Thursday, October 10, 2013

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!

Monday, August 26, 2013

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.

Saturday, August 10, 2013

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. :-/

Saturday, July 13, 2013

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! 

Thursday, June 13, 2013

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.

Monday, May 20, 2013

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.

Saturday, April 20, 2013

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!

Sunday, March 10, 2013

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! 

Thursday, February 28, 2013

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. 

Saturday, February 2, 2013

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!

Thursday, January 3, 2013

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!