Saturday, May 15, 2010

A new (and improved) Liver shall Reign

My Hero, Nancy
Originally uploaded by Rickisjourney
Words cannot describe my happiness right now for the journey that this woman right here is allowing me to continue upon! Without this transplant, I would continue experiencing symptoms of my Larry failing on me until one day (within the next 2-5 years) it would take my life... River's moms life.
BUT today I received the call from USC... my transplant WILL be taking place July 15, 2010. (WOW)
One of my many coordinators (my favorite - from St Jude) Teresa said today that in the last 14 years their office has only seen 2 live donor liver transplants. Either the patient has no living donor or they are to sick to receive a partial liver. They need the whole liver, which means they have to wait their turn... and with the shortage, sadly, many do not make it long enough due to complications of the disease.
Because of my MELD score and my HEROES, Nancy and her family... I am one of the truly lucky ones! I will be better soon! Like.... a couple of months, soon... whoo hoo.
So for the next 2 months, I just need to stay focused... stay as healthy and as stress free (as possible) and I will be good to go! This could not have come at a better time, seriously - I was becoming slightly discouraged; frustrated at my declining health (no matter how hard I try) but at the same time worried about the surgery..."is this the right decision.... the right time?" But prayer and a little time laid my path out for me (with flashing lights and the flaggers that wave you in, pretty much) hehehe Thank you Nancy, from my family to yours.. Words will never be able to express it. ... just wow!
Move over Larry.... Sally is taking over come July!

Wednesday, May 12, 2010

May USC Clinic

Whoa nelly it was a long day yesterday. Gone by 7:00am, with my 24 hour sample of urine in my oversized jug (just another fun test they make you do, incase you had any dignity left) for the lil trip up to USC. The first person to come in and visit me was Janelle (who I would not even know existed if I didn't have a living donor) She introduced herself to me and gave me a very quick rundown of what will happen starting in June for a July surgery, if all comes back good with these blood tests. I'll be meeting with the surgeons, (I am going to hint around to a tummy tuck while they are in there. hehehe) the anesthesiologist, and we shall be viewing our lovely accommodations.
I then met with my doc, who was impressed with the way I looked (not in that way... he is looking at color, eyes, and fluid retention. I do have a slight ascites build-up right now (hence the weight jump from 108 to now 117), and of course they assumed that I was going heavy on the salt... If they only knew. (lately 2000mg of sodium has been real easy to keep under, we pretty much stick to the 4 corners of the supermarket... the fresh foods. All the processed, boxed, and canned foods are down the middle) but I mentioned that the only canned food I eat, is the green beans and that set up a flag, so they sent the nutritionist in. Of course when I described my diet and the fact that I get the "no salt" not the "less" salt green beans, that consultation was over fast. hehe. I was amazed to hear that people in need of liver transplants will still eat fried, greasy, salty, or fatty foods. Anywho, since I am beginning to have more ascites flare ups (completely unrelated to anything I do or eat) I have a new med to add to the growing list of daily pills. This one is a mild antibiotic, just to reduce the fluid in my belly from becoming infected... That, he said, is a very bad prognosis.
So all in all, it was a good clinic. I will find out my blood results by the end of the week, to see my new MELD score. If it has stayed the same or gone up a point or two, then the surgery will be ago for July... If it has gone up significantly, then a partial donor will be off the table (as I will need a full sized deceased liver) and if it has gone down significantly, then they would want to push the surgery back until my MELD was back up around the 15 mark. (The possibilities of the second two are highly unlikely... but I'll take the latter of the 2 if by choice. hehe)

On an even more personal note, I myself have not been doing to well... My energy level has taken another nose dive and Larry has been a real pain in my side these last few weeks. I can't believe it has been almost 3 years since I started vomiting daily, (Thank God that has gotten a lot better with my meds) and almost 1 year since I started disability. It really means a lot to me that I have people praying for me, even when I can't pray for myself, so thank you to my lil group of readers and supporters... It really does mean a lot to me that you have continued to keep me in your thoughts.

