Old AOL Journal
10/01/ 2008
10:00:46 AM EDT
No New Date Update
Called yesterday and left a message checking into the status of the clinical trial. I have not hear back yet, so there is no new date to update.
I continue to feel tired with some body aches and lethargy. So I know now that these are just symptoms of the virus. See, it not me or my mileage. That’s the hopeful part. If its just me and my mileage (which no doubt I have and earned, thank you very much) then there is no hope in feeling better. Can’t undo history. But, even if a part of it is HCV, then perhaps I can feel better. Worth a chance.
I have begun to investigate other clinical trials in the Atlanta area. There are a couple I am checking into. All offer the two drug standard of care, but also offer a third drug which is being blind tested against a placebo. If we keep open to all possibilities, some door will open. It just might not be the one we are standing in front of.
Still into changing the nutrition. Eating more green things grown above the ground (making the diet more alkaline and less acidic) and a lot less meat, diary, sugar, salt, or processed products. Feeling better in that regards.
Work outs and training continue to goes well.
At times, the household is a bit emotional. Neither of us want this, but both of us accept that if we (and I certainly know that the treatment is something you go through together, its not all about me) are going to do this, then lets get going.
Keep you posted.
Until again,
Lynn
10/02/2008
9:48:30 AM EDT
Feeling Disappointed
Hearing SRV
AOL Closing Journals
AOL will be closing its journal/blog hosting at the end of this month.
That means I need to copy what I have already posted and find a new home.
This is another example of everything changes. The discipline to to accept it and have the courage to do something different. So it goes.
I’ll keep you posted.
Until again,
Lynn
Monday, September 22, 2008
10:35:00 AM EDT
Feeling Hopeful
Hearing Coltrane
Same-O-Same-O
Wish I had more to tell you. We are still in that holding pattern. Hopefully we can get started soon. Again, you cannot get through or over it, until you start.
Working on getting the nutrition in line. Its funny how no matter where I look, I tend to find what I already know. I already know that we eat too much processed foods that have no nutritional value. I already know that we eat too much salt and sugar, too much dairy, too much meat, and too much in general. Now I have some motivation to act on what I already know. I have been eating less of what I already know I need to eat less of and eating (and drinking) more green things grown above the ground. I think I feel a bit better. They say you can get 30% improvement just by the placebo effect of believing it will work for you. I’ll take 30%.
Coffee. I have often been heard saying that I don’t drink or do drugs, I don’t swear much and don’t chase women, I don’t eat red meat or pork, and I don’t smoke, but I do drink coffee. And now, even that I need to cut down and out. Then, I pick up the Reader’s Digest and see the benefits of drinking what everyone else tells me I need to cut out. I wish the world would simply get more congruent and align itself what what I need. But, that’s not going to happen. So, I am cutting back and out coffee. We will see how that goes.
Its funny who what I just thought was age and mileage, could be simply viral symptoms. I was young and healthy, now I am older and sick (we are just talking physically here, okay?). While I will never be younger, there is hope for being healthier. I have already got my life happier than I ever thought possible. So now lets try to get sicker to get healthier.
Everything chances. Our choice is in what direction. I guess that’s the discipline.
Until again,
Lynn
, September 15, 2008
3:57:04 PM EDT
Feeling Chillin’
Hearing David Sanborn
Nothing New
Yep, nothing new to report.
Symptoms aren’t any worse.
No news on treatment starting. Still planning on end of the month last I heard.
Time is passing pretty fast and we keep pretty busy.
I read several on-line forums on HCV. I know they say don’t, but in between a lot of negative stories is a lot of support and positives. People seem to be handling it and making it. Seems to be a lot of us out here. Kinda makes you feel like you are not so all alone.
I’ll be glad to get this started. Can’t get through, over, or beyond it until you start it. Its a sequential thing.
Until again,
Lynn
Wednesday, September 3, 2008
10:26:46 AM EDT
Feeling Frustrated
Hearing HHDL
End of the Month
Okay, got a call back. Due to a protective government (which is appreciated, even if inconvenient), the study (my treatment) will not start now until the end of the month.
The Doctors sounds as frustrated as the perspective patients.
After a few more weeks of meetings and documentation (having done government grant writing, I can empathize and sympathize), then we can start interviewing, prescreening, orientation, and then the actual 48-weeks can begin (only 2 1/2 months from making the decision to go forward).
Okay, so I have more time to get my body, mind, and support system ready. Like we aren’t already. All dressed up and no place to go. Hurry up and wait. Why does this all sound/feel so familiar? Because it is. Mr. Murphy once again shares a meal.
So stay with me. I’ll keep you posted. In the mean time, life goes on. And so it goes.
Until again,
Lynn
Monday, September 1, 2008
3:04:52 PM EDT
Feeling Restless
Hearing SRV
September 1st Check In
Its September 1st. Labor Day.
Checked in an left a messages that I was still here, available, and waiting. It can’t end if it doesn’t start, so lets get started.
Been reading a lot. Not much of it is positive. Guess it helps to keep my expectation realistic and to be prepared (and yes, I used to be a boy scout, some think I still am).
The fatigue and lethargy/apathy seems to be the worst. Kinda in limbo.
Started looking at going green. Eating foods that are more alkaline and easier on the system. Makes sense. Name a another mammal that drinks milk (especially from another species) outside of their developmental infancy? Name another mammal that eats meat? Name another mammal that eats mostly green vegetables? Get the idea?
Anyway, wanted to keep posting and keep people informed. While treatment has not started, the physical and mental/emotional preparations continue.
To my family and friends, thanks for your support. To my bride, you make it all worthwhile.
Until again,
Lynn
, August 26, 2008
12:36:17 PM EDT
Feeling Thankful
Hearing Wynton Marsalis
More family and more friends
When I was younger I had a cartoon of Ziggy looking up to the heavens from a pitching mound asking, “So when does win a few start?”
A childhood and teen buddy of mine would always say, “Win a few, lose a lot.”
