2008 was quite a year!

I am certainly looking forward to a New Year of my new liver and I getting to know each other settling in so we can have years of fun and a long, healthy life together.....


Thank you all for listening to my ramblings, fears, stressing, obsessing and triumphs as I struggled through one amazing year of my life.

Thank you for all the support, cheering me on and most of all listening to me.

I have learned so much, so very much. From my family, friends, (online and off), my cruise buddies, my support group, my Dr's and health care providers and other cirrhosis patients and caregivers.

I KNOW there is a reason that I was chosen, if you will, to have this disease, to live with it, to deal with it, to learn about it and to come out the other side with a successful transplant, to learn how to live with all the things that come with that.

I have learned a lot about myself, about compassion of others, whatever they are dealing with, about patience with people and life in general. I have learned to take responsibility and take charge of the things you can, learn as much as you can, ask lots of questions, sort out the answers, do what you can and then enjoy everything you can while you wait..... because in reality you don't know what could be just around the corner.

Enjoy the warmth of the sun, the way your dogs run through snow when they live in the desert, Enjoy watching people open up about things they aren't really proud of and leave them feeling that you care about them even more for sharing because we don't judge them for past mistakes. We all have them. Watching your son struggle to become a man and your husband take care of you in a way he never thought he would have to, and smiling the whole way..........

No matter what my health brings in the future......good or not so good, I will handle it as best I know how and continue to try and reach others about the facts about what liver disease can mean to their lives and how to avoid it if it involves making a choice. Particularly to women who drink.........How I wish I had listened earlier when I had a choice before cirrhosis set in. Although I accept the journey I have been on, it certainly isn't one I wish for anyone....... A few vodka tonics less or skipped that bottle of wine...............well, I might not be telling the story I have been telling you all year or will be sharing with you shortly...

I will always support and share with fellow liver patients who are living with cirrhosis and have all the questions that I had about what is next??????

and finally I will fight for a better way for this country to deal with organ donation and allocation so there are enough organs available for people that need them. Be it a Liver, a Kidney, Lungs, Heart, Tissues for Burn Victims and Corneas so people can have sight. There are several options that are good ideas and it will take a lot to change the current M.O. But there has to be a better way.....Until then PLEASE Don't take your organs with you, HEAVEN KNOWS WE NEED THEM HERE.... and make sure that after you sign up, you tell your loved ones of your wishes.


In Fact........This is part of a document that you should read.....I had read these facts before but it hit me harder how lucky I was to get ONE of these organs....The odds were totally against me and everyone else waiting.....

A national crisis exists because of the critical demand for organ donations that is currently needed for over 100,000 gravely ill individuals on the national waiting list. While that number grows daily, a person on that list, or one who was removed because he/she was too sick dies every hour. In addition, over 2.5 million Americans die annually, but only a total of 14,400 living and deceased persons donated organs last year. ( From UNOS Facts 2008 )

Then when it crossed my mind more than once that I could be waiting for a kidney soon as well. Let's just say I wasn't very excited at the prospect. Here is a link to the entire Assembly Bill, The Organ Donation Enhancement Act.

I expect, hope and pray that the years to come will be wonderful for all of us! There is a lot to do, a lot of fun to have, love to share and people to share it with....

Stay Healthy and Don't forget to LOVE YOUR LIVER !!!!!

Ohhhhhhhhhhhhhh, it's a DRUG !!!!!

www.baltimoresun.com/news/health/bal-to.hs.expert29dec29,0,4276099.story

baltimoresun.com

Understanding what alcohol does to your body

Expert advice

By Holly Selby

December 29, 2008

The holiday season brings plenty of reasons to celebrate and with them the temptation to eat and, perhaps, drink a little more than is wise. As we all know but sometimes forget, drinking too much inevitably leads to headaches, loss of energy and generally feeling rotten. But there's only one sure way to avoid a hangover, says Tyler Cymet, a doctor of osteopathic medicine and an emergency room physician at Northwest Hospital. And we know what it is, don't we?

Is alcohol something that people should avoid?

Alcohol is a drug that has specific effects and side effects that are dose-dependent. Any time you take a drug, you should know why you are taking it, what the desired effect is, and weigh that against the side effects of the drug.

