I can't even begin to tell you how I feel right now. The whole idea of my husband not being on treatment is surreal. I feel like I dreamt that we went to the doctor, and I'm waiting to wake up.
Quite honestly, I know that right now my husband dreads the mere thought of going back on the treatment. It took everything out of him. I only hope that these feelings will pass. I know he had a really hard time. Words can't even describe how he felt. At times, he literally thought he might be dying. And still I can't help but feel it might be the only hope for us to have a future together.
Which is why I cried today when I saw the comment that Sheba left for me. She understands my hope and my fear. I read it to my husband. I just hope her words run through his mind if he gets the option to go back on treatment.
Thank you Sheba.
Thursday, October 15, 2009
Tuesday, October 13, 2009
Wk 12 Results Are In ... The Virus is Undetectable!
Good news. For the first time, the virus is totally undetectable!!
Although, we have hit a small bump in the road. The doctor is very concerned that my husband is experiencing such severe shortness of breath. The blood test did reveal that Steve is anemic (RBC 9.4), and the anemia could be the cause. However, since Steve's father had a history of heart disease, the doctor doesn't want to take any chances. He is ordering Procrit to increase his red blood cell count and temporarily taking Steve off the treatment.
The doctor wants Steve to see a cardiologist and have a stress test before he continues any further. If everything goes well with the stress test, he is going to go back on the treatment but this time with the addition of the Procrit.
I didn't know how Steve was going to react, but he was actuallly relieved. I think the doctor gave him the ok to do what he knew needed to be done. When we were leaving the building, he sat down on a bench in the doorway and started crying (sobbing). He then said, "At least we know it works, but I just couldn't take it anymore."
Right now he is looking forward to getting his strength back. A few minutes ago, he was talking about how he is going to prepare himself both mentally and physically to restart the treatment. At least now, he knows what to expect and hopefully with the addition of the procrit he'll have a better experience.
Most important is the fact that the triple therapy worked...at least up to this point. So there is hope, not only for my husband, but for others with genotype 4 (and studies are currently being conducted on genotype 1 as well).
Although, we have hit a small bump in the road. The doctor is very concerned that my husband is experiencing such severe shortness of breath. The blood test did reveal that Steve is anemic (RBC 9.4), and the anemia could be the cause. However, since Steve's father had a history of heart disease, the doctor doesn't want to take any chances. He is ordering Procrit to increase his red blood cell count and temporarily taking Steve off the treatment.
The doctor wants Steve to see a cardiologist and have a stress test before he continues any further. If everything goes well with the stress test, he is going to go back on the treatment but this time with the addition of the Procrit.
I didn't know how Steve was going to react, but he was actuallly relieved. I think the doctor gave him the ok to do what he knew needed to be done. When we were leaving the building, he sat down on a bench in the doorway and started crying (sobbing). He then said, "At least we know it works, but I just couldn't take it anymore."
Right now he is looking forward to getting his strength back. A few minutes ago, he was talking about how he is going to prepare himself both mentally and physically to restart the treatment. At least now, he knows what to expect and hopefully with the addition of the procrit he'll have a better experience.
Most important is the fact that the triple therapy worked...at least up to this point. So there is hope, not only for my husband, but for others with genotype 4 (and studies are currently being conducted on genotype 1 as well).
Saturday, October 10, 2009
The Transmission of Hepatitis C
Many people are ill-informed when it comes to the transmission of Hepatitis C. You will not get it from mere exposure to a person who has the Hep C Virus (even if the person sneezes or coughs on you). It is typically transmitted through contact with blood.
However, that doesn’t mean that we don’t take precautions. My doctor has advised us:
My husband contracted the disease several years before I met him. We were together 8 years before he was diagnosed, and I don’t have Hep (neither does his ex-wife).
However, that doesn’t mean that we don’t take precautions. My doctor has advised us:
- NEVER use each other’s razor, toothbrush or nail clipper
- Don’t do anything sexually that is likely to result in bleeding (For lack of a better metaphor, using the back door instead of the front).
- Don’t use each other’s comb or hair brush
Since my husband’s blood test showed that he could be a carrier for Hep B, I received a series of shots to inoculate me against Hep B as well.
If you’d like more info on the transmission of Hep C, here are some helpful links.
Saturday, October 3, 2009
Week 12, and I'm An Emotional Wreck
At the end of the week, my husband goes for the blood test that will determine if he continues treatment. He really needs the treatment, because his last liver biopsy revealed that the liver disease has progressed to stage 3/grade 3 (the next stage is cirrhosis).
