The Long and Winding Road

Every time I took my son in to the doctors, I would pretend that it was just a regular checkup, but  I knew that eventually, his blood work would probably come back with an elevated liver panel. In April he had his physical and we got that news. Needless to say, these last few months have been pretty tough for me. It is so different when it is your child. Today was his first appointment at the Children's Hospital. He was a little nervous, until I assured him that his "nuts" would not be touched. He was also a little concerned when he heard that he will need to have an ultrasound, because it sounded like it would make his ears bleed. "That's a little dramatic," the doctor said... That's my kid. Everything she went over, I pretty much already knew. He is not having symptoms. No jaundice, no edema, no chronic nausea, but I was so relieved to hear that his liver and spleen are not inflamed. When the doctor asked him if he gets nauseous, he said, not really, but sometimes he feels like he has to hiccup, and instead it turns into a burp that he feels from his chest to his ears. "It doesn't hurt, but it feels really weird. What's that from?" Lord, Jesus... "Probably gas," she said. Haha... story of my life. He handles everything like a champ. Which is good, because when it comes to him, I am a nervous wreck. I don't want him to go through anything I had to, and it doesn't look like he is going to have to. He has another appointment where they are going to discuss treatment options. There is no way I will put him through the Interferon treatment, but there are clinical trials going on that we may be able to get him on. I do want him to treat now, before he gets older and there is a possibility of damage.
I also have a few procedures coming up... an EGD, colonoscopy, and gastric emptying test next week. That's going to be fun. Especially since I am not having anesthesia, because I don't want to pay an extra $300. My liver is great, unfortunately, my tummy is still having some issues. Most mornings I have been pretty sick again, but I can't really complain because I am still 100 times better than I was when I had Hepatitis C. This has been one really long journey, but if we can just get River cured, and maybe my gastroparesis under control, I will be one happy camper, maybe even anxiety/depression free. Maybe... 

 

Officially Cured

It has been a while, and a lot has happened. Today I received confirmation that the Hepatitis C virus is no longer in my body. My newest liver is no longer being attacked and can live out the rest of its life as a happy, normal liver should. I am still planning to have a biopsy done (possibly in January) to see if any of the damage has been reversed. I'm hoping that I don't have any cirrhosis anymore either! It will be a Christmas miracle... Speaking of Christmas miracles, something that has always been a wish of mine was living in a house. Technically, we couldn't afford Jason's commute anymore, but found a HOUSE within our budget in the 'burbs, almost 2/3 of his commute time cut and he carpools.

Now that things are starting to calm down and my health is on a steady incline, I have been thinking of what I want to do with the rest of my life. I honestly never gave it much thought... Like living in a house, it was something that I assumed I wouldn't live long enough to achieve. I've always been good at my jobs, but I've never loved them. (The people are a different story) Unfortunately, since I didn't think I would live long enough for a college education to pay off, I didn't go. Now I wish I would have at least started. I don't see myself doing anything other than helping people that are in situations similar to what I went through. I've decided to start off by becoming a CRN and see how far I want to go from there. I just need to get a job in the meantime to pay for the certification. I don't mind, it feels great to finally have a plan. I had no problem with dressings, injections, or following medical instructions on myself, so I'm sure I can help others better than a (very) few of my nurses.

Lastly, even though our plans to adopt a child (or two) is on hold until we are a little more financially secure, we did adopt a fur baby. A five year old Boxer named Magic. I always thought of myself as more of a cat person, but since River had to move  schools and I was nervous to live in a house with out one, we went to the shelter and my heart was stolen. The interesting thing is that I have recently slept past 4:00 (USC blood draw time) quite a few times. I'm not sure if it is a coincidence or not, but I love it. My anxiety seems a little better too, but it could also be that I am not sick every morning anymore. Either way, things are looking up over here. For a long time, I didn't think I was ever going to write a post like this. Never give up. I wish I could bottle up this feeling and give it to everyone suffering. May the new year bring health and happiness to all of you.

Merry Freaking Christmas!

Sick girl for hire.

I got this lovely letter from social security yesterday. According to the government, you only need arms and legs to work, so I am fit for duty!