But some people can drink alcohol and not have any effects at all. That is because the dose was low and not sufficient to cause noticeable effects.

What are some of the first noticeable effects?

Certain people are more sensitive to alcohol, and to certain types of alcohol. If you drink and you feel sweaty or feel warm and flush right away, then your body is not getting rid of the alcohol in as efficient a manner as you might like, and the alcohol that does this to you is more likely to have a more serious side effect, specifically hangovers or intoxication.

We also know that alcohols - such as brandies, fortified wines, grain alcohol - that are over 15 percent will have greater effects on the stomach, like swelling and will lead to a quicker and more serious effect.

What kinds of effects does alcohol have?

Alcohol will have effects on your muscles, your stomach and on the brain. After taking a therapeutic dose of alcohol (usually considered the equivalent of one shot of hard alcohol an hour) a person's temperature drops, his heart speeds up a bit and he becomes less coordinated because of the brain fog and the changes in the muscles. People may feel warmer on the outside and colder on the inside as blood flow gets shunted to the superficial arteries and veins.

Why do people who drink typically get so clumsy?

Alcohol blocks the ability of the body to absorb calcium, magnesium and other minerals that muscles need to function. So muscle coordination already is off and, simultaneously, the brain is using alcohol instead of sugar as a fuel, which doesn't let the body run as smoothly as it does when it is running on the right type of fuel (sugars).

Are hangovers a common side effect of drinking?

Hangover is the name given to the collection of symptoms people may see after overdosing on alcohol. The muscles and brain either did not have enough of a reserve to overcome the assault of alcohol on the brain and muscles, or the dose of alcohol was too high for the body to tolerate.

What is the hangover syndrome?

A hangover usually occurs from eight to 24 hours after drinking alcohol. It starts when the alcohol level hits zero (although it can happen sooner). And generally lasts from 24 to 36 hours.

Its symptoms typically are sore, achy muscles, a change in the pattern of a person's bowel habits, lack of energy, headache, sensitivity to light and discomfort with food.

The alcohol lets you know when you are heading to a hangover: Alcohol makes you urinate more often leading to a loss of necessary nutrients coupled with a decreased ability to process and take in more minerals and other nutrients. If you are urinating a lot you are developing an electrolyte imbalance and that is when the muscles start to ache, you have no energy, headaches, sensitivity to light. And you are going to start getting light-headed or dizzy.

Once you've made the mistake of drinking too much alcohol, is there anything that can be done to alleviate a hangover?

We hear about drinking milk beforehand or caffeine afterward; we hear about IVs; we hear about taking Motrin before going out to prevent a hangover, but there is nothing [other than not drinking alcohol] that we really know about preventing or curing hangovers - it is all guesswork. And the treatments usually address one of the symptoms of a hangover and not the whole hangover syndrome. We know how alcohol works on the body and since you already know the root cause of a hangover, you know how to prevent a hangover.

Holly Selby is a former reporter for The Baltimore Sun.

The Kidneys join the Team !!!!

After my visit to the Doctors last Friday and the Dr's said let's try it with no dialysis I have been peeing up a storm. When they said it will start as a little bit, gain momentum, then they will just open up....Well, gotta trust the Dr's experience with things... They were right. (Thank God)

Here are a couple of pics on my first few days of dialysis while in the hospital. They would come to my bedside which makes it convenient and comfy for me.....Just make sure you do everything you need to do in the bathroom and get good and comfy for awhile because there were times I couldn't sit up or get out of bed for 6 hours. This has gone on 3 times a week for about a month even though we graduated to going to the dialysis center and sit in a room full of people, machines, and dialysis nurses.

At this point the catheter for the dialysis is in my neck and yes, the tubes of blood (my blood.....yikes) is warm, very weird concept and feeling.......but you get very cold during dialysis.......

So, long story short....No dialysis for now...I will get the final word on Friday after I get some blood work done and see the surgeon.....

I haven't felt very well all day today...nauseous, tired, just not right over all...but tomorrow is a new day.

