Cruisin with the Real"s

Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07

Loma Linda Medical Center

Loma Linda Medical Center
Where the magic happens........

Wednesday, December 31, 2008

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

Click here to find out more!
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.

Monday, December 29, 2008

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...

Friday, December 26, 2008

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....

Wednesday, December 24, 2008

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

A Christmas Story Holiday Trivia Quiz 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

Saturday, December 20, 2008

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

Friday, December 12, 2008

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

Thursday, December 11, 2008

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.....

Saturday, December 6, 2008

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!

Friday, December 5, 2008

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

Thursday, December 4, 2008

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.

Tuesday, December 2, 2008

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

Monday, December 1, 2008

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.

Sunday, November 30, 2008

It's been 2 weeks

Today was a better day. Nancy walked 3 ciecuits todat thar about 300 feet ( 100 yards for the football fans ). Good spirits, eating well. All numbers continue to improve, her color is improving. Todays diaysis went well and Nancy feels much better.

Saturday, November 29, 2008

D- Day ( Dialysis that is )

With creatinine reaching 6.4 the decision was made to begin dialysis. This first session lasted 2 hours and extracted 2 liters of waste fluids. For the next 2 days the sessions will last for 3 hours each. Post dialysis Nancy experienced a tightness in her chest, angina and tachycardia. This sounds like but was not a heart attack. It was due to fluid and electrolyte shift and a pericarditis probably due to edema. Medical response was swift and effective and Nancy recovered quickly.
Nancy feels that as soon as one thing is addressed another pops up. She is anticipating recovery but as you would expect she wants to get on with it.
As Rosanadana once said " if it's not one thing it's another. "

Friday, November 28, 2008

The 28th. Day 13

Nancy's liver values are a bit lower and steady. The Doc feels that the steroids are working. Not as jaundiced today and her face looks better. Still very tired and very swollen. They keep bouncing back and forth about the dialysis. Change of meds. due in the morning.
Sorry that's all for now, I'm tired.

Thanksgiving day

Nancy continues in her struggle. Biopsy confirms rejection. Her creatine, a measure of kidney function, continues to climb to the point that the Dr's. are considering dialysis. Bilirubin and liver values are still high but stable for the moment. thanks to the steroids. Steroids are also causing diabetes, edema, ascites and so on.
Nancy's spirit remains high through this struggle. I always knew that she is a strong woman and this certainly confirms it for me. I wonder if I would have the GRIT to go through what she is struggling with..
Mary brought Nancy a Thanksgiving dinner from Mimi's restaurant and she enjoyed it and ate well.
Nancy enjoys your cards and thoughts, keep them coming. Send them on line, to home or Loma Linda University Hospital % Nancy Real room 9 bed 2.
Now off to see what this day brings.

Tuesday, November 25, 2008

11/25

Nancy continues in good spirits. The yellow has returned. liver values have risen slightly and her bilirubin has skyrocketed. Dr's. are concerned that rejection may be starting. They tell me that this is not uncommon and an adjustment in meds. may be all that is needed. They passed a jugular cath. this evening to evaluate the liver cells and started blood, urine and stool cultures to rule out any signs of infection/rejection. They did another ultrasound this am and the liver parenchyma looked good as did the blood flow. A small cyst was visualized which didn't bother anyone but me.
Nancy finally was allowed to have clear fluids and soon, maybe later tonight, solid food.
I will go to work in the morning but I'll see Nancy in the evening. Mom (Mary) will at her bedside tomorrow.
Good Night

11/25

Monday, November 24, 2008

24th.

Good news and not so good news. Nancy's N/G tube was removed this morning and this made her feel better All values continue to improve but her bilirubin has increased. This may be a sign of rejection. A biopsy is scheduled fot the am. If organ rejection is occuring more potent drugs may be necessary. We were hoping to have Nancy home for Thanksgiving but not so sure now.

Sunday, November 23, 2008

11/22

11/22 Continues to improve. Still NPO due to N/G tube which may be removed on Sunday. . Some minor heart palpations. Has been sleeping more. All values continue to stabilize.

Friday, November 21, 2008

Sorry for the delay.

11/20 All is going very well. Nancy is walking some, eating and continues to improve. I was with her during an ultra sound and her new liver is functioning very well, excellent blood flow, not much abdominal fluid and so on. The surgeon confirms my assessment. He simply said “this is a healthy liver.
I’ll be in touch. Love, Joe
11/21 Some problems today. White cell count is elevated probably due to lack of GI motility. Are doing blood and urine cultures and are giving, IV antibiotics. Liver values are dropping towards normal. Today's ultrasound looks good. X-rays show ilius so they passed a N/G tube to relieve GI gas. Sleeping well.

Wednesday, November 19, 2008

Last 24

Completely missed day three on blog. Spent all night at hospital with my princess Nancy. Joey, our son is staying with her tonight. I must sleep and work tomorrow
Dr's are pleased with progress. Ultrasound today showed " a normal liver." Good looking tissue and real good blood flow. Nancy continues to improve still weak but did eat a few bites tonight. Each day, no each hour, she grows stronger.
Now to bed.

Tuesday, November 18, 2008

Good morning

My new liver and I are awake!
Sent from my BlackBerry® smartphone with SprintSpeed

Day 2 ramblings

It's been quite a day. It's 5:15 am, just got home from hospital. Have watched Nancy's eyes and skin change from yellow to white.... almost before my eyes. That means her new liver is working. and of course the liver values also tell us this is true. We just moved her from ICU to unit 4100. This is good for it means she is recovering and it puts her with nurses and others that specifically care for transplant patients and know their special needs.
As Nancy recovers she is becoming increasingly concerned about her immunosuppressed condition. She is concerned that friends and family may not take this seriously. Well it is. The slightest cold or infection can be life threatening to her. She wants me to remind you to wash hands, wear masks and stand back a few feet. If you have been exposed to your kid's or co worker's cold, stay away for a while. No flu shot... No visiting. As time passes things will ease up but for now please be aware of the seriousness of this.
We appreciate your IM's and emails... keep them comming. For now I will try to keep you posted here. Don't worry... you know Nancy... she will be back at her computer sooner than you expect.
Thank's, Joe

Monday, November 17, 2008

She did it>

Prep started yesterday at 10:30, surgery started at 12:30 and ended about 8:30. Saw Nancy in recovery about 9:30 and she looked much better than I expected. The surgeon said that the proceedure went good then he said no not good it went GREAT! Only 2 units of blood. Nancy was asking for me at 4:30 am. I am very tired and will try to elaborate later just know everything looks great for now.

Sunday, November 16, 2008

This is IT

We are on our way to the hospital...about 5 min away...watch the blog... they are going to get my liver. I should be in surgery by noon...

Hugs,
Nancy

Friday, November 14, 2008

No, I am NOT in MONTANA !!!! :-)

That is where my brother Doug and fiance, Kelly live! and if you click on the pic of my brother and I you can see that we are related!

Joe, Mary and I are off to see the 007 flick tonight....See you after popcorn!

VIVA LAS VEGAS PHOTOS








Hello from Montana!

As promised I have finally loaded the pictures from our trip to Vegas where we got to spend time with Nancy and Joe. Doug and I had an opportunity to make a quick trip to Vegas and siezed the moment to coordinate a visit with Nancy and Joe.

It was wonderful to see them both. Especially nice for Doug to spend some time with his sister before surgery. In spite of Nancy saying how her glow was a "liver tan", she looked great! You wouldn't know all of this was going on in the background.... hats off Nancy!


Since it was a quick trip for all, we jammed as much into our visit as possible. Nancy and Joe managed to make money on the slots, where Doug and I just watched it dissappear, one nickle at a time... I guess gambling isn't our forte... We ate great food, saw a show, and ate more food, loved both! Unfortunately, we didn't have enough time to do the expected "girls go shopping" thing, but my wallet was safer for it.


Time as always, went by all too fast, before we had to catch our plane, and part ways. We plan to fly down as soon as we get the call, so hopefully we will see each other before Christmas. In the meantime, enjoy the pictures, and notice how both Doug and Nancy have smiling eyes. Happy Fall to all. - Kelly

Tuesday, November 11, 2008

Technique makes liver transplant easier

This was on ABC News last night and here is a link to the video...


Monday, November 03, 2008
By Denise Dador

A new surgical technique is making liver transplants easier.

Torrey Brown, Sr. and Torrey Brown, Jr. share more than a name; they share a liver.

"I always see myself in the future being able to say, 'You know you have a piece of me in you," said Brown, Sr.

