Things are pretty much at a status quo right now, which is good. I am actually stronger and feeling better than I expected to at this point, and I attribute that to starting the procrit early, and also to taking a day off work each week.
I am still pretty tired on the week-end, after my shots, and I guess I might be crankier than I think I am. (according to my husband).
Saw the dr on Wednesday and things seem to be going well from his perspective. I discussed a new sleep aid, switching to Nexium from Prevlacid, and changing my shot schedule. I can move the time of my shots by 12 hours each week, to get them more in the middle of the week and then I'll have some quality time on the week-ends for the summer.
CANNOT WAIT TO GET DONE WITH SCHOOL!! 3 more days. I've been operating a lot on adrenaline this last week, and know that I need to crash a day before my daughter and grandson get here for a nice long visit!!! Thanks for checking in!
Sunday, June 27, 2010
Saturday, June 19, 2010
Lab work is in
Well, the confirmation genotype lab work came in this week. Just as suspected, it confirms that I am a gen 1a, not a 3. I'm still wrapping my head around the fact that I endured 6 months of grueling treatment and complications for nothing. It even states right on the first lab results that a gen 3 is typically treated for 24 weeks, but that a gen 1a always requires 48 weeks of treatment!
The good news is the viral load is undetected (UD) at this point, which ups my chances of totally beating this thing. The other up side is now I am considered a first time treater again, since I was not properly treated the first time. Statistically, that also ups my chances of reaching SVR (sustained viral reduction).
Still pretty wiped out from fatigue, but otherwise hanging in there. Did my second shot of procrit last night, but know that it is too early for it to really be kicking in. I'm anxious to see my hemoglobin levels; have sort of lost track of them in the past few weeks.
I still have 8 days of school left, so I'm plodding along with no thought of anything but getting my work finished so I can totally relax and take things at my own pace. Thanks for checking in!!
The good news is the viral load is undetected (UD) at this point, which ups my chances of totally beating this thing. The other up side is now I am considered a first time treater again, since I was not properly treated the first time. Statistically, that also ups my chances of reaching SVR (sustained viral reduction).
Still pretty wiped out from fatigue, but otherwise hanging in there. Did my second shot of procrit last night, but know that it is too early for it to really be kicking in. I'm anxious to see my hemoglobin levels; have sort of lost track of them in the past few weeks.
I still have 8 days of school left, so I'm plodding along with no thought of anything but getting my work finished so I can totally relax and take things at my own pace. Thanks for checking in!!
Sunday, June 13, 2010
Look Out Below!
Well, the crash has happened. I have been more and more tired this week, and that school field trip about did me in, even though I didn't do a whole lot more than facilitate it. But even with more rest, I'm dragging pretty slow this week-end.
The procrit was ordered on Wednesday, and delivered on Friday! Can't get a whole lot better than that!! So Friday evening I did my 2 injections. It has been a struggle to stay awake for more than an hour or 2 at a time, and I just feel totally zoned out. Don't know how long it will take for the procrit to kick in, but it can't be soon enough.
Watermelon has hit the spot right now, and I've eaten about a half one today! And a grilled cheese sandwich! I've been trying to actually think about what I WANT to eat, and that helps my appetite some.
I see the thyroid dr. Wednesday to see how I'm holding up in that area. I won't be surprised if my thyroid counts are responding to the meds too. I thought I'd be real tech savvy and gave the lab my phone number to fax the results of Saturday's blookwork to me. Well, that new 4 in 1 machine still didn't get connected to the phone line, like I had planned, because I was too tired. So the phone rings last night at 2:10 a.m. and startles the heck out of us. I grab it, and there's weird noises, and I hang up. It rings again, and I realize the caller ID says Quest labs. So, I just took it off the hook and went back to sleep. Good thing I did! There were 18 missed calls listed on the phone this morning!!
That's about it for now. Still haven't had the energy to get back down to the marina and our boat, but we're hoping once I'm done with school that will happen. Thanks to everyone!!