My wonderful friend Kim is here keeping me company and cooking some wonderful things for us this week.......THANK YOU, KIM.....she flew down from the Bay Area the day after Christmas and will spend New Years with us as well.....

Next week I plan on going back and posting on the transplant....my views, feelings, some pics, (yikes) from what I remember.....

Good Night for now...

And the Parade Goes By.............

I don't know how many of you grew up watching the Rose Parade on New Years Day but I did every year......and in LA we get to watch it all day long on a loop !!! So Cal people are CRAZY about the Rose Parade in Pasadena ! They work on the floats all year and start decorating them the day after Christmas....Today!

I have always wanted to see the parade live but secretly love watching it on TV with a fire going and in my Jammies. We have gone down several years to see the floats on display the couple of days following the parade and I hope I can talk Joe into taking me this year.

One other thing that I have wanted to do is to help decorate the floats. It takes thousands of volunteers a week of 24/7 shifts in very cold hangars (think, KEEP THE FLOWERS COLD!) snipping, seeding, flowering each flower on all the floats.

When I found our local OPO (organ procurement agency) One Legacy, teams with Donate Life and does a float every year.....well, sounded like something I should do!

Last year I was just about on the list....but had a cold and wasn't feeling well, so 8 hours in a cold hangar didn't sound to smart and well, pretty much out of the question this year.....So, tune in NEXT year.....I will be there for certain!

In the mean time....check out the website, buy a rose for the float or some merchandise, donate some $$$$ and don't forget to register for organ donation if that is your wish while you are there!

http://www.donatelifefloat.org/
http://www.tournamentofroses.com/roseparade/

PS....The actual photo of a float is the one from 2004 one of my favorites and then there is the artist rendering of this years float. You will have to watch or come to Pasadena to see it....

Enough of silly holiday movies.......on with the medical drama

Back to the Urology report.....Bet you didn't think we would be talking about that here....but thank you for rooting for the kidneys here..........

Tues, I peed 700 mls even with dialysis...
Wed, I peed 800 mls....
and CHRISTMAS DAY I crossed the line and peed 1100 mls !!!!!!

All this while maintaining the same weight....and drinking a bit more....which means I am not storing it..... My body is processing it and my kidneys are on their way back.... Oh, and my creatinine is down from 3.1 last week to 2.7 today. Also, my Bilirubin was a bit further down today too.

So, I call LLU today....You have to LOVE unit 4100 who allows you to call them on the unit when something changes and get direction and help right away...They told me to come in and do some labs and when we got there and walked into the unit. My hepatologist was there, my surgeon was there, the nephroligist I saw in the hospital was there along with all the nurses, coordinators, and wonderful others.....

Now, they weren't there to see ME, they all just happened to be there rounding, etc and caring for the in house patients. But, they did all make time for me, cheer me on, change some appt's to earlier and decided that I should skip dialysis until they see me again....

So, until Tuesday I will keep monitoring my weight, fluid intake and out cross my fingers and thank Santa (and a few others)..... I personally think God just thought I needed to experience some of what the kidney patients go through.....and know that I certainly didn't want to live like that or head down another transplant path. I certainly have much more understanding and compassion for people living with kidney failure.

Funny how a few months ago I was complaining about having to find a potty off every exit while on Lasix to this..... :-)

I also want to point out.....not for myself but for other patients and caregivers.....The Dr's only took me off dialysis for now, etc....which I wanted them to do to force my kidneys to work because I kept good records of what was happening at home...measured everything, kept copies of my recent blood work, etc....Marched down there the day after Christmas for a 2 hour drive, etc.....You are your own best advocate....Do more than you have to....

and for you Christmas Vacation fans...

Sorry about the profanity.....ya gotta be a fan to appreciate these.
Or watch the movie a couple of times and become one!


Here are 3 of my favorite quotes..... Don't forget to watch the scene in the grocery store with Clark and Eddie.... Is Eddie just *happy* ??????? hehe

Eddie: You surprised to see us, Clark?
Clark: Oh, Eddie... If I woke up tomorrow with my head sewn to the carpet, I wouldn't be more surprised than I am now.