At one time I wore a Saint Jude medal on my motorcycle key ring. Saint Jude is the patron saint of lost causes. I was one.
So when does lose a few start? When do I meet that person that just cannot get their head around who I am now and what I am going through? Everyone is being so nice, and as my wife will tell you, I don’t always do well when people are nice to me.
My youngest son is the tour manager with Hyper Crush. I picked him up in Charlotte NC to drive him to the Atlanta GA airport to fly back to Los Angeles CA for his best friend’s wedding. I am lucky. I have sons I love and I like. Its reciprocated. No matter what happens, we are okay with each other. And this family/friend visit, though short in route, was no different.
My brother visited us. It was his first visit to GA since our relocation for CA 2 years ago. His sister-in-law (my wife and best friend) told him it was a good idea. And it was. My brother has been my longest companion on the life journey this time around. We laughed about so many things, even those we see so differently. He had no questions for me, but his visit was a great statement to me. One of those statements that are accepted as unspoken. I am grateful for my brother and his companionship.
My wife’s family just had a family picnic in Michigan. We talked about it. We don’t know what this year is going to bring for us, so I met her unspoken desire with one word, “road trip“. So we drove 12 hours one way on one day, to spend 5 hours with our family/friends the second day, to turn around and drive 12 hours back on the third day. It was good to see everyone. Again, who says family cannot be friends? Not these people. They get it. What’s more is they have opened their hearts and lives to me too. (Okay, so they must still have some issues of dysfunction based on that error in judgment.) They asked how I was and when did treatment start, but mostly we just talked and laughed and enjoyed the day. Too cool. How do you thank people for just being who they are?
So that is family who are friends. Then there are my friends who act like family. The people I train with at the Roswell Budokan don’t treat me like anything is wrong, like I am fragile (which I am certainly not), yet they ask and support and let me know that if I need anything all I have to do is ask (which they laughingly accept I will never do). They offer their emotional support and their intellectual knowledge about nutrition. A friend of mine once said that the martial gods loved me because I always find great instructors. This place and these people are no different.
What did I do right in a former life to deserve any of this? Its humbling.
Several years ago my life turned around in a new direction, that’s when win a few began. And it continues in that direction whether I find it easy to accept or not.
I know I will meet those who don’t know or understand, and they will be negative and rejecting. That’s about them. I am ready for them. That is something I am trained for.
In the meantime, I am just enjoying my family/friends and my friends/family.
Until again,
Lynn
Tuesday, August 19, 2008
5:41:53 PM EDT
Feeling Thankful
Hearing Jeff Loeb (yes – guitar jazz)
For Others
You know I get a lot more strength out of doing something for others than I have ever gotten for doing anything for myself. Its not that I disliked myself that much (okay, I used to). It just that I love others more.
I had already accepted my condition. The first one being that if you are born you are going to die. (I heard that life is a sexually transmitted disease that is always fatal.) It how you live the time in between. Its not the length, its the depth that mattered. I also remember hearing that the key to immortality is to live a life that was worth remembering. I want there to be stories to tell about my life. And there will be, oh yes there will be.
So my brother is right about his comments. I had to learn to accept and deal with this so that I could get others through it. To stop their fears, I have to tell the truth, and keep telling it. So these disclosures don’t come easy, but they do come from the heart. From my heart to yours, so you don’t have to wonder. There is no wondering how I am, I am fine. There is no wondering where you stand in my life, with deep love deep in my heart.
I was taught that good leaders always lead from the front and lead by example. I want this part of the journey to be no different. I will get though this and I will get you through this too. I need that.
So yes, please comment if you feel like it. Or not. There are many ways to stay connected and in conversation with each other.
Until again,
Lynn
08, August 13, 2008
1:35:24 PM EDT
Feeling Grateful
Hearing John Scofield (yes – more jazz guitar)
Disclosure
Disclosure is an interesting concept.
disclose: to open up, to expose to view, to make known or public, to reveal
I tell people that the truth will sent them free, but usually it will piss them off first. And I believe it when I tell them. And I believe it when I tell myself. I know the truth. It is important to walk the talk. I hate hypocrites.
I think that everyone has some fears about people’s reactions to being told that they have HCV. Took me by surprise. It was a bit of a shock at first. Then it becomes something you accept.
Well, I guess the same is true when you tell other people. I had gotten my head around it, but wasn’t really sure about other people’s reaction. I didn’t think I had any sort of negative fear or fantasy about their reaction, but I must have because I initially find myself a bit anxious about telling new people.
I tend to suffer well in silence and don’t want to share my suffering with others. A couple years ago I had my second bout with kidney stones. My youngest son offered to come over and just hang out. I abruptly asked him if he liked an audience when he was sick. He said no. I abruptly and flatly told him he got that from me.
Another times, years ago, I was laying on the couch watching television. My wife was in parallel process, sharing the space and time, her read and me watching. A few times she mentioned how nice it was to just see me relax. Then the temperature of the room changed, the book came down. She realized that I wasn’t relaxing, I had thrown my back out, couldn’t move, and hadn’t said anything.
My family has asked me to tell them honestly how I am doing. I have agreed, despite my life long tendency, to tell them openly and honestly. But, to me, OK has always meant overloaded but in kontrol. Normal to me is sore everyday (hey, I have the mileage, I have earned it – no excuses and no complaints). So I don’t know that they will believe me when I tell them. They may think I am minimizing, and they ma be right. When I look at my life, this temporary inconvenience is so minor.
So recently I have been disclosing my current situation of having HCV and the pending treatment ahead of me. I wasn’t sure what the reaction would be, but I sure have some resistance to telling people. But, since its going to probably be obvious something is going on with me, I guess I want them to simply know the truth, instead of having to wonder. And you know what, everyone has been very positive and supportive. Okay, a few people get that this is about me and not them, so they just brush it off in a few sentences and get back to what’s important (them). And that’s good too. I realize and accept that this is about me, not them too.
