Sunday, August 9, 2015
Tuesday, January 31, 2012
Looking Ahead At Hepatitis C As Health Reform Is Initiated
By William Remak, Chair, National Association of Hepatitis Task Forces
For two decades since efforts were made to ensure our national blood supply was safe from hepatitis C we have seen steady progress by the pharmaceutical and bio-tech industry to find pathways to prevent and further detect this disease and also treat those that had an exposure and developed a chronic hepatitis condition. We have identified behaviors and cultural situations in our society that with some modification could have a significant impact on controlling the spread of disease and help prevent new incidences of disease in a number of ways. Caution and safety education has been strengthened and OSHA Blood Borne pathogen education and the monitoring of universal blood precautions in medical settings is improving due to the high profile outbreaks that have driven public opinion towards teaching patients to be more observant regarding their care and efforts by HHS to reduce medical errors and hospital borne infections that lead to hospital re-admissions.
In the new healthcare paradigm we are concerned with attaining outcomes that achieve our patient’s expectations and ideally produce real wellness by encompassing the patient as an entire human being both physically, mentally and culturally as is appropriate to their health needs. This is what we call “Patient Centered” healthcare. To deliver this care it will have to be coordinated well so that the most effective applications and management of care is shared with the entire team that interacts with the patient so that the best possible outcomes are within reach, produce the desired result and are affordable. Research in this arena is being done, information on models of care and how our healthcare workforce can be best utilized and effectively communicating and sharing data is being evaluated and will be easily accessible. A system where care is better managed, coordinated and continuity exists which will bring us to new heights in reducing costs of delivery and quality of outcomes while preventing the potential for chronic conditions.
To prevent new incidences and curb the spread of hepatitis C it is essential that education and general awareness of the issues related to transmission are common knowledge to the general public. This orientation should begin in middle school with education about liver wellness and expand further in high school to cover infectious diseases. Occupations that are engaged in hazardous activities where the possibility of exposure to blood exists need to take better and safer measures to protect themselves and others.
The research and developments of treatments for people with hepatitis C in society are driven by commercial interests and although these drugs do mitigate disease for a segment of society in the short term they do indirectly detract from funding developing medications that are easily tolerated with little to no side effects, accessible, easy protocols to adhere to and efficacious for most people. From a global perspective these drugs are available to less than 10 % of the earth’s population impacted by hepatitis C. Other avenues over the long term that will completely eliminate a disease globally are our best investment and that is where vaccine development is initiated in a multi-national non-profit collaborative research initiative. Regenerative medicine research is already making headway using this approach. The major health foundations on the planet are working with antiquated global burden of disease statistics with regards to infectious diseases and therefore are mis-directing funds towards other less catastrophic areas instead of hepatitis C where an epidemic spiraling out of control already exists along with long term economic implications as a devastating loss of production in our societies industry’s is growing. The mortality and costs are rising in greater proportions. That said, scientific bio-medical research in the life sciences and comparative effective research are the keys to gaining a foothold on this disease as can be said for cancer, heart disease and diabetes and other chronic conditions over the long term
The political will within our country at state and federal levels should be placed where it will best serve providing a vehicle for citizens to become more healthy, better educated and more productive in the fields that provide growth for their family, community and the potential for a future where they can fulfill their expectations, to live up to their full potential for success and dreams. The Affordable Care Act provides a pathway towards access to better health in 2014 but it is each citizen’s responsibility to themselves and their family to accept the challenge to improve their health and well-being so that they can flourish in today’s world regardless of the challenges we face so that our visions can be realized for the future. The leaders serving the people must serve the people’s interests rather than their own and always put the constituents first rather than the special interests of political brokers and lobbyists.
There are those that advocate for a survival of the fittest and are convinced that they are the ones that are privileged and destined to prevail but that flies in the face of our culture which looks after our own and protects the innocent, frail and elderly. We see those that would tear down the safety net health programs for the youth, the aged, the disabled and the poor because down the road the problem can be kicked like a can to our unsuspecting future generations or next administrations to handle. That is not the course to take but to stand firm and allow the transitions to occur that will transform through innovative actions and programs the building of our health system so that the disparities and human rights concerns become a thing of the past and that we all have a way to achieve better health and that those with hepatitis C will not need to agonize over the thoughts of their final wishes.