..........................................................................................
Clark: So, when did you get the tenament on wheels?
Eddie: Oh, that uh, that there's an RV. Yeah, yeah, I borrowed it off a buddy of mine. He took my house, I took the RV. It's a good looking vehicle, ain't it?
Clark: Yeah, it looks so nice parked in the driveway.
[Raises class to his mouth]
Eddie: Yeah, it sure does. But, don't you go falling in love with it now, because, we're taking it with us when we leave here next month.
[Clark nearly chokes on his drink]
...............................................................................................
Clark: Hey. If any of you are looking for any last-minute gift ideas for me, I have one. I'd like Frank Shirley, my boss, right here tonight. I want him brought from his happy holiday slumber over there on Melody Lane with all the other rich people and I want him brought right here, with a big ribbon on his head, and I want to look him straight in the eye and I want to tell him what a cheap, lying, no-good, rotten, fore-fleshing, low-life, snake-licking, dirt-eating, inbred, overstuffed, ignorant, blood-sucking, dog-kissing, brainless, dickless, hopeless, heartless, fat-ass, bug-eyed, stiff-legged, spotty-lipped, worm-headed sack of monkey shit he is. Hallelujah. Holy shit. Where's the Tylenol?

When the police show up at the house at the end when the boss is there....watch where Ellens hands go.......

for the rest go to http://www.imdb.com/title/tt0097958/quotes

IF YOU ARE A CHRISTMAS VACATION FAN....TELL ME OR SEND ME YOUR E-MAIL ADDRESS AND I will send you something special.......

The annual 24 hour Christmas Marathon

Come on, you know you will flip by it at least once....Did you know it was a National Lampoon Movie? Anyone like Christmas Vacation??????

20 Holiday Trivia Questions About “A Christmas Story”

By scottie325

To entertain my family when they come over to visit on Christmas day, I decided to put together a holiday trivia game for them. I’ve mentioned several holiday trivia sites I was checking out before in earlier posts, but I finally settled on doing a quiz on “A Christmas Story” due to the epic 24-hour marathon. Here are a selection of questions I put together for the game. Feel free to share them with your friends (and then brag that you researched these all by yourself!).

1. What is the complete, official name of the gift Ralphie wants for Christmas in “A Christmas Story”?
A Red Ryder carbine action 200 shot range model air rifle

2. In what year did the movie “A Christmas Story” take place?
1940

3. What city was used for most of the filming of “A Christmas Story”?
Cleveland, OH

4. True or False: The Red Ryder BB gun that was used in “A Christmas Story” had to be specially created because no such toy ever existed.
True

5. What year was “A Christmas Story” released in theaters?
1983

6. Which character doesn’t actually appear in the book that “A Christmas Story” is based on, “In God We Trust, All Others Pay Cash”: Flick, Scut Farkas, or Ralphie’s brother Randy?
Scut Farkas

7. Yano Anaya, who played Scut Farkas’ evil toadie Grover Dill, is also known for his movie role of playing a sinister paperboy who yells “I want my two dollars!” in what 80s teen movie?
“Better Off Dead”

8. True or False: The original book that “A Christmas Story” is based on was a collection of short semi-autobiographical stories that were written for Reader’s Digest.
False–They were a set of short semi-autobiographical stories that were written for, of all places, “Playboy” magazine.

9. What Academy Award-winning actor was originally considered for the role of Ralphie’s “old man” before concerns about his high salary led to the studio casting Darren McGavin for the role?
Jack Nicholson

10. What does Santa Claus suggest as a gift when Ralphie gets tongue-tied trying to tell him he wants a Red Ryder BB gun?
A football

11. During the movie, Ralphie imagined himself as a cowboy taking on a set of robbers with his Red Ryder BB Gun. What was the name of the leader of the robbers?
Black Bart

12. What contest did the old man win in order to get the leg lamp as a prize?
A crossword puzzle contest in the newspaper

13. When it came to tasting soap, which brand was Ralphie’s personal preference?
Lux

14. When Ralphie tried to recover after his mom initially dismissed his request for a Red Ryder BB gun, what toy did he suggest?
Tinker Toys

15. What gift was dropped into the Old Man’s lap on Christmas Day?
A bowling ball

16. What relative gave Ralphie the pink bunny pajamas?
His aunt

17. According to Ralphie, how many years has it been since his mom had a hot meal: 10, 12 or 15?
15 years

18. What was the last name of Ralphie’s family?
The Parkers

19. What was the name of the Chinese restaurant the Parkers ate at after their dinner was ruined?
Chop Suey Palace

20. Within 100 dogs, how many dogs did Ralphie estimate his neighbor had?
785 (”Our neighbors the Bumpuses had at least 785 smelly hound dogs that ignored every other human being on this earth except my old man.”)

