Following up on my previous post, I am a casual member of an online forum for people with Hep C. The forum is moderated by a well-known hepatologist. One of the other moderators had a post about the new medications coming out soon and said they show great promise for people with genotypes 1 & 2, but have not shown statistical significance in those with genotype 3. I have genotype 3a. If these studies are true (and I have no reason to believe they are not), I would not be a candidate for the new treatment. Bummer.
But I'm not giving up; I still think I need to see the hepatologist and make sure I am being managed correctly and see what's on the horizon regarding treatment options for me. I can't give up on just a sliver of hope, I just can't. I know it's not much but I simply must believe there is something that might improve my quality of life.
The last 24 hours were awful with lots of pain and flu-like symptoms and a bunch of other symptoms I won't bore you with. I simply can't go on feeling that poorly. A friend was coming to visit, but I had to let her know I wasn't up to visitors. My wonderful husband worked from home today to allow me to sleep and keep a watchful eye. I perked up this afternoon and got a few things done. It's been very hot (high 90's) and humid here and I don't do so well with that, so I stayed indoors.
Please, please do not take your health for granted. If you are blessed with good health, thank God that you can make plans and go about your day without the worry of illness. And for me, I simply must hold on to hope. Even if it's just a sliver.
Thursday, August 12, 2010
Tuesday, August 10, 2010
Options and decisions
When people inquire about my disease they often ask what options are available to me. The truth is, at this point: Just wait until my liver fails completely and await a transplant. Having been a nurse I've seen my share of people who die from cirrhosis and/or it's complications. There's no way to sugar coat it - it's awful, horrible suffering and one of the worst ways to die. If you want to know details you can google it.
But I'm not to the point of needing a transplant just yet. There is quite a bit of excitement in the Hep C community about a new drug that has been fast-tracked by the FDA. Some are saying it will be approved next year, but my "inside sources" are telling me it may be as early as October 2010. The new medication is a protease inhibitor, when added to standardized treatment has shown promising results. The new med has even shortened the length of standard treatment.
I hope to see a specialist at a large medical center soon and have a full consultation to review my options. After having gone through 2 rounds of treatment I must admit trying yet another with the addition of the protease inhibitor does not excite me as the treatment is very difficult without it. But if I am a candidate for the new treatment, and especially if the treatment length is shortened I may just give it a shot. I know I can do it; I've done it before and even though I barely remember the last 3 months of treatment due to near-death sickness, it would be worth it if the statistics bear out. My family all want me to try, and their support is important.
However, I may not be a candidate for the new treatment. My liver is severely damaged and I have cirrhosis. This damage is irreversible, which means that even if I can clear the Hep C, I will always have a diseased liver. I simply don't know what options are best for me.
And I'm going to throw this out there as well; I have very mixed feelings about a transplant. I worked in an ICU that performed kidney transplants (much easier than liver) and I know that it's not always a walk in the park. I know that I could end up feeling worse, not better. An acquaintance of mine had 2 liver transplants for Hep C, and eventually died. He looked like the walking dead and I don't want that. Once again, I need statistics to help me make my decision. I think about how blessed I have been to raise my children to adulthood and live a really great life; maybe a transplant is not for me. I'd rather give that liver to someone younger than I who has the possibility of long life ahead of them.
I just hope I will have a better idea of the options open to me sometime in the next couple of months so stay tuned!
But I'm not to the point of needing a transplant just yet. There is quite a bit of excitement in the Hep C community about a new drug that has been fast-tracked by the FDA. Some are saying it will be approved next year, but my "inside sources" are telling me it may be as early as October 2010. The new medication is a protease inhibitor, when added to standardized treatment has shown promising results. The new med has even shortened the length of standard treatment.
I hope to see a specialist at a large medical center soon and have a full consultation to review my options. After having gone through 2 rounds of treatment I must admit trying yet another with the addition of the protease inhibitor does not excite me as the treatment is very difficult without it. But if I am a candidate for the new treatment, and especially if the treatment length is shortened I may just give it a shot. I know I can do it; I've done it before and even though I barely remember the last 3 months of treatment due to near-death sickness, it would be worth it if the statistics bear out. My family all want me to try, and their support is important.
However, I may not be a candidate for the new treatment. My liver is severely damaged and I have cirrhosis. This damage is irreversible, which means that even if I can clear the Hep C, I will always have a diseased liver. I simply don't know what options are best for me.
