THIS AND THAT

My best friend Sue (Roller) Twiest, my son Charles when

he was much younger, and myself. Taken in Lutsen, MN.

I took an FMLA day today. I woke up feeling lousy with muscle and joint pain and other HCV symptoms. It's not fun living with liver disease. On the other hand, I've always had a very strong constitution. It's hereditary. I come from good strong sturdy peasant stock. As a Mayflower descendant, I enjoy strong healthy genes. All the weak genes died out that first winter that was so harsh and that killed half the residents of Plymouth Colony.

By this afternoon I had bounced back. Two extra-strength Bayer helped. I decided to spend some time with Gym. This time I ran a mile around the track. That's 14 laps. Then ten miles on the stationary bike while reading more in Rob Hahn's book. After that one of the weight machines. Then the stair climber while watching the tv that's embedded in the apparatus. All that took up over an hour. Time to hit the pool.

I spent about an hour in the pool swimming laps. I love swimming. The pool was nearly empty. I suppose most people were still at work. Back and forth, forth and back, breast stroke, back stroke, scissors kick, then back to the regular swim stroke. I was starting to feel good.

Jacuzzi, steam room, shower. Time to go back home. Nap time.

Tomorrow after work I get to meet my trainer. Nate. Oooh la la. Oh wait, what if Nate is short for Natiana?

I lost another five pounds. I can hardly wait for spring. Then I can run in the huge park that's adjacent to my apartment complex.

On March 11, I get to find out how my liver's doing. I go in every six months to see Gina Storres, nurse practitioner for Minnesota Gastroenterology. Sometimes I see Dr. Coleman Smith, one of the best experts on hepatitis C in the Twin Cities. My blood is tested for various things, such as ALT, AST, cholesterol (mine has been way too low), thyroid, etc. Then I'm sent to St. Paul Radiology for an ultrasound of my liver. So far, even though I have a cirrhotic liver, it's well compensated. Decompensation could occur anytime. That's why they do the ultrasound every six months. It tells them if there are any tumors and whether the portal vein is still functioning properly. So far so good, but that could change in a heartbeat. After all, I had no liver damage for decades, then suddenly it went from stage one, grade one (which signifies minimal damage) to cirrhosis in less than three years. With cirrhosis, there is also a risk of developing liver cancer. Some think I must have been a heavy drinker or I wouldn't have cirrhosis. That's false reasoning. I have never been a drinker. Never liked the taste, plus I get enough headaches. Lots of people have cirrhosis who have never been drinkers. You can get it from HCV, HBV, auto-immune hepatitis, fatty liver and other medical conditions.

How do I cope with chronic disease? Except for the times when I have medical appointments, I try to ignore it. I know it's there, but I try to keep busy. That way I don't think about it. I'm very busy with Toastmasters, DAR, Red Hat Society, and now I'm also active politically. Not to mention my full time job and the hours I spend blogging.

The only thing I wish for is a better support system. I used to go to LiverHope, but they're not so active anymore. Most of the members either died or cleared the virus with treatment. Unfortunately, I was a nonresponder to treatment. A good support group is an excellent thing to have. Only other heppers know what it's like to live with this. Some of my friends try to understand. Some of them have medical issues of their own. Ain't life grand!

On the other hand, I enjoy spending time with people who aren't aware of HCV and its effects. It makes me feel normal again.

I also enjoy meeting new people and learning new things. And maintaining hope that the FDA will soon approve the new protease inhibitor that will be added to the treatment protocol.

Meanwhile, I enjoy listening to music. Happy music makes me feel better. It makes me smile. Watching Savion Glover tap dance also makes me smile. Thinking of my new political friends makes me smile too. Thanks Holly, Orrie, Mark, Katie, Brian, Gene, Frank, Elizabeth, Ryan and everyone. My life is richer for knowing you.

PAUL WELLSTONE CARED

This is a picture of Senator Paul Wellstone with Helen Clark and Pat Buchanan. The two ladies came all the way to Washington D.C. from Minneapolis to talk to Wellstone about hepatitis C. He listened to them and he cared. Pat and Helen attended HFI’s 3rd Annual National Hepatitis Congress and Walk on Washington March 25th, 26th & 27th, 2000. They managed to visit with six different Congressional aides and one Senator, all in one day. It was an amazing feat in itself just doing the walking between buildings on Capitol Hill. They think they got the word out, so the trip was worth it. Helen and Pat were the co-facilitators of a hepatitis C support group in the Twin Cities called LiverHope. There was also a HepFest every August at Pat's home in Brooklyn Center, MN. Unfortunately, many of the heppers have since passed on.