So this week I am the emotional wreck. I've been feeling like I could cry at the drop of a hat and I have. Watching him go through this and wondering if he is going to be able to tolerate another 36 weeks is really getting to me. (That is if this blood test shows that the Hepatitis C viral load is undetectable. Otherwise, it's a mute point. The treatment will be discontinued.)
He has been pretty miserable. Constantly freezing, to the point that his nose starts to run, even though it's 78 degrees in the house. He's developed Pruritus, aka the Ribavirin Rash, on his legs and his entire body itches~ especially at night. So he is having a hard time sleeping. On top of that, everything he eats is making him sick. (Oddly enough, the only protein he seems to be able to tolerate is ground beef. But he can't eat that everyday!) And he is still getting very short of breath and dizzy. Yesterday he walked the dogs in the morning (I was at work), and on the way back it hit him. Luckily, he didn't try to make it the rest of the way. He went to a staircase in front of a buiding and sat there until it passed. When I got home last night, he told me that he feels like the treatment is sucking the life out of him.
I can't help but wonder if he is right. I feel like he could really be endangering himself, but he doesn't want me to call the doctor. He wants to wait until his appointment, October 13th, so he can get the results of this blood test. I'm so afraid that something is going to happen to him, but I have to respect his wishes. If I call the doctor, and he is taken off the treatment, he will always wonder if he would have been cured. And more importantly, this is literally a decision that will affect the rest of his life, and that is not my decision to make.
So this week I am the emotional wreck. I've been feeling like I could cry at the drop of a hat and I have. Watching him go through this and wondering if he is going to be able to tolerate another 36 weeks is really getting to me. (That is if this blood test shows that the Hepatitis C viral load is undetectable. Otherwise, it's a mute point. The treatment will be discontinued.)
He has been pretty miserable. Constantly freezing, to the point that his nose starts to run, even though it's 78 degrees in the house. He's developed Pruritus, aka the Ribavirin Rash, on his legs and his entire body itches~ especially at night. So he is having a hard time sleeping. On top of that, everything he eats is making him sick. (Oddly enough, the only protein he seems to be able to tolerate is ground beef. But he can't eat that everyday!) And he is still getting very short of breath and dizzy. Yesterday he walked the dogs in the morning (I was at work), and on the way back it hit him. Luckily, he didn't try to make it the rest of the way. He went to a staircase in front of a buiding and sat there until it passed. When I got home last night, he told me that he feels like the treatment is sucking the life out of him.
I can't help but wonder if he is right. I feel like he could really be endangering himself, but he doesn't want me to call the doctor. He wants to wait until his appointment, October 13th, so he can get the results of this blood test. I'm so afraid that something is going to happen to him, but I have to respect his wishes. If I call the doctor, and he is taken off the treatment, he will always wonder if he would have been cured. And more importantly, this is literally a decision that will affect the rest of his life, and that is not my decision to make.
Tuesday, September 29, 2009
Thank You for Your Comments & Support
Sometimes I feel so isolated. It's really hard watching someone you love deteriorating right before your eyes; and there is nothing that you can do, because the very thing that is eating them up inside is the only hope of a cure. But when I get your comments, I know that I am not alone. We are not alone. And I thank you so much for being there!! You are the best medicine ~ for my husband and for me. So I just want to say thank you.
Sunday, September 27, 2009
Disability Hearing Scheduled
We heard from Social Security. My husband’s hearing is set for December 4th. I am not hopeful. As I said before, it is my understanding that in order to qualify for disability under Hepatitis C, your symptoms have to be extreme, i.e. internal bleeding, severe encephalopathy or on the transplant list. They don’t take into account the extreme fatigue, lack of stamina, and depression resulting from hep c.
I hope I’m wrong. I’ll let you. But if you’d like to get some info for yourself, the address is: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05.
Keep in mind that you may qualify under another category, such as mental disorder for depression. There’s a lot of important information on Social Security’s website. If we knew then, what we know now, we would have gone about the entire process very differently. So I hope someone out there can benefit from the lessons we have learned.
I hope I’m wrong. I’ll let you. But if you’d like to get some info for yourself, the address is: http://www.ssa.gov/disability/professionals/bluebook/5.00-Digestive-Adult.htm#5_05.
Keep in mind that you may qualify under another category, such as mental disorder for depression. There’s a lot of important information on Social Security’s website. If we knew then, what we know now, we would have gone about the entire process very differently. So I hope someone out there can benefit from the lessons we have learned.
Wednesday, September 16, 2009
The Emotional Roller Coaster that is Hep C
Tonight was shot night- week 10. I hope this week is better than last week. Last week was truly rough. Steve was feeling really awful. Constantly dizzy and nauseous.
