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. :)

Sunny Days

Hello :) It has been a busy month for us so far. River had his promotion to yellow belt in Karate, and Tuesday he graduates from kindergarten. Where has the time gone? Jason has been working some long hours, and weekends too :( but at least he is working. He wasn't for a while, and we are still trying to catch up with the bills... My little trip to Oregon kind of contributed to that pile up too, but man was it needed! I was quite proud of myself for taking a flight to visit my Aunt and cousin in Portland.
Not only was it my first trip by myself post transplants... But it was my first trip by myself ever. It was a special trip for so many reasons, and so much fun!

I had my clinic appointment last week. I was so nervous about this one because my LFT's had doubled the week before in labs, but thank God by Friday, they had gone back down. Doctor D. said we won't "chase" the numbers, but instead just be glad that they are back down for now. He wants to do another biopsy since the numbers still aren't great, but we are going to wait until the end of summer... Sounds good to me. Everything else is looking pretty good. They gave me tramadol for my arthritis, but I haven't filled it yet. I have low expectations for it, I laugh in tramadols face. But, maybe it's good for arthritis. Another thing that was brought up by my docs was the possible PTSD. It's not that I don't believe that I could have it, I see some of the signs, but this is different. I still worry about my health so much because I'm not better. They don't even know what went wrong with my last transplant, so how can we stop it from happening again? Even most of my fellow transplant buddies can't relate because they pretty much are better now. I'm just a time bomb. I think that is why it is so hard for me to make commitments still, and even harder to go out and form new (or fix strained) friendships. It was so emotional to slowly lose most of my friends and family because of my illness. I understand though. I'm sure some people saw me as flaky or unsociable, but if they really got the chance to know me, I could be fun, I think... Cheesy maybe, loyal at least. But why go out there now and start trying when I have no idea when I'm going to get sick again? Ok, so that may be the PTSD. But it's not like I got mugged and now won't go out of the house because I might get mugged again someday. Most people go their whole life without being mugged. This is like I got mugged, the guy lives in my building and is sending me threatening letters saying he is going to do it again. That is a rational worry right? Either way, it is not something that is constantly in my head, and it is not holding me back, that is for sure.

River and I have been getting an early start on summer. We kicked it off with a visit to the happiest place on earth. We also went to Rivers first school carnival, the farmers market, and played frisbee at the park. Words can't express how grateful I am for the gifts I've been given. A year ago today I was in the hospital on a feeding tube, had two bile bags, a MELD score as high as 27, and aaaaalllll the symptoms that go along with that. That was some storm, but now I'm just going to enjoy one heck of a beautiful rainbow!

Another April.

Wow! Another April in the books, and with very few medical distractions! River turned 6 on the 14th, and since this year I felt the best I have since he was born, I decided to throw him a Super Mario party. Big success from the homemade mushroom and mustache pops to the pin the mustache on Mario game... It was so much fun, River liked it too. Hehehe. Then we had Jason's and my moms birthdays... Much more low key. I did have a little medical issue, well still have, but doing much better. My potassium was pretty high, which can cause some deadly effects, but it is on its way down now. I had to take some poopy medicine (pun intended) and by the following week, the feeling came back to my fingers and the dizziness and heart beat got much better. Potassium is some serious stuff. I have had to call the ambulance a few times before transplant because it was to low. Paramedics had to carry me out and everything. But anyway, most importantly, the doctor said my kidneys are fine and we will just watch my levels closely for now. Not bad! The Arthritis is a pain in the butt, especially in my legs,oh and especially when I try to sleep. I have been exercising, but a few hours later it feels the same again. It sucks, but it is manageable, for now. The brain fog on the other hand is very frustratingly returning. Little things mostly like forgetting common words again and starting things like laundry and then forgetting to go back to it. It is pretty mild still, but I can feel it. But enough about that, there isn't much I can do about it. It is just the nature of the disease. On to something that we can change...

We attended the Donate Life walk again this year, and it was as amazing as always, but GROWING! There were over 11,000 people this year, and the message is being spread. I want to thank Sylvia, Felicia, louis, Austin, Joe, Rhonda, Rylee, Miguel, my Mom, Dad, and husband for being there with me. Everyone knows how much it means to me, but they took the time to actually be there and support the cause. Such a magical day! But to top it off, Facebook came out with an app to become and share your organ donor status, and it has already increased registered donors by over 800% in one day. Pretty soon we will be looking at people funny if they say they aren't donors yet! (well, I already do, because really, come on, you can't take 'em with you) Share your health! Hehehe.

