In 1983 I was hospitalized for several weeks with what was later determined to be Crohn's Colitis, a combination of Crohn's disease and Ulcerative colitis. Before having surgery to remove my colon, I had several blood transfusions. A few weeks later, I was diagnosed with Non A Non B Hepatitis. No treatment was given, and it was assumed that it’d run its course and then be gone. Over the years, my liver function was tested when I’d have physicals, and it was always good. In 1994, it was determined that it was indeed Hepatitis C. To my knowledge, no one ever tested for a viral load (active virus).
In June 2009, my GP included a viral load test. I got the results of all of my labs in the mail. There were notes here and there about a few things, primarily GOOD numbers with things such as cholesterol, calcium levels, Vitamin D levels, etc. Overall, it was very good news. There was a page with the results of the viral load test and it had no notes on it. It had a number on it, 792,000, which I tried to research and found nothing. I guess both fear and denial kept me from calling to find out what it meant.
For most of 2010, I had a lot of aches and pains. I wrote them off as age and/or an autoimmune issue. I finally ended up at a Rheumatologist’s office in December. He ran lots of blood work and did many x-rays. At the same time, I was seeing a Chiropractor and was getting good results from adjustments. He suggested high doses (10 caps per day) of fish oils for inflammation, which was likely the cause of my pain. I had fabulous results and have been basically pain free since. I had also been suffering with flares of uveitis, a condition of inflammation in the eyes. The fish oil has made a huge difference with that too.
When I returned to the Rheumatologist, he was very glad to know that I had good results with fish oil because there weren’t really any drugs he could safely offer me because of the Hepatitis. He began with the good news. I do not have Lupus, and I do not have Rheumatoid Arthritis (although I do have some osteo-arthritis). But the bad news was that I do have active HepC virus. My viral load in December was 700,000. So that means it was active 18 months prior, but my viral load had gone down in that time. He suggested I see a Hepatologist.
The closest, and I’m sure the best, Hepatologists are at Ochsner in New Orleans. This is where all of my surgeries had happened so long ago. Although it is a place with bad memories for me, it is also a place of comfort. I feel safe there. When I explain my history, they know what I am talking about. First I saw a PA, whom I really liked. She spoke with confidence but not arrogance. She recommended a liver biopsy so that we could actually see if my liver is damaged. The biopsy was done May 13th (I loved the doctor!). The worst of that was the 2 week wait for results.
So May 27th, my husband, son, & I went back for the results. I’m glad they were there. It always helps to have 2 or more people listening to a doctor, plus I didn’t then have to relay it to them. I have mild stage 1 damage which was declared to be very good, considering how long I’ve had this. I had already done lots of research on my own, and knew what would come next. I will be having treatments for this. Between my viral load being low and my damage being minimal, I have a good chance of clearing this (being cured). If we wait and the viral load goes up or damage gets worse, my chances for a cure go down.
Treatment will not be a picnic. It's 48 weeks of weekly Peginterferon injections and daily Ribavirin, an oral antiviral. But there is a new drug. A brand new drug, approved May 25th will now be added. It’s an oral drug that directly attacks the HCV. It has shown to almost double the success rates of treatment. This drug may also make interferon treatment only 24 weeks which would be awesome.
I have no doubt, none at all, that I will clear this. The road may be bumpy, but I will be healed.
Friday, September 30, 2011
2011_06_04 Waiting
I am in a holding pattern right now, waiting to hear what happens next. I’ve done some research, and it seems there are cost assistance programs for these drugs. I had read how expensive they are and gotten myself very upset about it. Then it occurred to me to check on assistance. That was very good news. I’m sure there will be applications and hoops to jump through, but God hasn’t gotten me right here, right now, for it to fall apart over cash.
Although in my head I have no doubt at all about being healed, my flesh wants to freak out over what happens to get me there. I can type about it all day no problem, but say it out loud? My voice cracks and I tear up every time. It hits me hard when I am alone too. That’s usually only when I am in the car. Not the best place to have breakdowns. I am concerned about this journey. I am concerned that the drugs could make my bi-polar worse. I am concerned that they could make my autoimmune conditions worse. I am concerned about having to stop the drugs because of either of those issues. And yet I am not concerned about the final outcome. I will be healed.
So why would I voluntarily put such strong drugs in my body? Me – the non vaxing mom; the woman who avoids doctors as much as possible? Well, I hesitate to use the term faith healing, because I do believe that allopathic medicine has its place in this world, but I have faith that this is the right path. If we don’t treat this now, my viral load can rise and my liver damage can worsen, both of which make successful treatment less likely. There’s no “normal” for this disease. It could stay the same forever, or it can get much worse very quickly. The worst case would be cirrhosis or liver cancer. But I have already been assured that this is the path I am to take now. God put me in the right hands at the right times to get here.
Although in my head I have no doubt at all about being healed, my flesh wants to freak out over what happens to get me there. I can type about it all day no problem, but say it out loud? My voice cracks and I tear up every time. It hits me hard when I am alone too. That’s usually only when I am in the car. Not the best place to have breakdowns. I am concerned about this journey. I am concerned that the drugs could make my bi-polar worse. I am concerned that they could make my autoimmune conditions worse. I am concerned about having to stop the drugs because of either of those issues. And yet I am not concerned about the final outcome. I will be healed.
So why would I voluntarily put such strong drugs in my body? Me – the non vaxing mom; the woman who avoids doctors as much as possible? Well, I hesitate to use the term faith healing, because I do believe that allopathic medicine has its place in this world, but I have faith that this is the right path. If we don’t treat this now, my viral load can rise and my liver damage can worsen, both of which make successful treatment less likely. There’s no “normal” for this disease. It could stay the same forever, or it can get much worse very quickly. The worst case would be cirrhosis or liver cancer. But I have already been assured that this is the path I am to take now. God put me in the right hands at the right times to get here.
Thursday, September 29, 2011
2011_06_08 Moving forward
I just spoke with the PA again. We are moving forward. She will contact our insurance and the drug companies and facilitate the medicine delivery to me. I am assuming our insurance will leave us with a hefty co-pay, meaning phone calls to try for patient assistance. It sounds like she's willing (and accustomed to)making these calls.
