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:
http://frankbroughton.us/blog/archives/467

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.

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New Update

Sorry I have not posted any new news in a while. I have been feeling real lousy. My numbers are not good and I had one of the medicines cut back.

I will try to give more details soon. Thanks for your prayers.

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!

THANK YOU!

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.

Great News Update on my HCV Treatment

My blood work results are in and I just learned today after speaking with the nurse in charge of my treatment that I have cleared the virus (the RNA level went from 3,080,000 to undetectable!). There was only a 50 percent chance of this happening. Thank you – all who have prayed for me. This is very good news for my family! The nurse said that because of clearing the virus at such an early stage that I now have a 96% chance of permanently keeping the virus dormant if I finish the 48 weeks of treatment. Week six starts tomorrow. It will be a long row to hoe, but now I know it is working! I will just continue taking it moment by moment. Last night I went to church for the first time in a month. It felt good to be back in the house of the Lord. I still am pretty sick from the treatment but this news sure helps. I was able to do some work around the house the last couple days and that felt real good. Please continue to pray that I can handle this treatment and the side effects go away. Also please pray that I loose some weight. I have gained back all the weight I worked so hard to loose (60 plus pounds arg!).

Thank you again for your prayers and thank you Lord Jesus for answering this one great prayer request.