Early in the week he became very emotional. He started recounting his life, thinking about all the things he would have done differently, and all the words he'll never have the opportunity to say. He even cried uncontrollably for hours.
By the end of the week, he was miserable and frustrated, Everything was irritating him. And I have to admit, it got to me. I couldn't take it anymore, and we started arguing over the smallest things. It was rediculous. Luckily, we realized that the stress had gotten the best of us. We talked it out, and this week is off to a much better start.
Early in the week he became very emotional. He started recounting his life, thinking about all the things he would have done differently, and all the words he'll never have the opportunity to say. He even cried uncontrollably for hours.
By the end of the week, he was miserable and frustrated, Everything was irritating him. And I have to admit, it got to me. I couldn't take it anymore, and we started arguing over the smallest things. It was rediculous. Luckily, we realized that the stress had gotten the best of us. We talked it out, and this week is off to a much better start.
Saturday, September 12, 2009
Study Shows Nitazoxanide Could Have the Potential to Eliminate the Need for Ribavirin in the Treatment of Hepatitis C
Found an article on Medical News Today's website that suggests that treatment with Nitazoxanide (Alinia) and peginterferon alpha-2a could have the potential to eliminate the need for ribavirin in the future. Thought it was interesting. Hope you do as well.
Romark Announces Presentation Of New Data For Nitazoxanide In Chronic Hepatitis C At AASLD 2008
Article Date: 04 Nov 2008 - 0:00 PDT
"Romark Laboratories, a privately held biopharmaceutical company, announced that data from studies of nitazoxanide in chronic hepatitis C virus (HCV) infection are being communicated in three presentations made at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD), also known as The Liver Meeting(R), and the 50th Anniversary Meeting of the International Association for the Study of the Liver (IASL) in San Francisco, October 31 - November 4, 2008."These new studies confirm earlier data suggesting synergistic activity between nitazoxanide and peginterferon in genotype 4 patients and provide a first look at sustained virologic response in a limited number of genotype 1 patients," said Jean-Francois Rossignol, M.D., Chief Science Officer of Romark Laboratories and discoverer of nitazoxanide. "These data also provide interesting insights into the mechanism of action of nitazoxanide, including a potential role for its combination with STAT-C drugs, and confirm previous findings related to its safety."The three presentations include:-- "Evaluation of a 4 Week Lead-In Phase with Nitazoxanide (NTZ) Prior to Peginterferon (PEGIFN) Plus NTZ for Treatment of Chronic Hepatitis C: Final Report," J.F. Rossignol et al., Sunday, November 2, 4:15 PM PST (Oral Session IASL #87), and Tuesday, November 4, 8:00 AM - 12:30 PM PST (AASLD Presidential Poster #1848)In this Phase II study, 44 patients (40 with HCV genotype 4; 3 with HCV genotype 1; and 1 with HCV genotype 2) received 4 weeks of nitazoxanide 500 mg twice daily followed by Pegasys(R) (peginterferon alfa-2a) and nitazoxanide for 36 weeks. Data from Romark's STEALTH C-1 trial was used as an historical control. Analysis of data was by intention-to-treat.Thirty-five of 44 patients (80%) treated with a 4-week lead-in phase of nitazoxanide followed by the addition of peginterferon for 36 weeks experienced a SVR 24 weeks after the end of treatment compared to 50% in the standard of care (SOC, peginterferon alfa-2a plus ribavirin for 48 weeks) historical control group (P = 0.006), 61% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus peginterferon alfa-2a, and 79% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus SOC.Of the 44 patients in the study, 78% (n=40) of patients with HCV genotype 4, 100% (n=3) of patients with HCV genotype 1, and 100% (n=1) of HCV genotype 2, had an SVR with undetectable virus at 24 weeks following end of treatment.Adverse events reported for these 44 patients were similar to those reported in the STEALTH C-1 trial. Patients treated with nitazoxanide experienced no more side effects than patients who received the SOC therapy. Only one of the 44 patients discontinued therapy due to noncompliance. There were no serious adverse events or discontinuations due to adverse events."These data confirm findings of our STEALTH C-1 trial related to safety and efficacy of nitazoxanide in patients infected with HCV genotype 4, show that the nitazoxanide lead-in phase prior to standard of care treatment can be reduced from 12 to 4 weeks, and indicate that ribavirin may not be needed to maintain SVR," said Emmet B. Keeffe, M.D., Chief Medical Officer of Romark Laboratories.