Party Report

I will tell you about my birthday party later...But it was a truly fantastic day and I was surrounded by great friends and couldn't have wished for more!

Steve Miller Band Concert

Last week before my birthday Joe and I along with our good friends, Dean and Michelle, went to see the Steve Miller Band at a local Indian Casino. IT WAS SO GOOD !!!!! We all had a great time. Steve played all his favorites and a lot of really great blues stuff. From start to finish he ROCKED and the audience showed their appreciation by having a great time, singing along and dancing in the aisles!

I was so proud of the audience............Seems that all of us who used to rock out at concerts in the day seem to like to plant our butts, (well, not me...........LOL) and politely clap to the same stuff we used to dance and scream at....well, not this audience and it made it that much more fun.

It really was fun and if you like this kind of stuff and see he is coming to your area, go get yourself a ticket or 2.....Have some fun.....You never know what is around the corner!

New York looks for ways to increase organs available for transplant!

June 1, 2008

City to Explore a Way to Add Organ Donors
By CARA BUCKLEY

New York City is pioneering a potential solution to a supply-and-demand problem that has long vexed doctors the world over: how to meet a desperate need for donated organs without trampling on sensitivity surrounding the sanctity of death.
About a third of all donated organs are harvested from live donors. Nearly all the rest come from people who have been declared brain dead while undergoing treatment in hospitals. But thousands of people die at home or on the street, their organs almost never considered for transplantation even if they had filled out donor cards, because there is no system in place to handle it.
But with a $1.5 million grant over three years from the federal Health Resources and Services Administration, a team of medical experts and bioethicists is looking to expand the city’s donor pool by deploying a “rapid organ-recovery ambulance” to collect and preserve the organs of people who die of cardiac arrest. The plan — modeled on a successful program in Spain — is for the ambulance to trail regular ambulances that try to save people’s lives, then to swoop in if patients die and to maintain the bodies in stasis for several hours at a hospital, until family members can decide whether to donate the organs.
“I see this as a continuum for saving lives,” said Dr. Lewis R. Goldfrank, director of emergency medicine at Bellevue Hospital Center, who is leading the project. “To see people die every year who are waiting on organ-donor lists and people die who are potential donors, seems a mismatch between societal needs and societal values.”
Dr. Goldfrank aims to get the first organ-recovery ambulance in operation by year’s end in Lower Manhattan. If the project is a success and replicated in other cities, he estimated that the nation’s donor pool could grow by 22,000 people.
News of the federal grant was reported last month in The Washington Post and USA Today. Details are still being hammered out as Dr. Goldfrank and others meet with community and religious leaders to assuage public jitters.
“In our culture, doing things to a dead body without consent is highly controversial, even if it’s minor, even if doesn’t cause permanent marking,” said Dr. Arthur Caplan, a bioethicist at the University of Pennsylvania who is not involved in the program.
“There are a lot of Americans who have a hard time getting into a hospital because they don’t have insurance or they have poor insurance,” Dr. Caplan noted. “They will not necessarily find it a good thing when they find out that they can’t get into the hospital, but that a hospital will send a special ambulance to bring their body to the hospital when they’re dead.”
New York’s recovery ambulance is inspired by a donor-detection program started in 1989 in Spain, which now has the highest organ-donation rate in the world. In the past two decades, Spain has tripled organ donation to 35 donors per million people, significantly shrinking its waiting list. In the United States, there were 23 donors per million people in 2007, according to the organization Donate Life America, with roughly 99,000 people waiting.
But thousands of organs from would-be donors are never harvested because there is no system to quickly transplant organs from victims of cardiac arrest.
“There are times where a family member of the newly deceased wanted the opportunity to donate the organs, and in the current system they don’t have that opportunity,” said Dr. Bradley Kaufman, a medical director with the Fire Department. “The main goal of the project is to preserve the right for the family to make that decision.”
Dr. Kaufman said the new system would not affect resuscitation efforts, only what would happen if those measures failed.
A typical situation, according to several of the doctors involved, might unfold like this: Emergency services are notified that a person has gone into cardiac arrest. An ambulance is dispatched, and normal efforts are made to revive the victim. Unbeknownst to paramedics in the first ambulance, the dispatcher would also have alerted the organ-recovery ambulance, which would also head to the scene. The medics on the second ambulance would not get involved unless all resuscitation efforts were exhausted and the victim declared lifeless.
At that point, instead of transporting the body to a funeral home or the medical examiner’s office, the organ-recovery team would wait five minutes, then begin running fluids into the body to preserve organs and prevent blood clots. A medic would administer chest compressions to maintain minimal blood flow, and the body would be taken to hospital. Transplants would happen only if the next of kin agreed and organs were healthy.
A similar project, financed by the same federal agency, is under way at the University of Pittsburgh School of Medicine, though it will be limited to people who die in hospital emergency rooms.
“I applied for the grant out of my conviction that we can do better for dying patients,” said Dr. Michael DeVita, a professor of critical care medicine at the university. “I’m an I.C.U. doctor, and I want people at the end of their life to have the best care possible, for both the patient and the family. And that also involves enabling people to build a legacy that they can leave behind.”