For the duration of treatment plus 6 months after, we will need to use 2 forms of birth control, not hormone based. There are known birth defects with 2 of the 3 meds I'll be on. So I have an appointment to be fitted for a diaphragm. It seems silly to me, at age 44, after 23 years of marriage and no birth control to have to use birth control at all, but I will not take any warnings lightly. It seems silly, but I am getting it, and using it.
The bills are starting to come in and I'm getting nervous. It'll work out I know, but it still sucks to open the envelopes.
For the duration of treatment plus 6 months after, we will need to use 2 forms of birth control, not hormone based. There are known birth defects with 2 of the 3 meds I'll be on. So I have an appointment to be fitted for a diaphragm. It seems silly to me, at age 44, after 23 years of marriage and no birth control to have to use birth control at all, but I will not take any warnings lightly. It seems silly, but I am getting it, and using it.
The bills are starting to come in and I'm getting nervous. It'll work out I know, but it still sucks to open the envelopes.
Wednesday, September 28, 2011
2011_06_21 Roller Coaster
What a crazy few days it's been. Thursday, I got a call, THE call which I'd been waiting for, the call about the $$ copays. I sat with notepad and pen as this nice young man, Brian, gave me numbers that sent waves of adrenaline through my body.
My copay for the newest drug, Incivek, would be $4678.36 per month. He then explained that Vertex, the company that makes Incivek, had a patient assistance program in which they offer up to $10,000. Well, that pays for a little over 2 months, and it's a 3 month round of pills. That would leave us owing about $3800 for month 3.
The interferon, Pegasys, has a $449.27 copay per month. Although a much smaller amount, still out of our reach. I am already paying out over $500 per month in medical bills. Heck, I've not quite finished paying for the kidney stone Greg had last August! But this drug also has patient assistance programs.
Needless to say, the call left me very upset. Thinking about that 3rd month on Incivek made it all impossible. I had plans for the day, and kept them so as not to sit home and worry all day. The distraction was good, but in moments of quiet, my mind wandered and the adrenaline would flow. I'd taken 2 Klonipin and they weren't touching it. But I reached a point that day of simply letting go. I said quite clearly to God that He'd have to make this happen. There was no way I could do it. We couldn't come up with that much money. If it was meant to be, God would have to make the way. If He didn't, I would take it to mean this was not meant to happen now. I decided not to share my worry with Greg. That's not something I am usually able to do, but he fell asleep that night knowing nothing about it.
Friday was my "scoot down, scoot down" appointment to be fitted for a diaphragm. That was nice and uneventful. I'd purposely made an appointment with a woman, and that was easier (I'm just not okay with a male GYN anymore). She was very sweet (and very pregnant) and said all looked good. I have a prescription now for my diaphragm.
Late Friday afternoon, I got another call from Brian. He asked if I had made my calls yet, but I had not. He said he was calling with better news. Bring it. We are about $1200 from meeting our deductible($6000). But we have an annual out-of-pocket cap of $10,000. Which means after one month of these meds we'd reach that cap and I'd have no more copays. It took a long time for that to make sense to me, but I see it now. It's not that "I" have to pay out $10,000, it's that the insurance pays 80%. How that other 20% is met is between me and the service provider. So having the drug company absorb that 20% counts toward my out-of-pocket total. So I will only need assistance for the first month.
Monday I made my phone calls. That's bit of a phobia for me. I am not comfortable on the phone. I am an email person. And the idea of calling and asking for financial help just made me ill. But I did it. The Incivek people were great. It took all of 10 minutes for me to have several numbers for the pharmacy to use to process payment. It's a done deal! The Pegasys people were equally nice, but their process is a little more detailed, as they help find non-profits who help pay the copays. I should get a call from them tomorrow. But even if they don't help, I feel certain we can come up with that one copay for the first month. Of course, I'd prefer not to, but we can rob Peter to pay Paul one month if we have to.
Anyway, the ball is no longer in my court. And I finally told Greg the whole story. We are getting closer and closer. :)
My copay for the newest drug, Incivek, would be $4678.36 per month. He then explained that Vertex, the company that makes Incivek, had a patient assistance program in which they offer up to $10,000. Well, that pays for a little over 2 months, and it's a 3 month round of pills. That would leave us owing about $3800 for month 3.
The interferon, Pegasys, has a $449.27 copay per month. Although a much smaller amount, still out of our reach. I am already paying out over $500 per month in medical bills. Heck, I've not quite finished paying for the kidney stone Greg had last August! But this drug also has patient assistance programs.
Needless to say, the call left me very upset. Thinking about that 3rd month on Incivek made it all impossible. I had plans for the day, and kept them so as not to sit home and worry all day. The distraction was good, but in moments of quiet, my mind wandered and the adrenaline would flow. I'd taken 2 Klonipin and they weren't touching it. But I reached a point that day of simply letting go. I said quite clearly to God that He'd have to make this happen. There was no way I could do it. We couldn't come up with that much money. If it was meant to be, God would have to make the way. If He didn't, I would take it to mean this was not meant to happen now. I decided not to share my worry with Greg. That's not something I am usually able to do, but he fell asleep that night knowing nothing about it.
Friday was my "scoot down, scoot down" appointment to be fitted for a diaphragm. That was nice and uneventful. I'd purposely made an appointment with a woman, and that was easier (I'm just not okay with a male GYN anymore). She was very sweet (and very pregnant) and said all looked good. I have a prescription now for my diaphragm.
Late Friday afternoon, I got another call from Brian. He asked if I had made my calls yet, but I had not. He said he was calling with better news. Bring it. We are about $1200 from meeting our deductible($6000). But we have an annual out-of-pocket cap of $10,000. Which means after one month of these meds we'd reach that cap and I'd have no more copays. It took a long time for that to make sense to me, but I see it now. It's not that "I" have to pay out $10,000, it's that the insurance pays 80%. How that other 20% is met is between me and the service provider. So having the drug company absorb that 20% counts toward my out-of-pocket total. So I will only need assistance for the first month.