-- "Potential Role for Nitazoxanide in Combination with STAT-C Agents for the Inhibition of HCV Replication Without the Development of Resistance," Korba, et al. Sunday Nov. 2, 5:30 PM PST (Oral Session #115)This oral presentation by Brent Korba, Ph.D. of Georgetown University Medical Center, described preclinical studies demonstrating synergistic interactions between nitazoxanide and direct-acting antiviral drugs targeting NS5B (2'C methylcytidine and HCV-796) and NS3 (telaprevir and BILN-2061) in HCV replicons. Nitazoxanide was also active against telaprevir- and 2'C methylcytidine-resistant mutant replicons. The authors concluded that nitazoxanide is a good candidate for combination therapies with STAT-C agents in the absence of interferon or ribavirin.-- "Nitazoxanide (NTZ) is an Inducer of eIF2a and PKR phosphorylation," Elazar et al., Tuesday, November 4, 8:00 AM - 12:30 PM PST (Poster #1881)This poster presentation by Menashe Elazar, Ph.D. of the Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University School of Medicine, showed that nitazoxanide increases the intracellular levels of phosphorylated eukaryotic translation initiation factor 2alpha (eIF2alpha), a key mediator of host cell antiviral defenses. Co-treatment with interferon increased nitazoxanide-induced eIF2alpha phosphorylation. . Nitazoxanide was also shown to increase the phosphorylation of protein kinase R (PKR), a key step in the activation of PKR's kinase activity towards eIF2alpha."Data presented in each of these communications has provided important information in guiding the ongoing clinical development of nitazoxanide," said Dr. Rossignol.About Hepatitis CHepatitis C is a blood-borne infectious disease that is caused by the hepatitis C virus (HCV). It is the most common cause of chronic hepatitis in the U.S. and may eventually lead to cirrhosis, liver cancer and liver failure. The disease is transmitted by contact with HCV-infected blood. A large majority of those infected do not show symptoms, but fatigue, abdominal pain and nausea can be common. The current standard treatment of care, peginterferon and ribavirin, is effective in about half of all patients treated. According to the Centers for Disease Control, HCV affects an estimated 4.1 million Americans.About Romark LaboratoriesRomark Laboratories (http://www.romark.com/news/11032008.aspx), a privately held biopharmaceutical company, has discovered and developed a new class of small molecule antivirals known as thiazolides. The Company is developing nitazoxanide, the first of the thiazolide class, for the treatment of chronic hepatitis C, and is developing other new thiazolides for treating viral diseases including chronic hepatitis B. Alinia(R) (nitazoxanide) is approved by the U.S. Food and Drug Administration and marketed by Romark for the treatment of Cryptosporidium and Giardia infection.Romark Laboratories http://www.romark.com/news/11032008.aspx
I found the article in Medical News today. To access the article directly, the address is: http://www.medicalnewstoday.com/articles/127968.php.
Romark Announces Presentation Of New Data For Nitazoxanide In Chronic Hepatitis C At AASLD 2008
Article Date: 04 Nov 2008 - 0:00 PDT
"Romark Laboratories, a privately held biopharmaceutical company, announced that data from studies of nitazoxanide in chronic hepatitis C virus (HCV) infection are being communicated in three presentations made at the 59th Annual Meeting of the American Association for the Study of Liver Diseases (AASLD), also known as The Liver Meeting(R), and the 50th Anniversary Meeting of the International Association for the Study of the Liver (IASL) in San Francisco, October 31 - November 4, 2008."These new studies confirm earlier data suggesting synergistic activity between nitazoxanide and peginterferon in genotype 4 patients and provide a first look at sustained virologic response in a limited number of genotype 1 patients," said Jean-Francois Rossignol, M.D., Chief Science Officer of Romark Laboratories and discoverer of nitazoxanide. "These data also provide interesting insights into the mechanism of action of nitazoxanide, including a potential role for its combination with STAT-C drugs, and confirm previous findings related to its safety."The three presentations include:-- "Evaluation of a 4 Week Lead-In Phase with Nitazoxanide (NTZ) Prior to Peginterferon (PEGIFN) Plus NTZ for Treatment of Chronic Hepatitis C: Final Report," J.F. Rossignol et al., Sunday, November 2, 4:15 PM PST (Oral Session IASL #87), and Tuesday, November 4, 8:00 AM - 12:30 PM PST (AASLD Presidential Poster #1848)In this Phase II study, 44 patients (40 with HCV genotype 4; 3 with HCV genotype 1; and 1 with HCV genotype 2) received 4 weeks of nitazoxanide 500 mg twice daily followed by Pegasys(R) (peginterferon alfa-2a) and nitazoxanide for 36 weeks. Data from Romark's STEALTH C-1 trial