And I'm going to throw this out there as well; I have very mixed feelings about a transplant. I worked in an ICU that performed kidney transplants (much easier than liver) and I know that it's not always a walk in the park. I know that I could end up feeling worse, not better. An acquaintance of mine had 2 liver transplants for Hep C, and eventually died. He looked like the walking dead and I don't want that. Once again, I need statistics to help me make my decision. I think about how blessed I have been to raise my children to adulthood and live a really great life; maybe a transplant is not for me. I'd rather give that liver to someone younger than I who has the possibility of long life ahead of them.
I just hope I will have a better idea of the options open to me sometime in the next couple of months so stay tuned!
Monday, August 9, 2010
Going batty
This post has nothing to do with Hep c, being sick or anything unpleasant. This is simply for fun!
Last night I was in bed reading, waiting for my husband to come to bed around 11:30. My daughter had just gotten home from work and was taking a shower, when suddenly I heard a lot of commotion downstairs. No screaming, just running around, slamming doors and all to the beat of sheer panic. I came downstairs to find my husband in the bathroom holding a tote bin upside down on the floor. My daughter looked utterly shocked and told me that she'd gone in to take a shower, and suddenly a bat flew over her head - inside the house! My husband had it trapped under the bin and they were furiously thinking of what to do. We ultimately were able to get the bat outside and let it free....it was a cute little brown bat, but we have no idea how it got inside.
We've had our run-ins with critters in our house. When we were first married, we lived in a 2-bedroom starter home with a finished basement we rarely used. I went down one day to find a long line of slimy "droppings" in the family room, then heard a ruckus near the fireplace. I went over to look - had to get out a flashlight - and found a mother raccoon complete with nest and a bunch of baby raccoons living in our fireplace! On this occasion, we called pet control and they removed the raccoon family and set them free in a wooded area.
Every fall, I open the damper to our fireplace and make sure there are no obstructions. One year I was having a very hard time getting the damper open and had to pull really hard, until it gave way and came off it's hinges, sending me on my butt. Usually a few assorted leaves and dirt come pouring out, but not this year. Out comes the leg of a duck, clearly the duck is dead because the leg - while intact with feathers - is in a dried out state. I looked more closely and the entire duck had fallen into our chimney, I donned a pair of gloves and pulled the duck out - all in one piece - to find a full-grown mallard had died in the chimney.
A couple of years later, it was time once again to open the damper and clean the fireplace out for fall. As I was pulling the handle, I heard a bunch of noise, but before I could stop....out dropped a full family of mice - mom, dad and tiny little babies, some barely with their eyes open. Just so you know, I never screamed or ran around like an idiot as most TV shows would indicate. I grew up in the country, and well - this is all pretty normal stuff for a girl who grew up catching large snakes and seeing all types of wild critters.
But I must admit - a bat inside the house was a first. It really was a cute little thing....I hope it's doing okay!
Last night I was in bed reading, waiting for my husband to come to bed around 11:30. My daughter had just gotten home from work and was taking a shower, when suddenly I heard a lot of commotion downstairs. No screaming, just running around, slamming doors and all to the beat of sheer panic. I came downstairs to find my husband in the bathroom holding a tote bin upside down on the floor. My daughter looked utterly shocked and told me that she'd gone in to take a shower, and suddenly a bat flew over her head - inside the house! My husband had it trapped under the bin and they were furiously thinking of what to do. We ultimately were able to get the bat outside and let it free....it was a cute little brown bat, but we have no idea how it got inside.
We've had our run-ins with critters in our house. When we were first married, we lived in a 2-bedroom starter home with a finished basement we rarely used. I went down one day to find a long line of slimy "droppings" in the family room, then heard a ruckus near the fireplace. I went over to look - had to get out a flashlight - and found a mother raccoon complete with nest and a bunch of baby raccoons living in our fireplace! On this occasion, we called pet control and they removed the raccoon family and set them free in a wooded area.
Every fall, I open the damper to our fireplace and make sure there are no obstructions. One year I was having a very hard time getting the damper open and had to pull really hard, until it gave way and came off it's hinges, sending me on my butt. Usually a few assorted leaves and dirt come pouring out, but not this year. Out comes the leg of a duck, clearly the duck is dead because the leg - while intact with feathers - is in a dried out state. I looked more closely and the entire duck had fallen into our chimney, I donned a pair of gloves and pulled the duck out - all in one piece - to find a full-grown mallard had died in the chimney.
