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........

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


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


Monday, November 24, 2008


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 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 the blog... they are going to get my liver. I should be in surgery by noon...


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!


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

"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


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”


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

Martin Anthony Sinatra Education Seminar Auditorium


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


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 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 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 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.