was used as an historical control. Analysis of data was by intention-to-treat.Thirty-five of 44 patients (80%) treated with a 4-week lead-in phase of nitazoxanide followed by the addition of peginterferon for 36 weeks experienced a SVR 24 weeks after the end of treatment compared to 50% in the standard of care (SOC, peginterferon alfa-2a plus ribavirin for 48 weeks) historical control group (P = 0.006), 61% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus peginterferon alfa-2a, and 79% in patients receiving a 12-week lead-in with nitazoxanide followed by 36 weeks of nitazoxanide plus SOC.Of the 44 patients in the study, 78% (n=40) of patients with HCV genotype 4, 100% (n=3) of patients with HCV genotype 1, and 100% (n=1) of HCV genotype 2, had an SVR with undetectable virus at 24 weeks following end of treatment.Adverse events reported for these 44 patients were similar to those reported in the STEALTH C-1 trial. Patients treated with nitazoxanide experienced no more side effects than patients who received the SOC therapy. Only one of the 44 patients discontinued therapy due to noncompliance. There were no serious adverse events or discontinuations due to adverse events."These data confirm findings of our STEALTH C-1 trial related to safety and efficacy of nitazoxanide in patients infected with HCV genotype 4, show that the nitazoxanide lead-in phase prior to standard of care treatment can be reduced from 12 to 4 weeks, and indicate that ribavirin may not be needed to maintain SVR," said Emmet B. Keeffe, M.D., Chief Medical Officer of Romark Laboratories.-- "Potential Role for Nitazoxanide in Combination with STAT-C Agents for the Inhibition of HCV Replication Without the Development of Resistance," Korba, et al. Sunday Nov. 2, 5:30 PM PST (Oral Session #115)This oral presentation by Brent Korba, Ph.D. of Georgetown University Medical Center, described preclinical studies demonstrating synergistic interactions between nitazoxanide and direct-acting antiviral drugs targeting NS5B (2'C methylcytidine and HCV-796) and NS3 (telaprevir and BILN-2061) in HCV replicons. Nitazoxanide was also active against telaprevir- and 2'C methylcytidine-resistant mutant replicons. The authors concluded that nitazoxanide is a good candidate for combination therapies with STAT-C agents in the absence of interferon or ribavirin.-- "Nitazoxanide (NTZ) is an Inducer of eIF2a and PKR phosphorylation," Elazar et al., Tuesday, November 4, 8:00 AM - 12:30 PM PST (Poster #1881)This poster presentation by Menashe Elazar, Ph.D. of the Division of Gastroenterology and Hepatology, Department of Medicine, Stanford University School of Medicine, showed that nitazoxanide increases the intracellular levels of phosphorylated eukaryotic translation initiation factor 2alpha (eIF2alpha), a key mediator of host cell antiviral defenses. Co-treatment with interferon increased nitazoxanide-induced eIF2alpha phosphorylation. . Nitazoxanide was also shown to increase the phosphorylation of protein kinase R (PKR), a key step in the activation of PKR's kinase activity towards eIF2alpha."Data presented in each of these communications has provided important information in guiding the ongoing clinical development of nitazoxanide," said Dr. Rossignol.About Hepatitis CHepatitis C is a blood-borne infectious disease that is caused by the hepatitis C virus (HCV). It is the most common cause of chronic hepatitis in the U.S. and may eventually lead to cirrhosis, liver cancer and liver failure. The disease is transmitted by contact with HCV-infected blood. A large majority of those infected do not show symptoms, but fatigue, abdominal pain and nausea can be common. The current standard treatment of care, peginterferon and ribavirin, is effective in about half of all patients treated. According to the Centers for Disease Control, HCV affects an estimated 4.1 million Americans.About Romark LaboratoriesRomark Laboratories (http://www.romark.com/news/11032008.aspx), a privately held biopharmaceutical company, has discovered and developed a new class of small molecule antivirals known as thiazolides. The Company is developing nitazoxanide, the first of the thiazolide class, for the treatment of chronic hepatitis C, and is developing other new thiazolides for treating viral diseases including chronic hepatitis B. Alinia(R) (nitazoxanide) is approved by the U.S. Food and Drug Administration and marketed by Romark for the treatment of Cryptosporidium and Giardia infection.Romark Laboratories http://www.romark.com/news/11032008.aspx
I found the article in Medical News today. To access the article directly, the address is: http://www.medicalnewstoday.com/articles/127968.php.
Tuesday, September 8, 2009
Wk 8 of Triple Therapy: Experiencing Severe Shortness of Breath
I am really worried. Went out this evening, just to walk the dog, with my husband. (It was a short walk.)
