Sunday, September 27, 2009

Remember Me By Robert T. Nest

To Remember Me
The day will come when my body will be upon a white sheet neatly tucked
under four corners of a mattress located in a hospital; busily occupied with the living and the dying.
At a certain point a doctor will determine that
my brain has ceased to function and that, for all intents and purposes, my
life has stopped.
When that happens, do not attempt to instill artificial life into my body by
the use of a machine. And don't call this my deathbed.
Let it be called the
bed of life, and let my body be taken from it to help others lead fuller lives.
Give my sight to the man who has never seen a sunrise, a baby's face
or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but
endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of
his car, so that he might live to see his grandchildren play.
Give my kidneys to the one who depends on a machine to exist from
week to week
Take my bones, every muscle, every fiber and nerve in my body and
find a way to make a crippled child walk.
Take my cells, if necessary, and let them grow so that, someday a
speechless boy will shout at the crack of a bat and a deaf girl will
hear the sound of rain against her window.
If you must bury something, let it be my faults, my weakness, and all
prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.
If by chance, you wish to remember me, do it with a kind deed or word to
someone who needs you. If you do all I have asked, I will live forever.
written by Robert N. Test

Wednesday, September 23, 2009

The latest info

So, here are my most recent projects...Above is the beginning of the bills, lab results, medical instructions, and release forms that really need to be organized, and my regiment of meds. I am mainly documenting this because right now, though I am on a few meds and vitamins already, I know that within months this can change. Eventually my medication costs will be averaging over $10,000.00 a month...(yes...month) This is of course if I am blessed with a second chance of life. I know that a new liver for me is in no way a right, it is truly a gift!

As for the latest scoop. I did receive a call and letter from USC, stating that my financial information is being reviewed as we speak, (gulp) and I should be receiving a call for my first appointment by Monday.
(Just a side note: When you call the USC Transplant center, the automated voice says, "For kidney transplant, press 1. For Liver transplant, press 2....." and so on down the body. It gets me everytime.)
Today, my swelling was good, slight pains in the kidneys seem to be better and I don't think I have bumped into a single wall today!
Tumor marker decreased slightly (which is encouraging, the doc said)
Ammonia levels are rising - Hepatic encephalopathy - (which means I am only gonna get loopy-er)
Kidney function is decreasing slightly (double gulp)

So that is it for now....Except, in the near future we will need to start fundraising to help with costs, as of right medical share of cost is $1257.00 MONTHLY. that is over $20k yearly out of pocket minimum. So, if any one has any ideas. I am looking into the NFT - National foundation for transplants for some help with this but if ANYONE has any info on fundraising organizations or even ideas for fundraisers, please, please let me know!!

Friday, September 18, 2009

Plea attracts 20,000 donors

Plea attracts 20,000 donors

By Chris Watt

THE number of registered organ donors in Ireland has grown by record amounts after a heartfelt plea from ailing Glasgow-based screenwriter Frank Deasy.

More than 20,000 people have now signed up since the appeal, aired on radio and in national newspaper following Frank's death last week due to liver cancer, giving new hope to patients in the British Isles awaiting transplants.

The NHS is expected to publish its own figures on donor numbers today, but the success of Mr Deasy's campaign in Ireland has prompted speculation over a similar surge in donations within the writer's adopted homeland of Scotland.

There are currently 380 people awaiting liver transplants in the UK of whom one in five will die before a donor becomes available. One in 20 on the waiting list is a child.

Announcing the record rise in donor numbers, Mary Harney, the Irish Health Minister, pledged better co-operation between her country and the UK on the issue.

Donor pools are already shared around the British Isles, but often relatives must make a snap decision on donation in the hours after a loved one's death, the politician said.

Ms Harney also praised the screenwriter "for speaking out publicly about his illness and the importance of organ donation."

Mr Deasy, who was 49, was best known for the TV drama Prime Suspect.

9:40am Friday 25th September 2009

Wednesday, September 16, 2009

The reason the Jelly's in the freezer and potatos are cookin in the cupboard...

