This is Pete Gilbertson, known as Da Yooper, with my son Marcus and Pete's new puppy that he named Hope. We lost Pete to complications from hepatitis C. He never had a chance, as the VA wouldn't put him on the transplant list. He died waiting for a liver.
This was taken at a Minnesota HepFest. This was a week of fun and education at a home in Brooklyn Park. People came from all over the United States. Roche and Scherling often paid for food to be catered in.
LiverHope Tent at Gay Pride Festival, Minneapolis
Hepatitis C Quilts Displayed at Minnesota HepFest
Here's the Letter to People Without Hepatitis C
Having Hepatitis means that many things in your life change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects. Of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand, these are the things that I would like you to understand about me before you judge me.
Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I stillworry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
Please understand the difference between "happy" and "healthy." When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome to do so.
Please understand that being able to stand up for ten minutes doesn't necessarily mean that I can stand up for twenty minutes or an hour. And just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed or you can move. With this one it gets more confusing.
Please repeat the above paragraph substituting sitting, walking, thinking, being sociable and so on ... it applies to everything. That's what hepatitis C does to you. Please understand that HCV is variable.
It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute. If this happens please do not take it personally. Please understand that getting out and
doing things does not make me feel better. Telling me that I need a treadmill, or that I just need to loose or gain weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct. If I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, hepatitis C often causes secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.
If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with
hepaititis then we'd know about it. This is not a drug company conspiracy. There is worldwide networking (both on and off the Internet) between people with hepatitis C. If something worked we would KNOW.
If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me. --- Authored by Bek Oberin
NOTE FROM COLLEEN MORSE
The letter above was written by a patient sick every day with hepatitis C. This is a virus that not only attacks the liver, but is also systemic. Upon autopsy, the virus has been found in every organ, including the brain. Some people with HCV have more symptoms than others. Some become incapacitated early, some later. Usually it doesn't cause serious problems until you've lived with the virus for 20 or 30 years. I personally got the virus in 1969, although it wasn't diagnosed until the early 1990's. At one point doctors called it non-A, non-B hepatitis. They knew it wasn't A or B, but had no idea what it was. Finally HCV was isolated around 1992 and tests became available for the blood supply.
The biggest risk factors for hepatitis C include:
* blood transfusion before 1994
* tatoos done before the tatoo parlor sterilization laws went into effect
* intravenous illicit drug use, even if only one time on an experiemental basis
* sharing straws for sniffing cocaine, even if only one time
* sharing manicure scissors, razors, toothbrushes, etc., with an infected person
* medical personnel who received an accidental needle stick
If you have any of these risk factors, get tested for hepatitis C as soon as possible. It's a simple blood test that tells whether you have the virus.
There is treatment available for hepatitis C. This consists of a combination drug therapy which includes self-administered shots of interferon either daily, a few times a week, or once a week, depending on whether you're using a pegylated interferon. The other part of the combo is a daily ribavirin pill. This combo treatment has many side effects, including flu-like symptoms, rashes, serious depression, muscle and joint pain and many others. Some have side effects from the medication to such an extent that they have to go off it. Others tolerate it fairly well. The treatment must be adhered to for 48 weeks for genotype 1 patients and about six months for genotype 2 and 3. Patients are tested 12 weeks into the treatment to see if they are responding. I tried the combo treatment and tolerated it very well, which is unusual. Unfortunately, at 12 weeks it was determined that I was a nonresponder, so they took me off of it.
There are currently new drugs in the pipeline. The most promising could very well be a protease inhibitor that is added to the combo treatment. The biggest side effect in the clinical trials is a rash so nasty that 30% of patients end up in the hospital. This drug is currently in stage 3 clinical trials and is on FDA fast track.
I've now had hepatitis C for 40 years. A few years ago my liver finally turned to cirrhosis. The good news is that it's well compensated. The bad news is that it won't stay that way forever. When it starts to be decompensated, it's time to get evaluated for liver transplant. If I decide to go that route.
If you're looking for a charity to donate to, the American Liver Foundation could certainly use your support.
If you know anyone with hepatitis C, try to understand what they're going through. Some days they feel very depressed. Some days they feel pretty good, although most have forgotten what it's like to be in excellent health.
An important thing to remember is that hepatitis C is not easy to get. The mode of transmission is blood to blood contact. You can't get it from being around someone, sharing their food, drinking from the same glass or hugging and kissing. It's not an STD, either.
To legislators who may be reading this: Please keep liver disease in mind when making new legislation. HCV doesn't have the funding that HIV does, even though there are four times as man HCV patients as HIV patients. Some patients are co-infected.
Thanks for listening.