holy hemoglobin, batman!

[gothiclovemonkey]

ARG!
So apparently i get 2 more blood transfusions. this worries me, and totally grosses me out!!!
its a 7, but that just doesnt seeeeeem that low to me.. idk much about it though.

weird thing is, ive been eating meat or high protien stuffs and pretty well nothing else but its still dropping, even lower than it was the first transfusion i had. i hate meat, but they told me i needed to do that, so i have been, why in the heck is it still dropping?!

i feel like crap. stepped on, chewed on, regurgitated, stomped on crap.

any info about this, or personal experiences you want to share?

[cattlekid]

I felt halfway okay at 8. When I went down to 6.6 when I was in the hospital with pneumonia, it was inevitable. I would have never gotten over it if I wouldn't have had a transfusion. I did get irradiated blood which did not change my antibodies at all.

[Angiepkd]

I am with you GLM!  I have been forcing myself to eat meat but my numbers haven't come up much.  It is really hard to switch from my low protein pre-D diet to this all protein dialysis diet.  I had a transfusion last time I was in the hospital, before I knew about high antibodies, etc.  I need to do some research on this topic.  How much do your antibodies go up after a transfusion?  I haven't started my transplant testing yet, so I have no idea what my antibody numbers are.  Hope you start to feel better soon!  You have really had a rough time of it lately!

[billybags]

for over 6 months my husband has had the same problem. he is on APD. His HG was 7/8 UK figures. He felt like shit, tired, no appitite, out of breath, needed to sleep alot. The neph was reluctant to give him a transfusion, he did keep upping his epo, which apparently takes time. The dietition was worried because he was getting malnurished and told him to eat ANY thing he fancied. So he did. He ate things he was not supposed to have, in moderation. Crisp, bacon butties, jacket potatoes, cream, custard, it was lovely to see him eat, after a month his HG is up to nearly 11, he is not so tired, he does not go to bed in a day time to sleep and he says he feels alot better in him self. So are you lacking in things with the renal diet, makes you wonder!

[geoffcamp]

I had issues like yours but when I was first diagnosed. I had multiple transfusions and started dialysis. Once I began getting EPO it seemed to balance out. I am a meat eater, I love a good steak so that has never been an issue however, I thought that had more to do with protein than anemia. But I do believe the kind of go hand and hand I guess. How long have you been on dialysis?  Are they meeting your hemoglobin goals?  In my unit last time I checked the goal was to be at 10 plus. One of the issues that we face is a general guideline the centers use do not work for every individual. Since I began dialysis we have been able to successfully keep my anemia in check with the use of EPO.  As far as antibodies go they should be giving you transfusions that have been treated to keep your antibody levels in check. I had a surgery a few years ago and an artery was "nicked" and I required two units of blood and I was told they did something to the blood to lower or remove antibodies. Maybe someone on here is more well versed on what I'm talking about. I'm sorry I do not recall exactly what I was told about the blood I recieved right now. Good luck I remember how crappy and worn out I felt when I had my anemia issues. G.

[jeannea]

Ask if your iron is in the right range. You need that as well to keep your hemoglobin up. You can do it if you need the blood.

[boswife]

Bo is just comming out of his 'transfusion every week' stent.  He gets an intestiinal leek of blood that seeps slow enough to not need hospital, but uncontroled, it means transfusions till the bleed wants to stop.  It's been awful this time, but poops been brown for a week and hbg slowly commen up.  It's an awful thing for what ever reasons it's low

[kit78]

Last June that happened to me and mine was also at 7.  The Doc also gave me a transfusion and they said something was eating my platelets.  Right now my mind went blank and can not think of the term they used.   I had to go on steroids to correct the issue and because of that had to test my blood sugar until I was off the steroids. 
At Dialysis they should be offering protein Bars, like Zone Bars or Liquicell which I just canceled as I use to get packets at HD plus 1 bottle a month but it's too sweet for me and have had enough.  Try string cheese (if you can) eggs, as there are other protein sources out there.  I'm surprised your dietician didn't go over this with you.  Feel better soon.  It all takes time.

[dialysis.sucks]

I've hovered at 7-8.5 for the past couple of years, which for a guy is pretty bad, because I'm not real big on transfusions nor EPO. Recently I've started to bring it back up (without EPO - Which one of the first things on their site says "Using EPOGEN® can lead to death or other serious side effects - just remember that) using beet juice and bee pollen. Funny enough, both were recommended by my Nephro. I started juicing every mornings breakfast with beets and apples as a primary ingredient with bee pollen and I experienced a 20% increase in hemoglobin levels within two weeks.

