Sunday, March 9, 2014

48 DAYS LEFT...

...and we've got some stuff planned for you! Since my treatment didn't start Friday as planned, my sister, River, and I got together and thought of some ways to spread the word even more this April. Friday, April 11th is National Blue and Green day (it is, I didn't make it up) and we want you to dress in your most spirited outfit on that day, snap a picture, and post it to your social media pages with the hashtag #TeamAlbertoni. We will choose the three most creative/outrageous outfits on April 12th for some possibly awesome prizes. As if we needed the excuse, we got dressed up to give you an example.

Now, if you don't have enough blue and green, we can help you out there. Sign up with Team Albertoni for the Donate Life Run/Walk or donate a few dollars to the cause, and you can win some of the above "swag." We've got wigs, sunglasses, fingerless gloves, and wrist bands, so that you too can support the cause... Or wear it to your pub crawl on St. Paddy's Day. Hehe
Sign up ***here***



Friday, March 7, 2014

Abbvie trial start date

I'll just consider today a dry run... A few sleepless nights in anticipation and a drive to USC today, to find out that the new medicine won't be delivered until Tuesday. Well, I've waited 33 years, what's 5 more days? I did get to find out all of the side effects and stuff, so now I can just think about those possibilities until Wednesday. Just kidding, I'll enjoy my weekend, especially since it sounds like I may be a little sick for the next six months. I'm not complaining though, because I know that my doctor and nurse did a lot to get me on this clinical trial. Once I signed the Compassionate Use consent form I realized just how big of a deal it is for the FDA and Abbvie to give special access of the meds to USC for me. BIG DEAL. So no complaining for me... Just listing. :)
As for the side effects, besides fatigue, headaches, and nausea, there are a few that worry me a little. The first is that it interacts with prograf, which is my anti-rejection med. Instead of taking two daily, I will now be taking one prograf, once a week. If my prograf levels drop too low, I can go into rejection, but if they're too high, it has it's own set of consequences. The second is that it can raise bilirubin levels. (Remember "itchie Ricki" and "Banana mama"?) No fun! Of course those are just known side effects. There have only been about 1,000 people who have been on this treatment regimen so far, so who knows what kind of side effects a weird one like me is going to have. Positive thoughts... Im not really stressing about the side effects. My main concern is just that it works... And that I don't have some crazy allergic reaction to any of the meds. Positive thoughts... I do, I really feel like this is going to work.

By the way, you bunch of procrastinators... Have you signed up for Team Albertoni YET??? 

Saturday, January 11, 2014

Abbvie clinical trial

I got an email today from my doctor at USC... I'm not going to have to go to Arizona or Texas for the Abbvie "Sapphire" trial after all. I was accepted, but they are letting me do the treatment at USC.  I'm so excited. A little nervous, but mostly excited. My doctors have to file some paperwork with the FDA or something, it's all very official. So it will probably be a few months, before I start, but it looks like it is really going to happen. 2014 is going to be awesome! Well, maybe the last half of 2014, we'll see how bad these side effects are going to be.
By the way, have you signed up for TEAM ALBERTONI yet?!? 

Sunday, January 5, 2014

Hello 2014!

Happy New Year everyone! I'm going to make a big prediction and say that this is the year that I beat Hepatitis C. I'm not going to lie, 2013 was a little tough. I was all about being positive last year, and then the gastroparesis started again,  the fibrosis advanced, and then treatment? No, no treatment yet. It could have been worse though. And on the bright side, my tummy issues are a little more under control. Raw veggies do not digest well, especially lettuces. If I stay away from those (I miss my salads) I don't usually throw up. At least this time I know about the gastroparesis going into it. Every time my liver damage advances to a certain stage, it acts up. And so far, my stomach has only given up on digesting difficult foods. No judgement here, tummy. You just keep digesting my dessert and we'll be fine. :)
So I'll just watch what I eat, and work on staying positive... Again this year. No matter what happens. Honestly, I need to work on staying in the present this year, too. Sometimes I have nightmares where I'm back in the hospital, and then when I'm awake, I'm thinking about making it to treatment. Not the way I want to live.
“Life is a preparation for the future; and the best preparation for the future is to live as if there were none.” -Einstein
 Although, I am preparing for the Donate Life walk in April, and if you're reading this, I want you there. It's going to be special!
Me and my Co-captain, getting ready. 
Hey! I feel really cheesy for saying this, but if you want to hear things (a little more regularly) you can like my Facebook page 'Three Livers and a Lady' I'm the lady. :) I had a couple different pages, and I'm trying to get organized in 2014,too. Besides, I don't plan on going through any more transplants, so I don't need any page with a name that jinxes me.