transplant &
DukeHealth - preventing infection (This one says after lung infection... but I liked it for the examples)

By the way... I googled getting sick after transplant and got over 3million hits... which leads me to believe that this is no laughing matter. Please respect us sickies, and don't take it personal. It's not that we despise you... just what you're carrying. :)

I'm thinking that my next investment is gonna be in one of these bad boys... with a shirt that says "I wear this for my protection... not yours!" ahahaaa.

Thursday, September 2, 2010

You're not better yet??

I think that every single sick person wishes at one point or another that the way they feel could be seen on the outside, whether they have liver disease, cancer, or fybromialgia... it doesn't matter, every sickie experiences AT LEAST one roll of the eyes, sigh, or question that leaves us feeling misunderstood and a bit like a drama queen. Most of my life has consisted of these, and even now after months of collective hospital stays, close calls, and 7 surgeries, I still get the feeling like some people look at me with doubting eyes that say "You're not better yet?"
In all situations, no matter how hard I try, the need to validate myself results in a somewhat defensive explanation of what is going on in my body at that specific moment (which is usually waaaaay to much information) hehee. Even now, less then a month and a half post transplant, I find myself explaining that my new liver isn't even completely grown... my 20something pills have side-effects... my magnesium is constantly low enough to cause seizures... and most recently, that my last procedure to check for Ovarian Cancer has left me with a constant cramping (which I find ironic since I don't even have a uterus to cramp up on me) --Try explaining that one to the naysayers... ahahaa. Either way, I can't win because after explaining myself, I feel like I am just whining anyways. So instead, I find myself pushing myself a little harder then I should, not mentioning when I hurt, and even flat out lying when certain people ask me how I am feeling.
Some of this could be my own insecurities. I am definitely questioning my own healing process... it feels like it is taking way to long, but then I need to remind myself that I could be one of the many that are still in the hospital one month post transplant, or that I would still be waiting had I not had my living donor. (That one gives me chills... had it not been for Nancy, I may not have even been here to write this) So no matter how long it takes, and no matter what others say, I just need to take it one day at a time.
I was told once that when you're sick you get about 2 weeks of attention (I'm adding understanding and patience) by others after surgery/sickness, and I completely agree. Though I understand that our care takers and others close to us become frustrated and burnt out... just remember, we feel the same... only every second of the day. There is no escape for us, and add that to the frustration of being in constant pain or not knowing when the pain is going to begin or end... We are likely to be a little short fused.
The only advise that I can give to those that deal with us sickies is to remember things like "The Spoon Theory" and I know I have mentioned things not to say to a sick person... but I found this little thing on what you maybe should say. (Notice how they don't ask if we want any help... they just ask when)

--10 things to say to a sick friend

And for us sick ones... give others the benefit of  doubt. Most people are trying to help, no matter how they approach it. Just because we are sick, doesn't give us the right to treat people meanly... remember that our true selves only come out under extreme pressure, everything else is what we paint for others. In other words, everyone can be a great person on vacation when times are good... but it is what we do in times of trial that show who we really are.