My husband got so out of breath I thought he was going to collapse again. He said his chest felt really tight, and he could hardly breath. He also said it happens often, but he doesn't want to tell the doctor. He's afraid he'll stop the treatment. I'm afraid he is going to have a heart attack.
I don't know what to do...
My husband got so out of breath I thought he was going to collapse again. He said his chest felt really tight, and he could hardly breath. He also said it happens often, but he doesn't want to tell the doctor. He's afraid he'll stop the treatment. I'm afraid he is going to have a heart attack.
I don't know what to do...
Monday, September 7, 2009
Things to Know When Applying for Disability
For those of you that are looking for information on applying for disability, social security’s website, www.socialsecurity.gov, has a lot of useful information.
There is a section that reviews the amount of work credits you need to have in order to be eligible for disability benefits. It’s called How You Earn Credits. It explains what work credits are, how you earn them, and toward the middle of the page there is a table that tells you how many credits are necessary to be eligible for disability benefits.
In addition to that, the guidelines that social security uses to determine if someone is disabled can also be found on the site: Blue Book – September 2008.
When it comes to qualifying under Hepatitis, they ask for some severe conditions such as hemorrhaging from the esophagus or stomach; fluid around the lungs, or encephalopathy. According to the lawyer we are using, rather than trying to qualify for disability under Hepatitis, it is easier to qualify under depression (which is typically a direct effect of having hepatitis). Those symptoms can be found under Mental Disorders.
On a personal note, what I have learned from our experience is not to be brave. When you see the doctor, and s/he asks you how you are doing, don’t say fine, ok, etc. Be honest! If you feel lousy, tell the doctor I feel lousy. Otherwise, what you thought was just polite conversation will be in your records when you go to apply for disability. Usually the doctor will transcribe something that sounds like this: John Doe presented to me today in good spirits or a pleasant manner. Protect yourself. Make sure your record reflects how you really feel.
There is a section that reviews the amount of work credits you need to have in order to be eligible for disability benefits. It’s called How You Earn Credits. It explains what work credits are, how you earn them, and toward the middle of the page there is a table that tells you how many credits are necessary to be eligible for disability benefits.
In addition to that, the guidelines that social security uses to determine if someone is disabled can also be found on the site: Blue Book – September 2008.
When it comes to qualifying under Hepatitis, they ask for some severe conditions such as hemorrhaging from the esophagus or stomach; fluid around the lungs, or encephalopathy. According to the lawyer we are using, rather than trying to qualify for disability under Hepatitis, it is easier to qualify under depression (which is typically a direct effect of having hepatitis). Those symptoms can be found under Mental Disorders.
On a personal note, what I have learned from our experience is not to be brave. When you see the doctor, and s/he asks you how you are doing, don’t say fine, ok, etc. Be honest! If you feel lousy, tell the doctor I feel lousy. Otherwise, what you thought was just polite conversation will be in your records when you go to apply for disability. Usually the doctor will transcribe something that sounds like this: John Doe presented to me today in good spirits or a pleasant manner. Protect yourself. Make sure your record reflects how you really feel.
Sunday, August 30, 2009
Today Is My Husband's Birthday
Today is my husband's birthday. He has been in bed most of the day. He got up a few times but went right back.
I was hoping we would be able to get together with some friends for a quick dinner to celebrate, but he isn't up to it.
As I am writing, I am wondering if the idea of going out with friends was more for my benefit than his. Since he started treatment, we haven't socialized at all. He is just not up to it physically or mentally. Just the idea of having to make small talk makes him anxious right now, and I totally understand that. However at times, I do feel very isolated.
I was hoping we would be able to get together with some friends for a quick dinner to celebrate, but he isn't up to it.
As I am writing, I am wondering if the idea of going out with friends was more for my benefit than his. Since he started treatment, we haven't socialized at all. He is just not up to it physically or mentally. Just the idea of having to make small talk makes him anxious right now, and I totally understand that. However at times, I do feel very isolated.
Wednesday, August 26, 2009
Never Underestimate the Ignorance of Others
At the office I work in, we sometimes assist people with disabilities. The other day one of the supervisors was telling us the benefits of talking to people on the phone rather than in person. She recalled when she, and some of her fellow co-workers, didn't want to help a customer because he had a "social disease". She continued to say she believed he had hepatitis. She then showed us how she shoved a pen and a piece of paper at him and made sure she didn't touch him. (Like it's contagious.)
I was so upset. I wanted to say something to her, but I didn't. Because I was afraid of losing my job since I just started. When I got home, I told my husband. He couldn't believe it either. These people are supposed to be professionals. Sometimes I am so disgusted with the ignorance that is out there. I can't even begin to tell you how I felt.
