Help HGB 4.8!

[mauka]

After changing quite a few doctors due to Katrina yesterday I went to see a new doctor and after seeing me so pale she made me do a new lab.

She requested to get the results right away and after seeing my HGB at 4.8 she said I need blood transfusion right away! I told her I don't want transfusions and I'm willing to take Procrit instead starting tuesday.

My last lab on October 10 had hgb at 10.5  I then stopped interferon and rebatol on December 29 since it didn't work at all...
I have these very important questions since I have to make a decision in a couple of days.

IS procrit gonna take a while to kick in? How long?

Is transfusion a big deal and side effects? She said I'd need 3-4 units...

Monday I have another test and I have to decide if Procrit or transfusion....I guess if the HB is lower I'll have to decide for the best.


I can't believe my hgb ain't raising yet!!

[1oftheclub222]

this post is from 2005, this person may not even be around anymore

[twodogsinRI]

did your doctor ever figure out why you got so anemic? Just curious about the reasons people get that low.

[dockclerk]

I had a problem with mine to it got down to 4.6 it scared me I couldn't get out of bed had a headache that was horrible.I still went to work everyday but just going to the bathroom was a big ordeal because it was 50 steps from mty desk.I did finally go to my Doctor she took one look at me and sent me to the hospital for blood test she said I was anemic but didn't expect it to be so low.It was 4.6 so she admitted me then and I got 4 transfusions and I would do it again it saved my life.I was told if I had stroked out or had a heart attack I would not have made it there was not enough blood in my body.So please DO IT!!

[Mister beagle bailey]

I'm here--- just posted  to cuteus, just above your question wondering where I was.  Every thing went well in NY, all tests have been done and I'm flying back to NY Wed. to met with all the Drs.  I will be starting meds the first week of Jan., I'm just worried about my blood it's a 10 and I don't have much to play with.  As I have Thalassemia(mediterranean anemia)they will be starting me on procrit with my meds, I just hope it works.  However, the Dr. said he has a few ways to keep my blood up, what they are I have no idea.  I am worried because I want to get rid of this once and for all and don't want any set backs.  Will keep all of yous informed as to what's going on.

Wishing you and yours a Happy Holidays!!

Bob

[Mister beagle bailey]

My consult on Dec. 17 went well.  I've had all the tests done already and I'm flying back to NY Wed.  I have appointments with Dr.Metha who will be treating me and blood Dr., and also a nurse will be with me for 4 weeks to show me how to inject the meds and make sure I'm OK.  I'm nerves about it mainly because I have Thalassemia which is Mediterranean amemia, and my blood is at 10 and I'm worried about how low it will drop befor problems set in.  They will start me on procrit when I start my meds I just hope it works.  I will start meds the first week of Jan., after one more blood test that has to be done with in a week of starting meds.

Well, I let you know how I do .
Wishing you and yours a Happy Holiday!

Bob

[mauka]

I'm stil here :)

I'm fixing to go to my in laws for xmas eve.....
Merry xmas ya all!

Thanks for your concerns!

[cuteus]

WHERE is mauka?  now I am worried!

[jmjm530]

Ask about B-12 shots. My hgb and ANC went up after I started taking shots. Probably a coincidence but might be worth trying.

-- Jim

[iceboy]

My wife is complaining about coughing up hairballs. (I just wish) Try using gloves. Cooking gloves are my favorite.

Doc just called. I keep falling (9.1 yesterday) He knew it wasn

[GoofyDad]

Well yeah - I started going blind in my teens, 'bout when my palms started getting hairy. Seems maybe Mom was right after all. Keeps getting worse too!

Actually, just a little fun there. No eye problems for me, though I did have blurry vision in the morning a few days ago.... didn't think about it 'till now. Only lasted a half hour or so - like what you might normally get for 2-3 minutes first thing in the AM? But it lasted longer.

[jmjm530]

My eyes have been feeling heavy/weary lately and sometimes they feel out of focus. I saw the eye doctor couple of days ago and she said everything was fine although on questioning it was obvious she didn't know squat about hep c/interferon and eye issues.  Started using liquid tears a couple of days ago and they feel a little better. Hopefully, they were just dry. I like the genteal brand (gentle solution) if you can get hold of them. Seeing an eye doctor every 4-6 months during tx isn't a bad idea either.  Hope you're having a good holiday season under the circumstances.

-- Jim

[jmjm530]

GOOF SAID PREV: "...I started going blind in my teens, 'bout when my palms started getting hairy..."

THEN ICEBOY SAID: " Goofy, I’m so glad I’m getting a response..."

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I guess even low hemoglobin can't keep good men down.

[iceboy]

I

[beamishboy]

good thread,i'm not gonna touch that hairy palms comment(both of them???-hmmmm) but i sure got hairy eyeballs& trouble composing sentences& paranoia(ohhh yeah!) ice always glad to read your post,haven't always got anything to add,like now!--Great Good Luck& Strength to All

[iceboy]

I was hoping Beagel would come back with info from his trip. (because of what my doc states, that procrit wont help as Im "probably" not in short of epotein)

It

[iceboy]

I

[GoofyDad]

Thanks for the words of encouragement.

Yeah - my symptoms are similar to yours, but it seems maybe not as bad. I know the walking through water feeling, but I don't seem to have it anymore.

