Received First Lab Test

[Deb9991]

HCV RNA - Not detected - <43

HGB went from 13.7, which is normal, to 10.3, which is low.

I also had a high chlorine level at 112 H - what does that mean?

Low Bicarbonate at 21 - average is 22-31 (what is that -- something added to coca cola?  And if so what is it doing in my blood?).

This is far from over for me.  There is another long 19 weeks to go and, also, G-3s can go UND and then the virus can later spike.  But, I'm grateful, and happy. I'm starting to find it a bit difficult to breath.  I rode my bike up to the hospital, and when I got home I was almost gasping.  I'm sure my doctor will call me today, because the HGB is getting low.  Of course, my doctor will call me with the results, but I've already got them.  I'll just play along and act really thrilled like it is the first I'm hearing it, so the doctor feels good about it -- doctors like giving good news. He doens't need to know that I already know -- and I want him to feel happy too.  

Thanks -- you have all been so wonderful and given me so much encouragement (Bill, Dave, and iwillbeatthis), and many others.  It's not over, you've got more encourage to give to me too.  Thank goodness for this forum.  I've learned so much -- it is a wonderful educational tool, plus a humantarian one as well.

Best to ya all,
Debbie

[nygirl7]

Deb

You will likely know if it drops into the 9s as portann said, pounding pounding pounding - ringing in your ears so loud you can barely hear anyone.........get those CBCs but pay attention to your body and be VERY careful on stairs and driving and in the shower and stuff. Even just turning my head too quickly while driving (like to backup) made me see stars...nobody ever told me fainting actually hurts inside your head when it happens....I was pretty shocked.

Deb

[Diane12855]

Wow!!!! UND already!!!! I'm so glad for you. Keep on keeping on.

My hgb dropped from 14 to 10.3 in the first few weeks too. Then it started slowly going back up all by itself. Now it is 11.

I remember during the first 2 months of tx I kept hearing my heart beat in my right ear. Between that and the loud ringing inside of my head, I could hardly hear anybody when they talked to me. Thank goodness that has stopped!

Diane

[DoxieMom04]

So I am wrong!!!!!
My neighbor is not cutting wood in the middle of the night?  I could swear I have heard a skill saw cutting wood at 1:00 in the morning. Even asked my next door neighbor if she heard it. Oh boy!!!
DoxieMom04. aka Cindy

[Deb9991]

Heehee!  You know, my mind is way out in left field too and weird things are popping into my brain -- crazy stuff.  When I saw the test result for bicarbonate, I just automatically thought of coca cola.  I'm making these strange connections in my mind.  There's a place in Utah called Anelope Gap.  Well, don't think I'm crazy, when I saw, Anion Gap on my test, I started thinking of anelope springing around and this place called Anelope Gab where there are herds of them.  

Some of us are sicker than other, and I'm one of the real sick ones -- and I can't shut up and stop myself.  

debbie

[Deb9991]

Susan, thank you so much!

This was real encouraging news to hear that maybe I'll just hang around 10 or so and not have to go on procrit.  I hope.  If it hits in the nines, I'll listen for any strange noices from the furnice, or in the closet, or under the bed.  

I hope I don't pass out.  I live alone, with my cats, and if I do pass out, I hope it isn't in the shower, or cooking in front of the stove.  I guess if I start feeling a horrible type of fatigue, I'll just stay in bed, and be real careful where I go.  There really isn't any way to plan for something like that.  Oh, well, I deal with it when it comes, if it comes, to the best of my ability.

Dave is actually Comrade Boris.  He and I are two revolutionaries -- we have many causes, but we really don't know what they are other than to get through treatment.  Bill is dynamite -- I've learned so much from him.  These two guys are really sharp intellectually.  I've learned so much from both of them.  They are priceless gems, and, Susan, so are you.

Thanks for your help and pointing out NY's advice about getting those CBC's weekly.  I'll do it.  I'm proactive in this treatment -- I'm learning as much as I can, thanks to all of you, and just putting one foot in front of the other.

Hugs to you too,

Debbie

[portann]

Fantastic news and big, warm, congratulations and hugs.

Like others have stressed so much,  it's important to get the Procrit lined up in advance, if it turns out you need it.

I want to mention that just because the bottom dropped out your hgb at the front end doesn't mean it won't stabilize more or less where it is. Mine did what yours did - fell like a rock in the first weeks - BUT then stayed in the tens for most of my forty-eight weeks of tx.

I was lucky (and didn't realize it at the time) that my hepa didn't like dose reduction, so he gave me four vials of Procrit to keep in my fridge before I even started tx and told me the NP would phone to tell me when to start taking it.

And I never took it because I didn't drop below ten until the very end, when it was too late to make a difference.

Even NY scratched her head over this, as did my NP. I went low into the 9's all of a sudden in about my 45th or 46th week. Well, what do you do then, since it takes about two weeks for the Procrit to kick in? It was an unusual situation but in the end, the doc decided that it wouldn't make a difference to take it, so I didn't it.

The big whack up front with the sudden drop of over two numbers was when I was so zonked and out of breath. When I dropped into the nines at the end, I didn't feel that much worse, although I did faint a few times.  I was kind of used to being zonked somehow and the drop wasn't as big.

