Dear patients of liver punches:
I would like to share with you my experience of the hep C therapy, much of the protocol made available to the patient is as much smoke and mirrors as it is speculation given the progress and research at this time is now antiquated and not used. For example, if you had ever seen the movie sleeper that implied that all the things we thought in the 20th century as being bad for you like cholesterol and salt; they now consider things like cake to be healthy and in only six years the entire theory of the procedures were turned upside down and considered wasted time and effort regarding how far the damage from hepatitis C has progressed when you are in the beginning of stage I.
In 1999 my domestic partner and I came to my primary care doctor for a safe sex screening before becoming domestic partners. Everything came back okay since neither one of us was promiscuous. The Angel of death AIDS had passed over us. However when I was four I had a transfusion after being hit by a car and contracted hepatitis C.
Kaiser did not know at that time what this antibody truly was when the first results came back. It became a goal of mine to find out exactly what this mysterious element in my blood was. I requested that they look into it further and they found that I had dormant hepatitis 1 a, considered the hardest to render inactive or dead though it is never truly eliminated from your body but is considered dead if it is so low on the scale of HCV count that it is considered undetectable.
In the year 2000 while trying to build my career I had just received my real estate license. Kaiser Walnut Creek was in need of people to participate in their trials for hep C therapy. Since my HCV level was so low even though I had carried it since I was four years old they thought I was a great candidate to go to the Pegasys therapy and I was told that I wouldn’t have to worry about it destroying my liver.
Coincidentally my domestic partner lost his father to an inherited disease that does not allow the body to pass iron through the liver and died on a waiting list within six weeks of diagnosis. Thinking of my partners very small circle of relatives and the tragedy of his father I decided to allow Kaiser to take the first step which was to do a liver punch.
I had to travel to Walnut Creek to have the location of my liver located through a handheld device called an ultrasound. Kaiser staff located my liver and spent almost 20 minutes deciding where to mark with a sharpie permanent marker for the doctor to do the punch the next day.
I returned to the same facility the next day and with a shot of local anesthesia was laid on a gurney. Using a small device that looks like a syringe with a spring they did deliver the punch on the mark.
It feeling like I had the wind knocked out of me. Though it was painful even with the anesthetic. By the time the shock wore off the pain was about the same and lasted for about two days. Kaiser made the procedure sound extremely dramatic yet they did not render me unconscious nor prepare me for what to expect including the dangers involved, including internal bleeding, puncturing alone and/or another organ and in return I was supposed to have evidence of the damage the hepatitis C had done to my liver to this point.
The results came back showing the sample showed I was technically stage I-.50. My HCV level was below a half of 1 million and it was not urgent but still the Pegasys was offered to me with the condition that I take antidepressants proactively causing me to decide not to go ahead with the therapy. Though they were willing to treat me at that time even though it was not necessary, and liver damage could have been caused by my lifestyle. In the two years that I spent in New Orleans and my new found love for red wine as my partner and myself would take in the attempt to restock the wine cellar that he had inherited from his father who died from liver disease and with a lifestyle change I could of reversed the damage and possibly even reduced my HCV count, though this was never discussed and they were firm on proactively taking antidepressants before I could be authorized to receive the medicine at the time for what was called Pegasys.
Hence, research, research and more research on my part with little help was available when my doctor called me in 2003 at home in the evening out of the blue with her high pitch Sri Lankan voice created an urgency because she and Kaiser Walnut Creek needed patients for new trials. She omitted that this was a trial which with all things Kaiser this was the hidden agenda. She told me and I quote” if you don’t get into therapy now you’ll be in line for a liver transplant where most people die waiting”.
My primary care doctor was under pressure to find patients a.k.a. lab rats for the latest thing. In the interim I had tried to quit smoking and used Zyban that caused so many side effects- blurry vision, loss of strength, ADHD, inability to drive at night, dizziness, headaches, diarrhea, cold sweats, IBS and more. All these side effects just to try to quit smoking. I lost my job when I was to be promoted into management due to the ADHD. An interview with a law firm thought that I was on some sort of illegal drug.
Some people just cannot tolerate any form of antidepressant that is on or off label use for qualifying or holding the cure over someone’s head until they surrender the life altering consumption of medicine for depression when it can take up to 10 different types to find one that agrees with your body chemistry as mine was changed over and over when I tested negative for depression and denying patients treatment because they will not take psychotropics. Mandating the condition of proactively forcing a patient to take psychotropics is now considered beneath the standard of care when they test negative for depression thanks to my arbitration which is my largest contribution to all of those in the future who faces dilemma. moving forward…
After the call from my primary care doctor I was so upset and facing my mortality that I allowed my emotions to overtake my ability to logically think this out and/or seek a second opinion, as it was presented to me there were only so many available places in the program, and if I didn’t act that I would have to wait with the possibility of liver failure which turned out to be a complete lie as documented in my arbitration.
Back to Walnut Creek: They felt that there was a 50-50 need for a new liver punch to see the progression of the liver damage. This time in the same facility of Walnut Creek Kaiser I found myself again on a gurney in a gown in a procession of other patients as they do in Russia assembly-line style.