When his son was born with a liver that wasn't working, Torrey senior was a perfect match for a transplant. He was one of the first to be spared the pain of traditional surgery.
Story continues below
Advertisement

"Often times, the donors would come out of these operations looking worse than their recipients," explains Dr. Lynt Johnson from Georgetown University Hospital.

Transplant surgeon Dr. Johnson led the team in Torrey senior's liver removal. Two tiny incisions were made -- one for a laparoscope and one for an instrument that cuts tissue. Another three-inch incision allows the surgeon's hand inside the body to move the liver into place. The liver is then divided and removed by hand.

"It allows us to really be able to see some things that we weren't able to see in the same fashion," said Dr. Johnson.

The new procedure means a four-hour surgery, a smaller incision and it cuts hospital and recovery time in half.

Also, 90 percent of Torrey senior's liver will grow back in three months.

"Senior won't feel like he's got part of his liver missing, nor will he feel it as its growing back," said Dr. Johnson. "But the liver will re-grow. And Torrey [junior], as he grows, the liver will grow with him."

Torrey junior will need medication and blood work for the rest of his life.

The main risk of laparoscopic surgery is usually bleeding. Dr. Johnson says he reduces that risk by using his hand to compress the main blood vessels. The only other organ donated by a living donor is the kidney, which can also be removed laparoscopically.

And the phone rings at 5 AM !!!





There is nothing quite like having your phone ring in the dark, waking you up from a deep sleep. Nothing quite like it unless you are WAITING for the phone to ring in the middle of the night telling you to come to the hospital, that you liver is on the way to meet you in surgery!

And then there is some old woman on the other end dialing a wrong number !!!!!!!!!

Well, needless to say it shook me a little and was it was hard to go back to sleep.

On another note, Joe and I went to the Palm Springs support group yesterday and today Mary and I are on our way to Loma Linda to meet with the support group there and make a stop at Trader Joe's......

Oh, my favorite new find is Ginger Lemon English sandwich cookies that I picked up at Costco last week.....!!!!! They are made by Carr.... you must pick some up if you like either of those flavors.....!!! I highly recommend them!

Friday, November 7, 2008

Kindle reading

By the way, I did get my Kindle and am really liking and enjoying it. I used it outside by the pool in San Diego and there was no problem with the lighting and the fact that I could adjust the text/font size I didn't need my reading glasses which is a great boon when outside. Those that have seen me try and use my reading glasses and sun glasses at the same time will agree! It's always a toss up. Shade my eyes from the sun and look *cool* or squint and wear my reading glasses outside...

I could just get reading sun glasses but I juggle 2 pairs right now!

I found the article below on my Time subscription on Kindle...and I probably wouldn't have read it otherwise.

The Kindle is fulfilling it's promise of helping me read more and things I wouldn't ordinarily pick up.

Thanks Amazon!

How Obama rewrote the book. Time magazine



...........................................







No matter who you voted for the magnitude of how this changes everything can not be overlooked. Here is a link to the full article.



Wednesday, Nov. 05, 2008
How Obama Rewrote the Book
By Nancy Gibbs

Some princes are born in palaces. Some are born in mangers. But a few are born in the imagination, out of scraps of history and hope. Barack Obama never talks about how people see him: I'm not the one making history, he said every chance he got. You are. Yet as he looked out Tuesday night through the bulletproof glass, in a park named for a Civil War general, he had to see the truth on people's faces. We are the ones we've been waiting for, he liked to say, but people were waiting for him, waiting for someone to finish what a King began.

"If there is anyone out there who still doubts that America is a place where all things are possible," declared the President-elect, "who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer." (See pictures of Barack Obama's victory celebration in Chicago.)

Barack Hussein Obama did not win because of the color of his skin. Nor did he win in spite of it. He won because at a very dangerous moment in the life of a still young country, more people than have ever spoken before came together to try to save it. And that was a victory all its own.