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William Remak, BPHA, BSMT, SGNA, AHCJ
A onetime laboratory scientist at UCSF, William Remak is a survivor of liver cancer and two liver transplants. The organizations he established to help patients with liver disease have grown into networks in 26 states. He chairs the National Association for Hepatitis Task Forces and California Hepatitis C Task Force, and is on the Board of Directors of the California Chronic Care Coalition and also the FAIR Foundation. He is a member of the Marin County Pharmacists Association, Stem Cell Action Coalition and also serves as an adviser to the Pharmacists Planning Services, Inc. In his free time he enjoys serving as a volunteer and staff officer in the United States Coast Guard Auxiliary now in his 27th year. He has four adult children and three grandchildren. Mr. Remak resides in Petaluma, California. E-mail William Remak at email@example.com.
© Copyright 2012 – William (Bill) M. Remak All world rights reserved.
Wednesday, September 12, 2007
As I sit here to write my story I honestly cannot help but think of those I have met or talked to over the phone that are suffering or have since died of liver diseases. Most of them are afflicted with hepatitis. Illness of any kind is a terrible burden and those with hepatitis need not be ashamed for being ill or beat up themselves for how they think they contracted it.
Some human decency still exists in society and compassion may be found where you least expect it.
I survived to experience life with new eyes and love from family and friends. There were times when the thought came: "Why me, why did I survive and others not?" Was it guilt? Did I cheat death because God loved me more than I thought?
I will let you in on the secret. As you read this, if you are a patient, spouse or loved one who cares about this, think of the many millions who are in absolute misery with liver failure who are beyond treatment or will die before an organ is found for transplantation or a medication that helps them. Decide you will do something constructive to help those people too, so that they may have a chance to survive now and for future generations.
It is for those I have lost and the ones that are losing the battle that I write this:
I am an adventurer at heart and love to take challenges even when I know it is too much.
Jack London, my favourite author once wrote: "I would rather be ashes than dust" I would rather that my spark should burn out in a brilliant blaze than it should be stifled by dry rot. I would rather be a superb meteor, every atom of me in a magnificent glow, than a sleepy permanent planet. The proper function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time."
At the age of 15, I became ill and fainted and was taken to the nearby hospital where I was admitted with a fever and given anti-biotics for several days. My condition improved and after the fifth day the doctor said that I had an acute attack of hepatitis and was now well enough to go home. I knew nothing. I didn't have any idea what the illness was! He said I might have gotten some food poisoning and wanted to know if I had eaten from any canned foods. It was a mystery at the time and since I felt better, I didn't care and went about my life, as most kids 15 years old would do.
I didn't care for joining those who would excessively drink on the weekends and was a bit shy around girls. I did not take any intravenous drugs, as everybody I associated with knew that it was stupid and dangerous. My musical buddies from school would smoke a little pot and that was cool. The guys that would drink were "rednecks". We kept our distance from them because they did not like kids with long hair and would try to provoke fights with us.
On the weekends during the summer we would often go into San Francisco, which was about 30 miles south and listen to the rock bands play in Golden Gate Park. Most of those bands we heard then became music legends and some of the great band members are now deceased. We certainly loved the music. My friends and I were really "into" the musical scene. We talked about it on the phone, wrote songs, discussed which musicians were good and who wasn't. Just like kids today talk about computers and games.
Well, life went on and when I was 17, I met the first girl I fell in love with and became so much in love that I could not see straight. My friends thought I was from another planet and dazzled by being in love. Unfortunately, the girl I was in love with went away to the University of Florida and fell in love with the school football team quarterback. I physically felt great at that time in my life and seemed unaffected by the virus that was slowly spreading throughout my body.
In Denmark - Again Hepatitis was discovered
But six years later, at 23, I began to feel some discomfort and slight pain and pressure in my stomach and went to the doctor to find out what it was. At that time I was a student in Denmark. I was referred to the hospital for blood tests and X-rays. A camera on a long tube was shoved down my throat to take a look at my digestive system and I got to watch in on TV as the procedure was taking place.
It was very unpleasant and made my throat hurt but fortunately there were no commercials and it was over in less than 15 minutes. This examination is called gastroscopy. The heptologist at Hvidovre Hospital near Copenhagen were convinced that I had non-A non-B chronic persistent hepatitis. Today known as Chronic Hepatitis-C.