I knew when I walked into that chiropractors office for my social security "internist" appointment, and all he had me do was move my arms and legs, that I was in trouble. However, I was even more worried when he didn't seem to understand most of what I was saying, and after I listed off all of the side effects of my treatment, his eyes only seemed to flicker in recognition at the word "tired" at which point he pulled my eyelid down and declared, "You! anemic!"  Duh, I only mentioned I give myself procrit injections... Or did he miss that?
Of course it didn't help that I got Ms. Moore for my social worker. I knew right away with her too... It doesn't take a genius these technological days to find an address for a large hospital like Keck of USC, but apparently, my social worker does not use computers-- or phones. She sends letters (postmarked 7 days after her dated letter, stating I only have 10 days to return the information she requested.) asking for USC's address. Thank God I knew the answer, and her phone number.. And that was the least of my problems with her. There is someone who got into social work to really help people, right there.
So, apparently I'm ready to get back out into the work force. A few little things I should probably mention first. I can't really commute because I do tend to get sick, especially in the morning. (It's a little bit of a distraction while driving with my hands at 10 and 2, but my head in a bag.) Also, I can't move around too much or lift, on account of the fact that I am chronically anemic and also have gastroparesis, so I don't absorb nutrients which also makes me weak and quite dizzy. Speaking of the gastroparesis, eating is a tricky thing for me. Most days I am in the bathroom a lot, please don't mind the loud puking noises. (A bathroom is a requirement for me to work at your establishment) From time to time, you may have to come wake me from the bathroom floor, I tend to get especially weak after throwing up. Once I'm okay though, I will give my FULL 65%. However, I wouldn't recommend me working with money or numbers, on account of the "Brain fog."  I also can't do repetitive movements for long periods of time on account of the Rheumatoid arthritis that has been worsened by my treatment. My wrists and fingers swell and lock up pretty quickly now on the computer... I can give you a good 4 to 5 hours, tops of anything else though. (in between the vomiting, stretches, rest, and sometimes a stupor or two) Of course, after my work day, I will need someone to pick up my son, cook dinner, clean up a little, and maybe carry me to bed, because no matter what I do, any excursion will cause flu like symptoms for me into the next day. Guaranteed. I'm sure walking into your office and seeing my enthused and energetic face every morning (I make it in) will get you motivated for the day. Yes, for the last 5 or so years I would have made an awesome employee dancing to "Mr. Roboto" (in short intervals) or as an employee at the social security office. Hehehe. Maybe I shouldn't mention these things? Either way, if you think I sound like a perfect fit for your team, you know where to find me, either in the bathroom, or if in a 65% feeling moment, trying to compensate as a mother and wife.
I'm just kidding, guys... I'm not as upset as I sound, anymore... today. I am always quick to remember and beat myself up, because at least I have my arms and legs. :)

Surviving vs Living

A lot has happened in the last few months. Not only did I start the Abbvie clinical trial, but I am 2 months down, and I am testing as Hepatitis C FREE! I am still amazed every time I say it.

That was the biggest news, but secondly, we had the Donate Life Run/Walk on April 26th, and I smashed my goal of 25 team members! 35 Team Albertonians this year!! Hehe. It is always an amazing day, but seeing how many people came out to support us this year, was definitely the icing on the cake. Thank you to everyone who was there and/or who donated to the cause. I still have T-shirts and little gifts to send out to some people. I also have personal items that I was so careful to watch for my team members, and then forgot to give them back before I went home. :)