Remember this day, parents told their children as they took them out of school to go see an African-American candidate make history. An election in one of the world's oldest democracies looked like the kind they hold in brand-new ones, when citizens finally come out and dance, a purple-thumb day, a velvet revolution. A hundred thousand people came out in red states to hear Obama; a hundred fifty thousand turned out in purple ones, even after all this time, when they should have been sick to death of Hope and Change. In Michigan, people put an electric fence around their yard sign to protect it. NASA astronauts on board the International Space Station sent a video message encouraging people to vote; they did, from 200 miles up. A judge in Ohio ruled that homeless people could use a park bench as their address in order to register. A couple flew home from India just to cast their ballots. Obama's Ohio volunteers knocked on a million doors on Monday alone. That night, a Florida official locked himself in the Seminole County election headquarters and slept overnight with the ballots to make sure nothing went wrong with the vote. Early-voting lines in Atlanta were 10 hours long, and still people waited, as though their vote was their most precious and personal possession at a moment when everything else seemed to be losing its value. You heard the same phrases everywhere. First time ever. In my lifetime. Whatever it takes.


Click the link above for the full article................God Bless America

Wednesday, November 5, 2008

Joe at work !!!!


I just found this on the hospital website...isn't he cute???? And look at his donate life pin!

A must attend So Cal seminar !!!!!!

Fighting for Health in the 21st Century


A golden opportunity to hear experts and ask questions regarding..

· Managing diabetes and kidney disease

· Cardiovascular disease, tips for senior health

· Cancer—promising new research and treatments

· How to obtain health insurance from an expert

· Social security benefit claims—the “how to” from an attorney

· Updates on Liver & Kidney Transplant Surgery

· Fatty liver, get the skinny on fatty liver disease



Presenters:



Rodolfo R. Batarse, MD, Nephrologist, Palm Springs, CA: Managing diabetes & kidney disease

Charlie W. Shaeffer, Jr. MD, Cardiologist, Rancho Mirage, CA: Tips for insuring Seniors’ healthy hearts

David Young, MD, Oncologist, Rancho Mirage, CA: Promising new Cancer Research & Treatments

Tom Perkin: Need help getting medical insurance? Tom is the expert to assist you

Bill La Tour, JD, Social Security expert and attorney: The “how to” on SSDI & SSI benefit claims

Okechukwa Ojogho, MD, TX Surgeon, LLUMC: Update on Liver & Kidney Transplant Surgery

Donald Hillebrand, MD, Hepatologist, Scripps Hospital: “Get the Skinny on Fatty Liver Disease”

Where

Desert Regional Medical Center, 1150 North Indian Canyon, Palm Springs

Martin Anthony Sinatra Education Seminar Auditorium



When

Sunday, November 23, 2008 1 – 5 P.M.


No charge for Admission
Refreshments & Fellowship


For Further Information Phone 760-200-2766


A Presentation by the FAIR Foundation Liver Disease & Transplant Support Group


Sponsored by Roche and Astellas

Tuesday, November 4, 2008

Let's talk Liver.....Fatty Liver in particular (NASH)












The slide on the left shows fat accumulation in liver cells. The slide on the right shows healthy liver cells.



Ok, Enough with the pretty pictures and back to the subject at hand....Liver disease.


This photo as you have guessed by now is one of a fatty liver. Fatty Liver is one of the steps towards Cirrhosis. It doesn't always end up as cirrhosis but a lot of the time is does.

It can either be alcoholic related or not. NASH stand for Non-Alcoholic Liver Disease.

I am going to repost a little bit here and give you a couple of links to look at but what you should know is that it is becoming more and more prevalent and is effecting younger and younger people. Even children who are overweight. It is a serious health care problem today.

I will tell you how it relates to livers available for transplant in a minute...

Nonalcoholic fatty liver disease

Definition

Nonalcoholic fatty liver disease (NAFLD) describes a range of conditions involving the liver that affect people who drink little or no alcohol.

The mildest type is simple fatty liver (steatosis), an accumulation of fat within your liver that usually causes no liver damage. A potentially more serious type, nonalcoholic steatohepatitis (NASH), is associated with liver-damaging inflammation and, sometimes, the formation of fibrous tissue. In some cases, this can progress either to cirrhosis, which can produce progressive, irreversible liver scarring, or to liver cancer.

Nonalcoholic fatty liver disease affects all age groups, including children. Most often, it's diagnosed in middle-aged people who are overweight or obese, and who may also have diabetes and elevated cholesterol and triglyceride levels.

With the increasing incidence of obesity and diabetes in Western countries, nonalcoholic fatty liver disease has become a growing problem. Although its true prevalence is unknown, some estimates suggest it may affect as many as one-third of American adults.

