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........

Thursday, September 25, 2008

Anchors Aweigh..........!!!!!


Okay, this is the secret............We are off this morning and be back on Monday......The day they are taking *me* before the committee in San Diego...Then the ankle bracelet goes back on....

I will take lots of pics.... BON VOYAGE !!!!!!

Monday, September 22, 2008

News Alert.....


I have a secret to leak.......tomorrow.........stay tuned!

Saturday, September 20, 2008

donorcycle: Organ Donor Awareness Month

donorcycle: Organ Donor Awareness Month

Here is another post from donorcycle on donation.

donorcycle: The Real 24

This afternoon I recieved an e-mail from a fellow blogger, a recent kidney recipient in Austrailia. How I LOVE getting mail from my readers. Makes my DAY! His blog is The Ballad of Bill the Kidney Funny, maybe Bill the Kidney is friends with BillyBob the Liver. tee hee... (see the blog list)... This is what John had to say about the Real Life...............

Nancy is an American cruise fan who is working towards a liver transplant. Her blog is very out-there and well worth reading.

Anyway, one thing leads to another on the web and next I found a Blog called Donor Cycle written by a Transplant Coordinator. Both very good reads.

I am going to add them to the blog list below and wanted to post a couple of articles written by TC.

The first is an article that tells a story of one day in the life of:.... as he goes through a process of the day of an organ donation. A liver...

donorcycle: The Real 24

Monday, September 15, 2008

Today began with ................................




WAFFLES,WAFFLES,WAFFLES

Joe found a great place in La Jolla this morning for us to have our breakfast....Can you guess what we had???? :-) It was a great coffee shop called Harry's.

What happened was this... I was woke up and ran my records over this morning first thing only to find out we were going to have to wait for our appt with the surgeon as he was a bit busy performing a liver transplant and would be tied up for awhile.....

So we re-adjusted our day and went to this great place for breakfast. This is an old fashioned coffee house that has been in La Jolla since 1960. My excitement came when I saw the Naugahyde booths and milkshake machines.... next was the fact that they served REAL WAFFLES !!! Not those belgian puffy kind....(those are NOT waffles...I don't know what they are but they are not waffles....) I like regular old fashioned waffles a little crispy so the real butter (room temp, not cold) melts perfectly in all the little crevices while you drizzle real, warm maple syrup on them...

Served with a couple of eggs over medium, a couple of pieces of yummy bacon and a big glass of cold milk......

YUMMO!!!! Not exactly on my low sodium diet, or any other diet for that matter....but it isn't often you find real waffles in a coffee shop like that by the beach.....

They were worth it!

Then we spent some time exploring La Jolla a bit and went back to the hospital and they were ready for us with an afternoon full of appointments and a surgeon who was wonderful and spent lots of time explaining things to us even if he did yawn a couple of times.....

All in all we are very impressed with everyone on the transplant team at Scripps and they will be taking my file to the transplant board for approval for listing soon...

We are back home tonight to happy puppies and a full week, although we are both pretty tired.

Sunday, September 14, 2008

INSTEAD.....I went a picked up my last year in book form and we are .........


Hand carrying it to the Transplant Coordinators tomorrow morning...Tom and Kara..... before we have a day full of meetings....
























Now don't get me wrong...we are very grateful to them for making this happen all so fast and in such an expedient manner...Joe had ONE day off in the next 6 weeks that he could accompany me to San Diego and they arranged 4 appointments for us in that one day.....

The Surgeon, the social worker, the financial coordinator and the transplant coordinators....

We are all hoping to get all the I's dotted and T's crossed so that they can take my case before the committee to get me on the list here officially.... It should be a big day and I will have a full report for you...

We came down to San Diego this afternoon and looked at a few extended stay hotels to try and figure out post transplant places for me to stay...

They want you OUT of the hospital ASAP which at first I wasn't to keen on until I realized the reason was because they don't want you to get ANY infections and with your immune system basically non existent .....well....you get the drift.

CAN YOU BELIEVE THE BOOK THAT IS MY MED RECORDS FOR THE YEAR! Size of a very large phone book with yellow pages and all......

That is enough story telling for tonight.... I have to get up early.....

nite, nite........................................................

What we should be doing........





Joe and should have set sail yesterday on the Celebrity Mercury for my conpany's annual conference at sea.........





















We had reserved a beautiful SKY SUITE - CONCIERGE CLASS with a beautiful balcony........ All of my friends at the company are onboard along with all the various cruise lines that host parties and events for us. Believe it or not we also work very hard at conference and learn tons as to what is new and upcoming withing the changing industry......

That is what we should be doing this week...............................................

Scripps San Diego Transplant Class



On Wednesday I drove down to San Diego..... I left home at 10:30am for a 2 hour class and got home at 8pm...I only stopped for gas/potty break twice and a 30 minute shopping break at the pottery barn outlet. It was a very long day...It's a 5 hour round trip.

