Yesterday I received the best news I could about my 48 weeks of HCV treatment. Six months after being off the medicines the virus is still undetectable. That means I have achieved a sustained virologic response SVR! That was the goal of the treatment. See this article for more info on this: What Is a Sustained Virologic Response or “SVR”? SVR is a good thing. Studies have shown that with a six-month SVR (which means no detectable virus in your blood for six months after finishing treatment), relapse occurred in only 1-2% of patients. So, for every 100 people who finished treatment and attained SVR, the virus will return in only 2 of them.
A big thank you to all my praying friends who through the past 18 months have prayed to the Lord on my behalf. Thank you to my family and especially my wife Carol for your untiring support during this long and trying treatment. Most of all thank you to God who showed me mercy! You see treatment for hepatitis C is notoriously difficult, and the side effects are so debilitating that many patients decide to stop therapy rather than endure the consequences. In addition, treatments are curative in less than half the people who receive them. I was able to finish with God’s help. Thank you Jesus!
What is next? I need to do as all of us need to – eat healthy foods, get some exercise and stay away from stress!
Hello my friends. I will get right to it. I have great news to report. I am still undetectable after 3 months! I went in 2 Mondays ago, but just received the results late this week. The lab lost some of my blood. Man, it was enough to have to wait the 4 days for the results but they added 6 more days to the wait. It was worth it though as the virus has not come back. In 3 more months I get tested a final time, if still undetectable I have reached SVR and have a 97% change of it never coming back. They say I am one of the lucky ones (only 35% or so are successful with the treatment) but I know better. I fully acknowledge it has been because of prayer, prayer that some of you have joined in with me on and for that I thank you.
Things have been good so far. My energy level is back to “normal” (50 year old normal). Not feeling like I have the flu for 3 to 5 days a week is AWESOME for sure. The meds I were on are nasty indeed. Recently I found out an old friend of mine who was on the treatment for 16 weeks tried to hang himself. The meds cause depression and really mess with your mind.
I took a trip to Indiana for a week long seminar a couple weeks ago and endured it well. Even drove home (7 hours trip) right after the Thursday evening session and felt great. I remember in my younger years doing that and being wiped out for a few days.
My next big step is a some blood work I will get done on the 26th of this month (3 month post treatment). I will get a full liver panel done along with a viral load count. Please pray with me that the virus is still undetectable! If it is, I will get a final test at the 6 month mark. If found undetectable at that point I will have reached SVR (sustained viral response) and will have a 97% chance of the virus never coming back!
Looking forward to working five full weeks of Summer Camp at Common Ground Baptist Camp this summer! I will need all my energy for that for sure (and then some).
On “Operation Ditch the Bag of Cement” I hurt my back a month ago and it has prevented me from continuing on the treadmill. I am sad about that but just started back again. Man this weight thing has been a battle for the past 12 plus years. I will keep trying!
It was a long 48 weeks for sure but the end has come. I took my last pills the day before Christmas Eve. It was a great Christmas present to be med free. I still felt like I had the flu for a week or so after that. I feel great now! My energy is back. The brain fog that I had has cleared up and my mind is racing two zillion miles an hour again. I like that, but I am sure some of my friends do not. I have a lost year to make up for – so look out 8-). Food tastes normal (like really good) again. My skin is still very dry and itchy but getting better, that is one of the nasty side effects of the medicine. I am sleeping mostly through the whole night now – YES! I am so thankful I was able to do this treatment, not everyone who has HCV can tolerate it. I have some friends and relatives who could not complete the treatment. It is a very expensive treatment, $20,0000 just for the medicine. I am thankful that is all paid for.
So what lies ahead? Six months from now I will get tested again for the viral load. If it is undetectable at that point will be in remission (technical term is SVR sustained viral response). So June 2010 will be a big day for me. Please join me in praying for SVR!
Hepatitis C is a serious disease, many have it and do not even know. Please consider getting tested! One of the best sites on the Internet for information and support is a site I found called HCV Support – the site is loaded with information and informative videos. The forum is full of very helpful and compassionate people. They helped me greatly.
Thank you for all that showed me great support this past year – I appreciate it much.