Today I realized that I take my mind for granted way to much and that I need to cut myself some slack, there are reasons we are loony sometimes.... Everything has to be jussssst right in our bodies to function properly, one thing can cause a domino effect! I got the results today of my latest blood work, (to much ammonia in the blood - Hepatic Encephalopathy) and a new medicine to go with it...hehe. I have to admit, me and my mom sang the Pina Colada song when I opened that bad boy does taste pretty tropical --sweeeet. Actually, everyone in the family had a different song or skit for the gallon of Lactulose.....Rylee, had the I love Lucy, Veeta Vita Vegiman skit slurring, while Bryan was singing..."just a spoon full of sugar makes the medicine go down"... While I danced down the Walmart isle....(luckily I get my perscriptions at's the only place you can do that -- and not look out of place) Maybe I wasn't always this out that first step, it's a lulu. hehe...but, this newest medicine should help with the "fog" and even the day/night reversal...hopefully. I vow to no longer store the jelly in the freezer, try to cook the potatos in the cupboard, or ask..."Wait, what was I doing again?" long as I can remember to take my medicine...huh, this is tricky already. (DON'T WORRY UNOS, I HAVE A MED TRACKER FOR AFTER THE TRANSPLANT...HEHE)

Hepatic Encephalopathy

Hepatic encephalopathy

Hepatic encephalopathy is brain and nervous system damage that occurs as a complication of liver disorders.

  • Agitation
  • Changes in mental state, consciousness, behavior, personality
    • Changes in mood
    • Coma
    • Confusion, disorientation
    • Decreased alertness, daytime sleepiness
    • Decreased responsiveness
    • Delirium
    • Dementia
    • Forgetfulness
  • Deterioration of handwriting or loss of other small hand movements
  • Dysfunctional movement
  • Muscle stiffness
  • Muscle tremors
  • Seizures (rare)
  • Speech impairment
  • Uncontrollable movement

Patients with hepatic encephalopathy are often not able to care for themselves because of these symptoms.

Hepatic encephalopathy may become a medical emergency. Hospitalization is required.

The first step is to identify and treat any factors that may have caused hepatic encephalopathy.

Gastrointestinal bleeding must be stopped. The intestines must be emptied of blood. Infections, kidney failure, and electrolyte abnormalities (especially potassium) need to be treated.

Life support may be necessary to help with breathing or blood circulation, particularly if the person is in a coma. The brain may swell, which can be life-threatening.

Patients with severe, repeated cases of encephalopathy may be told to reduce protein in the diet to lower ammonia production. However, dietary counseling is important, because too little protein in the diet may cause malnutrition. Critically ill patients may need specially formulated intravenous or tube feedings.

Lactulose may be given to prevent intestinal bacteria from creating ammonia, and as a laxative to remove blood from the intestines. Neomycin may also be used to reduce ammonia production by intestinal bacteria. Rifaximin, a new antibiotic, is also effective in hepatic encephalopathy.

Sedatives, tranquilizers, and any other medications that are broken down or released by the liver should be avoided if possible. Medications containing ammonium (including certain antacids) should also be avoided. Other medications and treatments may be recommended. They may have varying results.

Hepatic encephalopathy is caused by disorders that affect the liver. These include disorders that reduce liver function (such as cirrhosis or hepatitis) and conditions in which blood circulation does not enter the liver. The exact cause of hepatic encephalopathy is unknown.

An important job of the liver is to change toxic substances that are either made by the body or taken into the body (such as medicines) and make them harmless. However, when the liver is damaged, these "poisons" may build up in the bloodstream.

Ammonia, which is produced by the body when proteins are digested, is one of the harmful substances that is normally made harmless by the liver. Many other substances may also build up in the body if the liver is not working well. They can cause damage to the nervous system.

Hepatic encephalopathy may occur suddenly in people who previously had no liver problems when damage occurs to the liver. More often, the condition is seen in people with chronic liver disease.

Hepatic encephalopathy may be triggered by:

  • Any condition that causes alkalosis
  • Dehydration
  • Eating too much protein
  • Electrolyte abnormalities (especially a decrease in potassium) from vomiting, or from treatments such as paracentesis or taking diuretics ("water pills")
  • Gastrointestinal bleeding
  • Infections
  • Kidney problems
  • Low oxygen levels in the body
  • Shunt placement or complications
  • Surgery
  • Use of medications that suppress the central nervous system (such as barbiturates or benzodiazepine tranquilizers)

Disorders that can mimic or mask symptoms of hepatic encephalopathy include:

Hepatic encephalopathy may occur as an acute, potentially reversible disorder. Or it may occur as a chronic, progressive disorder that is associated with chronic liver disease.