This was Pete Gilbertson, otherwise known as Da Yooper because he was from the UP of Michigan. That's my son Marcus with him when he was 12. The puppy was adorable. Pete named her Hope to remind him that he had hope to get a new liver. Unfortunately, he didn't. The VA let him down and he died of liver failure, which is a complication of hepatitis C. We miss him.

May your hepatitis C dragon always be sleeping. Click on the dragon to see it move.

This is a picture of some people at HepFest, Brooklyn Center, Minnesota.

Please stop by and take a look at the Hepatitis C Memorial Wall. The deceased listed here are only a drop in the bucket of all those who have passed on from this tragic and devastating disease.

The Hepatitis C Generation - Newsweek, January 2010

A Personal Story from a Hepatitis C Patient

Hepatitis C: The Insidious Spread Of A Killer Virus - Newsweek, 2002

There are an estimated five million people in the United States with hepatitis C. Most do not yet know they have it. Please ask your health care provider for the simple blood test.

My name is Colleen Morse and I have hepatitis C. I got it in 1969 when I let those two nice young boys put a needle into my arm. Or perhaps it was in 1972 when I gave birth to a 9 lb 15 oz healthy baby boy and had to have packed red blood cells because I almost bled to death. I didn't find out I had it until the early 1990's, as by then the virus had been isolated and the blood test became available. I had no symptoms until about 1998. The symptoms then came on gradually. I had three liver biopsies, each three years apart. The first two showed very minimal liver damage at stage one, grade one. The third biopsy showed a sudden progression to cirrhosis. I thought that was unfair, since I have never in my entire life been a drinker. I now know that anyone can get cirrhosis, even children.

Currently my liver is still well compensated. When it becomes decompensated, it's time for evaluation for transplant. I don't know if I'll go that route. I've lived a fairly long life. I'll be sixty this April. I'm not sure how that happened. Besides, I'm still the same person on the inside. I just look a wee bit different when I look in the mirror now. I can ignore that.

I involve myself in a lot of activities so I don't have time to notice the symptoms, which are now worsening. They include fatigue, muscle and joint pain, a bit of skin itching, a messed up thyroid, etc. My liver is not manufacturing enough cholesterol now. The last time I had it checked, my total cholesterol was only 79. It keeps going down. They don't like to see it get under 100. Another problem is that my liver has decreased its making of vitamin D. Now I get to take prescription supplements.

Oh well, ya gotta die from something. My Uncle Gerald used to say, "What's the difference if you die now or twenty years from now? It won't matter once you're dead." He lived to be 94. He said that at age 40 because he lost a kidney. He lived 54 years with only one kidney.

The main problem is that hepatitis C doesn't get nearly enough funding. There are four times as many people with HCV as there are with HIV. Yet HIV gets a lot more funding. The HIV activists were always very good at organizing for their cause. Now, though, over fifty percent of those with HIV are co-infected with HCV.

I'm so tired of living in a state and a country and a world where the government officials don't care that people are dying. Thankfully there is now a bill in Congress. But will it pass?

This is the reason I sent the email to all the DFL gubernatorial candidates. I wanted a response as to how they will address this problem should they win the governorship. So far I have only received one reply, and that was from a staff member of Matt Entenza's campaign. At least they replied. I did receive another reply, but that was a brush off, as though this issue that affects so many is not important. I was devastated.

I'm a member of the reNEW.MN Campaign and of TakeAction Minnesota. One of the visions of reNEW MN is "We want to live in a Minnesota where the inherent worth and dignity of every person is recognized without exception." The candidate who brushed me off did not recognize my inherent worth. Instead, he made me feel worthless. Yet I make excuses for him. Oh, maybe he was just having a bad day. Oh, maybe he was too busy campaigning. There's something wrong when campaigning takes away from your humanity and compassion.

That's not the kind of state I want to live in.

I hope the other eight candidates will respond to the email I sent them. I hope they respond soon. Their answers will be submitted to the reNEW MN website.

Colleen Morse

White Bear Lake, MN

LETTER TO PEOPLE WITHOUT HEPATITIS C

This is a letter that a fellow Hepper wrote to her friends, family and acquaintances who do not have hepatitis C. This is something that everyone should read, particularly candidates and legislators, so they can understand what those with chronic illnesses are going through. Scroll down beneath the pictures for the letter.

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 still

worry 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

* hemodyalisis

* 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.