Coughing can be a problem - and don't laugh - I almost did myself in pushing out a fart the other day! Thankfully, no one was around - and if there was I probably wouldn't have been giving that extra effort - but whoah baby.. my world started to spin. Then I started laughing, only worsening my situation. Here I was, ready to keel over, laughing hysterically, stuck in a decending elevator car with rapidly diminishing air quality, praying it would pass each floor as efficiently as I had passed my dirty little bomb. Oy vey - what a mess.

Unfortunately, my hbg continues to slide - about a half-a-gram per week. I had way-high iron stores a couple months ago. Maybe they'll recheck again.

[dutch_boy]

I also remember you and your threads well goofydad.  I'm sorry to hear you too are fighting this ongoing battle with the anemia.  As you described the symptoms of low blodd counts are lightheadedness, dread of sneezing or coughing as it makes the world spin, headaches, weak....like I'm waling through 5 feet of water to get to point a to b, lack of being ablt to put alot of energy in basic things like making the bed, heavy legs, constantly cold with numb hands and feet.....and very pale.  The list could go on and on but the bottom line is that I've dealt with it now for 7 months at 7.5 hemoglobin very very well.  I've amazed my doctors as well as myself.  I'm still very active and my mental approach is very postive which helps. (I do have my "down" moments but a nap helps here and there).  The odd thing to me is that 5 weeks ago when I dropped down to 6.5 and have stayed there I can't account for WHY this happened.  I was told my body has just had enough and that it is not able to produce the same red blood cells as it used to on the same Procrit dose of 60,000 units any longer.  I didnt' think the Procrit was helping much but it obviously has as it has kept me level at 7.5 for most of the tx up until now.  The oddest thing to me is that I don't feel a huge difference between 7.5 and my present 6.5!  Is that strange?  Because I am still functioning the doctors are keeping the course with my tx unitl I end in two weeks!  Of course they have not ruled out transfusions yet but I think I'll manage to pull this tx off without one....but time will tell that story. As you well know goofydad with this tx you just go with the flow and you never know where it is going to bring you.  Every day at a time is the only way to  approach this tx and all in all it has been very very doable for me....even with this ongoing anemia issue.
Best to you and hang in there.  We are all in this boat together.
Scott

[GoofyDad]

Makau - I hope that you've found some answers and that you are  well. Let us know how you are when you can.

Everyone else - Anyone have an idea of where anemia becomes a long-term concern? Far from Makau's critical situation, I'm at 7.5 and limping along OK. Having come into this a few watts short of a 100w bulb, I'm hoping to salvage some lost cognition when I come out the other side. Anyone know where the worry point would be?

[jmjm530]

When I was in the hospital for anemia my symptons were due more to how fast it dropped than the actual number. I think I was in the low 11's then. I remember one of the doctors or nurses saying they see people in the 4's. A re-test, however, always makes sense when   you get results like that.

[jmjm530]

Goof said prev: "Having come into this a few watts short of a 100w bulb, I'm hoping to salvage some lost cognition when I come out the other side...

Anyone know where the worry point would be?"
-----------------------------------

I'd say when your wife starts using you as a night light...

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Seriously, there have been discussions before about the effects of long-term anemia on post-tx but mostly speculation. My speculation has been it just can't be good having your brain and other organ tissues oxygen deprieved for long periods of time. A google search did not come up with any satisfying answers as I guess the drug companies aren't motivated to spend money on verifying the damage their drugs can do.

Since most of us are in a state of long-term anemia (Procrit or not) for most of treatment, this is one more reason to carefully weigh the risks and rewards of "treat or not to treat" as well as the risks and rewards of how long to treat.

Have you had your iron stores tested recently -- specifically ferritin and trans-ferritin uptake?

I snipped this post from Nursey over at Janis. You can double-check her numbers but conceptually she explains the whole irons stores concept very well. I know that for example in the Sweedish High-dose riba studies, most ended up on iron supplementation.

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...I'm an anemia speaker so I should be able to answer this, right?....LOL....

Iron is needed in the production of red cells, so during therapy with Procrit, you are going to need some iron....which can be obtained from IRON STORES.

Serum FERRITIN estimates the amount of iron you have in storage. Transferrin Saturation (TSAT)estimates the amount of iron immediately available for red cell production.

Think of it this way...the Ferritin is like the money in your savings account. You can't use it right away...first you would need to transfer it to your checking account...and the Transferrin Sat is like money in your checking account...ready to be used right away...

If your Ferritin is below 100 and your TSAT is below 20% that means your iron stores are low. This is called ABSOLUTE IRON DEFICIENCY...and you will need iron supplements or else the Procrit won't work.

Functional iron deficiency, with normal ferritin levels but low transferrin saturation, is presumably due to the inability to mobilize iron stores rapidly enough to support increased red cell production.(the bank took too long to transfer your money from your savings account to your checking account).

To provide enough iron for red cell production, guidelines recommend that Ferritin be maintained between 100 and 800 (THIS MEANS YOURS IS OKAY).....and the Transferrin Sat be maintained between 20 to 50%...

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[andyarundel]

This link is very good for anemia info



http://www.anemiainstitute.org/

[cuteus]

how serious can anemia get?
http://www.umm.edu/patiented/articles/how_serious_anemia_000057_3.htm

[cuteus]

How did it go with the consult on the 17th? do tell more!