The first guest blogger for Liver Awareness Month is Dan Palmer. Dan is a musician and has done much to increase awareness around hepatitis C and liver transplantation. I was introduced to him after someone sent me a copy of Dan’s song, Lactulose Is My Friend. He has a powerful message of hope.
Hello Friends – My name is Dan, and I was diagnosed with HepC about 10 years ago and I’ve been on the National Liver Transplant List since September of 2009. I’ve experienced just about every symptom and side effect that both of those conditions entail, as the virus has run its course in my body. Please know that I’m not a doctor, simply a patient. I write as best I can remember based upon my personal experience. Each one of us is different, and our experiences will each be different. So, here goes:
- If you’re new to HepC, here are a few quick facts to put things into perspective:
- HepC was first identified in 1989 (prior to that it was called non-A/non-B hepatitis)
- HepC is transferred by blood-to-blood contact, not casual contact (very rarely through sexual contact or from mother to baby)
- Reliable, affordable testing was not widely available until 1992, which is when they (who is ‘they’?) began testing the world blood supply
- HepC has a long incubation period in the body (20 to 50 years)
- HepC is the number one cause of liver transplants
- At this point in history, the number one cause of transmission is IV drug use
- Many, many patients cannot identify their mode of contraction
- The majority of newly diagnosed cases are in patients born between 1945-65
- HepC is frequently called “The Silent Epidemic”
When I was first diagnosed, I thought HepC was a death sentence. I only knew one person who was HepC positive. He had relocated450 milesaway from me, so I tried to locate him by calling the last place he worked. No one at his job would give me much information, other than to say that he was taking some time off as he was going through interferon treatment. Eventually, I was told he didn’t work there any longer. I was in his new town a few months later, and stopped by his former job in person. It was then that I learned he was no longer able to work, and they had no way to get in touch with him.
I wasn’t able to contact him for another two years. Finally, I called telephone information and actually found a phone number for him (why didn’t I start there in the first place?). I called, and he answered! I can’t tell you how relieved I was to know that he was alive and well, and virus free. I didn’t realize how freaked out I really was deep down inside, until I began to weep as waves of hope and relief washed over me.
Historically, people just don’t talk about HepC, and it’s not that long ago that it was even more hush-hush than it is now. I am a professional musician/singer/songwriter, and speak freely every chance I get. I’m often approached by people who have been diagnosed but haven’t told their families, friends, co-workers, or even strangers. They feel isolated and alone and are usually both frightened and depressed.
Much of the silence is due to the stigma of drug use frequently associated with HepC. However, due to the long incubation period, combined with the relatively recent testing of the world blood supply, many new diagnoses are still the result of blood transfusions prior to 1992, or even such events as childhood and/or military immunizations that used to be given with reused needles or compressed air injections, both of which have been credited with transmission.
What I’m trying to say is two-fold. First, there is no shame in having HepC. Second, it really doesn’t matter how you’ve contracted it. You have it. So, now what?
After my diagnosis, I was not able to find any doctor in my area that had any in-depth knowledge of HepC. I was told “your eyes aren’t yellow, so you’re okay,” and “your ALT and AST are only about 120, we don’t need to worry about it until those numbers are 300 or400,”and other such things by doctors who should have known better, but then again there wasn’t much knowledge widely available. I was reluctant to even broach the subject of interferon and ribavirin treatment due to what I’d heard about both the cost and the side effects.
After speaking with five different doctors about it and receiving similar reactions from all of them, I began to do my own research. That led me down the path of homeopathic medicine and natural remedies. I tried most of them: liver cleansing regimes, juicing, milk thistle, dandelion root, colloidal silver, N-Acetyl Cystine, oxygenation of my blood, etc, etc.
I monitored my ALT and AST levels because I used to be able to order my own blood tests on-line and have the draws done locally (I don’t have time to go into all of these here, but they’re things you should know, so ask your doctor, or research them for more info.)
Finally, in mid-winter of 2009 I began to swell with fluids. First my feet, then my abdomen ballooned. My trim185 poundsswelled to 250 within a couple of months. I didn’t realize that my HepC infection had led to end-stage liver disease, which is simply cirrhosis, or scarring of the liver.
I often get the question, “doesn’t the liver regenerate itself?” Yes, the liver is the most regenerative organ in our bodies. However, just like any scar on your skin, scars don’t just go away. Instead, scars regenerate as scars.
In June of ’09 I underwent my first paracentesis, a process where they insert a needle into your abdomen and draw out the excess fluids, once as much as16 liters(in about 35 minutes) but for me, normally 10-12 liters. The pressure was building in my system because my liver simply couldn’t process things quickly enough. The backing up of my liver led to my kidneys not working properly, which in turn led to esophageal varices (varicose veins in the esophagus caused by backpressure).