When it came time for me, they had someone with a portable ultrasound. The surgeon was bitching and moaning about his workload and how it was unnecessary etc. etc. as though I wasn’t even there. They used a gas like the dentist would a few minutes just before the punch and the listing of this man describing how much he hated his job in doing this procedure and then having a mask put on me so that I would not care about the pain. Yet I still experienced the pain which enabled me to actually see what goes on when the procedure is done while in a production line. The entire procedure including the ultrasound that was equipped with a screen on the back of the orderlies hand made the process only take about five minutes.
This same feeling of having the wind knocked out of me or being punched in my center chakra so hard that I jerked. The doctor cursed like a sailor, I lost all respect for those who had my life in their hands and who thought I was unaware of what was happening around me as so often Kaiser doctors talk about their patients as though they are cadavers already, and are so jaded that when they think that they are out of your range they express nothing but disgust for those who need help the most. I thank God the procedure went fine. They went a little lower this time and no longer considered me to be stage I but had progressed to 1.5 give or take one third of the diagnosis due to punching a different spot and only retrieving a sliver of the liver.
Officially the damage and my HCV level had risen to almost 1,000,000. In today’s standards this still does not warrant the toxic treatment and can be controlled by diet and lifestyle changes. From what I understand you can live out a normal life span without going through the Pegasys and the antidepressants as you can come out worse from the therapy than doing no therapy at all.
The cost of the medicine was now an issue. It was thrown in my face by the many doctors at several locations and seemed to be the deciding factor along with, and I quote my primary care stating “Kaiser’s not willing to accept the liability of a possible suicide if you’re not on antidepressants.” In the long chain of command the cost and how lucky I was to receive the medicine was brought up again and again. For the actual treatment I had to reach the nurse that actually monitored the administering of the Pegasys which told me they would be testing to ensure I was taking antidepressants that again were changed more times than I can count.
In 2003 at that time you needed to mix a pill or tablet in the interferon and shake it waiting for the tablet to dissolve completely and using the needles provided wrapped up in a crude bundle of boxes. In this stage of development with hepatitis C medicine it was very crude and left room for pill splitting, not adjusting for your weight, using all the side effects that you would experience blamed on the Pegasys.
I found out later that this was completely false and that what I was experiencing and what kept me out of work was actually the antidepressants I had surrendered to. Due to the crudeness of the medicine and to quote a doctor in Sacramento ”they screwed up your therapy because they didn’t adjust it for your weight”.
All the pain medicine along with countless off label drugs had given me dozens of symptoms, put about 60 pounds on me and I spent almost 9 months on the therapy in current protocol. All further progress was reversed by a flu and pneumonia shot that had a black label warning not to be given during an immune compromising therapy. This information was discovered much later and the flu shot was erased from my medical records.
I went through a second course of treatment after waiting a year but was given Elavil at low doses and was healthy enough to work as a loan officer doing mortgages 12 hours a day with a short nap in the middle of the day.
Staying on subject: My third liver punch was given to me in Hayward and this time it was between my ribs at the top of my liver which was a completely different area than had been tested before and which gave me the results of .50. I reported to the facility and within an hour I had a kind doctor put me completely under to do the punch. I awoke to the same feeling as though I had fallen and landed on my chest which again lasted for several days.
If you do not have this kind of pain it means that they didn’t do it.
After a new form of interferon ribavirin treatment they came out with pre filled syringes and it was adjusted to my weight but they made the mistake of giving me another flu shot and then three days later a pneumonia shot 10 years early after I had cleared the virus and was on maintenance. This reversed the progress after the virus being declared inactive grew to over 2 million overnight and the day after the pneumonia shot I woke up paralyzed from the neck down.
It cost me my home in Pleasanton, Calfiornia and I had to go to arbitration. All of my Kaiser providers except for one lied about almost everything possible except for the behavioral medicine personnel that was ordered to put me on antidepressants and when asked what do you give a patient who tests negative, my primary care stated that they put them on anything or he won’t be able to get into the program and then lied about it in court. Since this person in behavioral medicine was part-time and her pension was not on the line it empowered her to tell the truth causing the ruling that withholding treatment from a patient that does not suffer from depression and refuses to take antidepressants until depressed is now in Kaiser considered beneath the standard of care.
Unless you pull your records once a year from both Kaiser and if you have disability insurance chances are they have the records you will need to step up and face the beast.
In closing, if you do not feel like you fell out of a window and landed on your chest or ran into a waist level solid object and have a hard time catching your breath with the pain of being punched just under where your ribs divide you have not received a liver punch. I have heard rumors of people going into the procedure and coming out without a mark, nor not having pain. Today it is considered to be unreliable and not worth doing especially if they keep changing the spot that their punching as cirrhosis starts at the bottom edge and works towards the center.
If they keep changing the spot and move higher for a better result to convince you that you do not need this expensive medicine please obtain a second opinion as there are many ways to judge a liver and this function.
Dear patients of liver punches: