hgB from 5.0 to 4.2 !!!!

[mauka]

I took so far 4 shots of Procrit and stopped hcv   meds 6 weeks ago.
I take iron supplements 3x day......

How long before the procrit will kick in???

[jmjm530]

Procrit takes 2-4 weeks to start working. If I remember correctly, your doctor pleaded with you to have a blood transfusion at hgb 4.8. I think at this point you're playing with fire if you don't listen to your doctors. People have blood transfusions every day, I really don't see the problem here.

-- Jim

[mauka]

I read on the net all kind of complications can arise
from blood transfusions, that's what I'm worried about.

[NYgirl]

Mauka

You seriously have to do what your doctor says at this point. There is no reason on God's earth that you aren't unless you WANT TO TAKE THE CHANCE ON DYING.

If you won't take your doctors advice...perhaps you had better make sure that your life insurance is paid up to date because honestly you are most likely going to end up in the hospital in critical care.

I don't know what else anyone in here can say to help you.  I wish you would make a smart decision - at this point there really isn't anything else I can think to say because you are in BIG TROUBLE and just don't want to see it or admit it.

PLEASE TAKE YOUR DOCTORS ADVICE BEFORE YOU HAVE A HEART ATTACK OR DROP DEAD.

What are you afraid you are going to get HepC???  ;-) Blood is carefully screened these days, I had four transfusions last year and they saved my life.  I thank GOD for the people that donated their blood so that I could live.

[GoofyDad]

Procrit took two weeks for me at first, then another 6 weeks when I upped the dose later. My doc said he would have  considered transfusing me at 7.0 - but by the time he found out about it - I was out of the woods.

I read on the net that 5 was the point at which heart attack became an issue so I wasn't too worried - but Doc said no, it was a real concern for him in the 7's. Do you have any family history of heart probs? Please take care.

[mauka]

how long does it take to get a blood transfusion?
Do you have to stay in the hospital?

[jmjm530]

Here's a little primer on blood transfusions and I'm sure your doctor can fill in the details. Apparently, many are done on out-patient status without overnight stay in the hospital. The advantage of a transfusion, as I understand it, is that it can bring your hgb up within 24 hours.
http://tinyurl.com/95c6b

[cajunlady]

I have been reading your post.  I am a newbie, but what I have learned from all the info in the site.  YOU ARE IN DANGER!!!!!!!
PLEASE PLEASE listen to the very knowledgable poeple on this site. They truely do know what they are talking about.  

I agree with nygirl; it is either do or die.  Life is presious my friend; seek more of it.

I hope you make the right decision.

And, for all my friends with knowledge out there, keep encouraging this person to make that right choice.

I am going to share with you a quote I posted yesterday.

Quote:
The obstacles that others put in your path can be pushed aside in any number of ways.  The obstacles that you put in your own way can be removed only by the same hands.

Lots of Love to All,
cajun

[NYgirl]

I was in the hospital in ICU for over a week....so I was already in there.  

The transfusions did not take long at all maybe an hour. I do not think they would even admit you over night for such a thing.

At your level you are SERIOUSLY looking at a heart attack or something.  I'd definitely not even think about getting the transfusion.  It was not painful or anything.

It will save your life perhaps.  That makes it worth it to me.

You need more than Procrit right now...before it's too late!

[cuteus]

My hgb started climbing as soon as the tx ended and it was normal 3 months post tx. Of course, I was never allowed to go under 10 to begin with, so the body did not have far to go.  Something else might be at play here. Perhaps you have some internal bleeding that it is keeping it low and preventing Procrit from improving your counts.  You need to treat the severe anemia NOW and then find out if there is anything that is keeping your body from recovering.  Nothing that is said here should be superceding your drs suggestions, we are not liable, they are. At this point you are beyond the wait and see period.

[GoofyDad]

The B vitamins help procrit do its thing. I take B12 in a multi-vitamin and folic acid seprately. Doc wants me to get 1000 mg of FA daily, minimum. Some people take shots of B12.

[NYgirl]

Weren't you down to 7?  Can you IMAGINE being down to 4 - and now he's almost at THREE?

I think you could swim in vats of liquid B vitamins and Procrit and Epogen and still think you were in H3ll.  Honestly I do not understand how this person is able to be up and about and doing chores and shopping and things.

All the Bs in the world wouldn't have helped me at all....

Being at almost THREE has got to be almost DEADLY.  I can't imagine how much lower it can go?

Mauka what is your blood pressure?  That might be an interesting question as well.