Sunday, May 9, 2010

I quit - I give up!!

Living for tomorrow that is.... hehehehe. A few weeks ago I had made a promise to myself, that I was going to revert back to my old ways if it killed me... I am just going to go with the flow. Now, I still have to conserve my spoons I realize, because I do pay for it 10 fold the next day... errrrr, week, but I have to stop beating myself up when I can't do anything but lay here, like this whole week for example. hehe.
For those of you who have forgotten my rants and raves these last few months, the Donate Life Family Festival at CSUF was May 1st. (Yes, I realize I am barely blogging about it now and I do apologize) It truly was an amazing and magical day. I was surrounded by so many beautiful people, sharing their stories on their loved ones they have lost but gifts they left, and the receivers... you could see the joy for life and true gratitude for their gifts. But I have been recovering from this little 1K walk since then. And I have to admit some of these days have been filled with me just sitting in my recliner, wide-eyed and listening to my heart loudly pounding in my ears... I think I am almost recuperated though. Oh, but I have had a few wicked nose bleeds this week, and my first one that scared me is included. I actually had to call 911 for this one... and I had to take the phone outside to do it (I think ahead... it's a lot easier to hose off of concrete.) It has really been a tough week guys.
Anywho, I took River outside, unlocked the gate, and sat down... I was getting woozy and by the time the fire truck arrived I had gone to tipping my head back, just because I didn't want to see blood coming out anymore. Once the bleeding was controlled, they checked my blood pressure - low, but instead of saying all right, we are hauling you in, they sat with me for about 20 minutes while I composed myself and my blood pressure came up. In the mean time, they sure do know how to distract me... They were all getting a kick out of River, and about five minutes in, all but 1 fire fighter had left my side and was in a circle around him, cracking up... just shooting the breeze. They then told me to relax a bit longer as they took River outside, gave him the grand tour of both the fire truck and the police car that was there... They let him turn the lights on, put on the firemans hat and even sit in the drivers seat (while taking pictures... hehehe) ...I really do wonder what the neighbors must think. All in all, even though it started out scary, it was not really to bad of a day... I did get in trouble for my sense of humor (again) see above photo.
but we have another story and River got to see the big trucks... which is always fun to watch. So.... I felt crappy this week and not much got done around here, but someday soon... maybe not tomorrow, maybe not the next day... but someday soon, I will have a little burst of energy, and on that day, instead of worrying how long it will last or just when Larry will begin acting up again, I am going to seize the day - Carpe Diem! ... I'm going to Disneyland (or something. hehehee) ~ There is no gift like today. Pain or no pain!

On a side note, I will no longer be sharing stories about my extended family or childhood. Though I feel that writing and reflecting on my past experiences is very therapeutic for me, and possibly uplifting to others, I did not think of the effects it could have on others who share in my past. So for that I do apologize. I do encourage everyone to write though... you never know who or what you might inspire! Just remember that you can't reeaaally take back your words once they've been "published" hehe.

Tuesday, May 4, 2010

The Ticking Clock

Well, I have been a little sad these last few days... I know, I know, "Ricki... sad, noooo" Well I have been, and when I get sad I always go back to writing. Actually, when I am really happy I write poetry too.... but I was sitting here right now listening to David Gray and The Counting Crows (my peppy music lol) and felt a little inspired.... don't worry, it's just a poem. Bet ya didn't know that I am a published poet...

The Ticking Clock

Time to her has no meaning,
For it went to fast, and is quickly leaving.
Each grain of sand is slipping through her fingers
And soon, it will be only memories that linger.

Tick Tock
.......Tick tock
The time speeds on,
The monotone ticking of each second gone.

So she tries hard to drown it out,
She laughs, cries, screams, and shouts.
But nothing works - it can't be stopped,
Nothing can stop the ticking clock. 

by: me... hehehe 2010