I also remember years ago I shaved off my full beard. A major shock to me because I am the one who had been looking at it 24/7 for all my adult life. When I shaved it off, it was a major adjustment, to me. Most others just acknowledged it and went on with their lives. I did too.
So I have been disclosing to those who have a “need to know” and I have been grateful for their positive reaction and then a return to normal. Because I am normal (okay – normal for me, because I have no desire to be normal by social standards).
This is Lynn. This is Lynn with HCV. See the difference. Yea, me neither.
Until again,
Lynn
0Sunday, August 10, 2008
3:22:28 PM EDT
Feeling Grateful
Hearing Coltrane
Visitation
In the old days I had visitations. Actually they were more like nightmares but were so real that I honestly thought they were visitations.
Also in the old days, family visitations were not always something I looked forward to. Too much fuss about trying to be perfect or pretending to be what we weren’t. And trying to make up the collective minds of people who don’t think alike, its like herding kittens. It was hard just to decide if we were going to dinner, let alone where or when.
But this weekend has been different. It a sorta coming out party. Now that everyone knows I have HCV and will start treatment, and few people have expressed concern and best wished. But, this was the first time we have visitors to actually talk about it.
My in-laws from Michigan came down and my step-son and his sweet new bride from Florida came up. There were a few questions and discussions, but mostly it was just family enjoying being together. And that’s what made it nice. I need to thank them for that, for not seeing the fantasy they may have about what I might go through and just seeing what is. Hopefully they feel assured by what they saw, that I am the same weird sort of a fellow that I have always been and that I am not negative or down about the path in front of me. What I saw was family.
Its all good. The first visitation is positive. Good start.
Until again,
Lynn
08/06/2008
10:03:42 AM EDT
Feeling Relieved
Hearing Al Di Meola (I have this thing about jazz guitar – envy)
Helpless and Hopeless in GA
To me, helpless and hopeless are positive states to be in. Yes, I said positive. I like it, and let me tell you why.
Helplessness is not something that I have always coped well with. The truth is, I used to think I was invincible (before that it was invisible – I thought people didn‘t know I was around – okay I still have a bit of this one). I think there are a lot of beliefs that we hang on to just to avoid feeling helpless. I always hated it when I would ask someone what I could do for them, and they would say nothing. I felt so inadequate to not be able to fix things or to comfort people. Yet, when people ask me what they can for me, I too say nothing. I often have to tell my clients that the reason they feel so helpless is because they are. In this case, I am, and so are my family and friends. There is nothing we can do to not have what I have. There is no going back and there is no quickfix (if there is a fix). I actually find accepting my helplessness feels good. I don’t waste a lot of time and energy trying to do something I cannot do. I once heard that life had pain but suffering was optional and that suffering came from not accepting what is, the truth. The acceptance of the truth means not resisting what cannot be changed. So I sit here with my jazz, my coffee, my computer, my contentment, my HCV, and my helplessness. Helpless in GA.
I know it also sound weird to treasure hopelessness. Of course, I am proud of my weirdness, especially when I look at what we accept aas normal, just don’t wanna do it and you can’t make me). I know hope is supposed to be a good thing. I have to admit, after being a therapist for over 30 year, I find hope to be negative and destructive. Okay, follow this. Think of something that you hope for. Now ask yourself how active you feel. If you are honest, you will say you don’t feel active at all. Hope is a passive emotion. I hope I will win the lottery but I am not even going to buy a ticket. I hope things will get better, but I won’t do anything in that direction. Hope is sitting on the couch wanting and waiting for something but not doing anything about it. In other words, if I am not willing to but in the efforts to make it happen, perhaps I need to take it off my want list. I’ll just keep comparing what I want to what I have and feel bad (equal to the about of discrepancy between the two). So hope is a waste of time and energy. Either do or don’t do it, but don’t just hope for it. I heard that if you hope/wish in one hand and poop/sh*t in the other, you will see which fills up first. So again, I sit with my jazz, my coffee, my computer, my contentment, my HCV, and my hopelessness. Hopeless in GA.
Things are good. Nothing has really changed, but when you are in a good place already, then its already good. Why ask for more when you already have it all (or at least the only things that really matter - the love of family and friends).
Until again,
Lynn
Monday, August 4, 2008
10:15:58 AM EDT
Feeling Disappointed
Hearing Peter White
Delayed Until Mid-September
Just got off the telephone with the research coordinator. Apparently in order to have enough medication for all the arms of the research study, they have to manufacture some more. That pushes the start date back a month. So, instead of starting treatment in mid-August (this month), I will be starting in mid-September.
While this is certainly disappointing, it is what it is. I guess when you go on someone else’s dime, you depart when they are ready for you. But, I have been assured I am still on the rolls and will be called for further screening next months.
My buddy Dave would always laugh when I would say. “Everything is subject to change without notification. Some assembly required but no instructions will ever be included.” Things change.
Until again,
Lynn
Saturday, August 2, 2008
4:33:13 PM EDT
Feeling Relaxed
Hearing Larry Carlton
Symptoms
If I don’t appear to have symptoms, why treat the disease?
Good question. In fact, I think the same way. I look healthy. I am certainly active, especially for my (AARP) age. And the symptoms I have seem like only a minor inconvenience. In fact, I have been explaining most of them as mileage. I even tell my doctors that if I had a car that was as old as I am, that had been in the accidents I have been in, that had the lack of preventative maintenance I have, and has the amount of mileage I have, I would be thrilled if it ran at all. So there you go, I am thrilled. I grew up believing that I would never live past 20, 25 tops. Well I have already doubled that, so half of my life has been free. But, just perhaps, if I knew I was going to make it this distance I would have slowed down the pace. But, probably not.
Okay, so lets look at the symptoms of HCV. Please remember that HCV attacks, infects, and inflames the liver. So HCV can lead to liver disease, scarring (cirrhosis), cancer, and failure. The symptoms of HCV are often due to the malfunction of the liver that filters the blood.
