Team Larry - Last Day to Register On-Line

Hey guys! I am so excited about the walk this Saturday, I even delayed putting my feeding tube in just to make sure I wouldn't miss it. hehee. It is the least I can do for the miracle that Nancy gave to me. Plus it is a fun and up-lifting day. I don't know anyone who would not become an organ donor after attending this walk. Anywho, here is a bit of information you might need if you are attending.

First, we will meet near the table where the shirts are handed out at @ 8:00. (If anyone will be late, it will probably be me - but don't forget mornings are hard for me :( I'm usually sick, but I will try my darndest) I want to head over to the picture area to get a team photo sometime after that, so try to make it!!

Also, today, Wednesday, April 27th is the last day to register on-line for Team Larry, but don't worry, you can still register at the walk (you just have to get there a lil early -- 7:00am)  
Register here today >>> http://donatelifeoc.org/register.html


Frequently Asked Questions

Q:  Are strollers, wheelchairs, bikes and rollerblades allowed?
A:  Yes.

Q:  Can I run with a running stroller?
A:  Yes

Q:  Can we bring our dog?
A:  The campus’ answer is no, but if you bring a dog, we will not make the dog leave ☺

Q:  Where do I check-in if I’ve already registered?
A:  Go to the Pre-Registration area and pick up your bib and wristband (for food).  If your team has 25+ members or if your team is a Hospital Team, proceed to the Team Villages where you’ll find your team tables and team signs. (Team Larry didn't make 25 members this year :( )

Q:  What happens if someone wants to join my team but they haven’t registered?
A:  They can come to the Walk Up Registration line beginning at 7a.m.  They will receive a general Run/Walk t-shirt.

Q:  What do I do with fundraising money I have collected?
A:  Thank you for fundraising!  You can bring your fundraising money to registration and turn it in there.  Any fundraising prizes you’ve earned will be sent to you in the mail.

Q:  To whom do I have my sponsors make checks payable?
A:  Donate Life Run/Walk

Q:  Can I make my own team banner and sign?
A:  Yes!  Have fun!  They just may end up in a photo on the website or our brochure.

Q:  Will there be food?
A:  In the morning, the Vons Breakfast Court will serve fruit and granola bars.  Starting at 10:30am, the Placentia Rotary Lunch Court will serve hot dogs, salad and chips at no charge to registered participants with a wristband.   In addition, there will be a few booths where food items can be purchased.  If you have any dietary restrictions, you may wish to consider bringing your own food. 

Q:  If I am walking, do I have to do the 1K?
A:  Everyone can choose whether they’d like to walk, run, roll, or skip the 1K or the 5K.

Thank you for your participation and support of the Donate Life Run/Walk!  We look forwarding to seeing you and your team on April 30th! 

Tests, tests, and tummy aches

 Hey guys, it's a shocker but I'm in the hospital again... hopefully I'll be out in a day or two. I was admitted on Monday at my normal clinic. My doctor didn't like the fact that I puke (almost daily now - again) I also have a bili-drain that drains waaaaaaaaaay to much other stuff besides my bile (like all my nutrients) and my all night randevu's with the toilet. She said there is no way I am getting nearly enough nutrients... well duhhhh (I said in my head) I've only been mentioning this for months now - but not with enough confidence to be really listened to I guess. Anyways, they did an endoscopy for that and took a few biopsies of some of the swollen red parts of my intestine. They also found a lot of fluid still in my stomach, which should not have been there anymore since I hadn't put anything in my mouth since the day before. This is called Gastroparesis and hopefully they have a pill that will work to fix it it along with some diet changes (again). Basically, your stomach contracts to push all your foods and liquids to its next stop, but mine is not doing that, so everything is staying stagnant in my stomach, which is why I can throw  up food that I ate days before. They suctioned everything out of my stomach and I did not throw up the rest of Tuesday or Wednesday, though I am starting to feel a lil heavy again.
As I mentioned before, they also found that the veins in my esophagus and small intestine are swollen, which confirms that portal hypertension has began. As for the biopsy, I'll keep you posted on the results, I am sure it is just one more swollen area due to my liver.