Monday I made my phone calls. That's bit of a phobia for me. I am not comfortable on the phone. I am an email person. And the idea of calling and asking for financial help just made me ill. But I did it. The Incivek people were great. It took all of 10 minutes for me to have several numbers for the pharmacy to use to process payment. It's a done deal! The Pegasys people were equally nice, but their process is a little more detailed, as they help find non-profits who help pay the copays. I should get a call from them tomorrow. But even if they don't help, I feel certain we can come up with that one copay for the first month. Of course, I'd prefer not to, but we can rob Peter to pay Paul one month if we have to.
Anyway, the ball is no longer in my court. And I finally told Greg the whole story. We are getting closer and closer. :)
Tuesday, September 27, 2011
2011_07_05 Waiting...
Waiting can stink, can't it? I'm choosing to be still and wait. God is never late, but He's never early either. So I am not waiting anxiously, I am not nervous, I'm not even giving much thought to this right now. There's nothing further I can or need to do right now. I'm just waiting.
Monday, September 26, 2011
2011_07_21 Shipping...
Today I got a call from the pharmacy. My medicines are shipping out today, all with a $0 co-pay. I should get them Tuesday. I still have to be taught how to give myself the shots. I don't think I have to go to New Orleans for that, but I'm not sure. I seem to remember being told this can be done locally, I'm thinking through someone at the lab. I have a follow-up appointment in New Orleans August 19, so I am really hoping I do not have to wait til then to get started. It's pretty surreal to think this is really going to happen. For over 2 months it's been *maybes* and *whens*.
Sunday, September 25, 2011
2011_07_22 And we will wait a little more
So my PA called today, confirming that my meds are on their way to me. I will be waiting until I see her to begin treatment. I'm okay with that. I'd like to get myself into a few habits before beginning anyway.
One pill is taken every 12 hours and the other is every 8 hours. My parents have gotten me a new watch (if you know me, you know I never wear a watch) so I can set timers for taking them on time (important). Also, the Incevik (3xdaily - brand new pill) has to be taken with 20g of fat. I did some quick checking, and I can cover that by taking 3 fish oil caps and a big spoon of peanut butter. The fish oil is already a part of my diet, so I'll just have to take care of the peanut butter, caloricly speaking. By the time I begin to take the drugs, I can be in the habit of getting up to take the fish oil and the peanut butter.
I'm looking forward, in a way, to getting the meds and just putting them away for a while. For a few weeks, I won't really need to think about this and I can get on with getting my mind off of me. I need to focus elsewhere for a while.
One pill is taken every 12 hours and the other is every 8 hours. My parents have gotten me a new watch (if you know me, you know I never wear a watch) so I can set timers for taking them on time (important). Also, the Incevik (3xdaily - brand new pill) has to be taken with 20g of fat. I did some quick checking, and I can cover that by taking 3 fish oil caps and a big spoon of peanut butter. The fish oil is already a part of my diet, so I'll just have to take care of the peanut butter, caloricly speaking. By the time I begin to take the drugs, I can be in the habit of getting up to take the fish oil and the peanut butter.
I'm looking forward, in a way, to getting the meds and just putting them away for a while. For a few weeks, I won't really need to think about this and I can get on with getting my mind off of me. I need to focus elsewhere for a while.
Saturday, September 24, 2011
2011_08_02 Meds are here
My medicines arrived a week ago. I'll have to share a picture of all the stuff I got with it - including a red haz-mat box for my used needles. I won't be starting treatment until I see the doc August 19th. It's been nice to not have to worry about the finances or anything else for a while. We qualified for patient assistance so the meds are all free to me (Thank you Lord!). It's also pushed us past our annual out-of-pocket limit, so all doctor visits and prescriptions will be free through December. It's nice to not have to think about that anymore too.
I scratched my cornea with a branch yesterday, and it was nice to not have to worry about affording the doctor visit or the medicine.
I scratched my cornea with a branch yesterday, and it was nice to not have to worry about affording the doctor visit or the medicine.
Friday, September 23, 2011
2011_08_16 Tuesday
Friday I will go to New Orleans for my shot training and begin my meds Friday night. I'm feeling better about it today, but yesterday I was really stuck on not being able to imagine giving myself the shots. My mood yesterday went from confident to terrified over and over again. My heart knows I'm good to go. My body is still trying to freak out. I had a bout of uveitis over the weekend, but it's better now. I feel good today. :)
So, here's the stuff I received a few weeks ago:
So much to read! So much to ignore! I've been told the major and most common side effects, and I don't need to read all of the info. I don't need to add any more concern.
Basically, the interferon makes you feel like you have the flu. Your body produces interferon when you have the flu. It's not the flu virus that makes you hurt and tired, it's the interferon.
I even got a hazardous materials box for the used syringes.
The Ribavirin is taken every 12 hours. It is the drug that messes with your head. Depression is the number 1 side effect. So I have an appointment to go over all of this with my GP (he manages my meds) and hopefully he can get me in to see a psychiatrist soon.
It is also the drug with very major risks during pregnancy, including serious birth defects or death to baby. Because of this, we have to sign something saying we are using 2 forms of birth control during treatment and for 6 months after. We've been married 23 years and used no birth control for at least 20 years. At first, I felt "great, another year and a half of no pregnancy for me." Honestly, the painful yearning for another child has waned, but I would still welcome such a blessing. I've gotten a diaphragm and was a little concerned about the interruption of the moment to use it. But Hubby's said it made him feel like a kid again (of course, not meaning little kids, just back many years). That made me smile.
The thickest booklet in the whole box is about avoiding pregnancy
A large part of it is a FAQ and myth control. That was an excellent teaching opportunity with Son, and it provided us both with some real belly laughs. For instance, the myths include; a woman is not sexually active if she does not move during intercourse, and cannot become pregnant. A woman can't get pregnant standing up, or in water, or the first time, or if she doesn't have an orgasm, or if she only misses one BC pill.