Monday, August 30, 2010

Fancy dinners

I got my AFP test results back today... Now, it doesn't confirm that I don't have ovarian cancer, but it's a good sign that it is not... or at least that it is not far advanced (in my expert opinion). Prior to my transplant, my AFP tumor marker tests were up in the hundreds, (normal level for an adult is under 20) however, today my markers are at 4.5! YA BABY!! They were definitely elevated due to my failing liver! Hopefully I will get more (professional) details at tomorrows appointment to set my mind at ease.
Today, I also realized just how different I have become since before my sickness started taking over my life. Now - no offense to "advanced aging" people, but if you haven't noticed... they tend to be feisty and have more of a "I don't give a damn" attitude. You can tell this by their driving, I really think they don't even bother looking behind them when they are backing up... they're just like, "I'm comin' out!" and then there is the way they dress, either complete comfort or dressed like you may never see their wardrobe again. (in every color of the rainbow and wearing every accessory they own.) tehehee... I say this with love and now understanding. I mean really, who cares!! Live it up... enjoy! Carpe Diem...
I read recently, a woman who in her last years said that her only regret was not making enough mistakes... She led a cautious life. Ate to many beans and not enough ice cream. She would have had more real troubles, but less imaginary ones... --I think of all my stories that bring laughter, like the time me and my cousin went out dancing and got lost on the way home... somehow we ended up on an airport runway. It still cracks us up. Mistakes, adventures, silliness, and bravery make up most of my best moments... and that is what I want -- A life full of moments! In order to do that, you have to be adventurous, not give a damn, and by all means have an open mind. Even in the hospital after my transplant, I realized that my first long hospital stay, I had kept my door closed always, but this time, I left it open - inviting people and experiences in. (simple thing, but I think it says a lot)
Last night, Jason and I were invited out to dinner (which I could have played it safe, who knows... I could get sick or sleepy while out) but we went, I overdressed, and had a great time. To tell you the truth, not only was the company and food great, but it was by far the fanciest dinner we had ever gone to. Which of course I did not mention there, in fear of sounding a bit like a hick.(Thank God River wasn't there... he takes his shoes off everywhere, including all restaurants. tehehee) This was obviously NOT their first fancy dinner. The dessert alone cost as much as what I try to normally order my entree at... but it was gooooood! However, after we got home I thought about it; and even though I would have had a coronary if Jason and I had paid for that meal prior to this experience, It was something that I now think everyone should experience -- at least once. It was such a treat. I personally am a food lover anyway, but to experience such rich, beautifully prepared food was definitely one of my moments.
And to our friends, if you are reading this (and I hope that you aren't. tehehe)... Thank you so much for a lovely dinner... Now give me a goody bag or all of your secrets and inner-workings will be blogged. (Just kidding - really)    

Friday, August 27, 2010

Just a lil Thank YOU!!

I'm just sitting here getting my Magnificent Magnesium drip again... waiting for my tacos (tehehe) and reading my latest comments from my friends (old and new) and family and wanted to give you all a huge THANK YOU! For all of your support, love, and laughs. It really helps, more then you know! Hopefully I will be able to repay the favor some day. Love and prayers are being sent your way, and for all of us that are fighting battles... Lets keep the faith. We can do it!!

Wednesday, August 25, 2010

Good News / Bad News

The good news is, My liver is not in rejection, nor is there any of the Hep C virus present in my new liver (yet). Sally is a happy camper, and I will be going home tonight (after more magnesium, of course)
Now the not so good news. While doing my MRCP (which is similar to an MRI) The doctors noticed a mass, a possible cyst on my ovary. (Which I have had before and are quite common) They wanted to investigate. So this afternoon, I was sent down for a pelvic ultrasound (the "invasive" kind... and I'll just leave it at that) When I asked if I could see the cyst, my tech said she wasn't so sure it was a cyst... she wasn't quite sure what it was. "Oh, oh" I thought... I watched her spend a lot of time on the left ovary, and then as I was ready to be wheeled back to my room, she did the dreaded shoulder tap. (Not good) On the way back, I started thinking of all the things it could be... maybe just a clump of scar tissue from when I had my partial hysterectomy? But my mind kept going back to my AFP levels. Just before my transplant, my AFP tumor marker began raising, which doctors automatically attributed to my Hep C/Cirrhosis.... Besides, who would have Ovarian cancer at my age, on top of a failing liver?
My nurse coordinator came in soon after I got back from the test, and I asked her, could it be scar tissue? Good thinking, but no, It is a complex mass. (darn, to easy) At that point I asked about the AFP levels prior to my transplant... and as I am typing this right now, a lab tech is leaving my room. He just drew blood to check on the AFP levels now, post transplant. (They should be back under 20, I believe, since Sally is doing great!) If they are still elevated and in the hundreds like they were before, I'd say we have a problem, but I am no doctor. I did get told I was Doctor Sher's favorite patient for being so proactive, and knowing about this... But right now I'm kind of kicking myself for not being a little more proactive earlier. I had thought about it before, because I have been having some pain in that area, a sort of tightness. But wouldn't my primary doctor have thought about it too? Of course this is the same doctor that kept prescribing me anti-depressants for my decompensated cirrhosis, and never once followed up on any of the symptoms like constant vomiting and edema/ascites.
Any ways,no point in crying over spilled milk now. They want follow up done by a gynecologist within 1 week. It could be Cystic neoplasm, a dilated fallopian tube, or a follicular cyst. However, if these AFP levels are still on the rise, that is going to be a very bad sign that is not the latter two.
I do believe that it can't just be coincidence that they happen to see this now, so whatever it is... I know I'll get through it like I have all the other things... but coooooooooooome on!! Give me a break here. hehee. (Big sigh) I'll keep you all posted, but I doubt I'll get out of this without at least a few more invasive tests and another biopsied organ.