Nervous system signs may change. Signs include:

  • Coarse, "flapping" shaking of the hands when attempting to hold the arms out in front of the body and lift the hands
  • Abnormal mental status, particularly cognitive (thinking) tasks such as connecting numbers with lines
  • Signs of liver disease, such as yellow skin and eyes (jaundice) and fluid collection in the abdomen (ascites), and occasionally a musty odor to the breath and urine

Tests may include:

  • Blood chemistry
  • CT scan of the head or MRI
  • EEG
  • Prothrombin time
  • Serum ammonia levels

Acute hepatic encephalopathy may be treatable. Chronic forms of the disorder often keep getting worse or continue to come back.

Both forms may result in irreversible coma and death. Approximately 80% (8 out of 10 patients) die if they go into a coma. Recovery and the risk of the condition returning vary from patient to patient.

Treating liver disorders may prevent some cases of hepatic encephalopathy. Avoiding heavy drinking and intravenous drug use can prevent many liver disorders.

If there are any nervous system symptoms in a person with known or suspected liver disease, call for immediate medical attention.

  • Brain herniation
  • Brain swelling
  • Increased risk of:
  • Permanent nervous system damage (to movement, sensation, or mental state)
  • Progressive, irreversible coma
  • Side effects of medications

Call your health care provider if any change in mental state or other nervous system problem occurs, particularly if there is a known or suspected liver disorder. Hepatic encephalopathy can rapidly get worse and become an emergency condition.

Sunday, September 13, 2009

Is a living liver donation worth the risk?

Is a living liver donation worth the risk?
Sunday, August 09, 2009

Liver transplants from living donors had already been losing momentum around the nation by the time UPMC transplant pioneer Thomas Starzl weighed in on the topic recently.

But as the first doctor in the world to perform a liver transplant, his critical perspective on 121 of those transplants at UPMC between 2003 and 2006, which revealed a high complication rate, is certain to ramp up the debate among transplant physicians and ethicists on this controversial procedure.

The recent study looked at the period when living donor operations surged at UPMC under the leadership of Dr. Amadeo Marcos, who was forced to resign last year amid sexual misconduct allegations.

That rapid increase was an anomaly in the United States, where the operation has been declining since 2001.

Living donor liver transplants peaked nationally at 524 in 2001, when they comprised 10 percent of all liver transplants. By last year, they had dropped to 249, and accounted for just 4 percent of liver transplants.

That's a marked contrast to living donor kidney transplants, which now make up nearly a third of all kidney transplants in America. Living kidney operations not only are safer to perform than living liver transplants, but live-donor kidneys function significantly better than deceased donor kidneys do.

At UPMC, the number of living donor liver transplants has plummeted since Dr. Marcos left, from more than 30 a year at his peak to just four last year.

UPMC spokesman Paul Wood said last week that the dwindling number of living donor transplants does not reflect any change in policy, but simply the fact that "when you have a world-famous surgeon like Dr. Marcos who was a pioneer in living donor liver transplants, and he leaves, a decrease in numbers is a natural consequence of that."

He said neither Dr. J. Wallis Marsh, lead author of the Journal of Hepatology study that also included Dr. Starzl and two others, nor Dr. Abhinav Humar, new chief of transplantation, wished to comment for this article. Dr. Starzl also declined comment.

At the national level, there are at least three reasons living donor surgeries have declined, according to a report last year by Dr. James Trotter, medical director of liver transplantation at Baylor University Medical Center in Dallas.

The first is what he called the "front-loading" effect, meaning that the best matches between donors and recipients were done early in the process, after adult-to-adult liver transplants began 10 years ago.

The second is that thanks to a concerted national effort to increase organ donations, the number of deceased donor transplants increased by nearly 30 percent between 2001 and last year, to 6,070 transplants.

Finally, he wrote, doctors began to realize that the results of living donor transplants were not quite as good as they had originally thought.

Initially, they touted the fact that the survival of living donor patients was better than those who got cadaver organs. But that was influenced by the fact that most people getting living donor transplants were much healthier than those getting cadaver organs, largely because national policies dictate that deceased donor organs go to the sickest patients on the waiting list.