The other reason I am here at USC is to finish up all the testing for my second transplant. So far so good, I even got told I have a beautiful heart. awe... I know, I said. hehehee. I think that I have completed them all this week... Since my organs aren't as mature as a lot of the other people getting transplants I do get to skip a lot of the evaluation tests... like the colonoscopy and mammogram. Of course if you are going in for a transplant evaluation test, it also helps if you still have the organ they are testing. (that was an awkward one) tehehee.
There isn't much more they can do for me, so they might as well send me home... otherwise there is going to be an easter egg hunt on 6 south at USC. :)

Liver Transplant.... Take 2

Today is the day that the USC surgeons are placing my name on the UNOS list for a second liver transplant. (I'm sorry Nancy (and Sally)... It's not you, it's me... really!) My MELD score is 17, which is actually 2 points higher then when I was transplanted in July. It is somewhat confusing to explain the reason why the second transplant is needed. I am not rejecting my new liver (otherwise an increase of anti-rejection meds would usually solve the problem) Nor is my new liver cirrhotic already (though there is some fibrosis) They have just exhausted all possibilities and my lab results are still climbing. We were hoping that this bili-drain would solve the problem but it has been a few months now and many of my numbers are still about 5x higher then their normal ranges. The good news though is that my numbers were about 10x higher then normal before the tube was placed, so it was part of the problem... and thank the Lord that dropping my bilirubin by half was enough to stop the constant itching!! (Remember that!?!) Those months were torturrrrrrrrrrrrre. But it's not enough, and now Sally is not functioning right, and is already causing daily tummy aches, tiredness, and nutrient absorption problems. (oh my!)
Ok, so back to the bag (my bili-drain) It was supposed to stay in for 6 months. If it was successful in fixing the stricture after the 6 months, they were going to remove it and that would have been that. If the stricture was still there, they were going to perform surgery to remove that part of the bile duct so that I wouldn't need this tube and bag permanently. But the surgery is pretty dangerous, and since I am going to get another transplant (which would fix the problem too) docs said they will not do the surgery... So this bag is probably going to be with me a while longer (wah waah)
As for the transplant... It sucks, but I am far from the first person to need a second transplant. It is nice to finally have a plan though! Something to look forward to. (Not the surgery -- the results of the surgery, GOOD HEALTH!) There is a light at the end of the tunnel (ummm... again, really this time though -hopefully) tehehee. just kidding. I know I sound like I am just ecstatic about this, I'm not. I feel horrible that I have to get rid of this wonderful liver that Nancy gave me. I hate all the tubes in me after surgery (I know that shouldn't be such a big deal, but it is), and once in a while I get a flickering horrible thought of... what if this one doesn't work either? BUT! Then I pick up my bootstraps and remember to have faith. Sally might not have been meant to be my permanent liver, but is giving me time to get the one that will give me a full, long, life. :)
Since it is going to be a deceased donor this time (most likely) I don't know when it will be. USC is transplanting my blood type at about a MELD score of 30... That means I am going to get pretty sick first, but I have no idea how long that will take either. It has taken me 8 months to get to a 17, so if it continues at this rate, it will take about another 8 months at the earliest before I am at the top of the list. It is going to be tough, but it is doable. There is always the option of duel listing in another state. Some are transplanting under 20. It's a thought.
All I can really say right now is ...Dude!

Updates!!

Hey friends! We got home from Vegas this last weekend. It was nice and (believe it or not) very relaxing. We also went and saw the Beatles Love show at the Mirage. It was AWESOME! I napped between things, but not as much as I thought I would, and I did not use a wheel chair one time (although at times I probably should have... ouch) We did a lot of walking, Jason even did a little shopping with me. Very nice.
Since I had my labs done the day we left for Vegas, I figured I would be getting a call the next day, and since I didn't, I figured there was nothing to big going on... No news is good news (usually, if you have good docs. hehe) And I was right. I was low on my magnesium, again, but it could wait until we got back she said... Just have some fun!! ..Ok, will do! So Monday, Jason and I drove to USC for my clinic appt. and infusion. And now for some good news! My liver function tests had come down some since I was discharged from the hospital. (This is good, but only if it continues to trend down - If so, it may keep my name off the transplant waiting list for a few more months... or heck, if it keeps going down, I may not need another for years!) But that is jumping the gun a little. --Bigtime.
My numbers do tend to jump around a lot, which drives my poor mom crazy, and is why I don't always post when my numbers are really jumpin'. They redid labs on Monday and the numbers did not go up or down really from last Wednesdays tests. So that's not bad (it ain't really good per say) but it's not bad. It just means more time in limbo.

Now! On to more important news.

April is a BIG month for me. Not only are half of my family's birthdays this month, but Rivers 5th birthday is April 14th. It is so hard to imagine that this little angel is going to be 5 and starting Kindergarten. I want to have a party for him, we haven't really had one since his 1st birthday. I told my docs that my "mini" surgery will have to be done the week before (to have my drain replaced again) and they said ok, so I should be out of the hospital for sure this year. That's big!

Then on April 30th is my big walk for Donate Life... and I haven't even started to prepare... I need to know who is walking so I can see if we can have a bigger team and get more goodies. This is so important to me. I just hope I have the energy to recruit and get the word out. Let me know if you will be in Fullerton the weekend of April 30th. It is a heart-warming event. Live Life then Give Life people. That is what it is all about. I want to form a team again so let me know what you think. Get some more info here: http://www.donatelifeoc.org/buildateam.html