Normally, I am a lot more sociable, but these last few months I haven't even really updated anyone on my health. Maybe antisocial is a side effect? The side effects are not as bad as the interferon treatment though. I don't throw up every day, and I'm not losing clumps of hair, but I do have a quite a few of the same issues. The most serious physical side effects for me now are the gastroparesis and anemia. Every time my liver starts to fail, my stomach does too. The doctors are hoping though, that this time it is just because of the treatment and that once I am done with it, my stomach will start to function again (or better at least).
The anemia was an easy fix, in theory. I have now started taking Epogen shots 3 times a week to raise the red blood cells. Though, that has it's own lovely side effects, mostly sore bones and anxiety. Getting the prescription was the main problem. My doctor had started to lower the dose of one of the trial medicines, Ribavirin (it is what attacks the red blood cells) but I was becoming more anemic; shortness of breath, fatigue, heart palpitations, dizziness... and we couldn't afford the co-pay of the Epogen, so my doctor stopped the Ribavirin completely until I could get it. We tried a few things, but honestly I couldn't ask Jason to max out his credit card just to pay for part of the first month. I was also scared that stopping one of the three meds would cause the Hep C to start coming back or mutate... That's when I said forget it, I've done all that I can do. I'm done worrying about it. If I need the medicine, God will just have to take this one. A few days later, a dear friend put the entire co-pay in our bank account. All of it. If you know me, then you know I have problems with asking for anything, but with my friend, she did not ask if I needed or wanted help, she just did it. Forced me really. Hehe. The world is filled with Angels, and I've got quite a few with me. Every time I begin to get discouraged, something happens that lifts my spirits. I think that ever since that day, the way I am looking at my situation has started to change.
Lately it has been a little hard to stay positive. Everyone tells me just to remember that it is just the medicine that is making me sick, and trust me, I know this. Obviously I can handle physical pain, throwing up daily for years, being connected to tubes and bags, I can even keep up with a home (somewhat) during it all. But, everything I do is a push, and nothing in the world is slowing down just because I can't keep up. Most of my life has been sprinkled with pain and sickness, and in the end I always knew I was going to live a shorter life and most likely die a painful death in the hospital. Sometimes I would wonder how much suffering I was willing to go through just to maybe have a few healthy years before it ends like that anyway. My answer was always that I would go through whatever it took to survive.
When I went in for my clinic appointment on Friday, I was hoping for numbers to be off. Something that they could just regulate with a pill or something. Instead, my doctor recommended more rest, someone to help me with my errands, and to see a therapist (because I have been through a lot. seriously.) He also told me that if the side effects are getting too tough, we can stop. There is a possibility that if I complete just 3 months of the treatment, the Hepatitis C will not come back. There are also some new treatments that will be coming out within the next year or two that may not even have this many side effects, and with my numbers the way they are, I should have time. When he said it though, I nearly laughed. Why would I stop now that I am so close? After, I started thinking of all of these years I have wasted, just trying to survive for extra years that I am not guaranteed. What if I did stop this treatment at 3 months and the Hep C doesn't come back, or what if it does, and instead of filling my body with more drugs, more invasive procedures, more time in a hospital bed, I just live as happy and healthy I can, enjoying what I have already been given. Everything that I have gone through has changed and scarred everyone around me. And while I know what is in my heart, and the person I could be, no one else has been able to see that person for a long time. I have no guarantees, if I continue treatment, if I don't... and after 8 years of surviving, I am ready to put my health into Gods hands, and only worry about showing my son how to truly live with whatever situation you are given. My only fear is that he will see this as giving up. I'm not sure if anyone who hasn't been through a similar situation would see it as anything else. It's a big decision, and my next appointment isn't for a few weeks, so who knows how I'll feel by then. In the meantime my framily, just remember that I love you all, and even if I don't pick up the phone, I think about you often.

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***

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??? 

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?!? 

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.

Team Albertoni, 2014

We're starting early this year, so you can plan ahead and join us for the Donate Life Family Run/walk on Saturday, April 26th 2014.
You must know by now how important this event is for me and my family. Not only do we get to honor all donors and their families, but we also get to celebrate this gift that I was given, together, with those I love.
So please, come walk with us... And if you are one of the first two people to register, you will win two tickets to the Long Beach Laugh Factory. If you are not in Southern California, you can choose a Donate Life goodie bag instead, so come on! Do it now! Right HERE!

Hold yer horses

My doctor emailed me this morning. Unfortunately, they are no longer accepting new patients for the Arizona clinical trial. :( Some other interferon-free trials should be coming out soon, and he seems pretty confident that it will be out before I get too sick. At the end of his email, he told me not to let this preoccupy me. "To live life fully, until treatment is possible." But oh, I already had it all planned out in my head. I would have been done with treatment just before Christmas, and I was really going to celebrate the gift of being healthy. I was going to be like Oprah (with my baked goods.) "You get a box of cookies, you get a box of cookies, you get a box of cookies!" Cherry-nut cookies, pecan puffs, sugar cookies, fudge, barks, and breads... Oh ya, it was going to be awesome. It's still going to be awesome of course, but only a select few get my boxes of cookies. Hehe. I was imagining what it would be like to be 100% healthy. Being here to watch River graduate from high school... get married. Right after treatment, we were going to start the process of adopting a child (or two or three) again. I'd be able to work and help save for a house, or at least pay off all my medical bills. Yup, I had it all planned out, even though I said I wouldn't get my hopes up. I just feel like everything is in limbo right now. It could be worse though. So I'm going to try and put it out of my head, along with my "bridging" fibrosis. Enjoy life, instead of just waiting for treatment. It will happen when it is supposed to. I will not allow this stupid disease to have a place in my mind... And hopefully my body too, soon.

