Sunday, June 05, 2005

Weekend with the baby

I got my son and daughter in law to drop the baby girl off to me at work yesterday just before closing so she got to see the big machines and play in the sand and muck with the water lilies in the tanks. She just turned 2 at the end of February and she is talking very clearly. She enjoyed her visit and said hi to the guys but as soon as she got close to the big machines she quickly decided she really didn't want to sit on them after all. We have her until tomorrow and then Dave is coming out to pick her up. She wants to go to the park but it's been raining most of the day. Dave is coming around noon as he has to head to work at 2. That gives me the rest of the day to rest up for next week. By Saturday after putting in a full week I'm tired. I pretty much need my weekends to rest up for the coming week.

I'm gearing up for my visit to Dr. Erb on Thursday and what the biopsy showed. I go back and forth between thinking there is not much in the way of progression and I can forget about treatment right now and just get more rest.....and then I am convinced that there is progression and I need to go on treatment and deal with that. So I've been thinking about the last time round and all the things I did wrong that exaserbated the situation.

I know for sure I didn't drink anywhere near the amount of water that I should have and I think that was a lot of the problems I had. I got dehydrated and feeling sick and when that happens I shut down more and more. The worse I feel the more I don't want to put anything at all in my mouth including water. I have a very hard time taking pills and was trying to eat a bit to at least take the pills with food and I'd choke down a bit of water with it. Part of the whole liquid problem for me was that fact that for the last 30 years I have pretty much drank only coffee and diet pepsi or coke. I rarely drank water or any kind of juice. When I started the drug trial I was told I could not have anything with caffeine so that included both of my liquids. So even though I was getting thirsty I wasn't looking for a drink because I knew I couldn't have coffee or pop. I would eventually take sips of water but that was about it.

My main concern is the ribavirin (in case I haven't made that clear already lol) and the hemolytic anemia that I got. If I can't take the ribavirin for the whole course of the treatment it drastically reduces the chances that I'll stay clear of disease when treatment stops. By reducing the amount to what I can tolerate will maybe not be enough to do any good. Maybe the water I didn't drink had an effect on how the ribaviran affected my blood and body. Maybe all the drugs built up to too high a level. I noticed last time that they did blood work to see what my counts were but they didn't monitor the level of drugs in my body. If I didn't drink enough liquid to wash the drugs out before adding more maybe the levels just got too high. I have wondered ever since the drug trial ended why my alt jumped from normal to over 300 within a couple of weeks of stopping treatment.

Oh I hear a little girl yelling grandma and had better run. I really appreciate hearing from some of the other Hep C bloggers and I really find it helpful to have others going through the same thing to relate to and blogs to read about how they are handling things.

2 comments:

MartinB said...

Hi Elizabeth,
If you end up on treatment again, I would ignore any advice about coffee and diet coke. Both are completely safe, and coffee is actually beneficial to the liver. There has been a very large and very reliable Japaneese study which showed that coffee drinkers have half the rate of liver cancer and lower ALT levels. It is not the caffeine that is beneficial, so you can go for decaf if you dont want the stimulant effect. Treatment is hard enough without making it worse by giving up things you dont have to!
Best wishes,
Martin

Ron Metcalfe said...

Hi Elizabeth
Martin has emailed me details of your blog – I will put on link on my blog to yours. I have also recently set up a Hepatitis C Discussion Forum (there’s a link to it on my blog) which people are using to discuss lots of HepC issues.

I have also heard that coffee is ok (there’s a discussion about it on the Forum) and have gone back to enjoying it myself recently.

Like you on your last experience of treatment, I have haemolytic anaemia because of the combo therapy drugs (I’m Gen 1A, Pegasys interferon & 1000 mg Ribavirin for 48 weeks). The Nurse at my hospital monitors my blood results each month during treatment (weekly at the beginning) to ensure my levels don’t drop too low. So far so good (am at Week 30 now)

Good to discover your blog – there is a bit of a community developing online, so have a look and join in!

I wish you well on your journey with Hepatitis C. And catch up with you again soon.
All the best
Ron