It has been one long year for me being on the HCV treatment like I am, BUT the good news is I have one week left. I just took my last injection last night and have six days of taking the pills left. I went to my liver doctor’s office last week and everything is looking good. My blood work numbers are all in the normal range now. My liver enzymes are at the best numbers they have been in thirty years. I have not said much on here the last three months for I have felt miserable. I was in “endure mode” just trying to get through the treatment. I went to work yesterday and had a good day – even stayed a couple hours later than normal to get caught up – it was a rare day. Before that I had not left my house for two weeks. I am very much looking forward to getting off these medicines. I am very thankful for there invention and being able to even take them ($20,000 plus for the year) but I have to admit I hate the side effects and hope never to have to go through something like this again. I have found out I am not the tough guy a I personified to be (haha). Feeling like one has the flu for 47 weeks straight has been tough for sure.
A big thank you goes out to all that have helped me this year to get through this. A special thank you to my dear wife Carol who has been the greatest to me during this time. I have been grumpy and irrational many times to her and she bit her lip and walked away. She helped me with the injections each week and put up with my crazy food requests. Thank you Carol! Also I would like to give a great big thank you to my Pastor, Pastor Art Kohl (he is also my employer at the church) he has been outstanding to me and gave me great latitude with work this year. His support has been unending and he has shown me great tolerance and understanding. Thank you Pastor Kohl.
I am looking forward to getting back on tract in 2010 – things like Summer Camp at Commonground Baptist Camp and my ministry in the prison and at Church. Both where put on hold in 2009. I have learned much this year and I hope I can use that knowledge to help others for the rest of my life.
I just wrote this post on an excellent support group forum I found and made friends at HCVSupport – I thought I would share it with my blog readers:
Sorry all for abandoning you. I have really struggled with this TX and did not want to say anything about it for I had nothing good to say. BUT I thought about it and I do have much to be thankful for. First, being able to even get the treatment. Second, it is working – undetectable at week 4, 8 and 24 so far. Thankful that I have a great wife and family (8 kids) that have really helped me along the way so far. Thankful for my friends that give me the “space” I need at this time. Thankful for my boss at work (he is my pastor too as I work for a church) in being 100% totally understanding about my struggles with this tx. He spoke with some people he knew who did bad on the tx and who it failed for, so he knows. I have been to work only one day or so a week since being on treatment. I get much of my duties done from home on the computer.
Thankful I was able to get to Niagara Falls last week for two days with the family – see my blog post on the adventure:
Tomorrow will be my 33rd injection, so only 15 weeks to go after that. After week 24 my hemoglobin was low (10.4) for too long so my doctor cut back the ribaviron. It went up (11.1) by the next month but not enough. He cut back the ribaviron once again. It went up to 11.6 but wants it up to at least 12.5. I get some blood work done tomorrow so we will see if the second cutback has worked.
My last day of the ribaviron will be on Christmas day. So looking forward to that. It has been a long road so far with some very bad days along the way and many sleepless nights. There are days when I feel lousy but I am able to pretend that I am not – the days when I cannot even pretend I feel good are killer.
Thank you to the numerous members here who sent me words of encouragement though PM’s! I just answered a bunch of them.
I will add here I too am thankful for all of you who have mentioned to me that you are praying for my treatment and health. I do appreciate it very much. A couple of my aunts have been a great encouragement to me to keep going. They both have had close family members on the same TX, so they know of the ordeal.
Christmas day! What a day that will be if the Lord wills! and then I would turn 50 on January 9! I think I just might shoot off some fireworks in celebration. A word of caution: I have not succeeded yet in this treatment there is a percentage chance the virus can come back – but God is good and He knows of my uprisings and downsitting, knows the amount hairs on my head (getting easier to count these days haha) so He is in charge of my life.
A couple weeks ago I crossed a milestone in this dreaded treatment – I reached the half way point. The countdown now begins YES. I waited a couple weeks to post this update so I have all the information for it. I had five tubes of blood drawn at the end of week 24. They tested everything again that has been tested to date. My blood cells, blood chemicals, liver panel, thyroid, and once again the Heptimax test which checks for the viral load.
Good news is that the viral load is still undetectable! In other words – I am viral free. If I am like this six months after the last shot I am considered cured. The technical phrase is SVR or sustained viral response. I am doing great in this aspect but we have not reached that point yet. Having cleared the virus at week four and keeping it cleared at week 24 gives me a ninety percent chance of reaching SVR.