In July of ’09 I fainted and was admitted to the hospital overnight. The next day the varices burst and I went “Code Blue” (no detectable heartbeat). Fortunately, I was in the hospital or I wouldn’t have made it to see the next day. They put26 pintsof blood in me (we only hold 10 pints on average, men a little more, women a little less) through my jugular vein (the only vein they could find, the others had all collapsed), and revived me with CPR.
My story goes on and on from there: hepatic encephalopathy (dementia caused by liver disease), osteoporosis, comas (four), weeks in the hospital (nine or so), bedsores, biopsies, a TIPS procedure (a whole other story in itself), loss of driving privileges, the financial and bureaucratic nightmares of Social Security Disability, Medi-Care, Medic-Aid, etc. I was finally discharged at165 pounds, barely able to walk across the street, and then only with the aid of a walker.
My purpose here is not to frighten or depress you, but to prepare you for what can occur if you don’t take a pro-active role, if you’ve been diagnosed with this commonly misunderstood, often unspoken-of, insidious infection called HepC. I’m not sure that my path would have been different if I had known what lay ahead of me when I first learned of my HepC infection, but I’d have been able to make informed decisions and been better prepared for the journey that has led me to where I am now. I write this to give you my perspective and let you benefit from my experience.
At this point, through the expert care of a skilled team of liver specialists, I’ve been stable for most of the past three years. I walk a tight wire of nutrition, including specific amounts of protein and limited amounts of salt with a careful balance of fluids. I really only take two medications on a daily basis, but have a carefully controlled and timed intake of assorted vitamins and minerals which my liver no longer stores or processes properly. Much of my muscle mass has returned, thanks in large part to my dog who has walked me back into shape. I still suffer from fatigue and require daily naps, but beyond that, I feel pretty good.
As for HepC? I have Type 3, which is considered a favorable genotype. I went through treatment from June through December, 2011. I was not able to take a full dose because of the condition of my liver, but I was able to achieve a non-detectable status after four months, then continued treatment for another 12 weeks (the current recommendation), remaining non-detectable for that period. I was not able to cure it, though. It returned within a couple of months, and as long as I’m feeling good, we’re in a watch-and-wait mode. In the meantime, I’m hoping for new treatments to develop and be approved that will be successful for me.
If I knew 13 years ago what I know now, I would have been much more aggressive in my approach to HepC. I would have been more aggressive in finding a well-informed doctor. I would have been tested for genotype and viral load (not just ALT and AST). I would have taken treatment while the infection was first starting to gain a foothold.
Wherever you are in the journey, I encourage you to face your fears, overcome your objections (“it’s too expensive,” “it’s too hard,” etc.), and face it head on.
If you’ll be pro-active, especially with the addition of Telaprevir and Boceprevir to the treatment arsenal, chances are good that you won’t experience the extreme events that I’ve been through. You won’t have to put your life on hold, unable to work, not allowed to drive, risking death, not to mention financial ruin, etc. You won’t have to endure the anguish and the mental onslaught that both you and your loved ones must endure as you wait and hope for a life-saving transplant.
Now, just a couple of more things. First, it is very, very difficult to go through treatment without help. I am fortunate to have an unbelievable caregiver who’s my best friend, my girlfriend, my partner and soul mate. I’m absolutely certain that I would not be alive if she were not with me. She helps keep track of my medications, my appointments, navigates the paperwork, and so much more.
She didn’t choose this life, and has put her own hopes and dreams on hold while we go through this. She’s been by my side 24 hours a day with only brief exceptions for the last 3 years. The extreme things I’ve been through cause foggy thinking (and eventual comatose periods if I’m not managed properly), and during such times I am incapable of keeping track of my meds and when to take them, or my appointments, and so many other critical issues.
Now that I’ve painted a gloomy picture, please know that my life is good.
This journey has changed me. It has refocused my attention on what’s truly important in life (love). It has given me a purpose in life (patient education and public awareness). I do enjoy every day. If someone is a perpetual source of drama and chaos, they are weaned from my life (please note the word “perpetual,” because we’re all forgiven our momentary lapses). I owe it to myself, to Melisa, and to others who are making forward movement.
I believe that we go through things in this life in order that we can use our experiences to help others through those same things. I’ve been through a lot, and I’m honored to do whatever I can to help others along this path.
To that end, I extend my sincere thanks to Lucinda for letting me share a little with you. Further, I thank you for reading this far. I hope that in some small way you’ve been encouraged by spending a little time in my world, and that you’ll be pro-active in your journey.
In closing, the biggest lesson I’ve learned through my journey is that love is all that really matters.
I wish you peace.
Dan’s Blog: www.caringbridge.org/visit/danielpalmer