If he's feeling like he did the last two times he had to have a transfusion, yes, go to the ER. There's no shame in getting a simple blood test to make sure! There's really no way to know what his blood count is without a blood test. If he's feeling lousy and, since he's had two previous transfusions, I think going to the ER to get a blood test is the way to go.
He won't go. I made a deal with him earlier to take him tomorrow. That's the deal I'm being held to. The marinol helped him feel better, but he's getting that ribavirin frustration/anger stuff.
he should be ok until tomorrow. But he really needs to get his labs checked. I've been down that road. ER is no fun,but necessary. Maybe they need to up his procrit. I'd suggest that rather that stop any treatment.
Just wanted to ask, if he is on Antidepressants for the frustration/anger? This treatment can strongly mess with our serotonin levels and induce 'clinical depression' which can also show itself as anger, anxiety, irritability. An AD will level out the serotonin levels and make us 'normal'.
I'm wondering what week of treatment is your husband in, how much ribavirin is he taking and what are his procrit dosages?
His procrit was upped about a month ago. We'll probably be going to the ER tomorrow. Thanks!
Yes, he's on anti-depressants -- prozac. He thinks they work, and so do I. He gets like this on ribavirin. He cannot tolerate it, so they sneak it in, and try to keep him on it until he starts to crash. Both times he's had to get a transfusion. The idea is to sneak him on and off of it before he needs a transfusion. I think that might happen this time... which would be great! Thanks!
He's on week 40, of a two-year plan. His procrit is 40,000 units, and his ribavirin dosage is 200 mg. They want to keep his hemoglobin between 10 and 13 for him to be on it. He had a transfusion when it was down to 7, and he had a transfusion the first time when we had no idea what was going on -- with the ribavirin pack -- his hemoglobin was down to 3.
A two year plan as in the plan is that he take the meds for a total of 96 weeks?
The procrit .. is it once a week?
And the ribavirin .. at 200mg...how much total each day is the dosage?
I have reasons for asking these questions...just trying to get a complete picture of your husband's situation.
Has he had his iron checked? Because if he doesn't have enough iron stores, the Procrit won't work.
Yes, meds for two years as I understand it. He is on pegasys and was doing the ribavirin pack, but he became too sick and he has just been added onto the ribavirin -- it will be for 2 weeks on Wed, Jan 21st. He is on the full dosage of pegasys. The ribavirin is 200mg once in the morning, and that's it. Procrit, neupogen and pegasys are once a week. He has grade 4 cirrhosis and his viral count has been 10< since June.
Yes, he was tested for his iron on Dec 30th.
Wow. He is one tough cookie as are you. I think I begin to understand why the extended treatment. If he's been UND since June, I calculate he went UND somewhere around Week 14 or so? What genotype is he?
Wondering if you got the results of his iron stores test ... assuming they check out okay? The only other thing is wondering if they've considered upping his procrit. There are some here on 60,000 per week .. as in twice a week at 40,000 and another 20,000 dosage. A friend of mine did that to keep his hgb up.
That is some serious anemia he's experiencing on such a low dose of ribavirin. Did he have low hgb when he started treatment?
Sorry for all the questions...just trying to get a clear picture to give better responses. You might want to consider putting your husband's info in your profile as we usually check for the stats of the person when trying our best to answer questions.
You and he are almost at the halfway mark ... wishing you both well.
Hi. He's genotype 1. Before he began treatment he had to be bled once a week for 6 weeks to get his iron count down.
They may up his procrit again, this was done after the last time he had a transfusion. He had one that was touch and go -- he had a slight fever and low blood pressure. So, it was back and forth between his doctor and the ER doctor. Should they or shouldn't they? They finally decided to go through with it. We went in around 8:00 a.m. for it and got home around 11:00 p.m.
He said then he didn't want to have any more transfusions and that one didn't make him feel better like the one he had before did.
He is in remission for NHL (Non hodgkins lymphoma -- B Cell Follicular), and was treated for that. He was grade 4 in 2006, and then had to go through chemo again after he had it again 6 months later. This elevated liver count he had was written off as a chemo reaction. He was diagnosed in Jan 2008. He started treatment in April.
His doctor says he wants to keep his count down to zero, but keeping it there is no guarantee that it won't replicate, and they want to sneak in the ribavirin when his counts are between 10.5 and 13. He was 11 at his last appointment. I knew it was ribavirin time.
I'm not sure if he had low hgb when he started treatment. I can ask. When all of this first started, I didn't know what to ask.
My husband is on this forum sometimes, so I need to ask if I can put his stats on here, he might want to himself... or not. It's a fine line asking for help and not saying too much.
I used to say a lot more at the doctor's visits, and I think I say much less now because I posted about that and most people who were patients were horrified how much I talked to his doctor and had a different opinion about what was going on. I think there is a difference from inside the treatment and outside the treatment.
So, I don't know as much -- and neither does he. I wish one of us did! Thank you!
I meant to say, that yes, he is one tough cookie! I can't believe how brave he is. I see what he is enduring. I can't imagine going through what he is going through. He has been there for me when I broke my back and was unable to fend for myself. It's my turn.
These past couple of years 2005 my broken back -- 2006, 2007 -- NHL for him, and 2008 HCV -- well, we're a very solid couple. It sure makes you realize what in sickness and health means, and it also allowed us to see how much we are soul mates. And, I have wanted to run away before. I'm also on AD. This is very difficult, but as long as he's game -- so am I.
I also notice that he's less able to deal with things -- emotions, is more easily frustrated, is more easily angry, etc. when he's on ribavirin. Can't stand the dogs being around him. I have to leave the area he's in if I'm on the phone. He's easily irritated. Once he told me he couldn't stand the sound of my voice any longer and I had to stop talking -- but that was when his hgb was at 3. Many of his blood work results were in the critical realm.
I remember when they were low from chemo. That was nothing compared to this.
Anyway, I'll ask for more information when I go to the doctor's with him.
He went to the ER his hemoglobin was 13.2. He can't really describe how he's feeling to the ER doctor or to me. Thankfully he has an appointment on Thursday. He says he feels bad without the fevers/chills, and without the aches/pains -- it's a different feeling bad. He takes his shots on Tuesdays, and by Fridays he's usually feeling a little better. That didn't happen this past week. But, he just took his shots again, so we're in the remove irritants from him mode. Dogs are out of his room.
Visits with puppies, and hellos are monitored and then they leave. When he feels better they're his company.
Thanks everyone! We went to the ER on Sunday afternoon. It was Saturday when I was asking for opinions on it.