I enjoy the time alone....I always have liked to drive and when I am alone I have lots of time to think, sing to the radio, talk a bit on the phone.......etc.

The class was very good....very different than the class I took at LLU. I find the differences interesting and an opportunity to learn more from different people who are very knowledgeable.

There were 2 classrooms being used at the same time next to each other. One for Kidney Transplants and one for Liver Transplants. During that time the transplant coordinators spoke to us about what transplant entails regarding the organ that you need replacing...The why's, what, when, how, etc ....etc. Very informative.

Some differences between LLU and Scripps. I am not sharing opinions here just facts...

LLU only does whole liver transplants from deceased donors as do the majority of transplant centers.

Scripps does whole liver transplant, and also will split livers from deceased donors. I.E. If a liver were to become available that could be used by a child and and adult....(same blood type, etc) They can use, say, 20% for the child and 80% in the adult. Both grow to full functioning organ within a year and save 2 lives. It can be a longer and more difficult time of recovery for both as the liver has been severed and also has to heal... They do this rarely as the opportunity doesn't always present itself but that is sometimes an option.

They also do a small percentage of living donor transplants.. In kidneys this is common but in liver, not so much.....I am not going to go into detail as I am not very educated about this... I do know that it is a very serious surgery and recovery for BOTH the donor and the recipient. It can be even harder for the donor during recovery. Both need full time caregivers and it goes on and on....Not something I am interested in doing to a loved one even if I did qualify.....

Another thing that is different is that the anti rejection drugs used post transplant and forever...
Scripps tries to use a steroid free approach which helps avoid a lot of the complications that can arise just from the steroids...(I will talk about that later when we get to a *medication talk*)

After our individual classes they opened the dividers between the rooms and a couple of other speakers talked to all of us as these things would effect all of us.

The Social Worker on the support we would need, housing issues, follow up appointments, support group, compliance to appointments, medication, etc. Insurance....

The Pharmacist talked about all the different types of drugs, what they were, how they were used and combined, side effects....THE SIDE EFFECTS!!!!! If anything scares me that is the biggie. It is one thing to think that your organ that controls so much of how your body operates is not functioning well......another to face the traumatic surgery......another to deal emotionally with having your body cut wide open and have another persons organ placed inside your body,.....another to deal with the months of physical recovery and the fact that you will most likely never have the health you once had......BUT...for me the thought of being place on these drugs which YOU HAVE TO TAKE FOREVER......AS LONG AS YOU WOULD LIKE TO KEEP YOUR NEW PRECIOUS ORGAN..... which is a good idea.....but all the things that these drugs that will save your new liver will also CAUSE to happen to you..... (again...when we have the drug talk....) But....of course it is manageable BUT that doesn't mean it doesn't scare me or I have to like it.................................................................................

All in all it was a very informative and well taught class! Kudo's to Scripps and the Transplant Team there.....They did a great job.

Tuesday, September 9, 2008

The wonderful people who are waiting for a liver at Loma Linda


Today was *support group Tuesday*.

Loma Linda University Medical Center has a wonderful and very active Transplant Center with many patients. Not only liver but kidney, kidney-pancreas, heart, bone marrow and stem cell research and transplant.

In our support group we meet strictly with liver or liver/kidney patients and there are quite a lot of us undergoing treatment in various stages, all very serious if not life threatening.

Today was a difficult day. Almost EVERYONE that was there today is dealing with very difficult symptoms of liver disease.

Encephalopathy, confusion,
Edema,
Acsites,
Very Bloody Noses...(wake up with blood all over pillow)
Esophageal Varices
passing out,
collapsing,
insomnia, no sleep in 3 days,
total fatigue, can't stay awake
change in sleep patterns, sleep all day, awake all night,
Leg cramps, hand cramps with no relief,
severe itching,
stroke,
heart problems,
pulmonary problems,
diabetes,
beginning kidney failure
dialysis,
bruises,
wounds,
weight gain,
weight loss,
pain,
relationship problems,
depression,
fear,
and liver cancer

I am serious! Every one of these was a problem someone was having today!

Lucky for us we also have some incredibly generous people who have been through all the symptoms,and fought through them to transplant, recover and a renewed life.................

THANK GOD FOR THEM! They give the rest of us so much hope. If we didn't have them to look at, watch them breathe, walk, share and live normal lives......Well we owe them a lot.

Today our post transplant volunteers who were in the meeting were post transplant 4, 9, 10 and 13 years..... They give up their day to show up for US. All this time past their transplants when I am sure they have better things to do and they come and give freely of their time.

They don't need us....

They do it because we need THEM! We need to look at the living hope and know that one day that could be us.

So, I want you to know that we appreciate you spending your time with us!!!!