The last of my meds is Incivek, a newly approved drug which targets the HepC virus specifically. This is the magic bullet as it were. It's taken every 8 hours for 12 weeks, then I'm done with it. In trials, it doubled the successful treatment rates (from an average of about 40% to near 80%). It's ridiculously expensive, but completely covered by a grant program form the drug company. I'd imagine they get tax breaks for that.
I am at a place (and trying to stay there) of being watchful for side effects, but not worrying about them, which I believe could worsen them. Today is good!
So, here's the stuff I received a few weeks ago:
So much to read! So much to ignore! I've been told the major and most common side effects, and I don't need to read all of the info. I don't need to add any more concern.
Basically, the interferon makes you feel like you have the flu. Your body produces interferon when you have the flu. It's not the flu virus that makes you hurt and tired, it's the interferon.
It is also the drug with very major risks during pregnancy, including serious birth defects or death to baby. Because of this, we have to sign something saying we are using 2 forms of birth control during treatment and for 6 months after. We've been married 23 years and used no birth control for at least 20 years. At first, I felt "great, another year and a half of no pregnancy for me." Honestly, the painful yearning for another child has waned, but I would still welcome such a blessing. I've gotten a diaphragm and was a little concerned about the interruption of the moment to use it. But Hubby's said it made him feel like a kid again (of course, not meaning little kids, just back many years). That made me smile.
The thickest booklet in the whole box is about avoiding pregnancy
A large part of it is a FAQ and myth control. That was an excellent teaching opportunity with Son, and it provided us both with some real belly laughs. For instance, the myths include; a woman is not sexually active if she does not move during intercourse, and cannot become pregnant. A woman can't get pregnant standing up, or in water, or the first time, or if she doesn't have an orgasm, or if she only misses one BC pill.
I am at a place (and trying to stay there) of being watchful for side effects, but not worrying about them, which I believe could worsen them. Today is good!
Wednesday, September 21, 2011
2011_08_20 I did it!
So we went to NOLA yesterday for "shot training." My peace had returned and I felt confident I could do it. I go to a meeting/service at church every Friday night, and it was nice to get some prayers said over me. I just love my church so much. It's full of sincere love and generosity, and made up of some really wonderful people.
So I got home about 9:30, took out a syringe to get it to room temp, then got myself set up. Syringe - check; Needle - check; alcohol prep - check; haz mat container - check; area cleaned - check; hands clean - check; reading glass to see what I'm doing - check; hubby and son to watch - check. Then I cleaned a spot on my belly with the alcohol prep and gave myself a shot. Mosquito bites hurt more. I really felt nothing from the stick. I do a slow push to let the medicine move into my system over several seconds. Then the whole set up goes into the haz mat box. I did feel the medicine within a few minutes. It gave me a somewhat metallic taste in my mouth for a few minutes, and it felt a bit metallic in my body. I never felt sick or anything like that, just odd.
Then just an hour later, I began taking the 2 oral medicines. They didn't make me feel sick either. Per doctor's suggestion, I've upped my melatonin dose and fell asleep peacefully and slept very well. My alarm went off at 7AM for another round of pills, then back to bed for a bit. So far, I am feeling well. A bit tired, but not sick.
I just feel 100% better about the shots now. I was so afraid it would be like trying to get to a splinter with a sewing needle. Not at all. It's a very tiny, very sharp needle and it went in like my flesh was butter.
Next Thursday (and every Thursday for a while) I will go for labs. If in one week my viral load doesn't go down to under 1000, that means the medicine is not working and treatment will stop (I honestly don't remember if everything will stop, or just the Incevik - the new drug). If, however, my viral load is zero at one week and again at 4 weeks, I will qualify for 24 week treatment rather than 48. That's the miracle I am praying for! (pre-treatment viral load is just over 800,000, and that is considered low)
I ask that everyone continue to pray for me regarding side effects. I am praying for none!
So I got home about 9:30, took out a syringe to get it to room temp, then got myself set up. Syringe - check; Needle - check; alcohol prep - check; haz mat container - check; area cleaned - check; hands clean - check; reading glass to see what I'm doing - check; hubby and son to watch - check. Then I cleaned a spot on my belly with the alcohol prep and gave myself a shot. Mosquito bites hurt more. I really felt nothing from the stick. I do a slow push to let the medicine move into my system over several seconds. Then the whole set up goes into the haz mat box. I did feel the medicine within a few minutes. It gave me a somewhat metallic taste in my mouth for a few minutes, and it felt a bit metallic in my body. I never felt sick or anything like that, just odd.
Then just an hour later, I began taking the 2 oral medicines. They didn't make me feel sick either. Per doctor's suggestion, I've upped my melatonin dose and fell asleep peacefully and slept very well. My alarm went off at 7AM for another round of pills, then back to bed for a bit. So far, I am feeling well. A bit tired, but not sick.
I just feel 100% better about the shots now. I was so afraid it would be like trying to get to a splinter with a sewing needle. Not at all. It's a very tiny, very sharp needle and it went in like my flesh was butter.
Next Thursday (and every Thursday for a while) I will go for labs. If in one week my viral load doesn't go down to under 1000, that means the medicine is not working and treatment will stop (I honestly don't remember if everything will stop, or just the Incevik - the new drug). If, however, my viral load is zero at one week and again at 4 weeks, I will qualify for 24 week treatment rather than 48. That's the miracle I am praying for! (pre-treatment viral load is just over 800,000, and that is considered low)
I ask that everyone continue to pray for me regarding side effects. I am praying for none!
2011_08_29 10 days in...
Well, I'm not sure what to journal about. I've done my second shot, and am getting used to my 8 hour schedule. And I am already tired of it. I'm not going to stop or anything like that, I just hate being tied to a clock. And I hate taking medicine.
Taking pause as I remember the message in church yesterday of "It could be worse." And it could. I am still one of the lucky people who qualify for treatment. I have a new and dear friend who cannot go through treatment because of her blood counts. That has given me something to pray about, and keeps my focus - I am one of the lucky ones. Treatment could make me very sick, and it hasn't. It could make me suicidal, and it hasn't. It could make me manic, and it hasn't. It hasn't affected my vision or caused any rashes (expected side effects).