 can go ahead and print that out and blow it up. teheheheee (I would... but my luck I would end up with some head trauma too.)

Saturday, August 21, 2010

It's 9:00, do you know where your meds are?

 As soon as my urgent sounding phone rings at 9:00 AM and PM I make my "blaaaah" face and then frantically jump up to grab a Gogurt (or whatever I have on hand) so that I can take my medi-cocktail. Right now, it is an ever changing combo, and definitely feels like two more complete meals. It is also slightly embarrassing if we happen to be out and about at the time my (The alarm itself is a big "HEY, LOOK AT ME")... but, I learned real fast to keep my next dose of meds with me if I go anywhere. You never know where your day may take you, and it sucks having to cut it short to go home and pop your pills... and I don't think a cop would let me slide if I said I was speeding home to take my pills on time. hehehee. Yes, I do know the importance of these pills (and my fungal jungle juice too) ...It really is a big responsibility taking care of someone elses liver!
Since my liver numbers are not dropping like they should be, my combination is pretty much changing every time I have my labs drawn, which is, right now, every Monday, Wednesday, and Friday. This last Friday when I went to check in for my labs, my registration said "labs and biopsy" (Double Gulp) but after getting my lab results back, my counts had not gone up (or down :() so that meant no biopsy again, at least for this week. Sally and I were very happy! I am still very concerned about my HCV, and why Sally is not improving much anymore, but I will try hard not to worry about it until I know more. I'll just continue to try my hardest to keep my new liver happy and healthy... and try to keep my constantly changing meds straight. Luckily, (and I hate to be mean, but...) my nurse coordinator was "let go" this week. I was having some real trouble with her, not only was she very difficult for me to understand (you should have heard us on the phone every time my meds changed... Kind of important information to get lost in translation), but she was also not very helpful, and well... sometimes plain rude. (Not to mention, she forgot about me at least twice while I was waiting for my results so that I could go home... the last time adding a total of 4 hours to my wait at USC.) I was sick to my stomach having to go in there Friday, and asking if I could change my coordinator. (Though I admit, I am VERY proud of myself for doing it) God knows I hate confrontation, but as soon as I (quietly) said it out loud, I received a smile and 4 great words "She's no longer here" Problem solved... and I had nothing to do with it, (I think) And just to say, she is the only one I've had problems with at USC. But  I digress. Muwahahahaa. --Back to my meds... Soon, hopefully we will get them regular and later, start slowly removing some of them. They do have side effects, some causing skin cancer, kidney problems, ulcers/bowel problems, diabetes, high blood-pressure, balding, Roid-rage, moon face... just to name a few (and these are the common ones, I believe it is something like 75% of transplant patients get skin cancer) Needless to say, I'm keeping my sunscreen near the door, and am on the look out for a cute umbrella with UV protection.
Below is my list of meds... and being that it is Saturday night, it is also part of my new routine to prepare my pills for the week. (whoa nelly, I'm party animal!!) hehee.
  • Prograf (Immunosuppressant) Side effects include insomnia, tremors, headache, high blod pressure, high blood sugar, hair loss.
  • Cellcept (Immunosuppressant) Side effects include diarrhea, nausea, abdominal discomfort, and changes in blood cells count.
  • Prednisone (Immunosuppressant) Side effects include stomach ulcers, huger, weight gain, swelling, moon-face, high blood sugar, acne, mood swings, bone weakening, and cataracts.
  • Pepcid (Antacid) protects from all the above anti-rejection meds, especially the Prednisone.
  • Bactrim (Anti-Bacterial) Side effects include nausea, diarrhea, and rash
  • Nystatin (Anti-fungal) ...I call this my jungle fungal juice. Side effects include skin irritation, acne, skin streaking, unusual hair growth, and dryness.
  • Valcyte (Anti-viral) Side effects include diarrhea, constipation, nausea, headaches, and dizziness.
  • Magnesium-Oxide (Mineral) Side effect (just the normal one) is diarrhea.
  • Prozac (Anti-depressant) ...I've got nothing but love for my prozac. tehehee
I have to say that so far (at least for me) none of the side-effects have been half as bad as how bad it was prior to my transplant... have I mentioned I STILL haven't thrown up since the morning of my surgery... (Not sure I'll ever get over that!! So amazing)