A couple of years later, it was time once again to open the damper and clean the fireplace out for fall. As I was pulling the handle, I heard a bunch of noise, but before I could stop....out dropped a full family of mice - mom, dad and tiny little babies, some barely with their eyes open. Just so you know, I never screamed or ran around like an idiot as most TV shows would indicate. I grew up in the country, and well - this is all pretty normal stuff for a girl who grew up catching large snakes and seeing all types of wild critters.
But I must admit - a bat inside the house was a first. It really was a cute little thing....I hope it's doing okay!
Saturday, August 7, 2010
Getting up again
"It is not having been in the dark house, but having left it, that counts." ~ Theodore Roosevelt
The quote from our former President is similar to those that say "it's not how many times you get knocked down - it's that you keep getting back up."
Today I got back up. I have no idea whatsoever what caused me to be so ill yesterday, but after a slow start this morning I am feeling pretty well. I was able to accomplish my goals for the day and enjoyed fun time with my husband, daughter & some of her friends. So...I am grateful.
I've seen my share of darkness; I've certainly been knocked down and kicked around a bit but overall I have a positive attitude. I view myself as a fighter (and most who know me well would agree). I often wonder why some people are able to withstand adversity while others do not. I don't see it as personal strength or weakness, but more just the way we are wired. I've known some truly great people who succumb to personal struggles, be it with suicide, alcoholism, addiction or other forms of what I feel are "slow suicide. " It's painful to watch a person self-destruct when you know they have a beautiful soul. Don't get me wrong -I've been in those dark places but I don't tend to stay there long at all. Try to psychoanalyze if you wish, but there are simply too many gray areas.
A friend recently blogged about how our world is not black and white, often it is filled with gray...those in-between zones where we don't have an answer. I kinda like that idea. Feeling like everything has to be black and white makes me uncomfortable, whereas the gray seems safe. So, why I tend to get back up, crawl out of the darkness and keep going forward is a mystery to me and that's fine. I hope I'll be getting back up again tomorrow and it's another good day.
The quote from our former President is similar to those that say "it's not how many times you get knocked down - it's that you keep getting back up."
Today I got back up. I have no idea whatsoever what caused me to be so ill yesterday, but after a slow start this morning I am feeling pretty well. I was able to accomplish my goals for the day and enjoyed fun time with my husband, daughter & some of her friends. So...I am grateful.
I've seen my share of darkness; I've certainly been knocked down and kicked around a bit but overall I have a positive attitude. I view myself as a fighter (and most who know me well would agree). I often wonder why some people are able to withstand adversity while others do not. I don't see it as personal strength or weakness, but more just the way we are wired. I've known some truly great people who succumb to personal struggles, be it with suicide, alcoholism, addiction or other forms of what I feel are "slow suicide. " It's painful to watch a person self-destruct when you know they have a beautiful soul. Don't get me wrong -I've been in those dark places but I don't tend to stay there long at all. Try to psychoanalyze if you wish, but there are simply too many gray areas.
A friend recently blogged about how our world is not black and white, often it is filled with gray...those in-between zones where we don't have an answer. I kinda like that idea. Feeling like everything has to be black and white makes me uncomfortable, whereas the gray seems safe. So, why I tend to get back up, crawl out of the darkness and keep going forward is a mystery to me and that's fine. I hope I'll be getting back up again tomorrow and it's another good day.
Friday, August 6, 2010
sick sick sick
I am very sick today. I am not posting to get pity or sympathy, but to share how it feels. People often ask me how I feel when I am sick and I will explain here.
I woke up feeling okay, had a great night's sleep. My morning routine was unchanged (I do the same things every day). But I began to feel sick - like I have the flu - around 10AM. All of my muscles and joints hurt just like when a person has the flu. But worst yet is pain. I have severe pain in my abdomen - on the right upper side of my ribcage and it wraps around me like a belt into the back right to my spine. The pain is an achy/pressure type of feeling. It doesn't cause me to double over, nor is it tender to the touch. It feels very deep inside my body. 100% of the time, the pain includes a severe headache. My head hurts all over. It's the same type of pain you get with sinus pressure but it covers my whole head.
So...I took 1 pain pill. No change. I waited awhile and took some Ibuprofen. No change. So...another pain pill. My daughter went to work at 10:30 and was concerned, but I told her to go, "it's okay" and she kissed me goodbye, telling me to call if I need her (she works 2 blocks away). By this time I knew I had to eat something, because now that I have diabetes I can no longer skip meals. I force myself to eat even though I have ZERO appetite. I am now afraid of being home alone. My mind is not clear and I'm so sick I simply feel fearful. I called my spouse and he came home to finish his work here in his home office. I'm so fortunate he is able to do this, but he does travel 2-3 days a week.