Four doctors there were interested in my case and asked me to come in for a liver biopsy and blood tests. They said there was nothing they could do except monitor the disease carefully and that it might even some day become dormant but we would just have to wait and see. Subsequently I had a biopsy each year and twice a year I went in to the lab for blood tests. Still there was no treatment given and after a while the discomfort was something I got used to and didn't notice anymore until the fall of 1994, twenty-six years after the first hospitalisation at the age of 15.
Back in California - The symptoms and first surgery.
I was experiencing terrible, painful cramps in my abdomen and couldn't eat or sleep. I was fatigued and exhausted from enduring the pain and from the lack of sleep and was extremely weak. By this time I was back in California and went to a local clinic near San Rafael and was referred to the best gastroenterologist in the area who happened to have a private practice nearby and also was an associate professor at the University of California, San Francisco Medical Center.
I received many more tests and it was decided that I had a gallbladder infection with stones and that a hernia repair and liver biopsy would also have to be done. There was no question; the gallbladder would have to be removed. This was to be done by a local surgeon at the Marin General Hospital in Marin County, the same hospital where I was born. I was very worried, as my mother had passed away five years earlier from bile duct cancer. I had concerns that there may be a tendency to have liver illness in my family because my brother and mother had liver related difficulties.
What was to be a procedure that would have normally taken a little over an hour, took nearly four hours! My liver was so scarred that it was very difficult for the surgeon to get at the gall bladder to remove it. The surgery was a success, thanks to a very dedicated surgeon.
Cirrhosis and going on the transplant list
That was January 1995, but the bad news was that cirrhosis was already very well established in my liver and that I would be referred to UCSF, to the transplantation screening and evaluation process, called phase one and phase two. My specialist also referred me to Dr. Teresa Wright at the VA hospital in San Francisco to see if I was able to meet the protocol for a research project on interferon. I had low platelets and my cirrhosis was advanced which disqualified me from the study. The good news came after about a month of careful screening and evaluation, I was qualified and accepted on the transplant program. My name was entered on The Universal National Organ Sharing list also known as UNOS. I was ecstatic!
Waiting and preparations
I got really busy when I received word I was listed. I had already joined and become involved with The American Liver Foundation and Joan Gallagher at the New Jersey headquarters helped me set up a transplant fund, to help cover the cost of " at home care" after recovery. I had also to make my final arrangements at a funeral home, just in case.
The transplant department team were very clear to communicate the risks involved. I did some fundraising for myself and my family helped immensely. I filled out an irrevocable power of attorney.
While I was preparing to face the most eventful occurrence yet, I was constantly seeing the doctors who were working to keep me stable and as comfortable as possible. I also attended support group meetings at the hospital and even started my own group closer to my home. I had to deal with the bureaucracy of the American and California health care systems, which I completed successfully by being persistent and enlisting the help of local politicians. Waiting for an organ was making me crazy, angry and frightened.
I was irritable and argumentative with Rebecca, my partner, and sometimes agonized over thoughts that an organ would not be found until it was too late. I was not at my best.
Sometimes, I could not get out of bed in the morning. There was also fatigue, difficulty walking, sleeping, stress, erectile dysfunction, gas and cramps. There were several important things that kept me going. I stayed positive, kept my sense of humor and had the support of people that truly loved me. My children, Rebecca, my partner and a very dedicated doctor, Dr. Barbara Nylund, MD, Ph.D. who fought for me, kept me inspired. The American Liver Foundation enabled me to do something important like caring about others so I wouldn't feel sorry for my self. I had the ideal worthy purpose to focus on, keeping me mentally fit. Physically, I had been using a cane for over eight months, I kept fit by swimming five times a week I pushed myself. I had to!
I took a trip to visit my sister in November 1997 and was physically having a very hard time. My next regular doctor's appointment was twelve days after my return. On the 16th of December 1997, barely able to walk, I drove to UCSF for my check-up. I was examined and admitted immediately by, Dr. Smita Rouillard, who grabbed a wheelchair, pushed me across the street, up the elevator and into a hospital room on the 14th floor. I was given an IV and several treatments were started to stabilize conditions of serious concern to the doctors.