By the way, do you like my temporary tattoo? tehehe, as soon as I can, I'll have one much more permanent. (shhhhh, don't tell my docs - jk, I go to a very professional and STERILE artist.) And don't worry, I will tell my docs myself... they are only there to help.

Tuesday, August 17, 2010

What's goin' on now!?!

Hey guy and gals, I have been trying to write this update since last weeks blood tests, and have just decided to be honest without the fluff. Last week for the first time, they brought up the "R" word, which is common (and scary enough) for us transplant patients, but what I was mostly concerned about, was the thought that my Hepatitis C could be coming back strong (which the doctors have been telling me not to worry about that yet since day 1 post transplant... until yesterday) This weeks appointment, my levels had raised again slightly which began to raise a red flag, that maaaaaybe it is time to start worrying about it for me. Hepatitis C will always come back to invade the new liver post transplant, but one can only hope that it will cause little or no damage to this new gift, or at least take another 30 years or longer to destroy it completely. However, this is not always the case. Studies show that in some cases, HCV will come back with a vengeance and cause cirrhosis and liver failure with in 5 years post transplant. (That puts me at about 35 years old... River at 9) To which I was told by a doctor, "That is better then the 1 - 2 years we gave you prior to your transplant" (True, but so NOT what I wanted to hear.)
So tomorrow, I will have labs again, and will most likely be admitted for more tests, including a biopsy on Thursday. (which I am actually happy that they will be going through the neck artery, down to my liver to pull the sample - I may be weird, but it sounds less invasive to me) This will tell us if it is rejection or my Hepatitis C that is causing elevated counts. ~~I have no idea which one I'm supposed to be praying for... except that maybe it's just a fluke, and the counts will just start dropping again? But if not, something will need to be done.
The treatments for these two things are opposite of each other. For rejection, they will need to raise my anti-rejection medications, for HCV, they will need to try to lower the anti-rejection meds as much as possible to slow the progression of the Hep... however, they need to be careful, because lowering it to much will cause a rejection episode... it's all about balancing the necessary evil.
They are also trying to figure out why my Magnesium is still dropping so much. Supposedly it is normal for a few weeks after surgery... but not this far out. The main way Magnesium is lost, is through urine... so (it doesn't seem like a good idea to me, but I'll go with it) they want me to raise my salt intake... the theory being that I will retain water, not pee as much, and keep what magnesium I absorb in, instead of losing it to the fishies.) We'll see how that goes... but I'm not holding my breath on not needing an infusion anytime soon.
I am trying to control myself, trying to take it easy, which I messed up on today by picking up River to put him in his room... it was quick - I realized it as soon as I did it... but it did hurt, so I definitely need to still heal some. I also noticed that my main bald spot has gotten slightly bigger, but at least it is coming out a little slower then I originally thought, and a lot slower then it did when I was on the Peg-intron treatment (Those were serious clumps... and let me just add, when you are sick, losing hair and taking a shower, it is best to keep your puke bucket with you because you do NOT want to clean that mess out of your drain. blaahhh) Not that I have had to worry about that since my transplant... I haven't thrown up since the morning of my surgery!! So besides waiting for the outcome of tomorrow... everything is going pretty good!!