So, here’s my list;
Fever: Not usually.
Fatigue: Yes, I tend to call it being weary. I just figure because I am not getting any younger, in fact I am getting older, that it was natural to be more tired. Perhaps, besides my age, the fatigue is getting some help.
Loss of appetite: Nope, but don’t I wish. I like food.
Nausea: Nope again. A bit of heartburn when I eat too many carbohydrates, but can’t say nausea bothers me.
Vomiting: Nope.
Abdominal pain: This is the one that really has me curious. For years now I do get very sharp abdominal pains. Its like my insides get a charlie-horse. The pain doubles me over and brings on the sweat. Now I have a pretty high pain threshold (according to some, I don’t have any at all), but these things light me up. I stretch and breathe and wait for it to go away. It does and I go on. Perhaps, its just spastic colon, or it could be what they call liver pain. They have been coming more often and more intense. So, I guess I would have to say yes to this one.
Dark urine and light clay colored stools: Nope. I looked. Funny what you will do when you get curious.
Joint and muscle aches and pains: Again, I have a lot of mileage, I still play hard, so sure I have aches and pain. I earned them. But, again, perhaps, they are getting some help and I don’t have to feel this way. That would be cool.
Jaundice: Nope. I tan easily, but I don’t look yellow. Do I?
Headaches: Okay, I get stress, sinus, and migraines. Had a few head injuries, so never thought much about it. Years ago I had a complete MRI of the head and they said I had a “torturous bulbous void”. Don’t know what it means, but its been a great excuse ever since.
Generalized itching: Again, got some skin stuff going on. A minor nuisance. I can actually get skin welts just from laying my arms on my own guitar. Goes a way in a few minutes, so I play on. Sorta figured it was some systemic allergic reaction, but perhaps not.
Loss of weight: Obviously not. The loss of weight is usually associated with the lack of appetite, which we have already established does not pertain to me. But, because the liver deals with sugar (can cause hypoglycemia), there is a possibility of actual weight gain. I would love to be able to blame my weight (which has been getting harder and harder to control) on a medical condition which has the potential of clearing up. We’ll see. Oh yes, we will see.
Anger and depression: Perhaps due to generalized physical symptoms, HCV can cause anger and depression. Well, can’t say I feel either of those. I don’t take things too personally, so its hard to get me angry. I tend to focus on a positive direction for the future, so its hard to be depressed. If I did look back, I would remember what my buddy Dave would say, “Yeah, but this is a hell of a long way from Detroit.”
Okay, so connect the dots. I do show symptoms of HCV. They have progressively, though subtly, been getting worse. They will not get better by themselves. See where I am going with this? Yeah, me too.
Now the funny thing is that the side affects of the medication to treat HCV actually mimics the symptoms of HCV. Rather homeopathic, to get sick to treat a sickness.
Life is just filled with these paradoxical contradictory Zen koans.
Answer some questions? Good. Its hard for me to let people in. Appreciate the honor.
Until again,
Lynn
Friday, August 1, 2008
12:22:24 PM EDT
Feeling Inquisitive
Hearing Santana
How did I get this way?
I often tell my clients that you don’t necessarily need to know where you got the nail in the tire to go and get the tire fixed.
Like most people with HCV, I have no idea where I go it.
HCV is a direct blood to blood transmission, so there are actually only a few places to look.
The first place most people get it, and the first question/implication that comes to mind, is dirty needles from drug abuse. I know I have history, but I also know I never slammed dope. Did more than my share when I was young and stupid, but I haven’t been young for a long time.
But the needle may be a place to look. I was an Rh baby (the +/- after your blood type is about the Rh factor), my mom’s and my blood didn’t like each other. See, even then I didn’t play well with others. Medical records suggest there may have blood transfusions. This was 1950 in Pontiac, Michigan. So it possible, but unlikely.
Spent the late 1960s and early 70s riding with a bike club in the Detroit area. There was some blood on blood extra curricular activities and certainly some unsanitary conditions.
Follow that with being in the last draft call and spending time overseas with the Army doing military intelligence, forward observer for the artillery and reconnaissance. Again, some interaction of sure possibilities. It not a coincidence that one of the largest sites and resources on Hepatitis in the good old VA (Veterans Affairs). Don’t even get me started.
I did get a tattoo before I went in the Army in 1972. Great story. After I got my head around being drafted (the choices were the rest of my life in Canada, face a 3-5 year federal charge for refusal, or go in for 2 years and do my duty - do the math), I decided to get a small “OM” (its a Sanskrit electrical measurement) tattooed high on my right deltoid (shoulder). Something to remind me of who I was. Rode my bike into Detroit to a guy who did most of the club members. He did a nice job. After I told him why I wanted it, he refused payment. Looked for him after I got out, but like everyone else, he was gone.
So I loaded up everything in an old Chevy van and drove from Detroit to California. Lived out of my van for a while. Surprising how unsupportive society was then to recently discharged veterans. To make ends meet, I sold my plasma to a Santa Ana blood bank. I could do that a couple times a week. But, it was way before people got hip to the contagious epidemic of viruses like HCV.
After that I gave blood on a regular basis to the Red Cross. Again, before awareness really set it. I could have gotten HCV there. I could also have spread it without knowing it. Can’t give blood anymore and I can’t donate organs when I die. Things change.
So, how did I get this way? Life provided me with many opportunities. At some point at those crossroads where I picked up this hitch-hiker, I have no idea. Its not punishment or karma. Its the way the moments were structured when I was in them and those situations have a direct natural cause-and-affect relationship to everything that followed. It was what it was. It is what it is. It will be what it will be. Statements of fact.
Another story. A ruler once got shot by an arrow. Everyone ran to help him. But before he would let anyone pull the arrow out he wanted to know who shot it, how they shot it, why they shot it, who trained them to shoot it, what type of bow and arrow it was, and many other details. The ruler died of his wounds before he could get all of his questions answered. A warrior would have just pulled the arrow out himself and kept on fighting.