I was mistaken before about when viral load will be looked at. I thought it was week 1, but it won't be until week 4. The blood work so far was just a CBC, as many people's white and/or red blood cell count drop. Mine was fine this week. So the next goal is to have an undetectable viral load at week 4. If I am clear at week 4 and again at week 12, the treatment will only have to be 24 weeks (instead of 48). That would be miraculous, and it's what I am asking prayers for.
Taking pause as I remember the message in church yesterday of "It could be worse." And it could. I am still one of the lucky people who qualify for treatment. I have a new and dear friend who cannot go through treatment because of her blood counts. That has given me something to pray about, and keeps my focus - I am one of the lucky ones. Treatment could make me very sick, and it hasn't. It could make me suicidal, and it hasn't. It could make me manic, and it hasn't. It hasn't affected my vision or caused any rashes (expected side effects).
I was mistaken before about when viral load will be looked at. I thought it was week 1, but it won't be until week 4. The blood work so far was just a CBC, as many people's white and/or red blood cell count drop. Mine was fine this week. So the next goal is to have an undetectable viral load at week 4. If I am clear at week 4 and again at week 12, the treatment will only have to be 24 weeks (instead of 48). That would be miraculous, and it's what I am asking prayers for.
Tuesday, September 20, 2011
2011_09_14 Week 4
I've done 4 shots, and my pill bottles are getting low. It's been a weird 4 weeks. I've not really had many side effects. I am very easily fatigued, but I'm blessed to not have to be somewhere every day. When I need a break, I can take one. I've had very minimal dry skin in a few patches, not the rashes that are expected. I've had a rumbly tummy, but nothing bad. So far I haven't really noticed a mood change, but I do find I'm not as patient as I'd like to be sometimes.
While I am very thankful to feel as good as I do, a little part of me has begun to wonder if the medicines are working. I recognize that it's just the enemy trying to plant fear and doubt in me, and I able to dismiss the negative thoughts when they come. But they still come at me. I know a big part of that is knowing Friday I will see my doctor in NOLA and have a viral load test done. So far my weekly blood work has been just simple checks of red & white blood cell counts. I am praying and believing for an undetectable viral load. Those results will probably not come in until next week sometime.
While I am very thankful to feel as good as I do, a little part of me has begun to wonder if the medicines are working. I recognize that it's just the enemy trying to plant fear and doubt in me, and I able to dismiss the negative thoughts when they come. But they still come at me. I know a big part of that is knowing Friday I will see my doctor in NOLA and have a viral load test done. So far my weekly blood work has been just simple checks of red & white blood cell counts. I am praying and believing for an undetectable viral load. Those results will probably not come in until next week sometime.
2011_09_19 Waiting for results
Friday I had an appointment w/my doc. Labs were drawn just a bit before. My blood count numbers continue to drop as expected.
I am anemic (9.2 this week - normal is 12 - 16) and that is a big part of the lethargy I'm having. If that continues to drop, we have a couple of options. We can try to get insurance to pay for Procrit. It's not officially approved for HepC treatment induced anemia (it is used in cancer treatment induced anemia), so insurance may say no. It's a weekly injection, and very expensive. We also have the option of lowering my dose of Ribavirin. I currently take six pills a day, and we would start by dropping one pill daily. In clinical trials for Incivek (the new drug), when hemoglobin got below 9, Ribivarin dose was cut in half. Even with that drop, cure rates didn't drop. The Incivek is that good at enhancing the Ribavirin's effectiveness.
I am wiped out quickly after a walk. A trip to WalMart is a marathon to me right now. I am also having dry skin, slightly blurred vision, a rumbly tummy, & a bit of snarkiness mixed with tears that come at the drop of a hat. It sounds worse than it is. I'm really not inhibited by this, just a little inconvenienced.
I am a greeter at church, volunteering the 2nd & 4th Sunday of each month. I have scaled that back to only greet one service and not both on Sunday mornings, and so far that is going fine. I can sit for a few minutes if I need to, but we get very busy and the time goes by quickly. I know I need to keep serving through this ordeal. It's good to have a chance to get my mind of of myself and help some people have a good day. No matter what the rest of their day is like, they will see at least one smile (mine) and hear one hello welcoming them to church.
Friday, the viral load test was done as well (7 vials of blood taken). So much hangs on these results, yet it may take a week to get the results. If my viral load is not below 1000, we will stop treatment (as the doc puts it, we'll know it's not working). If it is zero, and is still zero at 12 weeks, I will only have to treat for 24 weeks instead of 48. I am anxious to know, but not really nervous. I just don't have fear about this. I believe God put everything in place for this to happen right now so that I can be cured and live a very long life praising Him.
I will post the viral load results as soon as I get them.
I am anemic (9.2 this week - normal is 12 - 16) and that is a big part of the lethargy I'm having. If that continues to drop, we have a couple of options. We can try to get insurance to pay for Procrit. It's not officially approved for HepC treatment induced anemia (it is used in cancer treatment induced anemia), so insurance may say no. It's a weekly injection, and very expensive. We also have the option of lowering my dose of Ribavirin. I currently take six pills a day, and we would start by dropping one pill daily. In clinical trials for Incivek (the new drug), when hemoglobin got below 9, Ribivarin dose was cut in half. Even with that drop, cure rates didn't drop. The Incivek is that good at enhancing the Ribavirin's effectiveness.
I am wiped out quickly after a walk. A trip to WalMart is a marathon to me right now. I am also having dry skin, slightly blurred vision, a rumbly tummy, & a bit of snarkiness mixed with tears that come at the drop of a hat. It sounds worse than it is. I'm really not inhibited by this, just a little inconvenienced.
I am a greeter at church, volunteering the 2nd & 4th Sunday of each month. I have scaled that back to only greet one service and not both on Sunday mornings, and so far that is going fine. I can sit for a few minutes if I need to, but we get very busy and the time goes by quickly. I know I need to keep serving through this ordeal. It's good to have a chance to get my mind of of myself and help some people have a good day. No matter what the rest of their day is like, they will see at least one smile (mine) and hear one hello welcoming them to church.
