HERE I GO AGAIN ---THIS MORNING HGB DOWN TO 7.5....NOW WHAT?

good morning all,

Well my friends, here I go again ...HGB down to 7.5.  Don't know if I should lower the riba or do another transfusion.  Any feed back would help as I trust all here more the the Hemo dr. I'm seeing, will see the hep dr. Friday but would like to hear what you guys think?  I have 9 shots left of 24.

Beagle

[FlGuy]

Tricky question since you are 16 weeks in.  By your posts it didn't seem that the transx was all that bad for you and you got quick results.  I didn't check the dates, but it seems like it bought you 4 or 5 weeks.  If that's the case maybe the idea would be do another tranx, get a few more weeks in and then see what happens.  At that time, maybe at week 20 or so, you could be a little less reluctant to reduce the riba. Good luck.  By the way, when not beset with hcv and tx where does you hgb usually register? I'm not very familiar with Thal.

[jmjm530]

Sorry your hgb dropped again. I liked what FLGuy said but why don't you put a call into your hep doctor before Friday? BTW are you feeling significantly worse on the lower hgb or does your body seem to be tolerating it? More or less curious because I really don't know much about Thal so am hesitant with any advice.

-- Jim

[NYgirl]

:(

:'( (don't know how to make the stupid crying face)

What does the DOCTOR say?  Maybe dropping one Riba (you were on 1000?) wouldn't be a bad idea now that you are over 12 weeks.  And epogen twice a week somehow (I still don't know why he wont let you do the shot yourself) to help keep it up. But it sounds like that Thal is kicking your a$$.

How long ago was the transfusion now? How many weeks did it hold you up?

As stupid as it sounds - knowing ME I would try and drop one Riba and get transfusions every few weeks.  That would be what I personally would be pushing for. I mean hey no shortage of blood for people who honestly NEED it right? WHY NOT give you some every few weeks?  If I could give you some of mine...I would in a heartbeat. I hope you know that.

Your friend who will NEVER let you give up or get down...Debby.  We will continue to fight this no matter what our adversities and we will fight TOGETHER IN SPIRIT!

Willing all my will to you and your family right now.

[Mister beagle bailey]

I think that's the way I will go, with the transfuion as it gave me 6 weeks as of today.  It should bring me to the end of tx, which is what I'm hoping for.  Came all this way and would not be willing to give up.  My HGB before tx was 11.0-11.5.  I just got back to NY yesterday after a week at home in Fl, I feel fine. While in Fl I power washed the house and driveway, worked in the yard, and did some work on my classic car.  Go figure, it doesn't make any sense with #'s like this.

Beagle

[FlGuy]

I guess with Thal your body adjusts to the lower hgb levels. Doing all those activities with a hgb, probably south of 9 or 10, would have brought mere mortals to their knees.  Take it easy when you can, you're down to the last third.  Where did you have the transx last time NY or FL?

[OnAPrettyPoison]

I am home this morning getting some work done up in my attic while it can still be done, otherwise I couldn't post cause I am at work!  I am so hating that your hemo is falling again!

I would push for another transfusion to try to get you thru your 24 weeks.  You don't ever what to have to do this treatment again and you have come so far and fought so hard!  I would reduce meds as the last resort at this point in your treatment.  I would consider it if I was only a week or  two from finishing.  Good luck to you my friend, I am thinking about you!

[Mister beagle bailey]

That's what doesn't make sense as I feel fine and look fine.  While in Fl. did yard work, power washed the house and worked on my classic car, don't understand it.
I did leave a message and the blood results with my hep dr, sure he will call me later.
I think I will opt for the transfusion as it bought me 6 more weeks on tx and may see me to the end of treatmant.
Deb I take 800 of the riba, not the 1000 you thought.

Beagle

[jmjm530]

Given you're feeling OK and that you had a low baseline hgb level, it's possible you don't need a transfusion yet. Hgb 7.5 for you is a 3.5-4 point drop from baseline. My baseline was 14.8 and I functioned OK at at hgb 11.2 near the end of treatment. That's also a 3.5 point drop.

Like I said before, I don't know anything about thal or even exact transfusion protocols but I have read that people do adapt to lower hgb and that how you feel is an important factor. It's too bad you're not getting clearer guidelines from your medical team. Maybe you can squeeze in a consult with someone else?

-- Jim

[Mister beagle bailey]

I had the transfusion in NY as that is where my drs. are and where I'm treating.  Couldn't find a dr. in Fl who would treat me because of the thalassemia.  So I stay with our daughter while in NY.
Pretty, will go with the transfusion again, I'm to close to the end.

It seems all agree they would do the trans again which was the way I was leaning, so be it I will do the trans again.