Treatment... Again

Friday's clinic appointment went pretty well. I left feeling much better than I did after my July appointment. Mostly because I had taken River with me to that one, but hearing that they wanted me to treat my Hepatitis C (again) sooner rather than later, was also quite nerve-wracking. After River asked my doctor what "rank" he was in the hospital, explained military ranks to him, and informed him of his rigorous exercise routine with his dads 4 pound weight and stress ball, my doctor was finally able to talk to me more about my April biopsy results. Bridging fibrosis is basically the last stage before cirrhosis, and it took my newest little liver less than 2 years to get to this point. Not good. "But we're not giving up yet!" He said. They have some new interferon-free clinical trials coming out, and they want to get me in on one. So much for being "warehoused" for a while. This is good though. If I can get rid of this freaking disease, I could easily have a few decades left with this little liver. I am trying not to think about the things that could go wrong. It didn't help that I didn't have any details, so my mind was free to think up all kinds of horrible side effects (like zombieism, and shady clinical trials) until yesterday. It was definitely better than I had thought. There will be no interferon injections with this trial. (Interferon is a form of chemo, and my last 3 attempts to treat had it. No fun.) This will be 3 pills, it is only 12 to 24 weeks, (instead of 12 months) and it is called... ABT-450/r/ABT-267, ABT-333, and Ribavirin. My first order of business when I enter the trial, will be to change the names. The side effects seem like the usual suspects. Nausea, vomiting, fatigue, and headaches. But (for the test subjects pre-transplant) the side effects were manageable. The most difficult part is going to be getting to my appointments (hopefully). They only have studies in certain states, and the closest one to me is in Phoenix, Arizona. They have one in Barcelona, Spain too, but supposedly they won't pay for me to get there either. Hehe. I couldn't find too much more information on-line, but I think I read that it had an over 90% success rate so far. I can't even imagine what it feels like to be completely healthy. Not that I've been letting my achy bones and tired body get in the way of anything.

This summer was a busy one (well, I'm probably the only one who thinks that in this home). We went the beach, Knotts Berry Farm, California Adventure, the California science center to see the endeavour; we saw fireworks, and celebrated birthdays with family and friends. I had my two liverversaries, our 11th wedding anniversary, and at the end of July, we went on our first annual camping trip with the Albertoni clan. I haven't had that much fun in a long time! I also did my first Donate Life assignment at the Liver Life Walk in July. It was awesome sharing my story with people who had no idea what "Donate life" even was. I have my eCampaign up (here), and today I went to the 2013 ambassadors conference. I am feeling inspired! It is amazing what my two donors have given to me. Even if I don't get decades left, I am so grateful for every extra day I have had with my family and friends!

I hope you are all having (or had) a great summer! River starts second grade on Monday. :-/

Happy liverversary, Nancy!

I still can't believe that someone could do something like this for me, but she did it! Three years ago today, Nancy was already in surgery, and I couldn't stop puking long enough for them to get an I.V. in me. I was so scared that they weren't going to be able to do it, and I kept pleading with my body, that if it would just cooperate for 2 minutes, it would be really happy in about 10 hours. The next thing I remember was the feeling of not being able to breathe. Luckily, I remembered this feeling from when River was born. (I did not handle it well that time) Before they could remove the tube from my throat, they had to make sure I could breathe on my own. Once that one came out, I was begging for the tube in my nose to come out too. By the next day, I wanted to get up and see Nancy. Even with all of the pain meds, antibiotics, and steroids, I felt AMAZING! Nancy, on the other hand was not feeling great. Not only was this her first surgery, but she went from having a perfect 100% functioning liver, to having only 46% total. It was very tough for her. While I was remembering where I had put things two months before, and recalled phone numbers without looking them up, Nancy couldn't even focus on a conversation if there was another noise in the room. She looked like I did, just days before, and I felt horrible about that. They said that it was normal, and she would be back to herself soon. She was, but I think it took close to a year to feel 100%. I was actually relieved when they said that I couldn't do another living donation, because I couldn't be the reason someone felt like that, again. She handled it like a champ though. She would come over to my room, and we would snack and talk, and usually ended up laughing so much that one of us (or both) would need to take a pain pill and rest. I don't think I can explain the connection I have with Nancy now, but I realized it pretty quickly that it was there.