Organ Donation awareness month 2012

Whoo hooo! It is Organ Donation awareness month! I'm sure that I don't need to go over all of the facts vs myths with you, right? You know that there are over 107,000 people waiting, that 18 die waiting every day, that you are never to old or to sick to be an organ donor, and you also know that no one is going to purposely kill you to harvest your organs... At least not here in America. It is how it should be here, a gift. You also know that you only have a few more weeks to register for the Donate life walk here in Fullerton? But if you can't come you can still support me by donating a buck or two to the cause!
 http://www.donatelifeoc.org/donate.html
Spread the word! Live Life then Give Life.

The curse of the Albertoni vacation....

Whaaaa'??? Three posts in one month, crazy. Anyways, I actually wrote that last post earlier in the month, so i got some rest in between, hehe, but these last few days I haven't been feeling as good. :( What worries me is that I have noticed a pattern over the years, and it all started right before a trip we took to Vegas over 10 years ago... (fade to black) teehee. Two weeks before our trip I got sick, went into the doctor and found out I had a rupturing appendix. I had to have emergency surgery... But that didn't stop me from going to Vegas and dancing on the bar of the Coyote Ugly, oh no... We had reservations already, after all. Since then my mom has joked many times that I always have some medical emergency or find out bad news and then go away on vacation (leaving the rest of the family traumatized in my wake) I think she thinks I do it on purpose, but actually the plans are always already made... I think God just knows that I need time to get away before I process the information. Even on this most recent trip to Big Bear, I had a clinic appointment the morning we left... So again, I'm on the phone telling my mom that there is fibrosis throughout my new liver on my way out of town. So now you can understand my worry when I start to feel sick this week and I am going on a trip next week... And I have bloodwork to be done this week. Dun dun duuuun. (River says that whenever I tell him anything he doesn't want to hear, so if I tell him he has to go to bed, he goes "dun dun duuuun"... Such drama in this house) but I digress. Well, on the bright side, at least I am still able to go on my vacations most of the time... I may have to bring along a wheelchair, or feeding tubes, or bile bags, and always lots of medicine... But I go! Hopefully those days are over though, the curse is broken, and I just have a little stomach bug this time. Especially since we are planning to go to Hawaii for our 10 year wedding anniversary (and my 2 liver-versaries) in July. Yikes. Dun dun duuuun. :)

Still swimming...

Why hello again! Sorry it has been a while, but not much has really been going on... Well ok, there is always a little something going on, but I haven't been in the hospital or anything. I did have a biopsy last month because my liver counts were still on the rise. There was no rejection or cirrhosis, but my liver was inflamed and there is fibrosis throughout. This hurts. I also found out that the achyness that I have been feeling is probably arthritis. Waaah... Did I mention that I also turned 31 last month (I don't think that my body got the message... 31 not 81) Man, I feel old! I've been trying to exercise more, we even went on a bike ride the other day, but when I got off I had to peel my fingers from the handlebars. Any ideas on how to get relief on this would be much appreciated. On to better news, I have met (and now surpassed) my minimum weight goal... Could actually stand to lose a few pounds now. Tehehehe. I'm not complaining! I am enjoying my appetite for as long as I have it. That's my excuse and I'm sticking to it! So medically physically I am doing ok. I am eating good, not sick, regaining energy, and steering clear of the hospital! The only thing is that we have no idea how long that will last... Months, years? I know that no one ever knows, but still. I kind of know, unless something else takes me first, but most likely I will one day get a stomach ache that will not go away, I will start to get tired, throwing up, and then comes the ascites, HE, and jaundice... Oh my! ...Just keep swimming! (I think I watch to many kid movies.)

Anyway, that is what I am trying to do... Keep moving forward, and enjoy every second we can. For my birthday last month we took a trip up to Big Bear and rented a cabin for the weekend. So fun! This month we are going up north to celebrate some family birthdays. Next month is a big birthday month in our house, and we have our annual Donate Life walk to top it off! Yup, we are still rolling right along. :)

P.S. I finally finished my letter to my Donor family. It was the hardest thing I have ever written, I just hope that somehow it gives them comfort, and that my stupid body doesn't destroy their precious gift.