So, my friends and family, you want to know how I go this way? I don’t know and I don’t care. I am too busy walking forward to look back too much.
Until again,
Lynn
07Thursday, July 31, 2008
11:36:39 AM EDT
Feeling Inquisitive
Hearing Scolfield (jazz guitar)
Inconvenience
Okay, I get it. If someone had a problem and needed my assistance, I would show up and be there. No questions, no problem. Its an honor to be of assistance to each other. Okay, so get that out of your head before reading on.
Yet, when the tables are turned, and I am the one who just might perhaps require some attention or assistance, I frame it as an inconvenience to others and resist it at all costs. Those who know me know that if I feel I am any sort of inconvenience, I am out of there. I would rather do it all myself than inconvenience others. I have been this way so long that it doesn’t even occur to me to ask for assistance. Its not that I don’t think I am worth it, because I am a good friend and believe that what goes around comes around. But, as it comes around, or has the potential of coming around, I can feel the resistance and fight coming up.
So please, don’t take my issue as a statement of how important you all are in my life. You will never know how important you are, yet I will do my best to tell and show you. Don’t feel insulted if I have trouble accepting your attention, assistance, or concern. Its not about you (sorry, I know we think its all about us). This one is about me (see, yes it is all about me, damn it.)
So I guess one way to be the least inconvenient is to keep you informed so you don’t have to worry or ask. That’s what I am hopping this blog/journal will do. I will do my best to keep it up to date with the latest information, happenings, and situation status reports. I will also do my best to graciously accept whatever inconvenience I am in your life because you care about me. (Okay, ouch, that last statement was hard.)
So when you ask; “How are you?” and I hear “I can’t handle it when you are not doing well, so please get over this because you are becoming an inconvenience to me.” I will realize that its my head, not your words or heart, that are causing me discomfort. Okay?
So what goes around comes around and it just might be time for the comes around part. Damn it.
Until again,
Lynn
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0Wednesday, July 30, 2008
12:24:50 PM EDT
Feeling Relaxed
Hearing Clapton
Anticipations/Expectations
Waiting is never easy. So what can I do in preparation?
Being educated about future possibilities has often allowed me to get out of some fear based fantasies and into some realistic expectations. But when it comes right down to it, they are still fantasies too and I won’t know until I get there. But, in the meantime, I do my homework and try to accept what is and what possibly will be.
I tend to accept, expect, and prepare for the worst. Hey, its my way. But seldom has the worst come true and I know that. But by being prepared (an old boy scout habit, and yes I was a boy scout – and according to some, I still am), whatever happens I can handle it and its usually always better than I thought. So I quietly go into my own little world (my head) and play it all out, so I can see through it. I have never been one who saw through it first, sequentially its usually later (sometimes much later – still waiting for a few).
So here I sit today, relaxed and positive. Whatever happens, I/we will be okay. As I anticipate and expect the worst, I know I/we can handle it. Been through worse at least a couple times.
But the waiting to start is never easy.
Until again,
Lynn
07/29/2008Tuesday, July 29, 2008
3:33:37 PM EDT
Feeling Confident
Hearing SRV
HCV Basics (CDC)
Information from the Center for Disease Control (CDC)
What is hepatitis?
“Hepatitis” means inflammation of the liver. Toxins, certain drugs, some diseases, heavy alcohol use, and bacterial and viral infections can all cause hepatitis. Hepatitis is also the name of a family of viral infections that affect the liver; the most common types are hepatitis A, hepatitis B, and hepatitis C.
What is the difference between hepatitis A, hepatitis B, and hepatitis C?
Hepatitis A, hepatitis B, and hepatitis C are diseases caused by three different viruses. Although each can cause similar symptoms, they have different modes of transmission and can affect the liver differently. Hepatitis A appears only as an acute or newly occurring infection and does not become chronic. People with hepatitis A usually improve without treatment. Hepatitis B and hepatitis C can also begin as acute infections, but in some people, the virus remains in the body, resulting in chronic disease and long-term liver problems. There are vaccines to prevent hepatitis A and B; however, there is not one for hepatitis C. If a person has had one type of viral hepatitis in the past, it is still possible to get the other types.
Hepatitis C is a contagious liver disease that ranges in severity from a mild illness lasting a few weeks to a serious, lifelong illness that attacks the liver. It results from infection with the hepatitis C virus (HCV), which is spread primarily through contact with the blood of an infected person. Hepatitis C can be either “acute” or “chronic.”
Acute hepatitis C virus infection is a short-term illness that occurs within the first 6 months after someone is exposed to the hepatitis C virus. For most people, acute infection leads to chronic infection.
Chronic hepatitis C virus infection is a long-term illness that occurs when the hepatitis C virus remains in a person’s body. Hepatitis C virus infection can last a lifetime and lead to serious liver problems, including cirrhosis (scarring of the liver) or liver cancer.
How common is acute hepatitis C in the United States?
In 2006, there were an estimated 19,000 new hepatitis C virus infections in the United States. However, the official number of reported hepatitis C cases is much lower. Many people who are infected never have symptoms and therefore never come to the attention of medical or public health officials.
How common is chronic hepatitis C in the United States?
An estimated 3.2 million persons in the United States have chronic hepatitis C virus infection. Most people do not know they are infected because they don’t look or feel sick.
How likely is it that acute hepatitis C will become chronic?
Approximately 75%–85% of people who become infected with hepatitis C virus develop chronic infection.
How serious is chronic hepatitis C?
Chronic hepatitis C is a serious disease that can result in long-term health problems, including liver damage, liver failure, liver cancer, or even death. It is the leading cause of cirrhosis and liver cancer and the most common reason for liver transplantation in the United States. Approximately 8,000–10,000 people die every year from hepatitis C related liver disease.