We also appreciate the caregivers out there who are dealing with our issues and didn't sign up for it.....We don't say thank you enough...sooooooooooooo THANK YOU.

There are 2 others I would like to bring to attention for prayers...

Tim, who has been in the hospital for 4 months waiting for a liver. He is VERY ill and needs a liver yesterday.

David who received his new liver 2 weeks ago and is struggling. His liver is functioning well but his body is having a difficult time recovering. His new blog his family started is here.

I am not trying to be depressing just letting you know that across the country there are 19,000 people waiting for a liver. Most won't get one in time to save them and it is not a comfortable way to live or ...........

Please, if you so desire and haven't yet done it please go to donate life and register as an organ donor and encourage your circle of friends.. Then talk to your family to make sure they know what your wishes are. Right now they have final say. Donate Life America YOU NEED TO GO THERE EVEN IF YOU HAVE A PINK DOT ON YOUR LICENSE!

Read this below from their website:

Right now nearly 20,000 Californians wait for an organ transplant. That's 21 percent of the 94,000 people waiting across our country. Tragically, one third of them will die - waiting.

Until now, no Registry has existed for those of you who wished to give consent to be an organ and/or tissue donor. Historically, while signing a donor card and placing the pink dot on your license served as an important symbol of your intent, it did not place you on any list or Registry.

Now, Donate Life California allows you to express your commitment to becoming an organ, eye and tissue donor. The Registry guarantees your plans will be carried out when you die.

Since July 1st of 2006, individuals who renew or apply for a driver's license or ID with the DMV, now have the opportunity to also register their decision to be a donor in the Donate Life California Registry, and the pink "DONOR" dot symbol is pre-printed on the applicant's driver license or ID card.

You have the power to donate life - sign up today to become an organ and tissue donor. Your generosity can save up to eight lives through organ donation and enhance another 50 through tissue donation.


Tomorrow I am off to San Diego to the mandatory transplant class at Scripps in my effort to get a new liver sooner than later....

Our Day with Joey in Newport





For those more interested in what we do when I try and forget I am sick....Which is often.....

I am sure a lot of you who have ever had serious illness's can relate to.... How do you balance your *real* life and enjoy as much of it as possible? How do you go about the day to day business of life, family, friends, jobs, etc?

I find it actually kind of funny. When I first found out how sick I was and my Dr's so *nicely* informed me that I might not make it out of the hospital alive and wasn't sure I would make it a few months....until now... Well, it kind of changes your perspective. Especially when you are supposed to be in the middle of your life and not near what you thought would be the end of it.

I decided to go on the 2 cruises I had booked at the end of the month I got out of the hospital....I took it slow but Joe and I decided it was time we spent some quiet time together, just the two of us, along with the rest of my company whose conference it was. So what if we got some Caribbean Sun and fresh air along the way!!!! Look here for a post on that. And here for a couple of pictures. If you click on the photos, you can see how yellow *jaundiced* I was.

Anyway, it is a year later and here are some photo's of our family at a doggy friendly shopping center where we took our bulldog and then at the Golden Truffle. We went to his apartment, viewed the lone jar of mayo in the fridge and one can of cream of mushroom soup in the cupboard (????) and went to Trader Joe's for some shopping, then went out to one of our favorite restaurants *The Golden Truffle*.

I worked for the Golden Truffle and Alan Greeley, Chef-Owner way back in the day when I was fresh out of Culinary School. (Didn't know THAT did you? lol) Before Joey was born. I will save my chef tales for another day.... But here is the story of The Golden Truffle and a couple of pics of dinner.

We had a beautiful 5 course meal that was specially prepared for us and were greeting and treated as VIP's as Alan had left instructions with his staff before he left that evening for a catering event. The tall thing is their *soup and sandwich* appetizer of a lovely vichyssoise with a zesty seafood, crunchy bite on top... I didn't take photos of the beautiful lobster appetizer, grilled scallop (which was HUGE) or the lovely little desert tray.... I should have...when will I learn?

Chef Owned, The Golden Truffle began as a caterer. The restaurant seems in appearance and atmosphere to be Bistro-esque, but those who have experienced the food realize that the Chef has taken a road-less traveled.

The Chef’s myriad influences, with France, Spain, the Caribbean and Asia leading the way, conspire to produce dishes that manage to combine simplicity and comfort with dazzling, complex flavors and colorful presentation.

The Golden Truffle achieves that perennial ambition of most restaurants and satisfies customers of all tastes, serving up adventures cuisine alongside nostalgic homage’s to home cooking.

The Golden Truffle is a favorite of restaurateurs, wine-makers and chefs. The abundant and interesting wine list offers many intriguing and unusual fairly priced wines.