Our first walk

A few days after our surgery, Nancy and I took our first walk down the hall together, but as I looked at her to my right, something felt off. For some reason, I had to switch sides. It wasn't until later that we found out that I had gotten the right lobe of her liver. And even though I needed another liver one year and six days later, Nancy will always be a part of me. I wouldn't be here without her.

Three of the most amazing people I know, right here! 

Depression and Hepatitis C

I have been trying to write this post for a long time, but certain recent events made me feel like I had to get it out now. Depression and anxiety are very common with Hepatitis C. Studies (like here and here) show up to 70% HCV patients experience some form of it. I was diagnosed with depression at the age of 14. Just 2 years after being diagnosed with Hepatitis C. It wasn't until years later that the two were linked. Even though it is a blood born virus, It has been proven that the brain is affected. My mind functions much slower than it used to, and the fact that I know this, makes it worse. Clearing the virus should bring back my time perception, short term memory, and confidence in holding a conversation, but will the depression lift with the fog? Or would I have been depressed even without this disease?

Like I said, I have suffered with depression most of my life, usually with a lot of ups and downs. There were times that I hated everything about myself, and resorted to anorexia and self mutilation. When I was 18, I did something that hurt everyone I love deeply. Jason and I had been dating for about 6 months, I had just graduated high school... everything was going pretty great, and I made up my mind that I was going to go out of this world before it got bad. I wasn't going to get sick one day, after I had a family, and have them suffer with me. I had heard stories of the way people died with this disease, and I wasn't going to go like that. I took a bottle of my anti-nausea pills, which happened to have Phenobarbital in them, and then called Jason to tell him that he was a great guy, and I loved him. He knew something was wrong, and I ended up telling him what I had done. He rushed over, I had to go downstairs and tell my mother what I had done, and then they both took me to the hospital. I was lucky that charcoal removed most of the pills without any damage, and I promised to never give up again. Jason made me a promise too. He promised to be there for me through anything. We've both kept our promises. I don't think the poor guy knew what he was getting himself into. After River was born, the constant feeling of hopelessness disappeared. I was lucky, because it could have gone another way. Not only had I lost my ability to have the big family that I wanted (I felt like a broken woman) I was in a coma for the first week of my only son's life, and in the hospital for most of his first month. I couldn't breastfeed, or even carry him without help. I needed my mom or Jason to help me do everything for months. It was tough, and very lonely - but not as hard on me mentally, as I thought. I do still suffer with depression from time to time, but not as often, and not as severe. I don't know if it was something scientific, like a chemical switch in my brain, or if just seeing my son's beautiful face for the first time gave me a purpose. But whatever it is, I am thankful, because I wouldn't wish depression on my worst enemy. It is a sickness, just like cancer. Only the sufferers don't usually get the support or help they need.

I don't think that people realize that until I am free of this disease, I feel like a ticking time bomb, and for good reason. Even though I can make it out and about in the world for a few hours at a time like a normal person, I am not better yet. I have gone through "end stage liver disease" two times, and I know that unless something takes me first, I will most likely go through it again, because my newest liver is only getting worse. It amazes me that people think I should be over this already, when I'm still dealing with it daily. But luckily I do have a great group who support me. Some people may not even know how much they have helped me at times. From flying a few hundred miles to visit me in the hospital, to bringing my guys meals when I couldn't do it myself. People that have sent a note out of the blue just to say hi, or that I had comforted them in some way, and those that always cheer me up with a joke. When the Affordable Health Care Act was passed, a friend from high school, that I hadn't spoken to in years (in person) sent me a message, saying she was so happy for me. Just amazing people. For every one who understands that I may not be the person I once was -- I will be better one day, and I'll remind you all why you stuck with me in the first place. I truly hold no hard feelings towards anyone else, I understand that everyone handles things differently, and some people can't handle it at all. That everyone has their own things going on, and I have been sick for way too long... but that is why I spend the time with the people I do when I feel good. One day I hope to not have to be so selfish with my time, but I'm not sure that I will ever forget that they were not here when I needed them most. I can't help but to feel a little like Will Smith sometimes...
"If you're absent during my struggle, don't expect to be present during my success."

*I have to add this little extra piece. When I say I hold no hard feelings, I mean it. Most likely if you are reading this post, you are not someone I feel hurt by. Hopefully, I have told you repeatedly how much you mean to me, and if I haven't, I am sorry. I will do better. I may not say it the right way every time, but I try my hardest to be honest, so that it can be fixed.

