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.