Hepatitis C is spread when blood from a person infected with the hepatitis C virus enters the body of someone who is not infected. Today, most people become infected with the hepatitis C virus by sharing needles or other equipment to inject drugs. Before 1992, when widespread screening of the blood supply began in the United States, hepatitis C was also commonly spread through blood transfusions and organ transplants.
People can become infected with the hepatitis C virus during such activities as
- Sharing needles, syringes, or other equipment to inject drugs
- Needlestick injuries in healthcare settings
- Being born to a mother who has hepatitis C
Less commonly, a person can also get hepatitis C virus infection through
- Sharing personal care items that may have come in contact with another person’s blood, such as razors or toothbrushes
- Having sexual contact with a person infected with the hepatitis C virus
Can hepatitis C be spread through sexual contact?
Yes, but the risk of transmission from sexual contact is believed to be low. The risk increases for those who have multiple sex partners, have a sexually transmitted disease, engage in rough sex, or are infected with HIV. More research is needed to better understand how and when hepatitis C can be spread through sexual contact.
Can you get hepatitis C by getting a tattoo or piercing?
A few major research studies have not shown hepatitis C to be spread through licensed, commercial tattooing facilities. However, transmission of hepatitis C (and other infectious diseases) is possible when poor infection-control practices are used during tattooing or piercing. Body art is becoming increasingly popular in the United States, and unregulated tattooing and piercing are known to occur in prisons and other informal or unregulated settings. Further research is needed to determine if these types of settings and exposures are responsible for hepatitis C virus transmission.
Can hepatitis C be spread within a household?
Yes, but this does not occur very often. If hepatitis C virus is spread within a household, it is most likely a result of direct, through-the-skin exposure to the blood of an infected household member.
What are ways hepatitis C is not spread?
Hepatitis C virus is not spread by sharing eating utensils, breastfeeding, hugging, kissing, holding hands, coughing, or sneezing. It is also not spread through food or water.
Who is at risk for hepatitis C?
Some people are at increased risk for hepatitis C, including
- Current injection drug users (currently the most common way hepatitis C virus is spread in the United States)
- Past injection drug users, including those who injected only one time or many years ago
- Recipients of donated blood, blood products, and organs (once a common means of transmission but now rare in the United States since blood screening became available in 1992)
- People who received a blood product for clotting problems made before 1987
- Hemodialysis patients or persons who spent many years on dialysis for kidney failure
- People who received body piercing or tattoos done with non-sterile instruments
- People with known exposures to the hepatitis C virus, such as
- Healthcare workers injured by needlesticks
- Recipients of blood or organs from a donor who tested positive for the hepatitis C virus
- HIV-infected persons
- Children born to mothers infected with the hepatitis C virus
Less common risks include:
- Having sexual contact with a person who is infected with the hepatitis C virus
- Sharing personal care items, such as razors or toothbrushes, that may have come in contact with the blood of an infected person
What is the risk of a pregnant woman passing hepatitis C to her baby?
Hepatitis C is rarely passed from a pregnant woman to her baby. About 4 of every 100 infants born to mothers with hepatitis C become infected with the virus. However, the risk becomes greater if the mother has both HIV infection and hepatitis C.
What are the symptoms of acute hepatitis C?
Approximately 70%–80% of people with acute hepatitis C do not have any symptoms. Some people, however, can have mild to severe symptoms soon after being infected, including
- Fever
- Fatigue
- Loss of appetite
- Nausea
- Vomiting
- Abdominal pain
- Dark urine
- Clay-colored bowel movements
- Joint pain
- Jaundice (yellow color in the skin or eyes)
How soon after exposure to hepatitis C do symptoms appear?
If symptoms occur, the average time is 6–7 weeks after exposure, but this can range from 2 weeks to 6 months. However, many people infected with the hepatitis C virus do not develop symptoms.
Can a person spread hepatitis C without having symptoms?
Yes, even if a person with hepatitis C has no symptoms, he or she can still spread the virus to others.
Is it possible to have hepatitis C and not know it?
Yes, many people who are infected with the hepatitis C virus do not know they are infected because they do not look or feel sick.
What are the symptoms of chronic hepatitis C?
Most people with chronic hepatitis C do not have any symptoms. However, if a person has been infected for many years, his or her liver may be damaged. In many cases, there are no symptoms of the disease until liver problems have developed. In persons without symptoms, hepatitis C is often detected during routine blood tests to measure liver function and liver enzyme (protein produced by the liver) level.
Can a person have normal liver enzyme (e.g., ALT) results and still have hepatitis C?
Yes. It is common for persons with chronic hepatitis C to have a liver enzyme level that goes up and down, with periodic returns to normal or near normal. Some infected persons have liver enzyme levels that are normal for over a year even though they have chronic liver disease. If the liver enzyme level is normal, persons should have their enzyme level re-checked several times over a 6–12 month period. If the liver enzyme level remains normal, the doctor may check it less frequently, such as once a year.
Who should get tested for hepatitis C?
Talk to your doctor about being tested for hepatitis C if any of the following are true:
- You are a current or former injection drug user, even if you injected only one time or many years ago.
- You were treated for a blood clotting problem before 1987.
- You received a blood transfusion or organ transplant before July 1992.
- You are on long-term hemodialysis treatment.
- You have abnormal liver tests or liver disease.
- You work in healthcare or public safety and were exposed to blood through a needlestick or other sharp object injury.
- You are infected with HIV.
If you are pregnant, should you be tested for hepatitis C?
No, getting tested for hepatitis C is not part of routine prenatal care. However, if a pregnant woman has risk factors for hepatitis C virus infection, she should speak with her doctor about getting tested.
What blood tests are used to test for hepatitis C?
Several different blood tests are used to test for hepatitis C. A doctor may order just one or a combination of these tests. Typically, a person will first get a screening test that will show whether he or she has developed antibodies to the hepatitis C virus. (An antibody is a substance found in the blood that the body produces in response to a virus.) Having a positive antibody test means that a person was exposed to the virus at some time in his or her life. If the antibody test is positive, a doctor will most likely order a second test to confirm whether the virus is still present in the person’s bloodstream.