Because early-stage nonalcoholic fatty liver disease rarely causes any symptoms, it's often detected because of abnormal results of liver tests done for unrelated issues. Treatments for nonalcoholic fatty liver disease include weight loss, exercise, improved diabetes control and the use of cholesterol-lowering medications.

Here is a link to more technical stuff from wikipedia talking about the differences between Fatty Liver related to alcohol or not....

One of the reasons I bring it up is PLEASE have your blood drawn at regular physicals and ask your physician in particular about your liver enzymes. ALT and AST. If they are high you need to pay attention !!!!!

I wouldn't be where I am if I had.....But then nothing is going to happen to ME !!! or so I thought. There won't be any outward symptoms....You won't FEEL sick but your liver may be screaming at you.

Something I learned from my coordinators at Scripps I find interesting. Usable livers available for transplant are getting scarcer as they can take a perfectly healthy looking donor. Get all the approvals for transplant from the family. Be ready to get the organs of that generous person ready for transplant. With a liver that includes a biopsy. And low and behold the liver is a *FATTY LIVER*, therefore NOT good enough for a transplant.

This is happening far more these days than in days past. There is more obesity, more diabetes or pre-diabetes etc and it is effecting the liver so much that it is no longer a viable organ for transplant.

ALSO, the increase of fatty liver in the general population is increasing the number of people who NEED transplants...

As you can see, it is becoming a huge problem and is effecting transplant from both ends. Donors available and an increase in recipients listed for transplant.

Hope everyone got out and voted today!


Monday, November 3, 2008

A weekend in San Diego

Mary Janes Coffee Shop San Diego


Mary Jane's Coffee Shop

Is a MUST dine at stop for breakfast


San Diego's anti-elitist, democratic ways cater to all turn-ons. So does the Hard Rock Hotel San Diego's coffee shop. Featuring a classic American style with a contemporary twist, Maryjane's Coffee Shop showcases iconic furniture and textures alongside the latest in high-tech elements. When night falls, Maryjane's shows its modern flair, with a focus on the circular bar and outdoor patio. Signature menu items include LA sticky buns, burgers, chopped Cobb salad and chicken pot pies to enjoy while dining at the restaurant or to order from the convenient grab-n-go counter. Open for breakfast, lunch and dinner weekdays and non-stop on weekends, Maryjane's features a fun style and fresh attitude.

No reservations required. But if you have questions, drop us a line at (619) 764-6950.


Hotel Solamar

Is Pet Friendly....all Kimpton Properties are...the are one of our favorite hotels to stay at. If you can find one where you are going....We highly recommend it. Sign up for the e-mail notices for good deals.

Hotel Solamar, a pet friendly San Diego hotel right in the heart of the Gaslamp District, wants to make sure you don't have to leave your favorite friend at home. Complimentary to all our four-legged guests:

  • Restful accommodations in our spacious guestrooms and suites
  • Welcome treats for your pet
  • Food and water bowls place in your room for use throughout your stay
  • Pet sitting, grooming, walking and massage services available through our concierge

There are great deals out there now....

We also went to dinner with a colleague at a great restaurant called Confidential on 4th Ave. Very trendy place, great service, small plates. We ordered lots of *small plates* to share and including drinks, (non-alcoholic), coffee, desserts...We spent 2 hours there and spent less than $18 per person.... Before 7pm EVERYTHING was 50% off. The hotel room was also on special and we received $100 in credit to spend on room service, by the pool or in their restaurants....It helps to keep your eyes open for these...!!!

on theTransplant list at Scripps in San Diego


I was finally listed at Scripps at the beginning of last week.... YEAH !! and when I was listed I was listed at a MELD score of 21 which at the time in my blood type "B" I was "tied" with one other person in the San Diego area at a meld of 21.

My mom, Mary accompanied me to my listing appointment with coordinator Kara where she went over all the details of what to do while waiting, instructions on when follow up testing and appointments would be, where to go when I was called and what would most likely happen, etc. etc. I was also given a beeper.....Funny, it has been so long since I have seen or used a beeper I had to remember a bit on how to use it! It would only be used if they couldn't reach us by all phones.

I came home and had a cold hit me on Thursday and wasn't feeling to hot....had a bit of bleeding....like when I blew my nose, my lips cracked, a hang nail, and a couple of other things...I notice that since I don't clot well anymore that happens and when it is more frequent and harder to stop I know it is getting worse....It also makes my meld score go up....So I went and had some blood drawn and it went up to 24 !!!