The procrit was ordered on Wednesday, and delivered on Friday! Can't get a whole lot better than that!! So Friday evening I did my 2 injections. It has been a struggle to stay awake for more than an hour or 2 at a time, and I just feel totally zoned out. Don't know how long it will take for the procrit to kick in, but it can't be soon enough.
Watermelon has hit the spot right now, and I've eaten about a half one today! And a grilled cheese sandwich! I've been trying to actually think about what I WANT to eat, and that helps my appetite some.
I see the thyroid dr. Wednesday to see how I'm holding up in that area. I won't be surprised if my thyroid counts are responding to the meds too. I thought I'd be real tech savvy and gave the lab my phone number to fax the results of Saturday's blookwork to me. Well, that new 4 in 1 machine still didn't get connected to the phone line, like I had planned, because I was too tired. So the phone rings last night at 2:10 a.m. and startles the heck out of us. I grab it, and there's weird noises, and I hang up. It rings again, and I realize the caller ID says Quest labs. So, I just took it off the hook and went back to sleep. Good thing I did! There were 18 missed calls listed on the phone this morning!!
That's about it for now. Still haven't had the energy to get back down to the marina and our boat, but we're hoping once I'm done with school that will happen. Thanks to everyone!!
Sunday, June 6, 2010
Am I Missing Something??
Do you ever feel like you just have to be knocked upside the head to get the message?? That's where I am right now. Things continue to go wrong, and I am beginning to wonder if I'm just not getting the message I'm supposed to get!
First the good news. MRI came back free and clear and there's no sign of any growths or malignancies. Yeah! And I don't have diabetes! BUT.....I wasn't supposed to be even tested for it. The genotype test from 2 weeks ago got sent in as a diabetes test!!! i.e. human error at the drs. office. So I still don't know what I'm dealing with. And the first viral load test came back inconclusive! i.e. another lab error! What is going on here??
Good news is I changed labs very easily on Saturday, had them all redrawn, and we'll see what happens this week. Turns out my insurance covers all labs, and all I had to do was show up with the paperwork!
My hemogloblin has dropped to 11, so the order went in for Procrit to help build up the iron again. Chances are it will take some time to get that approved, but I like that my dr is being proactive, instead of waiting until it really bottoms out to get started on that. They tell me its not an immediate fix and will take some time to really notice a change.
I'm hanging in there. Finally started feeling a bit stronger on Thursday after a day off, but then had field day on Friday and was just physically wrung out by evening. My big outings this week-end were for blood work and a pedicure, and then the grocery store to pick up milk today! Mostly I sit and look at my back deck and birds, and sleep. I feel guilty not making better use of my time, but I literally don't want to write, read, or even knit.
A friend of Steve's sent us pasta for dinner Friday night, and it was wonderful. I pretty much only want to eat fruit , cereal, and yogurt, but it tasted really good and was nice to come home to. Maybe it is time to take my friends and family up on the offer to send some food in once in awhile.
I did shop for a visual reminder of my treatment progress. This is what I came up with. 2 identical vases with polished river rocks. The one on the left has 6 rocks in it for the 6 shots I've done, and the one on the right has 42 rocks left in it. What do you think??? They remind me not only of the treatment progress, but also of all your prayers and support! Thank you!
First the good news. MRI came back free and clear and there's no sign of any growths or malignancies. Yeah! And I don't have diabetes! BUT.....I wasn't supposed to be even tested for it. The genotype test from 2 weeks ago got sent in as a diabetes test!!! i.e. human error at the drs. office. So I still don't know what I'm dealing with. And the first viral load test came back inconclusive! i.e. another lab error! What is going on here??
Good news is I changed labs very easily on Saturday, had them all redrawn, and we'll see what happens this week. Turns out my insurance covers all labs, and all I had to do was show up with the paperwork!
My hemogloblin has dropped to 11, so the order went in for Procrit to help build up the iron again. Chances are it will take some time to get that approved, but I like that my dr is being proactive, instead of waiting until it really bottoms out to get started on that. They tell me its not an immediate fix and will take some time to really notice a change.