How is acute hepatitis C treated?
There is no medication available to treat acute hepatitis C infection. Doctors usually recommend rest, adequate nutrition, and fluids.
How is chronic hepatitis C treated?
Each person should discuss treatment options with a doctor who specializes in treating hepatitis. This can include some internists, family practitioners, infectious disease doctors, or hepatologists (liver specialists). People with chronic hepatitis C should be monitored regularly for signs of liver disease and evaluated for treatment. The treatment most often used for hepatitis C is a combination of two medicines, interferon and ribavirin. However, not every person with chronic hepatitis C needs or will benefit from treatment. In addition, the drugs may cause serious side effects in some patients.
What are the long-term effects of hepatitis C?
Of every 100 people infected with the hepatitis C virus, about
- 75–85 people will develop chronic hepatitis C virus infection; of those,
- 60–70 people will go on to develop chronic liver disease
- 5–20 people will go on to develop cirrhosis over a period of 20–30 years
- 1–5 people will die from cirrhosis or liver cancer
Is it possible to get over hepatitis C?
Yes, approximately 15%–25% of people who get hepatitis C will clear the virus from their bodies without treatment and will not develop chronic infection. Experts do not fully understand why this happens for some people.
What can a person with chronic hepatitis C do to take care of his or her liver?
People with chronic hepatitis C should be monitored regularly by an experienced doctor. They should avoid alcohol because it can cause additional liver damage. They also should check with a health professional before taking any prescription pills, supplements, or over-the-counter medications, as these can potentially damage the liver. If liver damage is present, a person should check with his or her doctor about getting vaccinated against hepatitis A and hepatitis B.
Should a person infected with the hepatitis C virus be restricted from working in certain jobs or settings?
CDC’s recommendations for prevention and control of the hepatitis C virus infection state that people should not be excluded from work, school, play, child care, or other settings because they have hepatitis C. There is no evidence that people can get hepatitis C from food handlers, teachers, or other service providers without blood-to-blood contact.
What is HIV and hepatitis C virus coinfection?
HIV and hepatitis C virus coinfection refers to being infected with both HIV and the hepatitis C virus. Coinfection is more common in persons who inject drugs. In fact, 50%–90% of HIV-infected persons who use injection drugs are also infected with the hepatitis C virus. To learn more about coinfection, visit http://www.cdc.gov/hiv/resources/factsheets/coinfection.htm.
Can I donate blood, organs, or semen if I have hepatitis C?
No, if you ever tested positive for the hepatitis C virus (or hepatitis B virus), experts recommend never donating blood, organs, or semen because this can spread the infection to the recipient.
Is there a vaccine that can prevent hepatitis C?
Not yet. Vaccines are available only for hepatitis A and hepatitis B. Research into the development of a vaccine is under way.
Can a person get hepatitis C from a mosquito or other insect bite?
Hepatitis C virus has not been shown to be transmitted by mosquitoes or other insects.
How long does the hepatitis C virus survive outside the body?
The hepatitis C virus can survive outside the body at room temperature, on environmental surfaces, for at least 16 hours but no longer than 4 days.
How should blood spills be cleaned from surfaces to make sure that hepatitis C virus is gone?
Any blood spills — including dried blood, which can still be infectious — should be cleaned using a dilution of one part household bleach to 10 parts water. Gloves should be worn when cleaning up blood spills.
3:22:53 PM EDT
Feeling Confident
Hearing SRV
HCV Basics
Some useful information from the Hepatitis Foundation International
Basics: Hepatitis C (HCV)
What Is Hepatitis C ?
Hepatitis C virus (HCV) causes inflammation of the liver. A national U. S. survey found that 1.8 percent of Americans – about 3.9 million – have been infected with HCV, of whom most about 2.7 million – are chronically infected with HCV, with many showing no signs or symptoms. The good news is that, in 1995, a reliable antibody test for HCV was finally implemented nationwide. About 41,000 new cases occurred in 1998 with 15-25% recovering spontaneously. Hepatitis C is a slow-progressing disease that may take 10-40 years to cause serious liver damage in some people.
Who Is At Risk?
Since about four million Americans are infected with HCV and most don’t know it, you should have a blood test for hepatitis C whether you feel sick or not. About one in ten people infected with HCV have had no identifiable exposure to HCV. That said, here are several obvious risk factors:
- Intravenous (IV) drug users – even IV use in the distant past.
- Those with multiple sex partners or sex with partners who have other sexually transmitted diseases.
- Those with tattoos or body piercing done with unsterile instruments. Anyone who has had a blood transfusion prior to 1992 or clotting factors produced before 1987.
- Hemodialysis (diabetes) patients.
- The potential for transmission from an HCV-infected mother to her newborn appears to be about 5%.
How Does it Spread?
- Injection drug use is the primary risk for HCV infection. Injection drug use accounts for about 60% of all new cases of hepatitis C and is a major risk factor for infection with hepatitis B virus. Among frequent drug users, 50-80% are infected by HCV within the first 12 months of beginning injecting.
- Straws shared in snorting drugs are also a potential source of infection of HCV. The hepatitis C virus is found mainly in blood.
- HCV is not spread through kissing or casual contact.
- In relationships where there is one steady partner, sexual transmission is exceedingly unusual, less than 3% over decades in sexually active couples. Transmission from HCV RNA negative individuals has never been reported. Sexual transmission may be more common among those with multiple sex partners or where there is a history of sexually transmitted disease but this remains controversial and unconfirmed.
- HCV may be transmitted by using razors, needles, toothbrushes, nail files, a barber’s scissors, tattooing equipment, body piercing or acupuncture needles if these items are contaminated by blood of an infected person.
- Healthcare workers have a 2% risk of acquiring HCV after a needle stick contaminated with HCV-positive blood.
- There is no evidence indicating that HCV is transmitted through breast milk.