Monday, August 16, 2010

A lil more on Perez... I think I'm a boxing fan now.

Just a few more pictures...(I stole from Melissa) :)
 Photo report: Perez-Campos
Photos and report by Rocco Morales
Before an enthusiastic crowd at the open air Pico Rivera Sports Arena, NABO super featherweight titlist, Eloy Perez, proved that he is amongst the elite in his division by totally overwhelming the solid Derrick Campos. In a scheduled 8 round non-title contest, Perez used his lightning fast jab to set the tempo of the fight and keep Campos at the end of his punches. This strategy worked to perfection for as Campos only knew one direction, and that was straight forward, causing him to eat jab after jab from Perez.
Photos: Rocco Morales

Click the photo to go to the next photo
The best moment of the fight for Campos came at the end of the second round when he threw numerous punches after the bell had sounded to end the round. Other than that, however, it was all Perez.
By the fourth round, Perez had worn down Campos enough with the jab to start sitting down on his other punches and began landing his right cross nearly at will, puffing up Campos face considerably. Perez, who entered this fight with just 4 knockouts in 19 career fights, appeared to be a much more effective puncher than that statistic would indicate.
By the beginning of the fifth round, Campos looked to be a beaten fighter but, nonetheless, came out and gave it his all. Campos’ effort, however, was in vain, as Perez was just too fast and too strong. Midway through the round, the referee hovered nearby keeping a very close eye on Campos who appeared to be in major trouble.
Perez unleashed one final assault and Campos had no answer for it, leading the referee to waive off the fight, much to the chagrin of Campos, at 2:02 of the fifth round. In what would be his 29th professional fight, Campos was stopped for the first time of his career by the world class Perez.
With the victory, Perez improves to (18-0-2, 5 KOs) while Campos drops to
(20-9, 11 KOs). Perez, just 23 years old and currently ranked #3 in the world by the WBO, appears to have a very bright future.

Saturday, August 14, 2010

1 month POST Transplant

Whooo hoooo!! Yesterday was my 1 month anniversary (I know, I'm like a teenager again, celebrating my 1 month) tehehee... Can't help it, I'm so proud!! And to top it off, I had a GREAT night out, thanks to my friend Melissa and Garcia Boxing (and my mom for watching River) We went to the Eloy "Prince" Perez fight, and watched him TKO Campos is the 5th round. Now I must admit, usually I am more of a lover then a fighter, but even I was screaming (well, kind of...I don't really have any stomach muscles right now) for my man sporting a HUGE green ribbon for Organ Donation and kickin' some serious butt! I had taken some green ribbons for my friends to wear, but was almost in tears (Couldn't cry, cuz I didn't want my mascara to run on the tele') when Perez's team came out with green ribbons everywhere! How in the world did I manage that you're wondering... Well, I have amazing friends of course!! Garcia Boxing (who trains Perez) is no stranger to the shortage of organ donors. Max Garcia is the dad to a life-long friend of mine, Melissa, and 2 years ago, he was fighting for his life, waiting for a kidney. Like Nancy, Max had a living angel -- Angela, who donated one of her kidneys so that he could live... and living he is doing!! Lookin' GOOOOD!! I felt like a Princess, getting special treatment, even when I hugged Eloy and congratulated him on his victory, he did the same, insisting that my fight was a tougher one. (of course I puffed out my chest and did a little 1, 2 move. hehee) and today, I feel like I took a few punches to the body, but I wouldn't trade it for the world. It was another amazing night that I would never have experienced otherwise.
Even Sugar Shane Mosley was in the "green" spirit last night!! We got the word out to some people who didn't even know what the green ribbon represented when they first got to that fight last night, which was my main goal! We did good! It made me all the more anxious to get my organization up and running... I know, I need to finish recovering first, but I have so many new friends that are still in desperate need of organs, so I need to get on it, and fast!! I also know that in many cases, HCV returns and can destroy my new liver within 5 years... which means, well, I may have to do this all again... and it is my goal to not need a living donor the next time, because there will be no waiting list! It's a big demand, which would require just about everyone to become an organ donor, but call me hopelessly optamistic, because I think we can do it! ...It all starts with awareness, and that only takes me and YOU. So lets see what we can do! Even the smallest pebble will cause a ripple effect.