BONUS QUESTION: The house that was used for “A Christmas Story” still exists today in Cleveland. What is the web site address for the house’s official site?
http://www.achristmasstoryhouse.com

Have fun !!!!

Merry Christmas Everyone!

I am here....a bit later than promised but we made it to Christmas and feel very blessed and happy to say that.


Thank you all for being patient with me. We passed the 1 month mark last week. This Sunday will be 6 weeks since the big day... I am feeling really good. Getting stronger and making progress every day! It is all about the little things... I can now get up and around with no help at all. A little slow and I don't know quite how far I can walk without taking a break but I now can go to the kitchen and make my own food...., bend over, get myself dressed, take a shower or bath from the chest down, wash my own hair in the sink.....(I have to keep the dialysis catheter in my chest dry), etc, etc.

Last week we had snow which closed the only pass between us and Loma Linda and the dialysis unit. That required some reorganizing as did the fact that Mary had to make an emergency trip to Arkansas as her brother in law passed away. So, Joe and I were on our own and because he works up the street now and things sort of shut down up here we did fine. My dialysis unit helped me arrange for a couple of temporary visits to a local dialysis place and we bundled up and enjoyed the snow. We are at 3,000 ft here in the high desert so we love the snow when we get it as it only happens about one day a year. This one lasted a couple of days and was absolutely beautiful...............................................

We also had our annual Transplant Support Group Christmas Party......Which is a big deal at LLU for us...I didn't think I would go initially as I wasn't walking and still being a month after transplant , I am highly immunosuppressed. but everything aligned...... the snow stopped and the pass was clear. I had been up and walking around without assistance and felt good, so Joe took me down to the party for a bit. It was so good to see everyone !!!! The photo's are of me hugging Judith, my pre-transplant coordinator and of Dr. Mendler and myself...

My liver is doing well, we need the numbers to come down a bit more.....My kidneys seem to be kicking in.....I am peeing more....yesterday I peed 700ml's, up from dribbles in the hospital. 1000 ml's is our magic number so I am trying.....hard to do when I still can't drink to much...

Joey will be here tonight and through the weekend for Christmas. We are having a nice quiet Christmas with a turkey dinner courtesy of Marie Callendars.....(well, and our CC.....LOL) I was going to attempt a simple meal with the help of Joe and Mary but with 2 non cooking caregivers in the kitchen with me trying to direct them just reeked of trouble and kitchen fighting so I decided to let Marie to the cooking and we can do the reheating......I would much rather have a peaceful day.... I did put up a Christmas tree in my bedroom area....old fashioned, family ornaments and all...I am feeling very nostalgic this year...

My love and thanks to you all for your support, notes, e-mail or otherwise, calls, prayers during this time... If I haven't responded to you personally yet, I will......but know that everyone brings a big smile to my face and heart when I get it.....

Merry Christmas and may we all have a wonderful year full of health and love of the people around us....

Nancy

after a week of no posting

All I am posting tonight is that all is going well and I will do a full update on last week tomorrow. Things are improving. I have just been tired and there have been lots of appointments, including dialysis.

Talk to you tomorrow with some photo's......

nite-nite, Nancy

Back in the hospital

Today my day started at 5am with a quick breakfast. Then down to LLU for blood work a appt with my surgeon then off to 5 hours of dialysis. In the midst of my day my Dr's decided that I could use some blood as my hemoglobin is low due to my kidneys not making the bed blood cells they should. So I am in for some juice and a sleep over.



Sent from my BlackBerry® smartphone with SprintSpeed

recovery

Just a quick update..... I have been home technically since last Sat night but have spent almost every day at Loma Linda either having appt's with my surgeons, blood work or having dialysis. Today is an at home day. I am having someone come over and cut my hair today....It needs some help badly...