I'm hanging in there. Finally started feeling a bit stronger on Thursday after a day off, but then had field day on Friday and was just physically wrung out by evening. My big outings this week-end were for blood work and a pedicure, and then the grocery store to pick up milk today! Mostly I sit and look at my back deck and birds, and sleep. I feel guilty not making better use of my time, but I literally don't want to write, read, or even knit.
A friend of Steve's sent us pasta for dinner Friday night, and it was wonderful. I pretty much only want to eat fruit , cereal, and yogurt, but it tasted really good and was nice to come home to. Maybe it is time to take my friends and family up on the offer to send some food in once in awhile.
I did shop for a visual reminder of my treatment progress. This is what I came up with. 2 identical vases with polished river rocks. The one on the left has 6 rocks in it for the 6 shots I've done, and the one on the right has 42 rocks left in it. What do you think??? They remind me not only of the treatment progress, but also of all your prayers and support! Thank you!
Sunday, May 30, 2010
First Month Is History
Things are going pretty much as expected here. Its been 4 full weeks since I began treatment, and I'm really beginning to feel it now. I am very tired, not interested in much, losing my appetite, and pretty lackadaisical. It's a gorgeous Memorial Day week-end, and I've spent most of it bed!
Had an MRI of my liver on Wednesday to keep tabs on any possible malignant developments. I've had MRI's before, but this one seemed particularly cramped and loud. I asked the nurses what accommodations they make for patients who are on the heftier side.....I mean I'm not tiny, but pretty average size when it gets down to it. She said they have machines that are bigger, but if there are really really bigger patients they send them to the Penn veterinarian campus. I thought that was really interesting!
This week's blood work was a biggie!! First test for viral load since I began treatment. Won't hear back for a week or so, but anxious to see that number. Also, I expect the hemoglobin levels to be really down, which would explain my tiredness. They have to crash before I can start the Procrit to build them back up again. I am hoping that once that happens, I'll be able to stabilize a bit for the long term.
Fruit is the only food that I want to eat. I forced down a half of a corned beef sandwich this afternoon, and then enjoyed some watermelon!! It's so ironic for me, who has absolutely loved food her whole life!! I can't tolerate coke or Pepsi now...sends me in to a total indigestion fit. But ginger ale seems to help, and those tiny spice gumdrops help keep the bad taste out of my mouth.
Glad I still have tomorrow off before I go back to work. I still have about 20 days of school left, so summer seems a long way off yet. Happy Memorial Day and take time to stop and thank those who have served our country, and the families of those who have made the ultimate sacrifice. God Bless America
Had an MRI of my liver on Wednesday to keep tabs on any possible malignant developments. I've had MRI's before, but this one seemed particularly cramped and loud. I asked the nurses what accommodations they make for patients who are on the heftier side.....I mean I'm not tiny, but pretty average size when it gets down to it. She said they have machines that are bigger, but if there are really really bigger patients they send them to the Penn veterinarian campus. I thought that was really interesting!
This week's blood work was a biggie!! First test for viral load since I began treatment. Won't hear back for a week or so, but anxious to see that number. Also, I expect the hemoglobin levels to be really down, which would explain my tiredness. They have to crash before I can start the Procrit to build them back up again. I am hoping that once that happens, I'll be able to stabilize a bit for the long term.
Fruit is the only food that I want to eat. I forced down a half of a corned beef sandwich this afternoon, and then enjoyed some watermelon!! It's so ironic for me, who has absolutely loved food her whole life!! I can't tolerate coke or Pepsi now...sends me in to a total indigestion fit. But ginger ale seems to help, and those tiny spice gumdrops help keep the bad taste out of my mouth.
Glad I still have tomorrow off before I go back to work. I still have about 20 days of school left, so summer seems a long way off yet. Happy Memorial Day and take time to stop and thank those who have served our country, and the families of those who have made the ultimate sacrifice. God Bless America
Sunday, May 23, 2010
Weekly Update
Thank you to everyone who is following my blog! It's cool to come on and see the numbers grow! It also creates a bit of a responsibility for me to get back here and update things!