- The current transmission rate through blood transfusions is estimated at less than 1 per 1,000,000 units transfused.
Symptoms
Most people who are infected with the HCV do not have symptoms and are leading normal lives. If symptoms are present, they may be very mild and flu-like – nausea, fatigue, loss of appetite, fever, headaches, and abdominal pain. Most people do not have jaundice although jaundice can sometimes occur along with dark urine.
The incubation period varies from 2-26 weeks. Liver enzyme tests may range from being elevated to being normal for weeks to as long as a year. The virus is in the blood and may be causing liver cell damage, and the infected person can transmit the disease to others.
Diagnosis
Test for HCV antibodies: HCV infection can be determined by a simple and specific blood test that detects antibodies against HCV. The current enzyme immunoassay test (EIA) that detects anti-HCV has a sensitivity of about 95% in chronic HCV. HCV infection may be identified by anti-HCV testing in approximately 80% of people as early as five weeks after exposure. This test is not a part of a routine physical examination, and people must ask their doctor for a hepatitis C antibody test. (Note: The antibody itself does not provide immunity, and the test does not distinguish between acute or chronic infection.) If the initial test is positive, it test should be repeated to confirm the diagnosis (and exclude possible laboratory error). If the initial test is negative, but the infection could have occurred within the last six months and HCV is suspected, antibody levels may not be high enough yet to be detectable (antibodies may not be present in the first 4 weeks of infection in about 30% of patients) or you may lack immune response. Under these circumstances, ask you doctor about repeating the test and about alternative test methods.
Test liver enzyme levels: If you may already have chronic infection, your doctor will test the levels of two liver enzymes. These are alanine aminotransferase (ALT) and aspartate aminotrasferase (AST). Both are released when liver cells are injured or die. Elevated ALT and AST levels may appear and disappear throughout the course of the HCV infection. If the liver enzyme levels are normal with chronic HCV, they should be re-checked several times over a 6 – 12 month period. If the liver enzyme levels remain normal, your doctor may check them less frequently, such as once a year.
Treating HCV
- There are three types of interferon, plus a combination of interferon and ribavirin, used to treat hepatitis C. Blood tests and liver biopsy findings may determine the need for treatment.
- Interferon must be given by injection, and may have a number of side effects, including flu-like symptoms – headaches, fever, fatigue, loss of appetite, nausea, vomiting, and thinning of hair.
- Ribavirin, given by mouth, can have additional side effects including depression, severe anemia and especially birth defects. Women or the male partners of women, who are pregnant or who are planning pregnancy, should not take ribavirin. Pregnancy should not be attempted until six months after treatment is ended. Ribavirin may also interfere with the production of red blood cells and platelets by depressing bone marrow. Patients should be monitored frequently.
- While 50-60% of patients respond to treatment initially, sustained response occurs in up to 40%.
- Treatment of children with HCV is under investigation.
- Researchers are re-examining when treatment should begin, for how long it should continue, and its effectiveness.
- Many pharmaceutical companies and NIH are conducting research to find more effective treatments and cures.
- Currently, almost 1/2 of all liver transplants in the US are performed for end-stage hepatitis C. However, re-infection of the transplanted liver by the virus usually occurs and may require a second transplant.
- Try to maintain as normal a life as possible, eating a well-balanced diet, exercising and keeping a positive attitude. Avoid depressing or overwhelming tasks and learn how to pace yourself. Rest when you feel tired. Plan physically exhausting tasks in the morning when your energy level is at its peak.
Disease Outcomes
Between 20- 30 percent of HCV sufferers are able to become virus-free with proper treatment. Between 70 80% of the HVC infections reported each year become classified as chronic. Chronic HCV refers to infections that do not clear up within 6 months after the acute infection. Within the chronically infected group, about 20% go on to develop cirrhosis (scarring of the liver). Of this group, 25% may develop liver failure, even though this may take 30-40 years. Cirrhosis slows the blood flow through the liver and causes increased pressure in the vein that carries blood from the stomach and the intestines to the liver. As a result, varicose veins (e.g., “varices”) may develop in the stomach and esophagus. Without warning these large veins can break causing a person to vomit blood or have black, tarry stools. An estimated 8,000-10,000 deaths occur each year resulting from the complications of HCV.
Preventing HCV Infection
- There is NO vaccine to prevent HCV.Vaccines for Hepatitis A and B do not provide immunity against hepatitis C. There are various genotypes of HCV and the virus undergoes mutations making it difficult to develop a vaccine.
- Avoid handling anything that may have the blood of an infected person on it, such as razors, scissors, toothbrushes, nail clippers or files, tampons or sanitary napkins, etc. Detergent and a 10% solution of household bleach is believed to kill the virus.
- Don’ t share drug needles, cocaine straws or any drug paraphernalia.
- Practice safe sex (use latex condoms).
- Notify your physician and dentist that you have hepatitis .
- Get vaccinated against hepatitis A and B.
- Those infected with hepatitis C should not drink alcohol, as it accelerates the liver damage.
Sunday, July 27, 2008
3:41:22 PM EDT
Feeling Quiet
Hearing Coltrane
Presceening
I haven’t actually started treatment yet. Treatment involves taking one shot every week and two medications every day for 48 weeks. Doesn’t sound like fun does it?
On the pessimistic side, I could be sick with flu like symptoms for a year, lose all my hair, and still not clear the virus. On the optimistic side, I could be inconvenienced for a year, lose my hair, and be virus clear.
I was lucky. It appears there is a research study that I can join and they will pay for the treatment. I can be expensive if an individual has to pay for it – about $7000. So, this is a good thing. And, this good thing is soon. Looks like it will start in mid August 2008, so I only have a few weeks to prepare myself and my family.
I have always been pretty good at accepting what is, even if its not the way I want things to be, and especially if I actually have no control or choice in the matter. This seems like one of those times. So, at the moment, I am good.
I’ll try to keep things up to date and let you in on my latest adventure.
Until again,
Lynn
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