jmjm530

[alagirl]

Some badness to report here.  Last evening blood draw at the doc in the box was
rbc 2.82
hgb 9.2
hct 29.0

it was just a quick down and dirty cbc they ran on their own equipment because he apparently didn't want to let me walk out the door without doing it after seeing what I looked like when I walked in.  They held me in the back while doing it and I didn't even know why they were doing it.  I went home and took the last 12k of procrit I had but I feel like the situation hasn't gotten better overnight.  I DO have an appt with a hematologist in Huntsville tomorrow afternoon.  I wonder if I am ok waiting or if I should go into the ER and have them run another check tonight to see if I've fallen further and need packed rbc's.  I don't feel very well.

[jmjm530]

I couldn't find what I believe to be a recent thread of yours where you gave your stats and treatment history. So the following is very general stuff.

Usual starting dose of Procrit (epo) for ribavirin-induced anemia is 40,000 units/week. It can take from 2-6 weeks to fully kick in, therefore don't expect too much overnight.

Hgb 9.2 is  certainly low but different people react differently to hgb levels. Part of it has to do with rate of drop from treatment and not just the absolute number.

It's good that you're seeing a hematologist tomorrow afternoon. I would definitely ask him if you are being underdosed given the 40,000 units/wk normal protocol. I would also ask for an iron stores test -- Ferritin and TSAT -- although he probably will give you one anyway.

I cannot advise you the ER thing. If in doubt, call your doctor or just go.

We've had people here functioning "ok" with less than hgb 9.2, and others have had significant problems at a higher number. I ended up in the ER at week 2 of treatment with my hgb around 11.2, however it represented almost a three point drop in a couple of weeks. My major sympton prior to going to the ER was extreme fatigue and weakness (had to sit down after walking across the street) and that awful nausea. They told me at the ER that I was severly dehydrated and the IV fluids did help.

Hope you feel better soon,

-- Jim

[alagirl]

It's a 4 point drop for me in hgb since last week when my hgb was at 13.

[alagirl]

Definitely I am going to ask for higher amts of procrit.

[jmjm530]

Yikes. That is a big drop for a week. Given that drop, I hope they will monitor your hgb AT LEAST twice a week and daily would not be a bad idea. They often intervene with transfusion around hgb 8. Don't be surprised if they try and lower your ribavirin with this rate of drop,  and you may have no other choice unless the rate of drop changes or they intervene with transfusion. BTW is your treatment doctor a liver specialist (hepatologist) or a gastro? At this point, you might want to consult a liver specialist, if you're not treating with one.

All the best,

-- Jim

-- Jim

[alagirl]

I'm going gastro unless the one I have can't handle it considering that he'll have a good hematologist to help.  The hematologist I have has been recommended by literally everyone I've come into contact with, so I am excited about seeing him tomorrow.  

I have a complication now, it seems, with my intestine so it may not be so bad I am with the gastro, who is with the center for colon and digestive disease in Huntsville.  I am trying not to get strung out over too many docs.  Will get a second opinion if this guy doesn't work out.  I may have forgotten to mention that apparently something yucky showed up on the catscan of my liver and they want to do a colonoscopy now.  I told them they better do it with max anethesia because I woke up about twenty times during the twilight sleep they put me in during my last colonoscopy and tried to get off the table I was in so much pain.

[katerika]

My colonoscopy was painful as well, I recall trying to get off the table, the second time was better, they were prepared with more pain med. I even asked for the head of the dept. the 2nd time, It was like they coudn't drive the scope. banging into stuff. They said I have very (twisted turning) Tortuose colon. I wish you well, My heme did a quick drop in the beginning then leveled off to 10.5 - 11. Now (week 22) I dropped to 9 in one week. I feel aweful. I had my first procrit shot yesterday. I still feel like an old poop. The big thing right now is to rest and not to push yourself. Lay low and go with the flow.
Teri

[alagirl]

sorry about the procrit.  It makes you feel bad a little at first but after the first few times, its not bad.  I actually feel better the day after my procrit shots now (don't know why because it takes 8-10 days for blood cells to form - maybe its just my body ramping up to make blood that gives me more energy).