A diabetic condition had appeared about 14 months earlier and was dangerously unstable and the ascites condition was dangerous and encepalopathy was severe. There were other tests that had to be done but they had to get me sable first. Then the shocker came. They found cancer in the liver and it was active. They wanted to find out fast if it had gone beyond the liver. Flashbacks of my mother's death came to mind and I could no longer hear the words Dr. Nancy Ascher was saying to me. I knew I would have a bone scan the next day, which would determine my fate. While inside the scanning machine, I freaked out and couldn't breathe. The test had to be rescheduled later in the day after I was sedated. The results were negative. Dr. Ascher came to my room and assured me that they were looking for a liver for me and I would have to try to be patient a while longer. She was determined that I would receive a transplant before leaving the hospital.
Waiting at the hospital
I was scared, numb and nervous but I decided to make the best of it: I got the use of an exercise bicycle and forced myself to stay on it for 20 minutes every day. I also made friends with other patients and this helped my spirits a lot between visits from Rebecca, family and friends. Relatives and friends were coming to the hospital blood bank and gave blood for my surgery. They gave at least 12 units! This was normally enough for someone my size, I was told.
The days went by slowly but I was feeling better because of the medicine and the exercise. The staff was wonderful to me. I made sure that they had a continuous supply of low fat microwaveable popcorn to enjoy during their break times. They were all so kind and compassionate even the personnel from housekeeping would laugh with me as I roamed the hallway finding "dust bunnies" for her to remove. Christmas and New Year Rebecca joined me.
We prayed and talked of the future. She was tired and emotionally spent but still tried to put my mind at ease. I had so many things running through my mind. Thoughts of my children and that I promised that they would see me again. I asked myself, "Could Rebecca cope with whatever was ahead for us?" I thought about the past as I looked out the window with a view of all San Francisco at night and sometimes cried when I was alone.
I had roommates very briefly on two occasions while I waited. One man asked to be moved out immediately as he wanted to be alone and the other man was a big jolly Palestinian from Israel who looked exactly like Jerry Garcia. We got along great and he even came back to visit me several days after he was discharged. I called him " Jerry ". He was amused. Patrick and Bill and I became friends and would go for walks around the hospital to see how far we could get away from our ward, like prison escapees. One night we found a small doctor's conference room where they had just left sodas and pizzas and we quickly devoured the first real food we had seen in weeks! Patrick, 41, had his transplant on Dec. 23rd and told me he has not missed a day's work since he returned to his work as a baker in Guam in May of 1998. Bill died in surgery a couple of months later. We were close and he was so proud of his two children, a boy and a girl in elementary school. He was only 37. Pat and I grieved.
The waiting is nearly over
On the morning of the 4th of Jan one of the interns ran into my room at 7 a.m. and asked me if I heard the news. I said: "what is it?" "They may have found you a new liver!" Then she ran out quickly to see other patients. Rounds had started and she had to update the charts before the group of doctors reached each room. My heart leapt.
Three years of waiting was possibly coming to an end! Was this a false alarm? I had to wait a little longer, I thought. The doctors came in and told me that I would have to fast and that if all went well they might be ready to take me in by 04:30 p.m. but they had to get the liver to the hospital first before they could examine it. That day and night, there was a terrible rainstorm going on in Northern California.
Power was out in some areas and there were blizzards in the Sierra Mountains. I just had to wait. I paced the hallway and at one point took the elevator down to the ICU on the 9th floor to tell the charge nurse that I was going to be there later. When I got to the desk I saw my name already on the board assigned to room one, just to the right of the nurses station. I went down to the pathology department on the 5th floor at least ten times to see if the liver had arrived for me. No news!
At about 10 p.m. I was tired. I had been told I would have news by 09:30 p.m. and it was past that. Shortly before midnight, with my brother and Rebecca at my side, the anaesthesiologist came into the room and told me what was going to happen. I knew then, IT WAS A GO!!
Rebecca wanted me to lie down and rest and turned down the lights, I was too hyper to rest and jumped out of my skin with excitement. At 01:10 a.m. my brother got me a wheelchair, Rebecca kissed me and cried and we went down to the third floor to Nuclear Medicine, where the first procedure would take place called chemoembolization. The cancer was to be destroyed by this process prior to the transplantation so that when the liver was removed no liver cancer cells would fall off within the abdominal cavity, re-infecting my body.