Still, some experts feel that correlating the survival of those who get live organs with those who get cadaver organs is the wrong comparison to make.

"The fundamental choice patients are making is not a living donor organ vs. a deceased donor organ; they're deciding between a living donor transplant today vs. staying on the waiting list with the potential for getting an organ in the future," said Dr. Robert Brown, medical director of the Center for Liver Disease and Transplantation at New York Presbyterian/Columbia.

And for now, Dr. Brown said, the chance of people dying while on the liver transplant waiting list is greater than 20 percent, while the chance of dying after a transplant is less than 10 percent after one year. "So the real question is, 'What risk should a donor take in order to get the recipient off the waiting list sooner?' "

While the Starzl and Marsh study criticized several aspects of living donor transplants, including the fact that they subject healthy donors to a risky surgery, it didn't call for abandoning the operation altogether.

That's also the position of Dr. Goran Klintmalm, a longtime liver transplant surgeon at the Baylor Regional Transplant Institute and past president of the American Society of Transplant Surgeons.

"I have been quite public in saying that, to me, you have to have a really good reason before you expose a healthy human being to the risks that are entailed in living donation," Dr. Klintmalm said. "In kidney transplantation, the risks are very small if done correctly. In liver transplantation, just as Tom [Starzl] brings up, the question is, when is the risk to the donor so high that you have a hard time justifying it?

"I don't think there is an easy straightforward answer to that because I don't think we as a society have really figured out what the risk and benefit balance is."

One key, he said, is to find potential recipients who are neither too sick nor too healthy.

Liver disease patients who are very sick don't do well with any kind of transplant, he said, but have an especially tough time if they get a living donation. Since living donor patients are only getting about 40 percent to 60 percent of the donor's liver, there sometimes isn't enough tissue to overcome the shock of transplant surgery, Dr. Klintmalm said.

On the other end of the scale, studies have shown that for relatively healthy liver patients, the risk of surgery is a greater threat to their lives than waiting until they are sicker.

To determine how sick a patient is, liver specialists use a national rating system called MELD -- Model for End Stage Liver Disease -- which ranges from 6, for very healthy, to 40, for extremely ill.

Most living donor programs have now agreed it is too risky to transplant any patient with a MELD of less than 15, even though at UPMC, 70 percent of the patients transplanted by the Marcos team had MELD scores of 15 or less.

In his view, Dr. Klintmalm said, "somewhere between a MELD of 15 and 28 is the ideal window" for living donor transplants.

Even with healthy recipients, though, there is the issue of complications. The Starzl and Marsh study said that 66 percent of living donor liver recipients at UPMC suffered serious postoperative complications.

That was more than twice the rate cited in a study of nine top living donor programs across the nation, although UPMC's Mr. Wood said that "we believe it is possible the complications at other centers may have been underreported. We believe our researchers used a more rigorous system and more rigorously applied the criteria" to track postoperative problems.

If that is true, though, it would mean that more than half of all living donor recipients in America may suffer potentially life threatening complications.

Dr. Satoru Todo, a liver transplant surgeon at the Hokkaido University Graduate School of Medicine in Japan, said in an e-mail interview that living donor transplants are a challenging type of surgery.

"It is a technically demanding surgery," Dr. Todo said, "and is complicated by such postoperative problems" as clots in the liver's main artery, bleeding, retention of fluid in the abdomen and narrowing or blockage of the bile duct.

Even so, Asian centers have reported much lower complication rates than American hospitals for living donor liver transplants.

Dr. Todo said Asians have a high incidence of liver cancer, so surgeons there are very experienced with liver operations. There is also a cultural prejudice in Asia against donating organs at death, which means that Asian surgeons have few chances to use cadaver organs as a fallback.

Most experts see a future for living donor liver transplants, but it's unclear whether they will regain a bigger share of transplants.

In parts of the United States or the world where there is a good supply of cadaver organs, "the rule should be if we don't absolutely need to do living donor transplants, we should never do them," said Dr. Ronald Busuttil, chief of liver and pancreas transplantation at the David Geffen School of Medicine at the University of California at Los Angeles.

Worldwide, there probably have been more than 30 deaths of donors during this procedure, he estimated, and "that is very much on the minds of most transplant surgeons around the country. We're very reluctant to subject our patients to a living donor transplant."