The kitchen’s attention to texture allows each bite its own magical quality. The racy chef-proprietor has a bold approach to food so remarkable that all our senses simply merge with the spirit of the moment; a kind of stream of consciousness cooking that is like opening a storybook with the imagination of a child.

Here is a link to their menu and web-site. The Golden Truffle We had a very nice day together. It is so good to have our son so happy and moving on into adulthood. I hope I am around to see what his future holds.

All in all, a great day. Today is Tuesday and I am headed down to my LLU support group which I missed last week due to our appt's at Scripps so I am anxious to hear all the latest from my friends there. I have to get ready so I will leave you now. Tomorrow I am headed back to San Diego and Scripps for a mandatory transplant class which I am also looking forward to.

Sunday, September 7, 2008

Heavy teens run risk of severe liver damage


Have you seen this????? Here is a link to the full article.....Very Scary!

TRENTON, N.J. - In a new and disturbing twist on the obesity epidemic, some overweight teenagers have severe liver damage caused by too much body fat, and a handful have needed liver transplants.

Many more may need a new liver by their 30s or 40s, say experts warning that pediatricians need to be more vigilant. The condition, which can lead to cirrhosis and liver failure or liver cancer, is being seen in kids in the United States, Europe, Australia and even some developing countries, according to a surge of recent medical studies and doctors interviewed by The Associated Press.

Saturday, September 6, 2008

Getting out and about....our day at the beach...

Today we are off to the beach to have a day visiting with Joey. We are taking the dogs for some social time in public at Joey's request. That always make things interesting. Our pug and our white bulldog always get quite a bit of attention. HAHA, funny, he is so excited we are coming down he just called to see if we could leave earlier than noon...It's going to be a fun day.

I need to go give the puppies a bath and will try and bring home some pictures with me or maybe take a short video and practice posting that to the blog....

Stay tuned.

Nancy

Friday, September 5, 2008

THANK YOU to the Fair Foundation!

Thank you to the FAIR Foundation for all that you do to help in promoting awareness and change for the issues that we face on the allocation of research funds and the disease that we face along with many others.....

And thank you for the awesome mention and link to THE REAL LIFE BLOG! in your recent newsletter. I really appreciate the promotion of my efforts to share my experience as well as the awareness and support of others facing Liver Disease.

Here is a link to the most recent newsletter: Please, please, read the newsletter and consider helping in any way you can.

Thank you again,
Nancy

photos of fun symptoms of cirrhosis





I thought I would post some photos of things I found on the web to visually help you understand some of the MOST COMMON symptoms that we liver patients suffer. None of these are of me or anyone I personally know but they sure could be including the upside down pug peeing on the tree! LOL ( I really need to post some pictures of my pug and bulldog!) The photo of Salt is a description of what we CAN"T have or we end up looking like the people swollen with edema (legs) or ascites (abdomen).














The person with Jaundice really does look like the color I used to have and to some extent still do. People think I am *tan* although my eyes are still very yellow. At least I don't scare people now!











These are all very real. And common. And as a matter of fact some are mild, considering how bad it can really get. I have had variations of all these and have many friends who have varying degrees of them.

So, this is the deal. When we say we are tired.... we ARE. IT IS A SYMPTOM. It isn't like when YOU are tired...not a bit. We can't help it....It just is. Don't tell us to get up earlier, to go to bed earlier, to get some exercise, to eat better. Although those are all good things to do...Those are not our problems and they aren't going to fix the SYMPTOMS.... They are REAL symptoms of a very REAL disease. OUR LIVERS AREN'T WORKING CORRECTLY....

When we say that our feet are swollen....or we need to watch our salt. It doesn't mean we need to take off our shoes, and they will be better the next day... When we gain 5 # in a week......we are worried that our bellies will look like the one above soon and the Dr's will be sticking needles in us to drain liters of potentially dangerous fluid off. over and over again....

When we say we are cold...we don't need a sweater...(well, that could help!) But we are FREEZING not because it is cold (it could be 100* outside) but because our internal thermometers are broken...

When we are constipated...(sorry, no photo's of that one!) We are afraid if we can't go to the bathroom our toxins will build up to a point as to cause confusion, delirium, and even a coma because our ammonia levels get to high. This can also make us very, very sick...as in vomiting from to many toxins in our body. (Encephalopathy).. It doesn't mean we need to eat more fiber. it means we need to take our LACTALOSE!

When we need to PEE, get out of the damn way! WE DO AND NOW!

When we are having trouble swallowing we could be having our veins inside our esophagus be filling up with blood so much that they pop open which would be a life threatening emergency as in BLEEDING TO DEATH...It happens...ask any ER nurse.

When we say we can't eat or aren't hungry. It is literally very hard to even get a bite down...Give us *ensure* or some kind of high calorie, high fat food. ice cream, anything...just get some nutrients and calories in us...