It's May

Wow, a few things have happened in the last few weeks. The Donate life walk was a success, if I do say so myself!

I also got my biopsy results back. They were not as good as I was hoping. My newest liver has advanced to bridging fibrosis. Unfortunately, if it keeps progressing at this rate, I may only have a few years left with my newest little liver, but again, only if it continues like this. When I went to USC to hand out information for donate life month, I met a 75 year old man with hepatitis C. He had his transplant 6 years ago, and has no fibrosis on his new liver. He said, "All you have to do is make it a few more years, and something will be out to help you." I sure hope he is right, because I am freakin' tired!  Which leads me to my next bit of news. I quit my job. Really, this time. It was only part-time, but it was becoming too much for me. And once I got my biopsy results back, I was really over it. I am praying that I didn't underestimate my monetary contribution to the home. :-/ I also hope I don't lose my mind from being home- Mentally, it gets to me, and I don't need anything else getting to me right now. Hehe. I think that the thought of getting sick again soon rather than later, has been on my mind more than usual. I'm not digging it.

So it was kind of amazing that my training day to become a Donate Life Ambassador came up when it did. They only have them a few times a year in each area, but if you have been affected by organ donation in any way, I recommend it. I met 3 mothers, who's sons had all died, but saved many lives. I also met a man who's wife died while waiting for a liver transplant. These ones were tough to hear. I met a few living kidney donors, and a bunch of us recipients. We went over the facts and myths of organ donation... So if you are someone having doubts about becoming a donor, come talk to me. Seriously. When they went over the percentage of people that die each year, and how many of those that actually became organ donors (less than 1%) it reminded me how blessed I am to have gotten that gift twice! It could have easily went another way. So, I'm going to try not to think about getting sick, and enjoy the good days. I haven't been feeling very well lately, but I think it is the medicine that I started taking for the RA. I have another appointment in a few weeks, and I might ask to see if there is any damage that has been done to my bones. If there isn't any, then maybe we can just monitor it. We'll see.
If you'd like more information on being an Ambassador for Donate Life (depending on your area) click here.

Birthday celebrations and doctor appointments.

It has been another busy April so far. I am still working... And pretty tired because of it, so I was relieved when River said he wanted to go to Legoland, instead of having a party for his 7th birthday. Thanks to his Ahma, Papa, and some very dear friends of mine, we were able to make a week out of it. The Saturday before his birthday, he went to Knotts Berry Farm with his Grandparents and Cousin. Then on Tuesday, my sister and I took River to Disneyland and his first Cars Land experience. Saturday we managed to drag Dad to Legoland (and I think he liked it.) Sunday, we had a family dinner at River's favorite resturaunt, and Monday I took pizza and cupcakes to his class. Originally I thought I was getting off easy, but now that I'm looking at it... Hehehe.
There are still a few more birthdays to celebrate this month, I am gong to USC to answer questions (or something) at a booth they are doing for donate life month on the 25th. We have the annual walk coming up on the 27th, which I can't wait for, but I also have biopsy scheduled for the 29th (blah). The next day, Jason and I have our first (of 6) three hour class to become certified foster parents. Exciting stuff, and even though I am trying not to get my hopes up, I can't help but to wonder what our little boy is doing out there... If he is ok. Hold on little buddy, we're coming! Nope, not getting my hopes up at all. I know that some people might think that we shouldn't be thinking about adopting with my health, and I hear you, but we have discussed it, and we feel we can do it.
Speaking of my health. I have a new medicine to take twice a day. It is called Sulfasalazine, and is suppose to help with the Rheumatoid Arthritis, but be gentle enough on my liver and kidneys to handle. It can take a few months to kick in, but I'm really hoping it gives me some relief. Hopefully I will be able to take it without any side effects. I've been cutting my lidoderm patches into strips and putting them on my "forefeet". That has been pretty amazing, but I can't be putting patches everywhere.
I'm not complaining though, things are pretty good. I finally got rid of my crappy general doctor, and am back on my regular anti-depressants... So my mood should be starting to stabilize any flipping day now. :) The newest liver is holding in there, we're working on the RA, and if we can get it under control, it might even help lessen my fatigue. That would be nice.
Happy spring my loved ones!

That time again!!