By the time he got here I had already taken 2 pain pills (prescription) and Ibuprofen without relief. So, he sat with me awhile and told me my color is a bit ashen (he's been noticing a gray-ish tint to my color, but it is subtle). I force myself to drink water, but the pain is still unbearable so I put on a heating pad. My husband finally says, "I think you should take another pain pill" and it's only 2:30. Three pain pills is my maximum allotment in one day. I seldom take more than 2 per day, and usually if I break the pill in half it does the trick. But not today.
So now I am finally getting some relief. For you nurses, I went from a 7-8 now to a 2. But now I am "loopy" and not thinking as clearly and I dislike - IMMENSELY - the way pain pills make me feel. I would never be a good drug addict because I generally dislike the "high" feeling.
I also took 2 Aspirin before pain pill #3 just to try something. It's probably not a great idea since my platelets run very low and my clotting times are off, meaning I bleed easily and my blood doesn't clot well, which is due to liver disease & aspirin is a "blood thinner" AND I have cirrhosis. But I'm desperately trying to get relief.
Now I'm exhausted from spending the day fighting this pain and from taking a day's worth of pain meds, so I will probably fall asleep. Falling asleep means I am not in pain (at least not enough to keep me from sleeping). And I can't think of anything I did yesterday that is different or unusual that would have caused me to have a bad day today. Nothing at all. Oh, and I had to take an anti-nausea medication because all that pain medication makes me feel pukey.
Some weeks I feel well and think I will live awhile; on days like today I can't imagine living one more year. So there you have it: what it feels like when I am sick. Hoping I wake up tomorrow and feel well, which is completely feasible. And....hoping this helps all of you who ask what it's like for me.
I woke up feeling okay, had a great night's sleep. My morning routine was unchanged (I do the same things every day). But I began to feel sick - like I have the flu - around 10AM. All of my muscles and joints hurt just like when a person has the flu. But worst yet is pain. I have severe pain in my abdomen - on the right upper side of my ribcage and it wraps around me like a belt into the back right to my spine. The pain is an achy/pressure type of feeling. It doesn't cause me to double over, nor is it tender to the touch. It feels very deep inside my body. 100% of the time, the pain includes a severe headache. My head hurts all over. It's the same type of pain you get with sinus pressure but it covers my whole head.
So...I took 1 pain pill. No change. I waited awhile and took some Ibuprofen. No change. So...another pain pill. My daughter went to work at 10:30 and was concerned, but I told her to go, "it's okay" and she kissed me goodbye, telling me to call if I need her (she works 2 blocks away). By this time I knew I had to eat something, because now that I have diabetes I can no longer skip meals. I force myself to eat even though I have ZERO appetite. I am now afraid of being home alone. My mind is not clear and I'm so sick I simply feel fearful. I called my spouse and he came home to finish his work here in his home office. I'm so fortunate he is able to do this, but he does travel 2-3 days a week.
By the time he got here I had already taken 2 pain pills (prescription) and Ibuprofen without relief. So, he sat with me awhile and told me my color is a bit ashen (he's been noticing a gray-ish tint to my color, but it is subtle). I force myself to drink water, but the pain is still unbearable so I put on a heating pad. My husband finally says, "I think you should take another pain pill" and it's only 2:30. Three pain pills is my maximum allotment in one day. I seldom take more than 2 per day, and usually if I break the pill in half it does the trick. But not today.
So now I am finally getting some relief. For you nurses, I went from a 7-8 now to a 2. But now I am "loopy" and not thinking as clearly and I dislike - IMMENSELY - the way pain pills make me feel. I would never be a good drug addict because I generally dislike the "high" feeling.
I also took 2 Aspirin before pain pill #3 just to try something. It's probably not a great idea since my platelets run very low and my clotting times are off, meaning I bleed easily and my blood doesn't clot well, which is due to liver disease & aspirin is a "blood thinner" AND I have cirrhosis. But I'm desperately trying to get relief.
Now I'm exhausted from spending the day fighting this pain and from taking a day's worth of pain meds, so I will probably fall asleep. Falling asleep means I am not in pain (at least not enough to keep me from sleeping). And I can't think of anything I did yesterday that is different or unusual that would have caused me to have a bad day today. Nothing at all. Oh, and I had to take an anti-nausea medication because all that pain medication makes me feel pukey.