I was sedated but awake and aware for this part. They gave me some local painkillers by injection. I could hear Rebecca outside the room talking and asking how I was doing and if I was OK. The doctors and technicians talked to me from time to time while I lay there and explained each step they were doing. It was done by 02:30 a.m. and I was wheeled out on a journey to the hallway where Rebecca gave me a kiss and squeezed my hand and we proceeded to the 4th floor to the operating room for the actual transplant procedure.
It was a busy place and they said the doctor would be there in a few minutes and they prepared me. The anaesthesiologist said he would give me something to relax me and then something even stronger and that I might feel warm and to count backwards. I started hearing voices getting louder and louder and some said: "We are all done". I opened my eyes and saw the bright lights of the operation room, the same room I went into! It was over!
I felt great for the first time in over 25 years. I had not felt this much vitality! The soreness where my liver was was gone. I couldn't believe it. At about 09.30 a.m. they wheeled me up to ICU where I received several hugs in the hallway. After 10:30 a.m. they had me settled in the room with bells and whistles sounding off like in a McDonalds restaurant. These were alarms to various machines and pumps and ventilator that were connected to my body. I had over a dozen lines connected to IV's in my arms and neck. I was very thirsty. They removed my ventilator the first hour in ICU. I reached down to see what was on my stomach and felt the bandage.
I asked Dr. Lake who came into the room if they got all the cancer and he said," yes" and asked me, " what do you want to name it?" and smiled. I told him I never felt so good and shook his hand. I guess I was too happy to think of a name or too drugged. Dr. Ascher came in to ask how I was. I said great and thanked her for the miracle and said they are my dream team.
I was able to stand up at 7 p.m. that same day and was moved out of the ICU to the recovery ward on the 14th floor by noon the next day. I wanted to go to the support group meeting down the hall from my room, but I was convinced to stay and rest in bed. My friends dropped by my room after the meeting at 2 p.m. to congratulate me. I was elated and also high on prednizone and kept bursting into tears each time I thought how happy I was to be alive. There was some lingering neck and back pain that subsided by the time I was discharged.
The next five days I was forced to walk the hallways rolling my IV stand in an effort to relieve gas pains and regain my strength. The patients in our ward paraded up and down the hallways like triumphant warriors in slow motion stopping occasionally to encourage those still waiting for their surgery. I walked out of the hospital on the 12th of January in the afternoon. We drove across the Golden Gate Bridge and I said the bridge looked so much brighter. I was so glad to see it again. 15 days later I went back and had the 87 staples removed and was home free on a fast track to feeling like new!
The donor family
Eight months later I was in contact with my donor family. They are my heroes. Their gift of life saved my life and several others. The donor, a mother of two girls, had a stroke in her sleep. Everything her daughter told me about her and how caring she was for others lives on. Miracles can happen. Transplantation saved me then but it is not the overall solution. The need is far greater than the supply. People should be encouraged to discuss being organ donors with their spouses or loved ones and fill out donor cards as an international humanitarian movement. The donor families of the world make a difference!
Medical cures must be continued to be sought after and organ donation encouraged even more. I am on combination therapy with great success and continue to do very well. No infections or rejections since the transplant have occurred thus far. I am probably one of the first patients that have been restored to good health by liver transplantation through the efforts of medical expertise in Denmark and the United States and my hope is not the last. Worldwide efforts must continue to advance this remarkable science.
Bill Remak, 46 years young.
Photolinks: Bills old liver and the cancer tumor can also be found on this website. Please do NOT look if you are not a strong person!
I, Bill Remak give my permission for Hanne Hedegaard and Jens Jorgen Jaeger to display, print, publish by paper, Internet and Radio and TV broadcast the attached file named ”Bill’s story”. I furthermore give the right to translate the English text into the Danish language and extend the above rights to the Danish text of the same. I release them from any liability by reason of translation and hold them harmless as to content, use of names, locations and timeline. The author, Bill Remak retains the rights of creative license to himself use, extend, modify, edit, re-write into stage or screen script the attached story.
Bill Remak, this 27th day of January, 2000
Den danske hepatitis C hjemmeside ©