Hey guys! It's that time again, the 11th (and our 4th) annual Donate life run/walk! Our team name this year is.... Three Livers and a Lady. :) in honor of all my livers. This is such a special event for me  and my family, to show how grateful we are for this extra time I was given. So many people don't make it.

There are 18 men, women, and children that die every day, waiting for a life saving transplant. Yet most people know so little about organ donation and how they could help. This event raises funds and hope for so many of us. Please help by donating a few dollars, or if you can, by joining us on April 27th at Cal State Fullerton. 

Please visit my Personal Fundraising Page for more information. 
Thanks guys!! And remember, Live Life, then Give Life! 

RA... Squared.

I finally had to address my arthritis with my doctor. It was a while ago that my USC doctors asked if wanted to see a specialist, but like I keep saying, I just needed a break from all of the medical stuff... Besides, I figured it was just a little arthritis.
Today I got the call (from a very nonchalant receptionist) that my Rheumatoid factor came back positive. She then gave me the number to a specialist and pretty much hung up... So I guess I will have to wait and ask this guy any questions I have, which is probably better anyway. I did do a little online research, of course. I was not aware that it is an autoimmune disease, similar to lupus. Hepatitis C seems to be a trigger for it, however, some HCV patients have a positive Rheumatoid factor, but do not have RA... I am hoping that I will fall into that category, but I do seem to have a textbook case. The RA symptoms that I have are:

• Numbness and tingling in hands
• Pain in forefoot
• Pairs of achy joints... Excruciatingly achy.
• Morning stiffness (all day)
• Swelling/hot/fluid around ankles and knees
• Nodule on my wrist
• Fatigue... That could just be from everything
• Positive Rheumatoid Factor

No fun guys, and it happened so suddenly! No matter what it is though, I am confident that we can do something about it. It will definitely push  me into a stricter diet. I will be saying goodbye to my favorites, like cheese... And bacon. Yes. Bacon. I'm not saying I won't fall off the wagon from time to time, but I will try my best. I am sure that if it alleviates the pain, it will be easier to stick with it. I also signed up for a yoga class. I'm not so sure I will be able to stick with that one at all, but we'll see. I am still trying to "train" for the 5K at the end of April, but I read that I will have to focus more on core strength and stretching with any kind of arthritis, so I'm a little worried that I won't be ready in time...   

Onto another subject, I did get put back on my prozac. I am having too hard of a time without it, especially since I am so achy right now, but if my LFTs go back up, I may have to find another option. I had really thought my depression was gone, but apparently my medicine was just working well. 

I always tell myself that it could be worse, and I know it can, but this is getting a little ridiculous. Just kidding, see, I'm still making the most of life on most days...

We went to Joshua tree earlier this month. I did not know how beautiful the desert is. We stayed in a cute cabin, went hiking every day, roasted marshmallows, and stargazed from the jacuzzi at night. River became very comfortable with heights, and was climbing every rock by our last day. I, on the other hand, have a new found fear of heights. It was a great trip, and needed.
After that trip, I came home and put my notice in at my job. I feel so guilty, but it is getting harder and harder for me to keep up. All I want to do is sleep when I get home, and that is not how I want to live. It is too much, at least for now, especially if I need to take care of this RA, too.
Here is a little information on Rheumatoid Arthritis... I love pinterest. You can find all important information you need in a cute little infograghic. 

Click here for more information

A little late, but good news.

Well! Just a little update. I had my clinic appointment the week before last, and got better results than I thought. My labs were actually a little better than they were 3 months ago! I was shocked, and so happy.
We are not sure why, but I have made a few changes over the last 2 months that may have something to do with. First, I was weened off of my Wellbutrin. This is proving to be difficult for me. I have been on one form or another since I was 14, but I have heard that it raises your liver counts, so I felt I had to try. I have also started juicing again. Hehe. Well, more like, smoothie-ing, and I love it. I also have cut out most processed foods (I can't give up some things completely) and I have really noticed a difference... My insides just feel cleaner.
I feel bad for taking a break on my health (not a break like most people would have, I still took my pills and protected my new liver, and I didn't really eat unhealthy) I could have been doing more, but I am focused now. Part of me was waiting for me to feel 100% better, and the other part was just waiting for me to get sick again. It is a feeling I have to learn to fight better, and it has gotten a little rougher without my happy pills. My doctor did say, that this is it. My body has reached it's peak. It is healed physically, so this is what I'm stuck with. Hehe, it's not that bad, now I just need to do the rest.
My stomach issues have not gotten better, but they haven't gotten much worse either. I do have to be careful, because I will throw up again in the mornings when it is at its weakest, but my food is still digesting, so I will just be content with that. Speaking of digestion, I found out that the pain I get (along with the embarrassing vacuum sound) where my G-tube was, will not be going away. I won't go into details as to what happens to your insides after a long term feeding tube is removed, but apparently, it is normal.
I think that is it... I am going to go for a run.. Mostly jog... Ok, walk, but I'm building up to a run for this...
Donate Life Run
It's that time again! Saturday, April 27th, is the Donate life run/walk. I'm going to try and do the 5K this year, but we'll see if my arthritic body can take it. Either way, I hope to see some of you there... Running or walking!