I found out on Friday before halloween weekend....(can you say parties??) so I scurried around to find the coordinators at Scripps and LLU. Most of the Dr's offices close early on Fridays....my folks are hard to get ahold of after about 1pm... But I wanted my new numbers reported to UNOS BEFORE the holiday weekend......It put me in the #1 spot in San Diego and up quite a few notches in LA....

Joe and I were headed to San Diego anyway for a Vet conference so I did throw a few extra things in my suitcase and we were on pins and needles much of the weekend.

BUT, I am still in one piece....as of today....

I will stay on the UNOS list at 24 for the next month. So, stay tuned! You will know as soon as I do.....

Update on my Heart - Ejection Fraction Rate

I went it for my 3 month appointment with Dr Mendler and we had a lot to talk about. I had a lot of testing done in the last couple of months.

One thing we talked about was my heart. I told you that I had a DSE or dobutamine stress echocardiogram. I won't go into the test here but the results.

GOOD NEWS!!! My Heart is better than a year ago! My heart function that they look at *the ejection fraction rate* is as I understand it a way to rate how strong your heart muscle is as SQUEEZING the blood out when it is supposed to. Last year it was at 60% Lower part of normal….now it is at 70% the high end of normal….So that is great news….and will help me get through surgery…..

"A normal ejection fraction is between 55-70%. A year ago you were at the low end of normal, and now you are at the high end of normal." Says coordinator Kara......

This is from NURSE EXTRODINARE and one of my very best friends, Michelle....

"Very good. It can be the difference that makes all the difference.

Your heart has to overcome a complete overhaul of the pipes in your vascular system. The new liver does not talk with your heart and brain like a normal liver and so your body cannot tell your new liver to loosen up and let more blood through. Sooooo your heart has to just be able to PUSH to get the blood through...

..and now, your heart has more ABILITY to PUSH.. It's a VERY GOOD THING."


And here is the technical stuff ::::

What Exactly Is EF, Anyway?

You really have to follow this to understand what's going on with your heart. Come on, it ain't rocket science! Your heart circulates blood through 2 separate systems. The two chambers on top (atriums) are receiving stations for blood. The two lower chambers (ventricles) are pumping stations.
Your left ventricle forces oxygen-rich blood into your arteries, which carry it throughout your body. The blood returns to the right atrium, which passes it down to the right ventricle. The right ventricle pumps this blood to the lungs, where it picks up oxygen. Oxygen-rich blood then returns to the left atrium, which dumps it into the left ventricle, and the cycle repeats. Valves between the chambers prevent "backwash."

When the left ventricle contracts, forcing blood out into the body, it's called "ejection" since it is "ejecting" the blood out into your arteries. Since the big pumper on the lower left is the one that pushes blood throughout your body, that is where they usually measure heart function - the left ventricle.
That's the "ejection" part. The "fraction" part is because that pumping chamber (the left ventricle) never quite manages to pump out all the blood inside it - there's always a little bit left behind that lies around waiting for the next contraction. The amount your left ventricle does pump out per beat is called the "ejection fraction". It's X% (the amount pumped out) of the total amount of blood in the ventricle per heart beat.

Gimme a Number!

If your heart pumps out 55% or more of the blood in your left ventricle on each beat, you have good heart function. When it falls below 55% on each beat, you're slipping. That means your heart muscle is too weak to force as much blood out on each contraction as it should.

The ejection fraction is the amount of blood pumped out with each heart beat and is a measure of the heart's overall capacity and function. A normal ejection fraction is between 55 and 70%. Damage to heart from heart attack, heart muscle disease, or heart valve problems can contribute to a below-normal ejection fraction.

Monday, October 27, 2008

Wait, wait and wait some more....

Sooooooooo VIVA LAS VEGAS !!!!!



















Sooooooooooo, of we went to Las Vegas for an overnight to meet with my brother and his beautiful soon to be wife. They had flown in for the weekend from Montana with a friend and since we are about a 2 1/2 hour drive away we drove out to meet them and have some fun!

Vegas is having awesome deals for obvious reasons and the Venetian sent me an e-mail deal for a suite for $119. including $50 in casino money which we brought home, $50 in drinks and 4 passes to their private club. Pretty sweet deal... for a suite....