Tuesday, August 10, 2010

The BIG "R"!!!

  That's Rejection... (not Ricki) Though neither one of us are to be feared, I'm not to be taken as serious as the big R. heheee... 
Why am I even mentioning the R word, bad ju-ju!!! (nope, I don't believe in that... just ask my surgeon, who after the 5th or 20th time of me mentioning my previous DIC episode before my transplant, finally looked over at me and said straight out... "Shhh, don't mention that word again, we don't talk about that in the hospital" ...Like I was the CRAZY one) Anywho, yesterday was my clinic day, and I knew it was going to be a long one because I needed my magnesium fix. The last few weeks I have been getting infusions twice a week, but this was the first time I had gone 7 whole days without it... and I was feeling it. By Sunday night, I felt like I could pass out at any second from exhaustion. However, when they did my lab work, they also found that my ALT and AST levels had slightly raised, which can mean rejection...
So, what's the plan? More hospitalization? Another liver transplant?? Possibly, but not likely... Most likely, they will just need to change up my anti-rejection meds... Ok, not "just" but they have been doing this for years now, and have gotten pretty good at it, so I trust completely that they know what they are doing and will get my body behaving nicely to Sally again. 
So last night, my nurse called me back and told me to raise my Prograf .5mg and come back on Wednesday morning to see if the counts have gone down any. If not, then... well we will take it from there, but most likely I'll be getting more USC tacos (and you know how I likes me some tacos) ...I'll keep you posted.
Below is some information on rejection (for us liver patients, different organs have different signs). It is the word that any of us transplant patients dread to hear, for fear of losing our precious gift. However, it is more common then I thought, and if caught on time, can be treated successfully. Whoo hoo!!

The body's immune system protects a person from infection by recognizing certain foreign substances, such as bacteria and viruses, and destroying them. Unfortunately, the immune system recognizes a new liver as a foreign substance also. Rejection is an attempt by the immune system to attack the transplanted liver and destroy it. To prevent rejection from occurring, a recovering patient must take immunosuppressive medications, as prescribed, for the rest of his life.
In spite of all precautions, rejection episodes can occur. Up to 75% of all liver-transplant recipients will have at least one rejection episode, even though these people are taking immunosuppressants. The first episode often occurs within 2 months of surgery. Rejections are usually controlled by changing the dosages of immunosuppressive medications or temporarily adding a new one.
If detected early, most rejection episodes can be treated successfully. A patient should be alert to the signs and symptoms of rejection and inform his transplant team promptly if he has the following.
  • fatigue
  • fever
  • abdominal pain or tenderness
  • dark yellow/orange urine
  • clay-colored stools
A patient may not have any symptoms, but his liver-function tests may be abnormal, suggesting that rejection is occurring. This is why maintaining a strict appointment schedule with the transplant team is critical. When rejection is suspected, it is usually confirmed by a liver biopsy. Based on the results, the transplant team will decide the best treatment. As with all transplant patients, a patient may have biopsies at regular intervals to monitor his liver function.