CRAMPS, another of my favorites...... We get these very interesting, sudden, crippling cramps! The first time it happened to me I didn't know WHAT was going on because it seemed so unrelated. The mostly happen in our extremities, shins, calves, feet, hands, fingers and lower arms. They happen swiftly, without warning, very intense and in weird places. In muscles like your shin or on the top of your food. When stirring a pot or writing your hand suddenly becomes twisted and deformed and it HURTS LIKE HELL. They aren't like the cramps you have had so don't even try and relate....(take quinine tablets or drink tonic water. I keep a bottle around and chug it.. warm heat helps too)

The reason I thought I would post this is for a couple of reasons...

One is to let others suffering from these symptoms to know that they are common and YES, they are real. They happen to all of us.. It is helpful to know that they are related to your disease...(that is what a support group is for!)

The other is for friends, family and caregivers to know that they exist, are very real, and that you REALLY can't relate. As much as you think you do. You don't. You can't unless you too have had liver disease. (that is what a caregivers support group is for..)

We don't want to whine, complain, try to tell you how bad it is......We really don't want to.....But we do want you to know that they are real and just please be kind and gentle with us when we need a nap, need to put our feet up, need to take a hot bath, or need to get support and knowledge from online groups, face to face groups, read books, talk to other patients, etc. It helps us. Lord knows it has helped and continues to help me!

more fatigue and other symptoms of inivisible illnesses


You never know when it is going to hit you.

Fatigue, Extreme Tiredness....... It is an interesting thing. I haven't been overly tired. My energy level compared to what it used to be or what it should be if I wasn't sick is probably 6-7 out of 10 most days. But some times...you can't stay awake. I feel guilty about this. I don't want to feel guilty but I do.

Today for example I woke up after 8 hours of good sleep that most people would be more than happy to get..... I got up to start my day, as I was checking my e-mail I started to drift off. Now, I have tried to explain this before but it is difficult unless you suffer from the same kind of tiredness.... This is...THAT'S IT. I AM GOING TO GO TO SLEEP NOW!!!!! tiredness. So, I went back to bed went fast asleep and slept another 3 hours. I am still a little on the groggy side hours later. It is going to be one of those days...

The only thing that keeps me from really feeling guilty is because of my involvement in support groups and meeting other people that all shake their heads up and down and smile when anyone mentions this I KNOW, it is my disease and not laziness or anything else. IT IS A SYMPTOM of liver disease.

I think I will talk more about symptoms next....How difficult it is to explain to caregivers and others around you what is going on with you......................................... I gotta pee first....

another side effect of the drugs we all must take...........................................

Wednesday, September 3, 2008

As we begin Year #2 in this Journey..........our new beginning at Scripps


I want to write a bit and tell you about our visit to Scripps Green Transplant Center and my feelings about going there.

First of all I want you to know that I was hesitant for a long time to pursue health care outside of Loma Linda with whom I have entrusted all my beliefs, hope, support and extraordinary medical care to.

On some level I felt a sort of waywardness about this. Like I was being unfaithful or something. Like a child venturing into an unknown world. I didn't want the people I trust to feel betrayed. This includes my Doctors, my transplant team, my wonderful friends in my support group and even you, my readers. Odd isn't it? I have spent the last year of my life following their lead and I have learned so very much.

Most of you know that I am also very pro-active in most everything and especially my own health right now. I want to know what ALL my options are. Get different opinions from EXPERIENCED, KNOWLEDGEABLE PEOPLE. Leaders in their field. I need to get a feeling that the general consensus among the experts is that I am doing the best thing for the condition that *I* am in. My body and my situation may be similar to lots of others that are suffering from End Stage Liver Disease but it is uniquely different that anyone elses also.

I have continually had/have an internal battle with Do I keep my God given liver as long as possible and be thankful for the health I do have and wait patiently OR do I do as my mother taught me and that is pursue the thought that *God helps those who help themselves?* and explore ALL my options.

As you can tell I finally chose the later. (Always listen to your mother!) And after discussions with my LLU Dr's, my transplant team, friends, family and extended family the consensus is that we/I should do whatever is necessary to do the best thing to keep me alive! That means getting a new liver, a GOOD liver at a great transplant center with a high level of long term success. And following my instincts.

Joe took the day off from his patients and came with me to meet Dr Hillebrand and some of his staff.

We were more than impressed with our visit. His staff is friendly, helpful, knowledable and respectful. So was he. We really liked Dr H. We spent about an hour together. He went over my medical history with me carefully and we spoke about all the steps that would be needed to be dual listed, how the transplant centers coordinated efforts to reduce duplication of tests and visits along with what would happen when the time for transplant came and follow up.

The next step after meeting him is to meet with the rest of the Transplant Team. The Surgeons, the social worker, and the coordinators which I can do with one more visit which we arranged to do on 9/15. After that my case will go before *the commitee* just like before to decide if I should be placed on thier list. There are more details on all of this early in my blog.