Anyway we went to a dirty hypnotist show that was pretty good. Had a really nice lunch in the Venetian Courtyard at one of my favorite restaurants there, and generally caught up and had a great time.

I really wanted to see him as by the time we get the call for transplant I could easily be in surgery before he gets on a last minute plane out of Montana....

I will post photos of us when Kelly sends them tomorrow.....

It really was nice....so I wanted to post this too.... 3 flat screens, huge marble bathtub and remote control drapes....gotta love Vegas....


Venetian Rialto Suite


Beauty and grace embrace you at The Venetian, a masterpiece of exquisite luxury and impeccable service. The 36-story Venetian hotel tower sets the standard for suites and upscale amenities.

  • Approximately 1100 square feet
  • 130 square foot Bathroom
  • Double door entrance with all Italian marble foyer
  • Two plush queen-sized pillow-top beds
  • Egyptian cotton sheets and a 400 count wool throw
  • One 42” flat-screen plasma HDTV in the Bedroom
  • One 32” flat-screen LCD HDTV in the Living Room
  • 17” LCD HDTV in the bathroom
  • Roman tub with separate glass-enclosed shower
  • Adjacent water closet with telephone
  • Double sink vanity
  • Bath amenities by Agraria San Francisco™
  • Comfortable robes and oversized bath sheets
  • Sunken Living Room
  • Spacious walk-in closet
  • Separate Living Room
  • Dining table with seating for three
  • L-Shaped full-sized sofa-sleeper (based on availability)
  • Oversized coffee table and ottoman
  • Private work area with:
    - Dual-line telephone
    - Wireless high-speed internet access
    - Personal fax / printer / copier
  • DVD player
  • CD player / alarm clock
  • Remote-controlled Roman shades and curtains
  • Fully-stocked refreshment center
  • In-suite safe

Viva Las Vegas....

Sunday, October 26, 2008

All the reasons you might need a liver transplant


I thought you all might find this interesting...............................



Reasons for Liver Transplants

Liver Diagnosis CategoriesLiver Diagnoses
NON-CHOLESTATIC CIRRHOSIS
Laennec's Cirrhosis (Alcoholic)
Laennec's Cirrhosis and Postnecrotic Cirrhosis
Cirrhosis: Postnecrotic--Type C
Cirrhosis: Cryptogenic--Idiopathic
Cirrhosis: Postnecrotic--Autoimmune-Lupoi
Cirrhosis: Postnecrotic--Type B-Hbsag+
Cirrhosis: Postnecrotic--Type Non A Non B
Cirrhosis: Postnecrotic--Type B and C
Cirrhosis: Postnecrotic--Other Specify
Cirrhosis: Drug/Indust Exposure Other Specify
Cirrhosis: Postnecrotic--Type B and D
Cirrhosis: Postnecrotic--Type A
Cirrhosis: Postnecrotic--Type D
PNC CAH
CHOLESTATIC LIVER DISEASE/CIRRHOSIS
Primary Biliary Cirrhosis (PBC)
Sec Biliary Cirrhosis: Other Specify
Sec Biliary Cirrhosis: Caroli's Disease
Sec Biliary Cirrhosis: Choledochol Cyst
Choles Liver Disease: Other Specify
PSC: Other Specify
PSC: Ulcerative Colitis
PSC: No Bowel Disease
PSC: Crohn's Disease
BILIARY ATRESIA
Biliary Atresia: Other Specify
Biliary Atresia: Extrahepatic
Biliary Atresia: Alagille's Syndrome
Biliary Atresia: Hypoplasia
ACUTE HEPATIC NECROSIS
AHN: Etiology Unknown
AHN: Type B- Hbsag+
AHN: Drug Other Specify
AHN: Non-A Non-B
AHN: Type C
AHN: Type A
AHN: Other Specify
AHN: Type B and C
AHN: Type B and D
AHN: Type D
Hepatatis C: Chronic or Acute
Hepatitis B: Chronic or Acute
METABOLIC DISEASES
Metdis: Alpha-1-Antitrypsin Defic A-1-A
Metdis: Wilson's Disease
Metdis: Hemochromatosis-Hemosiderosis
Metdis: Other Specify
Metdis: Tyrosinemia
Metdis: Primary Oxalosis/Oxaluria-Hyper
Metdis: Glyc Stor Dis Type II (GSD-II)
Metdis: Glyc Stor Dis Type I (GSD-I)
Metdis: Hyperlipidemia-II-Homozygous Hy
MALIGNANT NEOPLASMS
PLM: Hepatoma--Hepatocellular Carcinoma
PLM: Hepatoma (HCC) and Cirrhosis
PLM: Cholangiocarcinoma (CH-CA)
PLM: Hepatoblastoma (HBL)
PLM: Hemangioendothelioma-Hemangiosarcoma
PLM: Other Specify
PLM: Fibrolamellar (FL-HC)
Bile Duct Cancer (Cholangioma-Biliary Tr)
Secondary Hepatic Malignancy Other Specify
OTHER
Other Specifiy
Cystic Fibrosis
Budd-Chiari Syndome
TPN/Hyperalimentation Ind Liver Disease
Neonatal Hepatitis Other Specify
Congenital Hepatic Fibrosis
Familial Cholestasis: Other Specify
Familial Cholestatis: Byler's Disease
Trauma Other Specify
Graft vs. Host Dis Sec to Non-Li Tx
Chronic or Acute
Benign Tumor: Polycystic Liver Disease
Benign Tumor: Other Specify
Benign Tumor: Hepatic Adenoma