Saturday, August 7, 2010

I've got the FEVER... Cabin fever that is.

Wow, mentally I feel like I have been out of the hospital for months... though, my physical "feelings" reminds me that it has only been about 3 weeks since my transplant. Still no driving, no lifting my son, bending over is still quite painful, and with all these bruises, I look like a serious domestic violence case. Actually, the last time I was getting my Magnesium infusion one of the nurses asked me if I was in a violent relationship... I said "Yes, but only with you nurses" heheheee.
Since this is my 6th surgery, I thought for sure I would be used to it, but I guess it is something you never really get used to - being dependent on others... I can't even open my windows, well... I'm not supposed to, but you try living in Southern California in summer and your husband forgets to open the windows before he leaves for his 12 hour day.
Speaking of my husband... Please pray for him. He is running around so much, he looks like a chicken with his head cut off. Being that he is "free-lance" if he doesn't work, he doesn't get paid and probably would be let go real fast, but since he is the only one bringing in any real income... he has to work, which means that pretty much a few days after my surgery, River and I were pawned off on my poor mom. Which isn't so bad, for the two of us at least, except sometimes I feel like a kid again... and there is a reason kids leave home at 18. hehehee. I will be happy when I can stand on my own two feet again! ...I think Jason has lost weight, we aren't eating properly, and no offense to my husband, because the fact that he has started cooking dinner for us in the first place is VERY impressive, but I am getting a little tired of broiled chicken, green beans, and white rice (sometimes he broils fish instead - same seasoning so it starts to all just taste like Ficken) heheee, it's actually very good, but we have it 3 to 4 times a week, soooo ya! I have started cooking a few side dishes this week... Spanish Rice, Gnocci's (Ok, I used the Gnocci's Jason's Grandma made and sent up, but I made the sauce) and I think by next week, I'll be able to cook a full meal without sitting down or taking a pain pill (which don't really work anyways - stupid glorified Tylenol) Not this week though. My ribs are one of the main things that bothers me. (In order to put Sally in, they had to separate and hold my ribs apart) ...Bra's are really tricky right now - I know, TMI Ricki, TMI!! Back to Jason, He also has to do all the grocery shopping, cleaning the kitty litter box (forever now, since I cannot be near animal feces with my new liver... awe, darn!) and, he has to deal with ME on STEROIDS, can you say ROID-RAGE. I am on an emotional roller coaster, and not used to being this tightly wound. One little thing can get my blood boiling, but hopefully my doses will be lowered soon. This will help the balding too, yup... one more side effect from anti-rejection meds. I swear, luckily I am not vein, and happen to be a fan of Sinead O'Connor, tehehee, but again... My poor husband.
Sometimes bad thoughts come into my head. I wonder if I made the right choice, or was I selfish and cheated my death? Was this Gods plan, or did I force the hand? Am I really someone who deserved this gift when so many others are still suffering and dying? Is my Hep C going to come back with a vengeance to rectify my fate?

Don't worry, these thoughts ARE normal! They disappear just as quickly as they came, and honestly, I do believe that it is mostly due to the medicine and cabin fever... maybe a little bit of fear too, the devil tries to get in there, but I am confident - and MOST of the time, I am just plain happy to be alive and not puking! :) OH, and here is a little article (one of many) just to prove I'm normal. I will admit that for me, it is all about keeping my mind busy, which isn't to hard with a wild 4 year old running circles around me and asking questions about everything under the sun. Staying connected to the outside world helps too, even if it is just by writing or facebook and twitter, although sometimes I do have to force myself to do these things too. Hopefully soon I will be right as rain, and can focus on what I really want to do, a program to help transplant patients, mentally and financially. Don't laugh, I think it helps that I in fact need help... with BOTH of these things. hahaha. I do have knowledge to share though... This ain't my first rodeo!
Whoooooooooo hoooooooooo! LIFE, live it then give it!!