So, we are off to the races!

After my meeting on the 15th I will continue my regular care, Dr appointments, Labs and other testing at Loma Linda and we go back to waiting for the call.

Right now, I was informed that I may be the *highest B blood type* they have on the list. If not I am close. So, in reality by dual listing I will most likely have my transplant in San Diego as that is the way the #'s are in my favor.

One thing that I want to share with those of you who are suffering from any kind of disease or are the caretaker of someone who is....

#1. Find a really good or great Doctor that has experience, is well respected in his/her field, that will answer your questions and lay out all your options for you. YOU CAN FIND ONE.... They are out there.

I did spend 2-3 years running around in circles trying to get help from Dr's who didn't know what to do with me except pass me around. 2 weeks before I ended up in the hospital with a MELD of 37 and my Doctors saying I might not make it, I was in my *regular* Dr's office BEGGING for him to send me SOMEWHERE, ANYWHERE that I could get help! I looked like death warmed over, bright yellow, my body totally swollen all over, legs as big as tree trunks, feverish, I had been vomiting, was terribly constipated, lost 30# because I couldn't eat, crying for help, all kinds of nasty things, and he told me once again to get blood drawn, and come back in 3 weeks... I was almost dead in 3 weeks. I might not be waiting for a liver transplant if I had found a good Doctor earlier. (the only reason I ended up in Loma Linda was I told Joe I needed to go to the emergency room and to take me directly to LLU....)

SO FIND A GOOD DOCTOR....then listen to and trust them.

#2 Educate yourself. Learn. Find GOOD information about what your body is doing and what you can do to help yourself. Your Doctor can be good but they are also VERY BUSY. There is no way you will get all your information just from your Dr.

It is your responsibility to learn about your disease, your symptoms, what is *normal*, what to watch out for, and what the future holds. You can learn a lot from people who have the same thing. You can find them online and in support groups. I have learned invaluable information and gained alot of hope from my support groups.

#3 Write things down. Keep a health journal. If you can't, have a loved one keep track of things. Your weight, your drugs, your diet, blood pressure, appointments, attitude. Anything that is relative. Show it to your Dr. Write down your questions. Go to your Dr appt's prepared.

#4 Let your Dr's and medical staff know when something isn't right. Now that doesn't mean they need to know you stubbed your toe but if something is really a problem, DON'T WAIT UNTIL YOUR NEXT APPOINTMENT to let them know. Make a phone call and tell them. Let them decide if it is important.

#5. Be proactive. It's your life. You have people who love you and care about you. You need to care about you. Share with them, spend time with them and yourself. Enjoy life, especially the little things. You may not be able to do all the things you once did so enjoy OTHER things...
go outside, people watch, pet your dog or kitty, hug your kids, take up a new hobby, be nice to the people around you....

Those are my thoughts tonight as we start year 2 in this adventure...Gosh, I am ready to go through the next step of this but I am faithful that I am doing what I can and I do have patience even though it may not sound like it.

Good Night !!!! God Bless.......

Tuesday, September 2, 2008

Daffodil Days, again.......


I posted this before in April. I ran across it again and I thought I would pass it along to you who might not have seen it. This can apply to ANYTHING we want to do.

Enjoy--


The Daffodil Principle


Several times my daughter had telephoned to say, "Mother, you must come to see the daffodils before they are over."I wanted to go, but it was a two-hour drive from Laguna to Lake Arrowhead "I will come next Tuesday", I promised a little reluctantly on her third call.

Next Tuesday dawned cold and rainy. Still, I had promised, and reluctantly I drove there. When I finally walked into Carolyn's house I was welcomed by the joyful sounds of happy children. I delightedly hugged and greeted my grandchildren."Forget the daffodils, Carolyn! The road is invisible in these clouds and fog, and there is nothing in the world except you and these children that I want to see badly enough to drive another inch!"My daughter smiled calmly and said, "We drive in this all the time, Mother.""Well, you won't get me back on the road until it clears, and then I'm heading for home!" I assured her."But first we're going to see the daffodils. It's just a few blocks," Carolyn said. "I'll drive. I'm used to this.""Carolyn," I said sternly, "Please turn around.""It's all right, Mother, I promise. You will never forgive yourself if you miss this experience."

After about twenty minutes, we turned onto a small gravel road. and I saw a small building. On the far side of the building, I saw a hand lettered sign with an arrow that read, " Daffodil Garden ."

We got out of the car, each took a child's hand, and I followed Carolyn down the path. Then, as we turned a corner, I looked up and gasped. Before me lay the most glorious sight.It looked as though someone had taken a great vat of gold and poured it over the mountain and its surrounding slopes. The flowers were planted in majestic, swirling patterns, great ribbons and swaths of deep orange, creamy white, lemon yellow, salmon pink, and saffron and butter yellow. Each different colored variety was planted in large groups so that it swirled and flowed like its own river with its own unique hue. There were five acres of flowers."Who did this?" I asked Carolyn. "Just one woman," Carolyn answered."She lives on the property. That's her home."