Getting the Runaround with Health Insurance
Well I started my new job last week. They gave us a brochure with all the info on health benefits. The only thing it lacked was the copay amount for level four drugs-- which includes all the drugs my husband is currently taking for the Hep C Triple Therapy. So I called the insurance company, their rep told me to ask my personnel representative. The personnel rep told me to call the insurance company.
In addition, all of the drugs (Alinia, Pegasys, and the RibaPak) require preauthorization. So I am going to have to try to get my husband's doctor involved to see if he can get Steve pre-authorized before I change insurance.
I can't ( I won't ) change insurance until I know that my husband will be able to continue treatment. It's just very frustrating going through the process. You ask all the right questions, but no one has any answers nor do they care.
In addition, all of the drugs (Alinia, Pegasys, and the RibaPak) require preauthorization. So I am going to have to try to get my husband's doctor involved to see if he can get Steve pre-authorized before I change insurance.
I can't ( I won't ) change insurance until I know that my husband will be able to continue treatment. It's just very frustrating going through the process. You ask all the right questions, but no one has any answers nor do they care.
Wednesday, August 19, 2009
Week four - Viral load went from 545,900 to 21,800
We got the results back from his second blood test today. Everything looks good. No anemia. His thyroid was ok. His HCV viral load went from 545,900 (last test was taken two years ago) to 21,800.
Since he was only on treatment for four weeks when the test was taken, we are very hopeful and happy with the results! But we are trying to keep our cool. Because the first time he was on combo therapy (without the Alinia), he cleared and then relapsed.
I have to say the side effects are much worse this time than the first time he was on treatment. They are getting worse everyday. He gets very bad stomach aches everytime he eats now. He is still getting dizzy and is very short of breath. Yet he is determined to hang in there. He knows that no matter what he is going through today, it is the end result that matters the most!!
Best to you and yours,
Lisa
Since he was only on treatment for four weeks when the test was taken, we are very hopeful and happy with the results! But we are trying to keep our cool. Because the first time he was on combo therapy (without the Alinia), he cleared and then relapsed.
I have to say the side effects are much worse this time than the first time he was on treatment. They are getting worse everyday. He gets very bad stomach aches everytime he eats now. He is still getting dizzy and is very short of breath. Yet he is determined to hang in there. He knows that no matter what he is going through today, it is the end result that matters the most!!
Best to you and yours,
Lisa
Wednesday, August 12, 2009
Hepatitis C Triple Therapy Week 5
Sometimes it is really hard watching him go through this. He's still dizzy and short of breath a lot. On top of that, and the nausea, he is now experiencing numbness in his leg.
The hep c treatment is taking its toll on him emotionally as well. He is starting to get irritable and really frustrated. I just hope he can push himself through this. I know it is really hard for him, but I keep thinking of the possible prize at the end.
Today is the first day of week 5. He had his second blood test yesterday. The doctor ordered a CBC, CMP, Thyroid test, and HCV quantitative to get a base viral load. (I would imagine most doctor's would order the baseline prior to starting treatment. But my husband's doctor didn't expect him to get the medicine as quickly as he did, and Steve wound up starting the treatment before the doctor ordered the HCV quantitative.)
The hep c treatment is taking its toll on him emotionally as well. He is starting to get irritable and really frustrated. I just hope he can push himself through this. I know it is really hard for him, but I keep thinking of the possible prize at the end.
Today is the first day of week 5. He had his second blood test yesterday. The doctor ordered a CBC, CMP, Thyroid test, and HCV quantitative to get a base viral load. (I would imagine most doctor's would order the baseline prior to starting treatment. But my husband's doctor didn't expect him to get the medicine as quickly as he did, and Steve wound up starting the treatment before the doctor ordered the HCV quantitative.)
Sunday, August 9, 2009
Giving Back to Our Four Legged Family
This is one of our dogs: Simba. She is in bed with my husband right now. Since he started treatment, she is by his side constantly. So this small gesture is my way of giving back.
I was just reading an article about The Animal Rescue Site. They have a program called Click to Give Free Food & Care. All you have to do is go on their website daily and click. That's it.
I was just reading an article about The Animal Rescue Site. They have a program called Click to Give Free Food & Care. All you have to do is go on their website daily and click. That's it.
When you click, The Animal Rescue Site displays ads from their sponsors. 100% of the money from those advertisers goes to their charity partners, and they fund programs to provide food and care for rescued animals.
Unfortunately, not enough people are clicking on a daily basis. They need more people to click. I am going to, and I hope you will too.