Had my first treatment dr. appointment in Philly on Thursday. The office is right on Broad Street, 2 blocks north of City Hall, and I kind of smiled to myself as I pulled into the parking garage. Toto, I don't think we're in Muncie/Cowan any more!! Anyway, it's an easy run, and I am so glad I have changed drs. The Physician Assistant follows me, under the guidance of the main dr, who happens to be chief of hepatology and gastroenterology at the university. He was around on Thursday, gave me a big smile, and actually knows who I am and stopped to talk for a minute!
No big medical changes at the appointment. My blood counts are starting to go down, so that explains my increasing fatigue, but things are off to a good start. We drew another blood sample for genotype testing and it was sent to a different lab. I am promised a call as soon as it comes in! We discussed the genotype conflict, and I got an honest to God answer that there is no doubt a lab error involved, it just depends on which end! So all I can do is wait for the new one to come in, and then have some more frank discussions. Best news would be that I am a gen 3, didn't waste the last treatment time, and still made the right decsion to get on with treatment this time.
Friday night I really got zinged with fatigue and had that first deep down to the bone need to crash. Struggled through dinner with my mother-in-law and was in bed within 10 minutes of getting home. I was SO tired, but not necessarily sleepy, so I read for awhile in bed. Saturday I felt better, and we finally got down to the marina to open up our sail boat for the season. I paced myself there, and only did a few necessities, and took a nap on a beach towel on a bare settee for an hour. We grabbed a bite to eat and came back home. I'm glad that the process is begun. I hope to spend lots of time there this summer just resting and hanging out.
The big outing for today was the grocery store! It's so foreign to me to become more dependent on Steve. I had to tell him to slow down and not walk so fast through the store. Food shopping is not nearly as interesting when you really don't care what you eat! I just smile at all the years and years I've done this by myself, in the midst of raising kids, working, running other errands, etc. Anyway, we have some basics in the house again. Cereal with a banana and a strawberry was fine for me for dinner.
My hair has changed over the last week, also. For the record, I have always had very fine, naturally wavy/curly hair with a lot of body to it. Last time I was in treatment I had it cut very short to deal with the loss of hair and I've just kept it that way. Well, now it has become very coarse and straight, almost over night. Not real attractive this minute, and I don't have a hair appointment for another 10 days! Did I tell you the dr said I can continue to have it colored and do whatever I want with it? There was a report on TV that suggested hair dye was hard on the liver, but he said it wasn't proven and not to worry about it. I wasn't sure if I could handle giving up my dirty blonde hair for natural grey right now!
I do have to honestly say that the first wave of depression has hit. That's one of the major side effects of the medications. I'm on an anti-depressant, and will keep a close eye on it to see if we have to tweak it. I was talking to my daughter just to get caught up on things, and all of a sudden I was crying. Poor thing, didn't know what had hit her!! Can't give a rhyme or reason for it, and will try really hard to boost myself up with prayer and positive thoughts. "Skyping" with our grandson has been great therapy, and I know his mom/my other daughter, goes out of her way to arrange for our little visits to cheer me up! There's nothing like seeing him run across the room to demonstrate his new sneakers to bring a smile to my face!! It's such a blessing to be living in this age of technology!!!
Had my first treatment dr. appointment in Philly on Thursday. The office is right on Broad Street, 2 blocks north of City Hall, and I kind of smiled to myself as I pulled into the parking garage. Toto, I don't think we're in Muncie/Cowan any more!! Anyway, it's an easy run, and I am so glad I have changed drs. The Physician Assistant follows me, under the guidance of the main dr, who happens to be chief of hepatology and gastroenterology at the university. He was around on Thursday, gave me a big smile, and actually knows who I am and stopped to talk for a minute!
No big medical changes at the appointment. My blood counts are starting to go down, so that explains my increasing fatigue, but things are off to a good start. We drew another blood sample for genotype testing and it was sent to a different lab. I am promised a call as soon as it comes in! We discussed the genotype conflict, and I got an honest to God answer that there is no doubt a lab error involved, it just depends on which end! So all I can do is wait for the new one to come in, and then have some more frank discussions. Best news would be that I am a gen 3, didn't waste the last treatment time, and still made the right decsion to get on with treatment this time.