The tough thing for me in the nines was my heart pounded so loud - I thought it was the furnace thumping one night. I can't imagine how it would have sounded in the eights - maybe it would have just stopped. :)

So great stuff, those results ....and, btw, ain't Bill and Dave (Boris?) total sweethearts? Gems, the two of them.... truly.

Hugs,

Susan

P.S. Excellent point by NY to get those CBC's weekly and exactly what I had to do. I hated those draws at the end.

[billm57]

yes - i had thought thats what you were referring to - then i thought why is she concerned with how coca cola got in her blood and not clorox - lolol - sometimes my mind is all over in left field ---- also while procrit is a valuable rescue med - there is some debate on how soon to start - one high or low test result does not a condition make - a series of highs or lows is cause for concern and intervention

[Deb9991]

Oh, I know.  Being UND and SVR are not the same.  I won't know that for another 11 months.  I realize that importance of caution with this treatment.  You can get good news, and then you can get bad news.  It won't be over until after treatment for six months, and then I could spike back up in treatment and have to go longer.  So, I'm just doing all I can to make my life as happy and healthy as possible today.  

I can believe they can make you feel like you are acting like a baby -- that is really unfair.  So, I take it that when you drop below a certain level, it is hard until the Procrit brings your HGB level up, which can takes a couple or more weeks?  So, it drops, and you droop and lose what little energy you have to keep going -- or, you keep going, but it gets harder?

Thanks nygirl -- hey, do you live in Manhatten?  I worked in Manhatten for about five years.  I loved it -- one of the most exciting places on earth.  The energy on the streets of that city simply sizzle -- it can be brutal too -- highly competitive.  Expensive -- very, expensive.

Thanks,
Debbie

[nygirl7]

I had absolutely no problem from taking the Procrit - without it I could not have continued on treatment.  The hard part is when you get under 9 it is almost impossible to walk without passing out (I fainted in the shower), literally I thought it was too hard to pick my head up off the pillow but had to come to work. As Dave said it gets very very tiring.

That is why you have to be really proactive regarding it.  Don't let them make you feel like you are acting like a baby either - that hs happened to folks in here. It's really important so you can continue and beat this thing!!!!!!!!!!!! It's great to be UND but you want to be SVR - two separate things completely.

[Deb9991]

Boris -- thank you so much.  Throughout what little treatment I've done, you have been one of those shinning stars guiding me and giving me encouragement -- plus, you have made me laugh, and I have needed that so much.  

I'll work on getting the procrit lined up -- I know I'm headed in that direction.  I know it isn't any fun -- but, we have to do what we have to do.

Here's a huge hug to you, Boris.

I'll talk to you soon,
Debooski

[spectda]

How much riba are you taking, I forgot. 3 weeks is a pretty good drop in hgb. I guess your absorbing the stuff, but being as light as you are it probably doesn't take much.

[spectda]

I couldn't be more thrilled deb. 3 weeks and und is just Freaking great. Hearing this made my day. As nygirl said get the procrit lined up. I am at 8.9 hgb, can't get procrit and its starting to take  a toll. No fun!  Anyway,here's a huge hug for you comrade debooski !  Your pal Dave, aka Boris.

[Deb9991]

Thanks for this information.  I will definitely be proactive and push for procrit rather than dose reduction.  I've actually really taken control of my treatment, and gotten really upset when things didn't go exactly as I thought they should -- because of the information I received from others.  But, every medical center may be different in treatment protocol and why they chose to give me my blood test early, I don't know.  

I've hard that low HGB is the hardest part of treatment when you drop much below 10 or 9.  From what little I know, it seems that in 3 weeks time, it was a rather steep drop.

Why is taking procrit one of the hardest parts of treatment?  Does it make you really sick?  What are the symptoms -- I've got to get myself psyched up for it.  

Thanks,
Debbie

[Deb9991]

Bill, I told you wrong.  It is choride.  I was just in too big of a rush this morning.

Bill I'm a genotype 3, so I was told 24 weeks.  I've got 19 weeks to go, unless something goes wrong, and I'm prepared for that -- anything can happen.  

Thanks for your response, and I won't worry about those or two tests.  

Debbie

[billm57]

i meant dont worry too much about these tests - they could indicate other conditions - limit salt intake - increase water consumption and reduce cigarette smoking if that applies

[nygirl7]

If your HGB continues to fall any further they should put you on Epogen (Procrit) rather than dose reduce you if possible.  Due to the fact you are UND and a geno3 you want to maintain the dose right where it is if at all possible.

Now is the time to speak to your doctor about it and get it lined up with your insurance company.  Procrit takes weeks to work but it does work......however it's EXTREMELY expensive and so they won't prescribe usually if you are over 10.  But at your rate you could be under 10 already.  

Make sure you are getting a CBC weekly right now if at all possible. Once you get under 9 you will definitely know it....it's one of the hardest parts of treatment and remember it wont rebound upwards right away so you have to be VERY proactive right now.

deb

[billm57]

as far as i know theres no test for chlorine - chloride or choline are tested - bicarbonate and chloride are in the electrolyte test panel - these tests usually refer to an acid- base imbalance in the body - i wouldnt worry about these results after becoming undetectable
best wishes for sustained response - how much longer will you be on tx