Saturday, August 8, 2009
Week Four
The past week has been really hard on my husband, but he’s getting through it. After he collapsed and hit his head on the table (A Call for Help post), he was really dizzy for days. His doctor came to the conclusion that he probably had a concussion; although the emergency room doctor never said anything to us about it. In addition to that, because the side of his head hit the table, he can hardly open his mouth. It’s even an ordeal for him to chew.
But aside from that, he is definitely feeling better today. Believe it or not, we even laughed about the whole sequence of events since he started treatment. Week one was rough but tolerable. Week two, his mom winds up in the hospital. Week three he collapses. So far, week four is extremely uneventful, and we plan on keeping it that way!
Best to you and yours!
Lisa :-)
But aside from that, he is definitely feeling better today. Believe it or not, we even laughed about the whole sequence of events since he started treatment. Week one was rough but tolerable. Week two, his mom winds up in the hospital. Week three he collapses. So far, week four is extremely uneventful, and we plan on keeping it that way!
Best to you and yours!
Lisa :-)
Thursday, August 6, 2009
Will Changing Insurance Affect His Treatment
I just got a job. I start on the 17th. I am happy because I will have insurance through my employer, but I am very concerned about how this is going to affect Steve’s treatment.
We will have to get the therapy approved by the new insurance company, and I need to have that done before I cancel his current insurance. I won’t change it unless I know he will be able to continue the treatment.
Right now his insurance is very expensive. It costs $1,198 a month. CRAZY…but worth it even though I am taking everything out of my retirement account to pay for it. (At least I had a retirement account, I realize a lot of people aren’t as fortunate.)
We will have to get the therapy approved by the new insurance company, and I need to have that done before I cancel his current insurance. I won’t change it unless I know he will be able to continue the treatment.
Right now his insurance is very expensive. It costs $1,198 a month. CRAZY…but worth it even though I am taking everything out of my retirement account to pay for it. (At least I had a retirement account, I realize a lot of people aren’t as fortunate.)
Wednesday, August 5, 2009
First Doctor's Visit Since Starting Hepatitis C Triple Therapy
My husband saw the gastroenterologist. It was his first visit since he started the triple therapy for hepatitis c. The doctor went over his first blood test results with us. At this point, everything looks good. Steve is not anemic. His hemoglobin, hematocrit, and RBC count are lower than normal but nothing to be alarmed about.
Because he has been experiencing extreme nausea and fatigue, the ribavirin was decreased from 1400mg a day to 1200mg. In addition, instead of taking 6 tablets totalling 1200mg of ribavirin, the doctor wrote him a prescription for 600mg tablets. So he only has to take one pill twice a day.
The doctor also recommended, that before my husband gives himself his weekly injection, he should take ibuprofen. This should lessen the flu-like symptoms he gets after the shot, i.e. body aches, chills.
As far as my husband's blood pressure is concerned, since it is only high occasionally and started before he began treatment, the doctor does not believe it is a side effect of the therapy. Therefore, he does not want him to start taking blood pressure medication. It can have negative effects on the liver, and the less medication he takes during the triple therapy the better.
Because he has been experiencing extreme nausea and fatigue, the ribavirin was decreased from 1400mg a day to 1200mg. In addition, instead of taking 6 tablets totalling 1200mg of ribavirin, the doctor wrote him a prescription for 600mg tablets. So he only has to take one pill twice a day.
The doctor also recommended, that before my husband gives himself his weekly injection, he should take ibuprofen. This should lessen the flu-like symptoms he gets after the shot, i.e. body aches, chills.
As far as my husband's blood pressure is concerned, since it is only high occasionally and started before he began treatment, the doctor does not believe it is a side effect of the therapy. Therefore, he does not want him to start taking blood pressure medication. It can have negative effects on the liver, and the less medication he takes during the triple therapy the better.
Sunday, August 2, 2009
Week 3 of Hepatitis C Triple Therapy
Week 3 of the triple therapy has been really hard to him: physically and emotionally. He's been extremely nauseous, weak and dizzy. He's been getting the chills a lot as well.
I don't know if the dizziness is a result of the stress from his mother being in the hospital or if it's a side effect of the treatment. However since he fell (A Call for Help), he has hardly left the house. When we did, I drove- he realized that he couldn't.
Tomorrow we are going to see his gastroenterologist. He should have the blood test results, and hopefully we'll get some answers.
I don't know if the dizziness is a result of the stress from his mother being in the hospital or if it's a side effect of the treatment. However since he fell (A Call for Help), he has hardly left the house. When we did, I drove- he realized that he couldn't.
Tomorrow we are going to see his gastroenterologist. He should have the blood test results, and hopefully we'll get some answers.
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