Week 47 TX Update – Almost Finished!

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.

HCV Treatment update – things to be thankful for

HCVposter.jpgI 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.

Week 24 HCV Treatment update

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.

Read moreWeek 24 HCV Treatment update

Treatment Week 15 Update

I am VERY thankful for the prayers and care of many of you. I just took injection 15 out 48 last night. So one third complete. My numbers are doing well. After week 12 I was still undetectable for the virus and my ALT (liver enzyme) was 31 still (it was up to 210 before treatment). This is the first time I have had normal liver readings in thirty years.

Yes, I am doing good numbers wise but this treatment continues to beat me up pretty good. I am always short of breath. If I bend down and up quick or slow I get pretty dizzy. The pills are really nasty (I have four of them staring at me right now that I have to take). They have many side effects. A nasty dry cough that just will not go away, plus I have a creepy dry skin rash kind of feeling on my whole body. My taste is totally messed and no food tastes good. I have lots of trouble eating. (Good thing – I think, is that I have lost 23 or so pounds so far). My smell is messed up and I have a constant dirt taste in my mouth and the same as far as smell. Of course the worst side effect of all is feeling very fatigued and flu like most every day. I am getting to work a day or two a week but it wipes me out after that. Pastor Kohl and FBBC has been most gracious about that. Praise the Lord for that. It helps remove much stress. I have been doing real good depression wise. Depression is a very popular side effect seeing how the side effects are so nasty and the treatment just seems to never end – 48 weeks!

Thank you so much for those who inquire about how I am doing. That means so much to me. Every little bit of care and every prayer is helping me continue on. Before I started treatment I interviewed eight people who took this treatment and only two of the eight were able to finish. It is so important that I complete the whole 48 weeks. Determination alone will not get it done – but the prayers and care of my friends will help me do it!


Good news update on TX

I went to my liver specialist this week because I have been feeling so tired and my hemoglobin is getting to the point of being too low. While there I learned my ALT (liver enzyme) number went from 210 down to 31. I am in the normal range for the first time in 30 + years. That means my liver is no longer being damaged as of now by the virus. I get tested at the end of next week to see if the virus is still undetectable at this point as I was after week four. I will get my thyroid checked out – well just about every test I have ever had is being redone next week. Should have a good picture of how I am doing in two weeks. But the numbers are looking very good.

I had a decent day yesterday – put in a full day of work for the first time in a while and no headache. I have some friends over from Rochester and today we are going to go on a slow paced hike. Still a long way to go for me, and the road is still pretty hard but I am learning how to deal with all these very nasty side effects.

Week 9 – Treatment Update

It has been a long 9 weeks on treatment so far. This past weekend had to be the worst yet for side-effects. By Saturday evening I was totally wiped out. Picture this: nasty chest cold, upset stomach, diarrhea,  and the flu and you can begin to understand how my weekend went. Last weekend was almost the same. The cough is not from having a cold- my lungs are clear – it is a nasty side effect of the Ribavirin. The upset stomach and the nasty d word went away by Sunday evening. I had my best sleep last night that I have had in two months. I feel kind of decent this morning. I am going to go and get out of the house. I bought some new hiking boots last week so I think I shall try to break them in on a short hike with Frank Jr. this afternoon.  I think I am up to it.

I am waiting for the doctors office to call me with analysis of my week 8 blood work. Red blood cells get killed off with this treatment and if they go too low others meds are prescribed. I do not want to go that route – hoping the red blood cell count is okay. Also white blood cells get killed off – a very important one is Neutrophils. This is the wbc that fights off infection. If this one gets too low a med is prescribed – also do not want to go there! I pray my Neutrophils are at an okay level.

On a good note – I have lost 12 pounds so far. Only 40 more to go!

Thank you again to all the support so many of you have been to me. This has been a very hard time. The mental battle is tough let alone the physical.