Thanks ,  Beagle

[beamishboy]

AWWW man, sorry to hear 'bout hgb drop again...Sounds like yu have hammered out a workable solution going forward-another transfusion& SVR!!!!!!!!!!  GOODLUCK

[NYgirl]

Well it looks like at least we are in agreement AGAIN ;-)  If the doctor is willing to let you do the tranfusions - and that can pull you through to the end it's a done deal.  While they are inconvenient and sort a gross it didn't bother me at all to have them. And in your case with the Thal it will be the answer.

I honestly believe that your body is just USED to being at a lower number. That number would literally have killed me. When I had my drop it wasn't the actualy "low number" that it went to but how fast it WENT south I believe that damaged me so much.

Your body must be used to living without all the oxygen in the rbc's - it's the only single thing I can think why you are able to function and look fine.

And that my friend is a GREAT thing in itself - you could be like ME and look like...uh...p00p!  ;-)

[Algernon]

So sorry about your drop.  That transfusion sounds good to me.  I feel for you.  The anemia (my hgb is dropping AGAIN too) is so hard.  Dude, we're in the single digit countdown phase (9 more weeks for both us!!).  

Anemia always makes me think of that scene in Rosemary's Baby (remember that horror movie) where she's eating raw liver to combat anemia induced by the devil's seed.  Not that I'm recommending raw liver as a solution (although maybe it would work...).  Maybe watching the movie would be a good distraction if you start feeling dizzy and need to sit down.

Luck and HGB points to you, Deb (algie)

[Mister beagle bailey]

Beamish -- thanks,will do the trans as I did come this far.

Jim -- My hep Dr. is great, it's the hemo dr. I'm not crazy about.  The hemo Dr. wanted to pull me off the meds 6 weeks ago, but my hep dr. stepped in an said no way. By him doing so it got me to week #16 so far.  In Fl. I saw 3 drs. and non would treat me because of the Thalassemia.  Even the paper work that came with the meds state people with thal should not treat, so I thank God he would treat me and I knew of his record with other hep C patients with Thal. treated by him.

All the thal patients treated by him with hepC over the years are still undetectable.  I was amazed at his record and that he would take a chance on me.  I did think about changing hemo dr., but at this stage in the game and having my Hep Dr. call all the shots anyway I decided to just stay with her.

Beagle

[Mister beagle bailey]

I think it's what Jim said why I'm able to handle the low #'s.  That my Hgb is only a 3.5-4 point drop from my baseline.

Algernon--Deb, what was you baseline HGB and your HGB now?  Rosemary's baby...I remember the movie well.

Beagle

[NYgirl]

Yup the drop from BASELINE is really the ticket - not the actual NUMBER.

My baseline hgb was 15.2 and as you know I dropped to 9 in just over a week so a 6 point drop in that short a time period was just leveling, there was nothing I could do to fight it.  Couldn't even catch it was a CBC at the time I was having them every OTHER week. I'm just glad I listened to myself and went in early with an appt cause the doctor TOTALLY dropped the ball on the anemia oddly.

Now at 10.5 I'm not that bad really - it happened this time so GRADUALLY that it is nowhere near the same thing.

[NYgirl]

I forgot you started so low, Jim is probably right and for someone like me it would feel like being at 11 or 12 which is a really AWESOME number I wish I could revisit lol.

Still it doesn't NEGATE the fact that all that oxygen IS MISSING from your blood cells - no matter how you FEEL and LOOK it is still dangerous and should NOT be ignored.

Transfusion away captain!

[cajunlady]

OHHHHHHHH Mr. BB :( ,  I am so sorry to hear your counts dropped again.  Looks like everyone here has given pretty good advice.  If it were me I would go for the transfusion again; buy some time on treatment.  You will make it to the finish with SRV.  My prayers will be with you on this.  You will prevail; I just know you will.

Cajun

[Mister beagle bailey]

thanks guys, I'll get through this again, just need to make it to 6/11 for shot and 6/18 withthe riba.

Beagle

[Mister beagle bailey]

thanks that's what I will do.  how are you doing today?

Beagle

[NYgirl]

Well of course my ankle is feeling fine today and I actually was able to wear my high heeled boots. Of course, that means really nothing because as soon as I get to my office I kick them OFF again LOL.

I'm a mess and I enjoy it. :)

Now...if we can just figure out an easier solution for your hgb problem - doesn't the doctor have ANY suggestions aside from t'fuzing?  At least it's getting warm here in NY for you now :)

[Mister beagle bailey]

Glad the weather is getting warmer in NY.  As far as my HGB goes don't know what else to do.  I'm already eating everything that is suppose to help raise my HGB but I guess the riba is just to pwerful.  It's doing a number on my RBC and I can't take iron so I really have no choice.