One important lesson from the Starzl and Marsh study, Baylor's Dr. Klintmalm said, is that it "brings out the whole issue that we need to be careful and not just charge ahead and let cowboys do this [operation]. It has to be done by people with honesty and respect for life and people."

But Columbia's Dr. Brown also pleaded for empathy with donors who want to help people they love. "If you want to respect donor autonomy, you would allow them to take much greater risks than any [liver specialist] would allow them to. I think it's clear donors would take a higher risk for someone they really cared about than medical practitioners are willing to do."

Mark Roth can be reached at or at 412-263-1130.
First published on August 9, 2009 at 12:00 am

Thursday, September 10, 2009

09/09 Appointment

Another quick update...I found out what my doctors appointment was for finally...I knew it would hit me once I got in there! hehe. My doctor, the first thing out of his mouth when he came in was, "what are we going to do with you? You're keeping me up at nights!" *Gulp* But -- it was just a routine visit to discuss what happened in the ER last week and follow up with a few more sticks for the pin cushion.
My concerns I brought in were:
Nausea and vomitting....still
Dizziness and weakness
The "Bruised banana" look (that's going to be my new nickname BB. hehe)
Loss of appetite and weight loss (down to 124 -- eat your heart out) jk
-and my newest symptom...dare I say it, oh ya I will - a hemorrhoid. Something I prided myself on not even getting while pregnant -- and not pleasant.
The reason for all of this?? Portal hypertension. What will fix it?? A liver transplant. That's it. So part of me was frustrated to know that the only way to fix any of this is with the new liver, and it is only going to get worse until I get one. But at the same time, at least I know...this is all normal (well kinda) and there is a fix, maybe not the most ideal fix, but what are you gonna do.

As for the blood work, he is checking my kidneys because of the diuretics...He said I look "dry" and I said "Thanks a lot, I put lotion on" hehe...I knew he meant water retention, but it was funny...Luckily, my humor is not wasted on my doctor, although I don't think he is quite sure what to make of me. He did admit that to look at me, you wouldn't know I was as sick as I am (Awe, shux)-- until you see me on paper, that is. Of course that might be why he is also checking my ammonia levels...Slightly raised levels can make you....hehe...goofy. (although very dangerous if it to high) Don't worry though, I'm pretty sure I was like this before.

What's next: I was scolded (not really) about being pro-active with USC, keep calling them, because you need to be on that list! -- So I will call them first thing this morning. (see I'm a good patient)
A CT scan to recheck for tumor - Not scheduled yet. But, I did speak to a transplant nurse who said once a person with HCV+ decompensated cirrhosis has rising AFP levels, they are pushed up on the transplant waiting list, at least at the center she is at. (I know, that is reeeeally stretching to look at the cup half full.)
Keep up with my diet -- less then 2000mg salt and no meat (you don'ta eat no meat, ahh, that's ok, I make lamb) MY BIG FAT GREEK WEDDING.
And, go straight back to ER if; severe swelling in the abdomin, vomitting (or the other) of blood, severe pain or dehydration, unconscienceness or dillirium...(that's encouraging, huh)

Oh, I also asked for pictures of Larry (to which he replied, he's never had that request before) but said I can probably get a disk from I might be posting that later - relax its just an ultrasound photo...hehe

Monday, September 7, 2009

I'm gonna laugh until I cry....

I wasn't feeling to well this morning, and dreading the thought of having to go to the ER again....And that got me thinking about some of my hospital experiences. A few things I have to say first...I have met true angels in the form of health care professionals, people that God had to have sent down for me at the perfect time, but I have also met some that make you wonder...why? Why did this person choose to HELP others? Also, I want people to be aware, I have spent many weeks in hospitals throughout my life, and some times it is only by Gods good graces that I made it out alive...You have to pay attention, question what nurses are doing sometimes, trust your gut always, and by all means, let them know if something is not right! So here are a few stories, don't feel bad about laughing, I laugh all the time, sometimes even when it's happening.