Blogging from my Blackberry

This is a test to see if I can blog directly from my phone to the blog.

Sent from my BlackBerry® smartphone with SprintSpeed

IT'S MY BIRTHDAY !!!!!!!

And I have to go get ready for my PARTY !!!!!

Giving Blood for my Transplant

THANK YOU, THANK YOU, THANK YOU TO ALL THAT ARE

GIVING BLOOD, PLASMA AND PLATELETS IN MY NAME!

What a wonderful gift! xoxoxoxoxo I can't thank you enough......................

Extreme Tiredness in Liver Disease

This was written by someone who was a caregiver for a cirrhosis patient prior to her transplant.

Tiredness is caused because the body is trying to heal. It is making adjustment (homeostatis) to try to do the functions the liver once did. The tiredness can be sudden and unforgiving. There is no choice but for the body to sleep.


There are poisons, or toxins, going into the blood now and building up causing changes in the way the body once functioned. Some of these poisons go pass the blood brain barrier and into the brain causing confusion. Medications and just the cirrhosis itself, can change the way food taste to the patient. Because of the build up of fluid in the body...especially in the abdominal area...this fluid puts pressure on the stomach and other organs; it also puts pressure on the diaphram making it difficult to breathe well.

The liver always made sure that the body had the nourishment it needed, that the special proteins where made, that the toxins were converted to non toxic substances, that certain vitamins were always available, that our food was broken down into simplier forms that the body could use and it even stored these for times when we did not eat. Add to this the emotional causes of this disease: wondering if there will be a tomorrow, wondering if those we love will be alright if we leave them, watching many of the dreams we had in life disappear, feeling guilty if we think we brought all this on ourselves, wishing things were different and hoping we don't become a burden to our families.

Now to the mental aspects. Because of the toxins going into the brain...we cannot think clearly and start to make wrong decisions. We don't see that in ourselves, it takes others to point this out. Suddenly, people may start to treat us like children and make all the decisions for us and start to tell us what to do, how to do it, and we wonder if they are joking or they are serious. AS you can see, this disease can take its toll on a person if they let it. Most liver patients with a disease like this one, are found to be mal nourished, not breathing well, depressed. They are watching all the things this disease can do to the body and they can look in the mirror and suddenly don't see themselves anymore. They look like a skeleton that is having twins. There normal color skin in now an orangish yellow. Their own body fluids are darker and their stools are so light. They may be taking on a feminine appearance. It is like living in a body that has come from another planet. Hello, Spock. I'm now a being from the planet Cirrhosis. Beam me aboard.


If a patient needs to sleep, it is good to do so. These sleep pattern changes are considered normal for someone with this disease. However, the caregiver should be sure that they obtain some sort of nourishment. Without nourishment...the body will not have energy to function or last. If they cannot eat, ask the doctor about supplements he recommends. Also ask about any vitamins they might need... however, these supplement drinks have enough for the patient. Always check with the doctor to be sure, as these supplement can contain things certain patients should not have...the doctor can tell this by blood work.

When the liver starts to deteriorate...the functions (of which there is over 500) go down also. Some organs try to make up for the load of work. The kidneys filter the blood so it is trying to adjust the sodium (salt) in the body also the potassium, it is trying to keep us from becoming dehydrated, it is filtering out the normal waste and is now adding onto that the toxins in the body that the liver no longer converts. It is becoming overwhelmed. If you notice, those who are placed on the transplant list...not only have their liver enzymes and liver functions being checked, but also their kidney functions. The liver goes into failure and the kidneys will shortly follow. Some patients may be placed on dialysis because of this...to try to help the kidneys.


When someone says cirrhosis, everyone thinks it is only a liver problem...that is not so...it effects many other organs also and it effects the body as a whole. Scar tissue does form in the liver causing the cells of the liver to die. The spleen can enlarge because of the back up of blood not being able to go through the liver and be rerouted into smaller vessels to try to return this blood to the heart. The stomach has pressure put on it from fluid build up. The heart has to adjust to slowed return of blood to it. The lungs cannot expand well with pressure up against the diaphragm and fluid can develop in them. The digestion of the food is altered since the bile may not be reaching the intestines. There is vitamin deficiency that develops and the homeostasis of the body become altered in many different ways. The mind (brain) becomes unclear because of poisons.


If you really look at Cirrhosis in the light of the entire body...even the skin is affected, you could say you have disease of the entire body. The hormones are changed, proteins are not made, the immune system starts to work overtime.