Friday night I really got zinged with fatigue and had that first deep down to the bone need to crash. Struggled through dinner with my mother-in-law and was in bed within 10 minutes of getting home. I was SO tired, but not necessarily sleepy, so I read for awhile in bed. Saturday I felt better, and we finally got down to the marina to open up our sail boat for the season. I paced myself there, and only did a few necessities, and took a nap on a beach towel on a bare settee for an hour. We grabbed a bite to eat and came back home. I'm glad that the process is begun. I hope to spend lots of time there this summer just resting and hanging out.
The big outing for today was the grocery store! It's so foreign to me to become more dependent on Steve. I had to tell him to slow down and not walk so fast through the store. Food shopping is not nearly as interesting when you really don't care what you eat! I just smile at all the years and years I've done this by myself, in the midst of raising kids, working, running other errands, etc. Anyway, we have some basics in the house again. Cereal with a banana and a strawberry was fine for me for dinner.
My hair has changed over the last week, also. For the record, I have always had very fine, naturally wavy/curly hair with a lot of body to it. Last time I was in treatment I had it cut very short to deal with the loss of hair and I've just kept it that way. Well, now it has become very coarse and straight, almost over night. Not real attractive this minute, and I don't have a hair appointment for another 10 days! Did I tell you the dr said I can continue to have it colored and do whatever I want with it? There was a report on TV that suggested hair dye was hard on the liver, but he said it wasn't proven and not to worry about it. I wasn't sure if I could handle giving up my dirty blonde hair for natural grey right now!
I do have to honestly say that the first wave of depression has hit. That's one of the major side effects of the medications. I'm on an anti-depressant, and will keep a close eye on it to see if we have to tweak it. I was talking to my daughter just to get caught up on things, and all of a sudden I was crying. Poor thing, didn't know what had hit her!! Can't give a rhyme or reason for it, and will try really hard to boost myself up with prayer and positive thoughts. "Skyping" with our grandson has been great therapy, and I know his mom/my other daughter, goes out of her way to arrange for our little visits to cheer me up! There's nothing like seeing him run across the room to demonstrate his new sneakers to bring a smile to my face!! It's such a blessing to be living in this age of technology!!!
Sunday, May 16, 2010
How Am I Feeling?
I haven't said too much about how I am actually feeling, so here is a quick update. So far, so good. I did my 3rd shot Friday night, and take 1200 mg of ribivirin a day, and right now it's not too bad. I get tired, especially on the week-ends after the shot, and try to program in a good 3 hour nap on Saturday and Sunday. And this week I started taking time off work in the middle of the week to rest. But I haven't changed much about my general lifestyle yet.
I'm on a permanent stomach med (prevacid??) to deal with the severe indigestion, and sometimes I'm hungry and sometimes I'm not. Not a big deal right now.
I did have a bit of a scare Thursday. Apparently I broke a blood vessel in my eye, and it was red, but by Thursday evening looked like something from a Freddie Kougar movie!! I took Friday off to check it out, and it turned out to be no big deal. Eye involvement is one of the drug reactions they tell you to look out for, so I wanted to be sure this was nothing important.
Anyway, I'm hanging in there, and have my first dr appt on treatment Thursday. My blood work is strong, and I'm feeling okay!!
I'm on a permanent stomach med (prevacid??) to deal with the severe indigestion, and sometimes I'm hungry and sometimes I'm not. Not a big deal right now.
I did have a bit of a scare Thursday. Apparently I broke a blood vessel in my eye, and it was red, but by Thursday evening looked like something from a Freddie Kougar movie!! I took Friday off to check it out, and it turned out to be no big deal. Eye involvement is one of the drug reactions they tell you to look out for, so I wanted to be sure this was nothing important.
Anyway, I'm hanging in there, and have my first dr appt on treatment Thursday. My blood work is strong, and I'm feeling okay!!
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