Friday, the viral load test was done as well (7 vials of blood taken). So much hangs on these results, yet it may take a week to get the results. If my viral load is not below 1000, we will stop treatment (as the doc puts it, we'll know it's not working). If it is zero, and is still zero at 12 weeks, I will only have to treat for 24 weeks instead of 48. I am anxious to know, but not really nervous. I just don't have fear about this. I believe God put everything in place for this to happen right now so that I can be cured and live a very long life praising Him.
I will post the viral load results as soon as I get them.
Monday, September 19, 2011
2011_09_19 Results
I got a very unexpected phone call this afternoon, and then this email:
___________
From: The Office of SCHEUERMANN, JENNIFER B, PA
Subject: Your Results
Date: 9/19/2011 03:49 PM
Message Sent to Patient:
I've attached your labs for your records.
Your Hepatitis C Virus is NEGATIVE!!!
Continue FULL DOSE of Pegasys, Incivek, and Ribavirin.
Jen
ELECTRONICALLY SIGNED BY Jennifer Barrett Scheuermann PAC 09/19/11 03:44:03 PM
___________
This means I will only have to continue treatment to 24 weeks (19 weeks to go). God is so great! All we have to deal with is the anemia, if it gets worse. I'm not worried about it.
___________
From: The Office of SCHEUERMANN, JENNIFER B, PA
Subject: Your Results
Date: 9/19/2011 03:49 PM
Message Sent to Patient:
I've attached your labs for your records.
Your Hepatitis C Virus is NEGATIVE!!!
Continue FULL DOSE of Pegasys, Incivek, and Ribavirin.
Jen
ELECTRONICALLY SIGNED BY Jennifer Barrett Scheuermann PAC 09/19/11 03:44:03 PM
___________
This means I will only have to continue treatment to 24 weeks (19 weeks to go). God is so great! All we have to deal with is the anemia, if it gets worse. I'm not worried about it.
Sunday, September 18, 2011
2011_10_22 Chugging along...
So it's been a while. A lot of life has been very repetitive these weeks. Every 8 hours, 2 alarms go off for me to take medicine and eat. While I have grown to hate the sounds of these alarms, I try to remember to be grateful for what they mean. I have been healed. I do not have Hepatitis C. But I do still have 3 more months of treatment to be sure it is gone and stays gone (it is , and it will).
It's like those first few weeks of taking meds were "lay away". We had something to look forward to, a goal. Well, we reached that goal 4 weeks ago. So now, it's like paying off a credit card. Not quite as motivating. And the fact that some side effects are just showing up now makes it harder. My sense of taste is all messed up. Nothing tastes right. I have itchy rashes all over. And it is an understatement to say I am cranky, and I've allowed that crankiness to ooze out rather than stifle it. I'm not much fun to be around these days.
I've also battled anemia these weeks. Normal hemoglobin is 12-16. I've always been on the low side, and began with a count of 11.7. As the weeks went by, it dropped slowly. Once we got to 9, I was just wiped out. Any walking did me in and I just felt woozy all the time. I did figure out that keeping very hydrated helped some. Two weeks ago, my # hit a low of 8.5. We dropped the dosage of Ribivarin from 6 pills daily to 5 pills daily. That first week, it went up to 8.7, and this week it's back to 9.7. I am feeling so much better. Blood and oxygen are good things. :)
And since we weren't dealing with enough, Hubby had his spinal fusion surgery 10/4. He was in the hospital for 3 days, and my wonderful sister came to stay with Son and our dogs at the house. Don't know what we'd have done without her. Well, I do know. I wouldn't have been able to stay at Hubby's side watching and praying over him. It was a break for me in a very real way. All I had to worry about was keeping me hydrated, and keeping him comfortable. All seems to have gone well in surgery, but it'll be a long healing process. His first post-op check up will be Tuesday.
Friday I will go to NOLA for my check up. I don't expect any surprises, just basic touching base about side effects. I'm not looking forward to being weighed, as I think I've gained. You'd think that taste being off would make me quit eating, but no. I just keep trying to find something that tastes right.
"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28
"For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11
It's like those first few weeks of taking meds were "lay away". We had something to look forward to, a goal. Well, we reached that goal 4 weeks ago. So now, it's like paying off a credit card. Not quite as motivating. And the fact that some side effects are just showing up now makes it harder. My sense of taste is all messed up. Nothing tastes right. I have itchy rashes all over. And it is an understatement to say I am cranky, and I've allowed that crankiness to ooze out rather than stifle it. I'm not much fun to be around these days.
I've also battled anemia these weeks. Normal hemoglobin is 12-16. I've always been on the low side, and began with a count of 11.7. As the weeks went by, it dropped slowly. Once we got to 9, I was just wiped out. Any walking did me in and I just felt woozy all the time. I did figure out that keeping very hydrated helped some. Two weeks ago, my # hit a low of 8.5. We dropped the dosage of Ribivarin from 6 pills daily to 5 pills daily. That first week, it went up to 8.7, and this week it's back to 9.7. I am feeling so much better. Blood and oxygen are good things. :)
And since we weren't dealing with enough, Hubby had his spinal fusion surgery 10/4. He was in the hospital for 3 days, and my wonderful sister came to stay with Son and our dogs at the house. Don't know what we'd have done without her. Well, I do know. I wouldn't have been able to stay at Hubby's side watching and praying over him. It was a break for me in a very real way. All I had to worry about was keeping me hydrated, and keeping him comfortable. All seems to have gone well in surgery, but it'll be a long healing process. His first post-op check up will be Tuesday.
Friday I will go to NOLA for my check up. I don't expect any surprises, just basic touching base about side effects. I'm not looking forward to being weighed, as I think I've gained. You'd think that taste being off would make me quit eating, but no. I just keep trying to find something that tastes right.
"Come to me, all you who are weary and burdened, and I will give you rest." Matthew 11:28
"For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope." Jeremiah 29:11
Saturday, September 17, 2011
2011_11_14 And then there were two...