Here is one of the most recent ones...I am still sporting the little bruise from the tourniquet.
--My nurse was angry that day my friends, and I came in somewhat unresponsive via ambulance. She was complaining about the fact that she was overworked and very frustrated that she had to wait for my answers to her questions between my vomiting. She continued to put my IV in for fluids and a catheter in and about an hour later I was sent down to get an ultrasound. While down there the tech found 1. the tourniquet was still on my arm (tight and bruised) and 2. my catheter was clipped (making it pointless) Nice.

--Once, when I had my gallbladder out, the nurse unhooked me from all my little machines, helped me to the bathroom, and then went to lunch....Jason and my mom found me soon after.

--When I had my biopsy, my doctor admitted that she numbed the wrong area. I passed out.

--On my own, I did a little damage myself. My first day out of ICU, (they use different food trays in there - you need strength to push it down...makes sense to me) On the 3rd floor, you need strength to pull it up, so if you push the button in, BAM, it drops right on the tummy that just received 3 surgeries. That hurt, but no harm done and it's funny now.

--When you are on anti coagulants, and the nurse tells you to put pressure on something, don't mess around, hold tight, because it's not fun having to change beds in the ICU.

--When the doctor tells you not to over exert yourself when first re-learning to walk, LISTEN....or you might end up puking in the hospital hallway in your robe because -- the window IS to far over there.

--Those ones were real, now quickly...just to let you know how wicked the drugs are in there, I'll let you know somethings that I realized later, were.....not. hehe
I swore up and down that one of the nurses promised me a milk shake, and the other nurse took it away.
The old guy (Darth Vader's boss) was in my room for a few hours
I was frustrated, because I was tired and the TV was annoying me so I opened my eyes to turn it off, and it wasn't on.
And the biggest conspiracy, was they had a cake for one of the other new moms in the ICU, but not for me...uh huh. I know there are some more, but that's all for now, let me know if you have any stories...hehe

Sunday, September 6, 2009

Hepatocellular Carcinoma

Hepatocellular carcinoma

Hepatocellular carcinoma

Hepatocellular carcinoma is cancer of the liver.

  • Abdominal pain or tenderness, especially in the upper-right part
  • Easy bruising or bleeding
  • Enlarged abdomen
  • Yellow skin and eyes (jaundice)

Aggressive surgery or a liver transplant may successfully treat small or slow-growing tumors if they are diagnosed early. However, few patients are diagnosed early.

Chemotherapy and radiation treatments are not usually effective. However, they may be used to shrink large tumors so that surgery has a greater chance of success.

Sorafenib toslate (Nexavar), a medicine that blocks tumor growth, is now available for patients with liver tumors.

Hepatocellular carcinoma accounts for 80 - 90% of all liver cancers. This type of cancer occurs more often in men than women. It is usually seen in people ages 50 - 60.

The disease is more common in parts of Africa and Asia than in North or South America and Europe.

Hepatocellular carcinoma is not the same as metastatic liver cancer, which starts in another organ (breast or colon) and spreads to the liver.

The cause of liver cancer is usually scarring of the liver (cirrhosis). Cirrhosis may be caused by:

  • Alcohol abuse (the most common cause in the U.S.)
  • Certain autoimmune diseases of the liver
  • Diseases that cause long-term swelling and irritation (chronic inflammation) of the liver
  • Hepatitis B and C
  • Too much iron in the body (hemochromatosis)

Patients with hepatitis B or C are at risk for liver cancer, even if they do not have cirrhosis.

Physical examination may show an enlarged, tender liver.

Tests include:

  • Abdominal CT scan
  • Liver biopsy
  • Liver enzymes (liver function tests)
  • Liver scan
  • Serum alpha fetoprotein

Some high-risk patients may get periodic blood tests and ultrasounds to see if tumors are developing.

The usual outcome is poor, because only 10 - 20% of hepatocellular carcinomas can be removed completely using surgery.

If the cancer cannot be completely removed, the disease is usually deadly within 3 - 6 months. However, survival can vary, and occasionally people will survive much longer than 6 months.

Preventing and treating viral hepatitis may help reduce your risk. Childhood vaccination against hepatitis B may reduce the risk of liver cancer in the future.

Avoid drinking excessive amounts of alcohol. Certain patients may benefit from hemochromatosis screening.

  • Gastrointestinal bleeding
  • Liver failure
  • Spread (metastasis) of the carcinoma

Call your health care provider if you develop persistent abdominal pain, especially if you have a history of any liver disease.