It's Oprah's Fault !!!!


Ok, well really it is my technological addiction...... But she aided by making it one of her FAVORITE THINGS and giving everyone $50 off until the end of October..... (hurry, hurry if you want one!)

I have had my eyes on this since I first saw it but didn't want to part with the $$ but as my books started to pile up and I have been waiting in many Dr's offices with no end in sight...actually increasing in sight.... I decided to take the plunge....

and WHAT IS IT ???????? Why a KINDLE of course....................

It should be here next week and I have my wish list all ready of some books to kick me off with... You can check my *good reads* section for some that will be loaded soon.... I may even put up an amazon wish list........so you can see what I want to read ......

Here is the KINDLE link for those of you who want more info or want to click the BUY button... (enter OPRAHWINFREY for your $50 off)

Plus it will pack easier than all those magazines and books I lug around with me when I travel ....

And now with the news!


After much running around and having various poking, prodding, testing, phone calls, faxes, e-mails interspersed with waiting and some extreme bodily functions while preparing for said testing... or recovering from......................................

On Thursday afternoon I was OFFICIALLY LISTED with Scripps at a MELD score of 21.

AND, I am their highest B (blood type)

Which means....all things staying the same..(which they don't) If a B liver becomes available today and it FITS....extremely important...It's MINE!!!

Now, as I have explained before THE LIST is a constantly changing thing....They don't check you off in a 1,2,3, fashion. But it does mean that hopefully soon they will be calling me to tell me it is my turn...........

I am also still listed at Loma Linda but they have many more folks who need their livers first in the LA, One Legacy area than in San Diego.

I have to thank my coordinators and Dr's ......all of them in helping me make this process very easy and quick. They all are great, wonderful and efficiant in thier jobs and in making this happen.

So, that is some of what I have been up to these last 3 weeks......

I have BIG NEWS


But THIS is way more important.......................................... Click Here

And don't forget the tissues...............................

Sunday, October 19, 2008

Time to play Catch Up



Hello everyone....Ok, I am ready to play catch up....

It has actually been about 3 weeks since we talked. I think the thing that kind of stopped me in my tracks was that I had several friends who were in trouble medically. I just started getting to me a bit.

A few people in my support group have been going through some very rough times, including both the patients themselves and of course their spouses and families.

We had one person who had been in the hospital for about 5 months fighting for his life pass away. He got so close to being transplanted at one point they had found a liver for him, and as he was being wheeled into surgery his lung collapsed and they had to abort his transplant and put him on a ventilator which he was then on and off until he passed away. I saw him the day before he died. He was about my age.

There is David and his wife Sharon who I have posted about and you have the link to his blog in other posts that I worry about and pray for daily.

My friend Corina and her husband Frank. She had a stroke unexpectedly about 2 months ago and has been in and out of the ER and hospital as she tries to recover from that.

Sweet 6 year old Annika, who I only know from her blog, going in for her 3rd liver transplant last week.

Anyway, you get the idea...............It is of course them and not me who I am concerned about but I think I just felt I wanted to shut down and shut it all out for a bit.

Joe and I have been doing a bunch in the past few weeks though as well and I want to share those things with you too....

Let's start with the escape cruise to Cabo shall we???????