[friole]

AS others have stated, you are having severe problems.  THe blood is not carrying enough oxygen to the brain, or anywhaere else, for that matter.  The Procrit does take some time to kick in.  The you been getting any heart palpatations?  You might check in with Silvia (Nursey) at the Delphi forum (others can direct you there but I think it is thru the Janis 7 site).  She is an expert on anemia, I understand

[Mister beagle bailey]

You really need that blood transfusion, I dropped to 9.6 my first 2 weeks on tx and started procrit right away.  I know it takes a few weeks to work, I just hope it does not drop further.  But if my HGB was as low as yours I would get the transfusion. Please you really need to listen to the Dr on this.

  The Beagle

[NYgirl]

I dropped to 9...I beat you na na na na nana!  ;-)

Just saying hi twin!  :)  Have a spectacular day.

[Mister beagle bailey]

Was that your low?  I just hope I don't keep dropping.  That is the only thing I'm worried about.  If It wasn't for my anemia I would be fine with every thing else.  Are you having a better day?

  The Beagle

[NYgirl]

I'm having an ok day today! Thanks for asking...as long as I'm at work I"m not happy but...better than the alternative for sure!

I stopped at 9.  At 9 I was passing out, literally, when I tried to stand.  Once I got on the Epogen - one shot a week didn't raise my hgb it kept me at a flat 9.  It wasn't until I went on 40,000 x 2 that it started to rise.

Now i'm only on once a week.  Curious to see my results when they come back later today or tomorrow.

There is no reason in the world that I can fathom that Mauka is not doing anything possible to get rid of the condition.  At four there should be no human way possible that he can function normally.  And in doing so...it would seem his heart could give out at any time.  Something just makes absolutely no sense in this situation.

Your complication of the Thal is so worrisome but it sounds like your doctor is on top of it.  I'd be surprised if you were not raised to twice a week for a while.  I don't know what the complications of the Thal and the medications are...but I would think it would make great sense since you are only at nine.

Nine is not a good number at all - if it's not raising VERY soon you are going to need to be raised.

[Mister beagle bailey]

There is no complication with the Thal and meds, only the anemia.  The nurse called last night to see how I was doing and said if I feel my blood dropping to get in to see the Dr.  I think they will up it to 60,000. units on my next shot.

So far I'm feeling OK, maybe because I had this all my life it doesn't affect me like every one else.  I'm sure I'll find out soon.

Glad your having a better day.  What was your HGB before you started tx?

  The Beagle

[NYgirl]

My hgb was almost 15 pre-tx.  It dropped to nine in a little over a week - I found it to be quite debilitating.

Oddly though after I went to the doctors, before the Epogen started to be able to work inside, I "thought" I was feeling strong enough to come in to work.  I really "thought" that it must have been raising up again - to at least like 12!

It was only when I went back for my next few CBCs I found out it was still at 9.  Psychologically though I had conned myself into thinking I was getting better!

What was your pre-tx hgb? I totally forget right now.  After only two weeks that's really low - I think most people don't drop until after 3 or 4 weeks on the Riba.  Be careful that you don't get any weaker. With all the complications you've got with this problem - it might drop FAST.

I don't want to find you at 7 and being transfused - that is why I am so GRATEFUL that you got right to it and got on the meds.  

My boss had come in one day and said I know you are doing this chemo treatment but you have to try to not look so TIRED all the time.  What a bozo.  My hgb was 9.  I'd like to see HIM function like that....foool.  Don't appreciate that I'm at work every single day TRYING SO HARD - just complain that I'm not "chipper" enough for you.  I wish I had that on tape!

We'd have enough money to invent our own treatment let me tell you!  ;-)

[cquest]

Unless you have a serious death wish, you need to follow doctors orders.  

Blood transfusions are NO BIG DEAL! They put you in a room, hook you up, yada yada yada, you're outa there in no time! Same as giving blood but in reverse...people get them all the time that have certain anemias not even related to HCV and they live to tell about it...

You might be laying on the floor in a coma right now for all we know! Get it together friend and do what you gotta do...
Cin

[sunspot]

My Hemotologist was ready to transfuse me at 9.3. The procrit was only holding my HGB not raising it afer 6 weeks on 40,000 2X a week. The only reason she did not was because I was completing tx in 3 weeks.
I was, like you, nervous about it but ready to go. Anything to feel better and not do damage to my heart and brain.
Go for it.

Dana

[sidey]

Hi ,that quote fit me perfectly !! I am my own worst enemy......Thanx........This place is amazing, once you weed out the nonsense.......Lots of love and life......Sidey............

[Mister beagle bailey]

Hi,

I can't believe your boss said that, what is wrong with him?  I can't understand people like that.  Your boss sounds like he has never been sick. I wonder what he would say if someone said that to him.  ;) Have a good night.

  The Beagle