Happy New Year

Happy, happy new year everyone! I am sorry for such a long hiatus. I think I needed a break from everything medical. Honestly, I even stopped tracking my labs and daily weight/temp/BP routine. I know, I know... But during these last few months, we have had some fun times! I have really been able to fully enjoy being with my family without being sick, and that is all I asked for.

River is doing great in school, and is a purple belt in karate now. Jason is working steady, and so am I... Well, I'm trying. About two months ago, I started getting sick again. I kept telling myself that it was just a bug, but it has continued to get worse. I don't think I am doing very well. My appetite is starting to go, I am nauseous, and have been swelling a lot. I hate to have to write that... I haven't even really told anyone in my family yet, but they know now I guess, well a few of them. Hehehe. I have an appointment with my doctors next week, but I am worried that my numbers have just raised to where the symptoms are back, and there isn't anything that can be done about that. Hopefully I'm just overanalyzing it. I do that sometimes. :) I'll just wait and see what they say.

Time is ticking though, either way, so I need to get on the ball with things. I need to spread awareness on organ donation (I might need another one) and liver disease. I need to keep learning healthier eating and living habits for my family. For Gods sake, I need to get organized, but most importantly is lots of quality family time. Not that I'm making any New Years resolutions, or anything.

I hope you all had a wonderful holiday season. I am so happy to be able to see so many of my friends and family be especially blessed with love or new life this year. I must admit though, the TWO new lives I am most excited about, aren't scheduled to be here until late May ❤ I know that some of you haven't had the best year, and a few have earned their wings, but hang in there guys, we can do it, after all, it's a whole new year!

New beginnings

Hey guys! I hope everyone had a great summer. It was definitely one of my best summers in a long time. Amusement parks, county fairs, beach, BBQ's, a trip up North for our 10 year wedding anniversary, my one and two year liverversaries, and all while feeling good!

A few weeks ago I went to visit a very good friend of mine at my old job, and took some cupcakes to everyone. They must have really liked my cupcakes because they offed me a part-time job doing data entry 20 hours a week. I also get to take off the days River has off of school. You can't beat that.
Hopefully I will be able to keep up. I did originally quit this company due to stress, but that was because my doctor said that it was stress that was making me so sick, come to find out it was actually decompensated cirrhosis. So I figured I'd give it another try, I start on Tuesday, however my first email to welcome me was a short "work starts at 8:00 not 8:08." LOVE IT! So we will see. Hehehe.

River also started first grade last week, he was not enthusiastic about it, but I think he is glad he is back... Kind of. I was excited to do all of the back to school stuff this year. I even made pancakes in alphabet shapes for his first day. (yes, I know I'm cheesy) I also got a little emotional when I dropped him off. He did good, of course.

Health wise, I can't complain. I had a biopsy a few weeks ago, which was more painful then usual, but the results were much better then I expected! There is still inflammation and fibrosis, but still no cirrhosis. I think my last liver had developed cirrhosis a few months after transplant. (Sorry Nancy!) So this one is hanging in there. I am still a little frustrated with the arthritis and how tired I am, but that was another reason I took the job... I don't think I NEED to take as many naps as I take, so I might as well jump in head first and see. Hehehe.

Somewhat related, since my health is pretty freaking good right now, I don't know if I should continue with my blog... Not that I keep up with it now, but still. I just need a break from hospitals and sickness for a while. I do want to get an organization together, which is another reason I feel like I need to get my butt back out there and make some money. I do love to share my story (obviously), so hopefully one day I can do something in the medical field to help my fellow sickies... One day... That's a nice thought. :)