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........

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 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
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
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: Other Specify
Biliary Atresia: Extrahepatic
Biliary Atresia: Alagille's Syndrome
Biliary Atresia: Hypoplasia
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
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
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 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 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......


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???????

Friday, October 17, 2008

I apologize

I know I haven't posted in awhile...I think everyday ......... I should post on the blog..... I pull it up, check to see how, Aimee, David, Annika, Bobby, Kim, Corina, all my fellow blogger friends and support group friends are doing...... Stare at the page....and shut it down without writing a word.

There is a lot going on.....I guess I am feeling a bit blue and depressed.... The economy is scaring the shit out of me lately....amongst other things...

I am not going to write any more right now but will soon...............................................

Thursday, October 9, 2008

My friend David...from Loma Linda...

David is a friend of mine. Part of our support group at LLU.. He and his family need prayers sent.... Here is what is going on with him right now...

October 7

Once again, this is a hard one to write. David is VERY ill. He has a fungal infection in his abdomen. The doctors have gone into surgery five times to try to rinse away the infection. After the fifth attempt this afternoon, we were told that there has been little change since last week's attempt. David is now on a ventilator to improve his attempts to breathe. There is an infection in the area surrounding his lungs, and his breathing has become labored. He is also still dealing with the infection in his bowel.

We are still praying that David's body will respond and begin a turn around. Three days ago, one of the doctors said that they have treated patients like David and been successful. Your support and hope are greatly appreciated. Thank you, again, to all of you who have continued to give blood. He has had regular transfusions over the last two weeks. I have every card sent to him so that David may enjoy all of your positive thoughts.

Thank you for caring. Sharon

Annika's new (est) Liver ! The 3rd one goes in.

I will post more about me later but for the last 24 hours I along with many, many others have been watching and praying for Dear, sweet, Annika. A 6 year old who was in need of her 3rd liver transplant which she got last night. She had a very tough surgery and isn't out of the woods yet but is out of surgery and fighting... here is her story..........................

Falling Down is also a Gift

If that doesn't work as a link go down to my favorite blogs and click on the link there.....

Sunday, October 5, 2008

Elation to Cabo San Lucas

Well, that was fun.....making the slide show, I mean!

Chutes and Ladders.....

Bring back memories?????

Or maybe a current state of affairs?????

Just's all part of life.............

The Listing Committee - Scripps

The Organ Transplant Waiting List

In the United States, more than 84,000 men, women and children are waiting for organ transplants. Their struggle to live depends on a complex and technologically-advanced organ allocation system that links patients with organs donated by strangers.

Subjected to intense scrutiny by the federal government, the public, and the medical profession, no other aspect of modern medicine is more analyzed and debated. Such scrutiny is essential. Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

In 1984, the National Organ Transplant Act established the Organ Procurement and Transplant Network (OPTN), a national organ sharing system to guarantee, among other things, fairness in the allocation of organs for transplant. Since 1984, the nonprofit United Network for Organ Sharing (UNOS) located in Richmond, Virginia, has operated the OPTN, under a contract with the Division of Transplantation in the Department of Health and Human Services. UNOS maintains a central computer network containing the names of all patients waiting for kidney, heart, liver, lung, intestine, pancreas and multiple-organ transplants; the UNOS "Organ Center" is staffed 24 hours a day to respond to requests to list patients, change status of patients, and help coordinate the placement of organs.

Organ transplantation is built upon altruism and public trust. If anything shakes that trust, then everyone loses.

Transplant Journey

Transplant Journey Website
- stories of donation and transplant

Above I posted some photo's and interesting links for you. The first phot is of the Call Center at UNOS. I have found some interesting things to share with you this weekend as we head into fall but first let me share with you about my status for being listed at Scripps.

They did present *me* before the transplant committee last Monday and they came back with a YES, we will list you at Scripps....(YIPEE!) conditional upon completing and clearing a couple more tests...

They would like a colonoscopy... I am excited about THAT one.... but at this point you might as well look there as well. LOL

They also would like to check the status of my heart again with a 2D Echo.... no big deal as long as I pass. That test last year lead to a stress test and an angiogram to which I had to spend the night in the hospital in order to have a transfusion of platelets and plasma before undergoing the heart catheterization.

My Dr's at Loma Linda are also going to be ordering at least a stress test in November so we are working on trying to co-ordinate what everyone needs so I only have to do it once.

Sounds easy until you get the insurance company involved and then it comes down to who needs to place the order for which tests so they know who to pay, etc, etc.

So, I spent much of the last week on the phone, sending e-mails, faxes and heading to the hospital for (which is why I haven't posted yet).

I want to say to fellow patients and caregivers...MAKE SURE THAT YOU ARE PROACTIVE in making sure that the tests you need done get done in a timely manner. What I mean by this is ask if there are other options for completing the tests or lab work that might get them done sooner.

At Scripps, for example, they are the transplant center ordering the procedures but they aren't the closest to me geographically and they were also backed up to December on the colonoscopy. Now, this is something that doesn't HAVE to be done THERE... I am the one who wants it sooner so I have to be the one to MAKE it happen sooner. It isn't' a problem to find out what you need to do, you just need to take control of the things YOU CAN in your health care. Think about what needs to be done and why, Ask questions, Make phone calls.... In this case for example I have an order from Scripps scheduling both procedures, an order and referrals from my primary care doctor so I can have it done other places and My Dr's at Loma Linda are also looking at it and working on their schedules as well as calls to my insurance company for prior approval for the various places.... That way I can choose what is the faster, better choice for me so I don't have to wait 3 months for one test....

What I am saying open your mind, look at the options and make something happen.. Don't just wait around...It is your health. Your primary concern is YOU...They have lots of patients... All my health care providers have been very appreciative that I help in the process. Don't worry that you are being a are not...and even if you what! Just remember to thank everyone that helps you and ask will be surprised at the help you can get with a pretty please, a smile and a thank you!

So, this is GREAT NEWS! I am NOT on the list officially in my name is not in the hat yet but it is ready to be thrown in as soon as I jump through the proper hoops.... Kind of reminding me of the kids board game *CHUTES AND LADDERS*. I will let you know when it is official and we are packing bags.

Regarding packing bags.......There isn't too much that the patient needs to bring to the hospital for the first couple of days as they will be in surgery, recovery and ICU etc for awhile. The people who REALLY need to pack are the people that will be waiting for you and the further away from home you are the more you should think about this.

Immediate Family and Friends who are most likely to be in the waiting room a lot will need a few things. Comfortable clothing, a few changes, a blanket, medications, toiletries, laptop, cell phone, chargers, magazines, crosswords, etc... Lists of phone #'s. any folders of things that have been prepared, places to stay, copies of advance directives....

Ok, well I am off to have a late Sunday breakfast with Joe and Joey....more to share about our get away cruise, I promise!