By the way, anyone who has cirrhosis should see about their teeth and also their eyes. We sometimes forget this. Those who have a transplant can have problems with these areas afterwards. I would like to suggest, that if you do vomit...try to wash your mouth out with water right away and brush your teeth. It isn't normal for the acid in your stomach to be in your mouth and can cause dental problems. Anyway you can neutralize the acid in the mouth is good...the doctor can tell you what to use. Another thing to think about is your bones. Ask your doctor about trying to protect your bones. He may start you on calcium, phosphorus, vitamin D and even do a Dexa scan to be sure you don't develop osteopenia. Many patients spend months in the house or in the hospital, with not eating properly... it can cause the bones to deteriorate also.


I hope this information is of some help to you.

Naps for my Liver

I am finding that lately at some point in the day. It could be a couple of hours after I get up or later in the afternoon that I am having a really hard time staying awake. My liver needs a rest to go on...and so I give it one. I feel very guilty and lazy for doing this. I have never been one for naps and I guess I consider it weak. I certainly think of it as lazy but I just can not physically stay awake when I need one. I KNOW it is my body as when I do lay down, I go out like a light and sleep REALLY HARD......If I don't answer the phone, etc during the day. I might be sleeping.....and please don't call before 9am....

I am going to post some things my friend wrote on a cirrhosis board to explain some of the symptoms and things you might want to know about how the liver and kidneys function....

more of Real Life

Friday was Joe's last day at the hospital he has worked at for the past 10 years..with a break here and there. I went over for a really nice going away lunch at one of our favorite Bistro's with some of our favorite people from the clinic.. It was a sad/happy sort of day... On to new adventures closer to home!

Meanwhile for several days I have been on the phone with my Financial Coordinator at the hospital, My case manager at Health Net, Health Net itself (many departments), the insurance coordinator for the Joe's new hospital, Social Security, Medicare...etc. etc. etc. All I was trying to do was get some simple answers that no one seemed to be able to answer of course... AAAAAHHHHHHHHH !!!!

To make a long story short...... I THINK, not certain, but I think that we may have solved what could have been a huge financial nightmare for us...and I KNOW the man upstairs lined this up for me....I just had to decipher it....

So we shall see. I am not finished yet with this....

Dinner with Dr Cliff and Karen

Thursday night we also had Cliff and Karen, Joe's new employers, over for dinner. It was very nice having them over to the house and it had been awhile since we had had people over for dinner other than quick bites here and there.

They hadn't been to the house before and we all wanted to get together for a last minute pow wow before Joe gets started over there on Monday!

They are such nice people and we get along very well with them. We are all looking forward to a long and productive relationship together.

They ran a big ad in the local paper today, Sunday, welcoming Joe back to the High Desert and to the practice. We are very excited about the move and I will write more about the practice later. It will be a big change for us having Joe so close to home and we are looking forward to that as well. Joe will look forward to seeing you local friends and your pets here in town!

and then there was Thursday

Thursday I learned that these lovely creatures, Tent Caterpillars, were eating and killing all of our Italian Cypresses and pine trees. We have a LOT of very tall Italian Cypress trees surrounding our property and we would hate to lose them especially to a furry insect.

A very nice guy who specializes in this sort of thing had been inspecting the property behind us where the owner was complaining about the plethora of these. We had noticed an over abundance of these this year as well. I was just worried about all the moths that would be sure to follow and had no idea they ate trees and had settled in ours!

We did have one extra large tree that we saw was dying and thought it wasn't getting any water to it and had been giving it extra water but apparently that isn't the problem.

The nice bug man's solution. One of them is to spray the trees to the tune of a nifty thousand dollars.....YIKES! Wasn't exactly in the monthly budget this month.

He had a couple of other suggestions and we are going to get an arborist to come out and give us a second opinion....I will let you know....But watch those caterpillars. If you have them in your area and have pine or cypress trees he said you should spray them every February as a preventative measure. I will look up the name of the stuff. Ortho makes it.

Then there was cleaning day...........

Yes, Wednesday was cleaning day and NO, I didn't do it all by myself. I had a little help from Sandra and Connie my occasional cleaning girls.

They do a great job and inspire me to do a bit more myself.

So, the house is way less hairy....(thank you animals.....yes, Frank, I am talking to you)

Smells much better.......soooooo clean.

Has less clutter and even shines and sparkles a bit!

Now, if I can just get to my closet!

My Big 2 month Dr Appointment, minus the Doctor!

Last Tuesday I had an appointment with Dr Mendler. My lead Dr and Hepatologist at the Transplant Center. I only see him every 2-3 months only this time I didn't even see him!

I went armed with my carefully written questions but feeling good and waited a long time to be called in which is unusual in this office.

I was greeted by his Nurse Practitioner who I thought was doing a thorough pre Dr check list. Come to find out they were so very busy that apparently that was the extent of my appointment. My appointment with her was very thorough and she was able to answer my questions. She did an exam and we spent about 30 minutes together. I have seen her before and like her. I guess I am doing well enough that Dr Mendler didn't feel he needed to see me unless I requested it. I had just seen him a few weeks ago when he did my endoscopy so I elected not to wait for him.

Anyway, all is good.....and they say.......................*anytime*.........