It has now been 24 hours since I took my last dose of Incivek. No more alarms to remind me to take it and eat every 8 hours. I had ideas of how to mark the occassion: burn the last Incivek box; destroy violently the phone whose alarms have come to make my skin crawl; sell the watch that has felt like a hospital bracelet to me. But I think I'm going to skip the drama. I shared the news with several friends at church yesterday and got many congratulatory hugs. And of course my family is as happy as I am. So I consider the event "marked", and will be moving along.
I am anxious to see which side effects begin to leave me. My anemia should begin to improve, although the Ribavirin contributes to it as well. The worst side effect currently is my messed up taste. Things just taste wrong. Food textures are wrong. It's hard. I am hungry but I can't enjoy eating. I'm also not cooking very well since I am really guessing on my seasonings. My guys are doing a lot of seasoning at the table these days.
But I still try to stay away from the drama of feeling sorry for myself. This has been hard, and I acknowledge that. But in the grand scheme of things, this is a blip in time, a bump in the road. I have not forgotten that I have been healed. I have not forgotten that not everyone will have the opportunity I've had. As much as I hate taking these meds, and as grateful as I am to be done with the Incivek, I am equally grateful to have them. God has continually showed up and carried me through the rough spots. I expect no less in these second 12 weeks of treatment. Thank you Father for setting me free!
UPDATE: The 12 week viral test has also come back Negative! Yay!
I am anxious to see which side effects begin to leave me. My anemia should begin to improve, although the Ribavirin contributes to it as well. The worst side effect currently is my messed up taste. Things just taste wrong. Food textures are wrong. It's hard. I am hungry but I can't enjoy eating. I'm also not cooking very well since I am really guessing on my seasonings. My guys are doing a lot of seasoning at the table these days.
But I still try to stay away from the drama of feeling sorry for myself. This has been hard, and I acknowledge that. But in the grand scheme of things, this is a blip in time, a bump in the road. I have not forgotten that I have been healed. I have not forgotten that not everyone will have the opportunity I've had. As much as I hate taking these meds, and as grateful as I am to be done with the Incivek, I am equally grateful to have them. God has continually showed up and carried me through the rough spots. I expect no less in these second 12 weeks of treatment. Thank you Father for setting me free!
UPDATE: The 12 week viral test has also come back Negative! Yay!
Friday, September 16, 2011
2011_12_31 Side swiped
Two weeks ago, I landed in the hospital with intestinal blockage. I spent 6 days on too much pain medicine and very little food or drink. All of this has gotten better. I've not had cravings for more pain medicine - in the past I have had problems with that. All of the tests I've had have come back good. I had an upper GI Thursday and a very small ulcer was found in my stomach. So I'm on medicine for that for a month, then we'll repeat the GI scope to be sure it's healing. I'm adding papaya enzymes to my supplements to help digestion. I'm not going to start taking this medicine and stay on it (it's something like Nexium or Prilosec).
I was home for Christmas, but somehow feel I missed out on it. My shopping was done online before my hospital stay, and Hubby & Son got the tree up and decorated w/out me. Hubby even got the gifts wrapped. My mom had brought us some very wonderful food, including the makings for a great Christmas dinner. It was just the 3 of us, which was nice. Low key was what I needed. I think it's what we all needed after being apart for almost a week. That's the longest (by far) amount of time we've ever been apart.
I am in the final 5 weeks of treatment! This time really has gone quickly. I've had side effects, some quite frustrating (taste), but I've not felt as bad as I could have, or even expected to. My taste buds have gotten a bit better since stopping Incevik, as has my anemia. I still tire easily and am out of breath after the shortest walks, but it's better than before.
Friday was a trip to NOLA to see the Hepatologist. We all like her so much. She's been great support through this. They even knew I had been in the hospital (all are Ochsner facilities), and were in touch with my hospital docs. So I was able to continue my HepC meds in hospital. I only missed one dose of Ribavirin the night I was in ER. Anyhoo, I will be their first Incevik patient to finish treatment! Two other people started around the time I did, but neither qualified for the 24 week protocol, they have to go the full 48 weeks. I'll see Jen (hepatologist) again 3 months after ending treatment for another viral load test, then again at 6 months after ending treatment. At that point, assuming as I do that all tests will be negative, I will be considered cured. I've been cured since week 4 when I had my first Negative test result, but it will be nice to know they consider me cured too. I asked if I could now be a blood or organ doner, and I won't. The antibodies will always be there and a routine screen is just a test for the antibodies. Perhaps one day an easy viral load test could show I'm cured, but for now the screening eliminates anyone who tests positive for the antibodies. I'm a bit disappointed. I've always hated having to turn down requests for blood donation. And I really hate being asked if I'm an organ donor. "No" just makes me feel like a jerk. But the answer remains "No, I've had Hepatitis C". That is better than having to say "I have Hepatitis C", but still sucks.
Happy New Year!!!
I was home for Christmas, but somehow feel I missed out on it. My shopping was done online before my hospital stay, and Hubby & Son got the tree up and decorated w/out me. Hubby even got the gifts wrapped. My mom had brought us some very wonderful food, including the makings for a great Christmas dinner. It was just the 3 of us, which was nice. Low key was what I needed. I think it's what we all needed after being apart for almost a week. That's the longest (by far) amount of time we've ever been apart.
I am in the final 5 weeks of treatment! This time really has gone quickly. I've had side effects, some quite frustrating (taste), but I've not felt as bad as I could have, or even expected to. My taste buds have gotten a bit better since stopping Incevik, as has my anemia. I still tire easily and am out of breath after the shortest walks, but it's better than before.