Some weeks I feel well and think I will live awhile; on days like today I can't imagine living one more year. So there you have it: what it feels like when I am sick. Hoping I wake up tomorrow and feel well, which is completely feasible. And....hoping this helps all of you who ask what it's like for me.
Wednesday, August 4, 2010
Abundance
The word abundance has really been dominating my mind these last few days. I've been very blessed. I have a wonderful spouse of 26 years and our love deepens with time. Who gets that? Not many people and I realize how blessed I am. For that alone.
I have four great adult children, three with college educations and solid careers that they love. My youngest is still in college, but with her strength and determination I know she'll find her way and amaze me yet again.
I live in a place that is like paradise....it's currently over-run with tourists because of it's beauty and bounty of parks, stunning vistas and spectacular sunsets. The Aurora Borealis was visible last night here. Once again, who gets that? And I have this beautiful landscape in which we've built a life every single day. I make sure not to take it for granted.
And then there's the sky...oh yes, the sky! How can we not marvel at the sheer beauty of the sky alone? We ALL have that, and I make certain to take note each and every day so I don't miss anything.
Yes, I am blessed. It's not about worldly possessions, it's not about what I've accomplished in my life and it's certainly not about stockpiling meaningless "things." It's about having a rich life. love, great friends and daily beauty.
I'll be thinking about abundance today.
I have four great adult children, three with college educations and solid careers that they love. My youngest is still in college, but with her strength and determination I know she'll find her way and amaze me yet again.
I live in a place that is like paradise....it's currently over-run with tourists because of it's beauty and bounty of parks, stunning vistas and spectacular sunsets. The Aurora Borealis was visible last night here. Once again, who gets that? And I have this beautiful landscape in which we've built a life every single day. I make sure not to take it for granted.
And then there's the sky...oh yes, the sky! How can we not marvel at the sheer beauty of the sky alone? We ALL have that, and I make certain to take note each and every day so I don't miss anything.
Yes, I am blessed. It's not about worldly possessions, it's not about what I've accomplished in my life and it's certainly not about stockpiling meaningless "things." It's about having a rich life. love, great friends and daily beauty.
I'll be thinking about abundance today.
Tuesday, August 3, 2010
Thoughts for a new book
I've decided that the creators of those ever-popular "how-to" books need to compile a book called "How to die for dummies and their loved ones." There is no road map, right or wrong....and there is certainly no easy button.
After a wonderful week of relaxation I've been bombarded with one crisis after another - far more than I am currently able to handle. My husband steps in and addresses the most difficult things and I am very grateful, but I truly don't know how he does it. I worry about him. He has a huge burden on his shoulders and it's not anything he has chosen. He assures me, with those beautiful brown eyes, that he's just fine and he will do anything that is required - just say the word. How blessed I am.
I do know this: it's imperative to take care of myself with gentleness. It's also important to nurture my soul, and I have many avenues to do that. Pacing is important too - I can't do too much in one day without a great deal of rest. Another thing is knowing when to turn off the news; I find I have little tolerance for news stories that involve violence or pain, so I shield myself from that. It seems like the world is shifting and it's easy to get off-balance (plus, I get literally off balance and fall at regular intervals from dizziness).
Today I'm going to think about love and all things good and light. About God and those who I am fortunate to have love me unconditionally. Those are pretty huge things, don't you think?
After a wonderful week of relaxation I've been bombarded with one crisis after another - far more than I am currently able to handle. My husband steps in and addresses the most difficult things and I am very grateful, but I truly don't know how he does it. I worry about him. He has a huge burden on his shoulders and it's not anything he has chosen. He assures me, with those beautiful brown eyes, that he's just fine and he will do anything that is required - just say the word. How blessed I am.
I do know this: it's imperative to take care of myself with gentleness. It's also important to nurture my soul, and I have many avenues to do that. Pacing is important too - I can't do too much in one day without a great deal of rest. Another thing is knowing when to turn off the news; I find I have little tolerance for news stories that involve violence or pain, so I shield myself from that. It seems like the world is shifting and it's easy to get off-balance (plus, I get literally off balance and fall at regular intervals from dizziness).
Today I'm going to think about love and all things good and light. About God and those who I am fortunate to have love me unconditionally. Those are pretty huge things, don't you think?
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