Donate Life Walk

Whoo hoo!! It is that time of year again. The Donate Life walk is coming up Saturday, April 28th, and just like the last two years we will be there to honor all of the heroes who have given the gift of life, including my two heroes!! Please register bebefore April 13th. I promise you will enjoy yourself and be raising funds and awareness for a great cause that has saved my life... twice!

What:
A non-competitive 5K/1K Run/Walk to educate and inspire the community about organ and tissue donation while benefiting Donate Life California Organ and Tissue Donor Registry.
Who:
All runners and walkers, dialysis patients, transplant recipients, organ donors, donors families, allied health professionals and students are invited to come out and participate! Donor families are invited to make their own patch for the OneLegacy Bridging Lives Quilt
When:
Saturday April 28, 2012. The race celebrates the last days of National Donate Life Month.
7:00 a.m. - Registration
8:15 a.m. - Donor Ceremony
9:00 a.m - Run/Walk
10:00 a.m. - Family Health Festival
Where:
California State University, Fullerton campus, around Intramural Field.
800 State College Boulevard
Fullerton, CA.

MAP AND DIRECTIONS HERE

Registration fees:
$25 per person Team Registration (10 or more Team Members required)
All REGISTERED participants receive a FREE T-Shirt!
 

**Sign up here to join team Albertoni**

Rolling right along

Hello, Hello!! I hope this new year is treating you well so far. Besides a case of strep throat that lingered in our house (River's first time on antibiotics) there have been no health issues at all! Amazing! Today is actually my 6 month, 2nd liver-versary. Whoo hoo! I can  now officially garden again (with gloves and a face mask... but still) Rejection episodes usually drop after 6 months too. Looking good!! This is also the longest I have been out of the hospital in many years, it's been almost 3 months... and the longest that I have gone without some sort of surgery or invasive procedure in over 2 years. Happy body! Since I have been feeling better, I am trying to stick to my new years resolutions. I have started organizing... very slowly. --Sometimes I have to remind myself that it has only been 3 months since my last surgery because I am a little hard on myself. Things take me a lot longer to accomplish then they did years ago (But at least I can do it again, so quit complaining Ricki) Rivers room is about 1/2 done, a lot of my medical papers have been sorted, and my crafts are now organized. While cleaning out one of my old craft boxes I found a letter that I had written to my sister a few years ago when I first started getting real sick. I had put it in there because I figured if I died, she would get my box of crafts that she coveted so as a child. It was kind of sad to read, but it got me thinking about how far I have come! Of course that got me sidetracked, (I don't think I really like cleaning that much) and I hopped on the computer to look back at some of my first posts. First off, this has got to be the longest I have ever stuck with something... I don't think I have to worry about the resolution to write more (except actual letters to people, that I need to do.)  And second, it really has been a long journey! I'm tired! But not to tired to not cook, which is something that I have been sticking to... I don't know how well my resolution is actually going though because River is NOT loving the food. He was under 3 when I stopped really cooking, so I know it will take some getting used to, but this kid has really started to chip away at my self confidence (except for my baked goods... he is  a big fan of those) But I know I cook better then those damn Kid Cuisines, I know it!

I have also started to venture out more. Sometimes I still have to force myself to go because I get a lot of anxiety about getting sick or tired once I'm out, but I haven't yet. I also feel a little socially awkward, I'd say fish out of water but that would imply that I was at one point graceful or cool, and I'm not sure about that.... I have to stop with the fish metaphors anyway, I told my nurse that my stomach looks like I have been attacked by a shark, and she burst into laughter and then quickly apologized but agreed that it indeed does look like that (no offense to anyone who has a shark scar, I don't think you would be disappointed with mine though) Anyways, that was really off topic. I am venturing out more, and am even going to Rivers school on Tuesday to help out in his class. It worries me to make plans like that, but I really do need to start having more confidence in my health. I'll be ok on Tuesday!

Other then that, everything is just nice and calm. We are settling into a routine, I wish Jason was home a little more during the week to be part of the routine, but at least he has a stable job right now. I think we are going to take a little trip up North in March to visit the families so that will give us some good family time, and in July the in-laws offered to take River while we go away for our 10 year wedding anniversary Ohh la la! It's shaping up to be a good year for the Albertoni's!