Friday was a trip to NOLA to see the Hepatologist. We all like her so much. She's been great support through this. They even knew I had been in the hospital (all are Ochsner facilities), and were in touch with my hospital docs. So I was able to continue my HepC meds in hospital. I only missed one dose of Ribavirin the night I was in ER. Anyhoo, I will be their first Incevik patient to finish treatment! Two other people started around the time I did, but neither qualified for the 24 week protocol, they have to go the full 48 weeks. I'll see Jen (hepatologist) again 3 months after ending treatment for another viral load test, then again at 6 months after ending treatment. At that point, assuming as I do that all tests will be negative, I will be considered cured. I've been cured since week 4 when I had my first Negative test result, but it will be nice to know they consider me cured too. I asked if I could now be a blood or organ doner, and I won't. The antibodies will always be there and a routine screen is just a test for the antibodies. Perhaps one day an easy viral load test could show I'm cured, but for now the screening eliminates anyone who tests positive for the antibodies. I'm a bit disappointed. I've always hated having to turn down requests for blood donation. And I really hate being asked if I'm an organ donor. "No" just makes me feel like a jerk. But the answer remains "No, I've had Hepatitis C". That is better than having to say "I have Hepatitis C", but still sucks.
Happy New Year!!!
Thursday, September 15, 2011
2012_01_17 Last call...
I got a call today from the pharmacy handling my meds. The girl was calling to set up my next delivery. I got to tell her, with much joy, that I was ending treatment at 24 weeks instead of 48 weeks (still considered the "norm"), and that I didn't need any refills! Seventeen days to go!
The anemia is really doing me in these days. I can't stand for long, and my heart beats very hard and quickly with any activity. I'm looking forward to seeing just how quickly my hemoglobin bounces back. It'll be so nice to feel better and to be able to do what I want to do. Maybe I'll get to garden this spring!
The anemia is really doing me in these days. I can't stand for long, and my heart beats very hard and quickly with any activity. I'm looking forward to seeing just how quickly my hemoglobin bounces back. It'll be so nice to feel better and to be able to do what I want to do. Maybe I'll get to garden this spring!
Wednesday, September 14, 2011
2012_02_13 Il est fait!
It is done.
Friday, February 3rd, I took my last dose of HepC medication. Once again, blood tests show I am Negative for a viral load. :) I never dreamed I would go through treatment, successfully, and do it in just 24 weeks (the standard is 48 weeks). I had someone call me out for referring to my healing as a miracle, since I was cured by medicine. But you'd have to look at the big picture. Everything fell into place perfectly bit by bit, the steps were indeed ordained by God. Nothing can make me feel otherwise. I know. I walked it.
Since finishing, my energy level has gotten so much better. I've only felt woozie upon standing once or twice. And Friday I was able to walk up a flight of stairs. Well, considering the building, more like 2 flights. I was a little winded, heart pounding a little, but I recovered quickly. For the most part, my taste has returned to normal. Chocolate and baked goods are still not quite right. And I finally learned to stop eating something when it tastes wrong. It's okay to throw it away if I am not enjoying it. I have lost 10 pounds since Christmas. I'm not compelled to eat as I was in the past. I don't think that's related to the medicine. I'm just not thinking about food much anymore. There are too many other things to occupy my time. God has not only healed me physically, He's fixing my heart too. This experience has shown me how very blessed we are, and how much we can help other hurting people. We are blessed to be a blessing to others.
Friday, February 3rd, I took my last dose of HepC medication. Once again, blood tests show I am Negative for a viral load. :) I never dreamed I would go through treatment, successfully, and do it in just 24 weeks (the standard is 48 weeks). I had someone call me out for referring to my healing as a miracle, since I was cured by medicine. But you'd have to look at the big picture. Everything fell into place perfectly bit by bit, the steps were indeed ordained by God. Nothing can make me feel otherwise. I know. I walked it.
Since finishing, my energy level has gotten so much better. I've only felt woozie upon standing once or twice. And Friday I was able to walk up a flight of stairs. Well, considering the building, more like 2 flights. I was a little winded, heart pounding a little, but I recovered quickly. For the most part, my taste has returned to normal. Chocolate and baked goods are still not quite right. And I finally learned to stop eating something when it tastes wrong. It's okay to throw it away if I am not enjoying it. I have lost 10 pounds since Christmas. I'm not compelled to eat as I was in the past. I don't think that's related to the medicine. I'm just not thinking about food much anymore. There are too many other things to occupy my time. God has not only healed me physically, He's fixing my heart too. This experience has shown me how very blessed we are, and how much we can help other hurting people. We are blessed to be a blessing to others.
Monday, September 12, 2011
2012_10_15 Wrap up
So it's now been 8 months since I completed treatment. It's hard to remember at this point. In August, I had my 6 month post-treatment blood work. My viral load was once again negative. This is called SVR - sustained virological response. That's as close as the medical community gets to saying "cured". So now my medical history no longer says "has Hep C." It now says "history of Hep C." I'll take it!
There have been no lasting ill effects. My hemoglobin returned to normal within a few weeks of ending treatment. It's hard to remember how weak I felt. It's hard to remember that I gave myself shots. And the watch which I grew to hate because of the alarms & timers that tied me to medicine has become a nice addition to my wardrobe. I'm not sure I could even set an alarm without the handbook at this point.
My doctor put it well: It's not easy, but it's doable. Every case is different, but for me, it wasn't as bad as I expected. And it was so very worth it!
The End
There have been no lasting ill effects. My hemoglobin returned to normal within a few weeks of ending treatment. It's hard to remember how weak I felt. It's hard to remember that I gave myself shots. And the watch which I grew to hate because of the alarms & timers that tied me to medicine has become a nice addition to my wardrobe. I'm not sure I could even set an alarm without the handbook at this point.
My doctor put it well: It's not easy, but it's doable. Every case is different, but for me, it wasn't as bad as I expected. And it was so very worth it!
The End
Saturday, September 10, 2011
Thursday, September 1, 2011
2014_08_13 Last test...
Last Thursday, I went for my final lab work, 2.5 years post-treatment. I received this email today -
"Comments from the Doctor's Office: Hep C virus still NEGATIVE, as we'd expect. We do NOT need to check it anymore. Hope you're doing well. Jen"
YAY!
"Comments from the Doctor's Office: Hep C virus still NEGATIVE, as we'd expect. We do NOT need to check it anymore. Hope you're doing well. Jen"
YAY!
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