Carolyn pointed to a well-kept A-frame house, small and modestly sitting in the midst of all that glory. We walked up to the house. On the patio, we saw a poster. "Answers to the Questions I Know You Are Asking", was the headline. The first answer was a simple one. "50,000 bulbs," it read. The second answer was, "One at a time, by one woman. Two hands, two feet, and one brain." The third answer was, "Began in 1958."

For me, that moment was a life-changing experience. I thought of this woman whom I had never met, who, more than forty years before, had begun, one bulb at a time, to bring her vision of beauty and joy to an obscure mountaintop. Planting one bulb at a time, year after year, this unknown woman had forever changed the world in which she lived. One day at a time, she had created something of extraordinary magnificence, beauty, and inspiration.

The principle her daffodil garden taught is one of the greatest principles of celebration.That is, learning to move toward our goals and desires one step at a time--often just one baby-step at time--and learning to love the doing, learning to use the accumulation of time. When we multiply tiny pieces of time with small increments of daily effort, we too will find we can accomplish magnificent things.

We can change the world .

"It makes me sad in a way," I admitted to Carolyn. "What might I have accomplished if I had thought of a wonderful goal thirty-five or forty years ago and had worked away at it 'one bulb at a time' through all those years? Just think what I might have been able to achieve!"

My daughter summed up the message of the day in her usual direct way. "Start tomorrow," she said.She was right. It's so pointless to think of the lost hours of yesterdays. The way to make learning a lesson of celebration instead of a cause for regret is to only ask, "How can I put this to use today?"

Use the Daffodil Principle.

Stop waiting....
Until your car or home is paid off
Until you get a new car or home
Until your kids leave the house
Until you go back to school
Until you finish school
Until you clean the house
Until you organize the garage
Until you clean off your desk
Until you lose 10 lbs.
Until you gain 10 lbs.
Until you get married
Until you get a divorce
Until you have kids
Until the kids go to school
Until you retire
Until summer
Until spring
Until winter
Until fall
Until you get a new liver (I had to add that)
Until you die...
There is no better time than right now to be happy.
Happiness is a journey, not a destination.
So work like you don't need money.
Love like you've never been hurt, and, Dance like no one's watching.
Wishing you a beautiful, daffodil day!

Don't be afraid that your life will end, be afraid that it will never begin!!!!!

A Liver Transplant Patient Guide published by USC (University of Southern California)



This is a Patients Guide to Liver Transplant by USC available on their website. Here is the link.

Joe found this in looking for anatomy on what exactly happens surgically during a liver transplant. I had asked him to help me find out what exactly the surgery involves and this is the best information we have found so far. An amazing resource!

Monday, September 1, 2008

My First Appointment with Scripps and Dr Hillebrand Tomorrow


As you can all tell by my recent posts, I have really been focusing more and getting my Transplant sooner than later if possible. In all the things I have read, patients both pre and post transplant, My medical team at Loma Linda and the wonderful transplant coordinators, Judith at LLU and Thomas at Scripps along with Dr Darling and Joe of course, we are ready to start our next step of my journey by having our first of many appointments at Scripps Green as I attempt to be listed to be transplanted there in addition to Loma Linda.

I want to talk to you about what I am doing here..... You have the RIGHT to be what they call *DUAL LISTED*. Actually, you could be listed in as many *AREAS* as you like and are willing to go through the process to be listed at.

Your Transplant Team will advise you of this right. In fact you sign a piece of paper acknowledging that they have advised you of this right. (You sign LOTS of papers...!)

But it is important to know how the system works.

UNOS, who is the United Network of Organ Sharing Organization, ( I highly suggest your visit their site), is the organization in charge of Organ Allocation. Here is a brief description of what they do.

*The UNOS Organ Center is available 24 hours a day, every day of the year, to facilitate organ sharing among transplant centers, organ procurement organizations and histocompatibility laboratories across the U.S. The primary functions of the Organ Center are to:
  • assist in placing donated organs for transplantation
  • assist in gathering donor information and running the donor/recipient computer matching process
  • assist with transportation of organs and tissues for the purposes of transplantation
  • act as a resource to the transplant community regarding organ-sharing policies*

Basically, it works like this.

The country is divided into regions. We are in region 5. Region 5 consists of Arizona, California, Nevada, New Mexico and Utah. Now within region 5 there are smaller more localized groupings. We at Loma Linda are in a group with other major transplant centers. Cedar Sinai, USC and UCLA are the big 4 in this area. San Diego has it's own area with 2 major centers and Northern Ca has 2 as well including, Stanford, UC San Francisco, UC Davis and California Pacific in San Francisco.