Beagle

[NYgirl]

Iron, the double edged sword what a pain in the neck this really is.

How soon can you get a transfusion?

[anise]

Dang! Sorry for the drop!  You were lucky to find a doctor that would treat you with Thal.  I had read that they won't treat those patients.  Just think of how many people you will have helped when you get through this.  All those Thal patients will have hope.

By the way, I had a 3 point drop the 1st month and I was tired as heck.  Now it will be three weeks between blood tests so I hope I haven't dropped anymore.  I have a healthy fear of anemia!

I hope you continue the treatment, you are too close and being UND!

[dyce]

I'm sorry brother to hear this has creeped up on ya again! I'm with you and the others , I'd go for the trans. so you can continue to tx. My hmg dropped from 15.5 to 12.7 after 5 weeks and man do I drag a-- at work but I'm luckey to get much support there. I see your ankel is back down now and for that we're thankful. Keep your head up guy you'll be ok and when this is over and your svr ,we'll all jump for joy and then move on.

Dyce

[Mister beagle bailey]

Will probably get the trans some time this week.  Will talk to the doc tonight.

Dyce and anise, sorry to hear about the drop in your HGB.  It could still stabilize and stop dropping.  I've seen that happen to many on here.  In my case I know it won't because of the thal.  Iceboy had dropped to 3.7 I think and had the transfusion then, but it was to low when they did do the trans that they pulled him off the meds.  However he only did half the treatment and he is undetctable, which is great.

There are a hand full of people who clear the virus on their own.  The medical field should study this fact and find out what in their blood make them able to fight off the virus without meds. Any one who has the anti-bodies of hep C in their blood and never developed full blown Hep C, cleared the virus on their own.  If they could could unlock the door to this it could lead to a vaccine for all.

Just like those who have Thalassemia like me can never get malaria, our blood fights it off.

Any way this is just a thought to prevent the suffering of all with or will have Hep C.

Beagle

[amirtracy]

i don't know anything, just wanted to wish  you luck with it.

[can-do-man]

says....i don't know anything, ........ Hey thats my title there gal. See you do know summin, you took my title. How you doing girl? Life treating you ok?

[Mister beagle bailey]

Ameritracy,thanks I'll get through it.

can-do--Where have you been all day,needed some of your humor.

beagle

[Algernon]

My hgb started at 14.5 and dropped to 9.8 in the first four-five weeks.  Procrit started kicking in after about 2-3 weeks and slowly/steadily climbed to 14.1 (hematocrit above normal at that point).  10 days after last procrit shot, hgb dropped to 13.  I'm still feeling pretty good but I feel the steady fall (more blood work next week).  

I had to go to bed when I dropped to around 11.  I know that, compared to you, my numbers must sound like a wild oxygen party.  But by the time I hit 10, I literally had to lie down and rest in order to catch my breath after tying a shoe.  

Go for the blood and feel good!

[strator]

Man fella I wish this wasn't such a rollercoaster for you. I wonder how the heck you all deal with the anemia. My last cbc was 10.9 so I'm literally ignorant about what options you have or how you even stand up. I have noticed being twice as tired the last couple of days but I don't know whether there was another hgl drop, or Sat nights shot just hit me harder. I see the doc next Monday and may try for a early cbc if still worn down. Did work (mural)all weekend and haven't been on here trying to get extra rest. Gonna do that now cause I'm on a roof tomorrow moving an electrical service. I just wish you well, and I'm realizin how fortunate I am.

tracy - read your post about your back. Like your sense of humour  about...other than that I'm a ballerina... Watch them piroruehttes(sp). Hope your dancin up a storm soon.

Cdm/Goomaster- Been missin your antics the last few days. Just sat through a 2hr meeting with the topic of humour 'to get through', all's I could think about were poop threads.

Be Well All,
Don

[Mister beagle bailey]

I think yor right and will go with the transfusion.

BTW-- How is your anlke?  Today mine is normal again, not swollen at all.

Beagle

[roaming]

What do you eat that is suppose to help raise hgbl? The only thing the dr suggested was B complex.

[roaming]

What are you eating to help the hgl. The dr. office only suggest taking B complex.

[Mister beagle bailey]

I take B -complex,vit.C and as far as food good I eat a lot of spinach, bananas, beets, etc, I also take weekly B-12 shots.

How are you doing?

beagle

[roaming]

I am doing well, thank you. Hubby however is not feeling well. His sides seem to get worse right before the shot which is on thurs. I hope all goes well for you!

[Mister beagle bailey]

Sorry to hear hubby not feeling well,this is just a thought, do you think when he gets closer to doing his next shot his nerves get to him and it makes his sxs worse.  

Beagle