I am very tired when I am not trying to get all this stuff done. I am having a huge problem with mobility due to carrying so much extra fluid and am on 1 ltr per 24 hours liquid restriction which includes all liquid. It isn't much but it is coming off slowly. They took 4.5 liters off yesterday...Each dialysis is 4 hours in the chair plus a 2 hour commute and 30 min getting me hooked up. I mainly sleep during the sessions so far...My liver appt's are 2x a week at 7am for a blood draw which means we are up at 5am. on the road by 6...I have to travel with my feet up.

Monday I had too use a wheel chair to get in and yesterday I was able to use a walker....I can walk around the house with no walker.

My liver values are good...my alt and ast are 28 and 32......NORMAL! my bili is still high at 6.7, my creat is 4.5 but my hemoglobin is low...they are treating me for that after each dialysis.

I still can't pee...................Dr's say 95% of the time the kidneys come back...it's just a matter of when......

I am going to go sit on a lovely potty chair in my shower now so I can clean up and get my hair cut....

I want to go back and start at the beginning with you all but for now.....I think I will just write about what is happening day to day.....

At Last

SHE IS HOME!

Exit Day!

I just had a visit from my Surgeon, (on of them) Dr Franco.......And he gave the official word that I can go home today.....There was some concern this morning that they may want to have kept me over the weekend for various recent events.....but I wanted to let you know that I feel better each day....They are getting the fluid off with dialysis and fluid restriction, slowly but surely. My kidneys still aren't functioning... I will tell you more about that later....They have good blood supply and the hopes are still for a full recovery with them......My liver numbers are still a bit higher than they would like.....but things are well.

I should be home by tonight.......

Talk to you then!

My liver and I have been together 3 weeks tomorrow!

Leave/Stay.....Leave/Stay

Hello out there in the world of the Real Life blog.....I (Mary/Mom) am updating you because to say the least, 'it was a big day'. Nancy was all primed to 'get outta' Dodge' some time today, but first two BIG things had to get done.

She had four (yes, '4') hours of dialysis ....that means NO food/liquid all day because following the big D, she was to have another type of catheter put into her chest so that when the on-going 'out patient' dialysis is performed, it will be easier and with less chance for infection. So....off to the Cath Lab she went around 3pm. During this procedure she experienced atrial fibrillation. Her heart rate went crazy. Her stay in the Cath Lab was extended but returned to the same room about 7pm. With Joe at her side her spirits continue to be good and she says HELLO to all of you.

Needless to say, LLMC will be keeping a close watch on her another night....and that is a good thing. She also finally got to eat (Yeah!!). The nurses/staff are excellent and so attentive. Following a good rest, we are now keeping our fingers crossed for a Saturday release.

Thanks to all of you for continued prayers for our Nancy/family. Nighty..night.
Mary

Homecoming

Well it looks like Nancy will be coming home tomorrow. It's been a long haul and she's not done yet but things are looking up once again. Nancy will fill you in soon.

Hi from TRANSPLANT CENTRAL AND ME !!!!!!!!

HI HI HI HI HI........ I MADE IT !!!!! I CAN SEE THE LIGHT ON THE OTHER SIDE OF THE TUNNEL !!!!!!

As you can all imagine I have tons to share with you and chew over with you all over then coming weeks but for now........ I just want to say hello, I am here, getting stronger....if I talk to much I will cry so I will just tell you. My family, friends, extended family and friends, all who prayed and held hands and waited with me, supported my family and hoped for for all good things......Thank you from the bottom of my heart.... I will be in the hospital probably until the weekend....so maybe we will have more time to chat later..... Hugs and Kisses, Nancy

Light at the end of the tunnel

Today was a turning point for Nancy's recovery. She is feeling great and her spirits are high. Her color is nearly normal again and her edema is less. The lab values continue to approach normal. The Dr.s are happy, Nancy is happy and I am happy. The Medics think that she may be released in 36 to 48 hours if improvement continues.

Nancy can hardly wait to get back home and back to this blog. Lets keep our fingers crossed that this will happen soon.