In order to better allocate and distribute viable organs the organs are best placed locally (they don't have a long shelf life...... :-) (I am still SO SURPRISED when people ask me when my transplant is SCHEDULED????? Which they often do!)

So, if your insurance allows it...which is a HUGE thing, or if you can afford the transplant yourself and if the Transplant Center agrees to have you as a patient and list with their facility, You have the right to be listed in any area you feel you would like to be transplanted at.

Now, not all transplant centers are created equally and I am not going to get into that here but do your homework as you should with any major health issue you may be facing.

I have and these are the best choices for ME..... I will leave it at that.

So, tomorrow, Joe and I head down to meet with my new hepatologist, Dr Hillebrand. He has been highly recommended to me by some of his former patients including Don, who just had his 10 year anniversary with his new liver, he is the head of our LLU support group along with his wife, Betty, who runs the caregiver support group. He was/is also Dr Darlings Doctor who is a 3 time liver transplant patient, who I wrote about in a previous post.

As you may imagine I am very excited and a bit nervous about tomorrow. I feel very safe and comfortable at my hospital home of LLU and it is a bit out of my comfort zone to venture out to another. The other reason for my feelings is that I am of course doing this in the hopes of getting my transplant sooner as they don't have as many people waiting with my MELD score and blood type. SO, that could mean that I am on my way........

I haven't mentioned to you all that it has been exactly ONE YEAR since I entered the Emergency Room Doors at LLU and was diagnosed and began this journey. It has been quite a year...I have learned a lot....more on that later.

So, I have my list of questions for Dr H and away we go!


Organ and Cell Transplantation FAQ's from Scripps Green Hospital

Here is an excerpt from a web page on the Scripps Green Transplant Web Site. I have included a link to the full article HERE and will post one under the LINKS section.


Scripps Center for Organ and Cell Transplantation

When will I be placed on the waitlist?

You will be placed on the waitlist after you have completed all of the necessary tests and received insurance approval, and the transplant selection committee at Scripps has had an opportunity to review the results and make sure it is safe for you to undergo a transplant. The committee may decide that you must fulfill certain additional requirements prior to listing.

Why are there so many tests and how long will it take me to complete them?

The tests that are part of the evaluation process are required to make sure it is safe for you to receive a transplant. For example, if you were found to have heart disease during your evaluation, there may be some change in your medication or a procedure that you would require before it would be safe for your heart to undergo the transplant surgery. The entire evaluation process may take from one month to several months depending on your medical problems and how quickly you can complete the necessary tests.

How long will I have to wait for a transplant?

How long you will have to wait for your transplant depends on a number of factors including:

  • The type of transplant you require (liver, kidney, pancreas, or some combination).
  • How quickly you complete the evaluation testing
  • Whether you have other medical problems that require a waiting period. For example, you may receive a transplant after having certain types of cancer if you have received treatment and have demonstrated a long enough period without the cancer returning
  • In the case of a liver transplant, how sick you are
  • Your blood type (certain blood types must wait longer than others)
  • In the case of a kidney or pancreas transplant, how your immune system reacts to cells or organs from other individuals
  • In the case of a kidney transplant, how long you have had kidney failure

In general, patients can wait months to years for a transplant from a cadaveric donor. For patients with a living donor, the wait can be significantly shortened since they need to wait only as long as it takes to complete both their evaluation and that of their donor (usually a few months). In addition, patients with kidney failure who agree to accept a kidney from an extended criteria donor currently wait less than a year at Scripps for their transplant.

How long will the transplanted organ last?

How long the transplanted organ will last depends on a number of factors. In most cases, the new organ should last for the rest of your life. In some cases, a transplant does not last that long. Reasons for a transplant not lasting as long include:

  • Recurrence of the disease process that damaged your original organ
  • Rejection of the organ by your immune system
  • Infection
  • Drug reaction

Fortunately, in most cases these problems can be treated.

Will I have to take special medications for the rest of my life?

You will have to take special medications for the rest of your life. When you first go home after your transplant, you will be on roughly 10-12 new medications. With time, that number will be reduced by your transplant physician.

How long will it be until I can get back to my normal life after my transplant?

Most patients can get back to a relatively normal life in about 3 months. You will be in the hospital for about a week. When you go home, you will need help taking care of yourself. For the first 4-6 weeks, you will be instructed not to lift anything heavier than a phone book. It will probably be 2-3 months before you are ready to drive and probably 3-6 months before you are ready to go back to work. For some patients the rate of recovery is faster, for some slower. It will depend on how ill you are before your transplant and whether you have any complications.


And Nancy's Big Question is ........ WHEN CAN I TRAVEL/CRUISE AGAIN ?????????