[gothiclovemonkey]

dialysis.sucks... what if your allergic to pollen? I mean, i assume (because i dont truly know) that its the same thing? but strangly enough i can eat honey, which you would think if im allergic to pollen i could, idk... confusing..

my dietician has told me to eat meat, lots of meat, and some cheeses and of course PB. which i do. and i have zone bars, and they give me protein ice cream at d.

they wouldnt give me the treated blood, they said it comes from somewhere else, and dr didnt order that type.

idk if it was d or the transfusions, but both times now i have felt terrible afterword. i hurt all over and especially in my lower back. which that could be the 4 hrs of blood followed by my 4 hrs at treatment...
and really bad nausea!

they have no idea why im so low. they thought the ulcers were bleeding again, but no sign of that in my fecal collection they had me do.

[kit78]

It was my antibodies eating my platelets, but they never found out why.  I'm a little bit under the mark but doing ok.  I had Diverticulitis at the same time but don't think they had anything to do with each other. 
I was so sick back then I do not remember what I felt like after my transfusion.
Feel better and ask the doc for some meds to kill the nausea.  I take something almost every evening. Not sure what is causing it though.

[dialysis.sucks]

dialysis.sucks... what if your allergic to pollen? I mean, i assume (because i dont truly know) that its the same thing? but strangly enough i can eat honey, which you would think if im allergic to pollen i could, idk... confusing..

my dietician has told me to eat meat, lots of meat, and some cheeses and of course PB. which i do. and i have zone bars, and they give me protein ice cream at d.

they wouldnt give me the treated blood, they said it comes from somewhere else, and dr didnt order that type.

idk if it was d or the transfusions, but both times now i have felt terrible afterword. i hurt all over and especially in my lower back. which that could be the 4 hrs of blood followed by my 4 hrs at treatment...
and really bad nausea!

they have no idea why im so low. they thought the ulcers were bleeding again, but no sign of that in my fecal collection they had me do.

What's your PTH at? Is your protein also low? Remember that the act of dialysis itself destroys red blood cells. Less for catheter patients than needle, but still takes a hefty toll. Bee pollen is literally the pollen from the plants. I'm allergic to bee stings, but not pollen or honey, but with that said, always consult a physician or try just the smallest amount on your skin. IF you get a red rash, well, stay away. Last thing you want to do is go into anaphylactic shock. also I LOATHE beets... Can't stand them in any way shape or form so if you're the same way adding apples and carrots help to dilute the taste.

[gothiclovemonkey]

i love beets lol
my pth is high but protien is low.

i already admit i do feel a wee bit better, and they said it will take time to get back to 'normal' but sheesh i feel like this has been dragging on and on for a while already lol its so lovely out, i want to enjoy my son and the weather!
I just went shopping for groceries and boy it pooped me out! I had to stop half way through my list and pay and come home, ill go back for the rest later! its insane to me how low my energy has been lately, but its slowly but surely coming back.

[dialysis.sucks]

i love beets lol
my pth is high but protien is low.

i already admit i do feel a wee bit better, and they said it will take time to get back to 'normal' but sheesh i feel like this has been dragging on and on for a while already lol its so lovely out, i want to enjoy my son and the weather!
I just went shopping for groceries and boy it pooped me out! I had to stop half way through my list and pay and come home, ill go back for the rest later! its insane to me how low my energy has been lately, but its slowly but surely coming back.

My problem isn't really walking. It comes from standing up if I've been sitting for sometime. I literally have to catch my breath. Feels like I'm breathing, but not getting any oxygen (that's always a fun feeling). Bending over is also an ordeal. I almost have to psych myself up to do it, because I know I'll have the same feeling as if I was standing up for the first time. Can make for awkward social situations when you're like me and you try very hard to make it appear as if you're not disabled or sick. The carvedilol that I'm on also doesnt help as it basically slows down your heart. Well, when you do any kind of exertion your heart pumps more because you're using up oxygen... unless you're on carvedilol lol If you love beets I say go to town with them. Don't cook them though, that kills a lot of the iron and helpful nutrients. The best way is raw or juiced. Kidney failure wouldn't be soo bad if it werent for the anemia  (and all 900 other issues)

[Sugarlump]

I have had a longstanding problem with keeping my hb up. Always dropping to between 6 and 7 which makes me tired, breathless and grumpy!!!
Despite weekly iron and epo, it doesn't really respond.

But I have found taking Vitamin B complex with folic acid and Vitamin C really helps.

Now floating between 9 and 10.
In truth it should be in the 12's to feel good.
But my goal is just to avoid any more blood transfusions which isn't good for future transplant hopes.

[Henry P Snicklesnorter]

.

[Sugarlump]

I have had a longstanding problem with keeping my hb up. Always dropping to between 6 and 7 which makes me tired, breathless and grumpy!!!
Despite weekly iron and epo, it doesn't really respond.

But I have found taking Vitamin B complex with folic acid and Vitamin C really helps.

Now floating between 9 and 10.
In truth it should be in the 12's to feel good.
But my goal is just to avoid any more blood transfusions which isn't good for future transplant hopes.

G'day Sugarlump, - What levels of EPO and Iron have they been giving you? 


After spending 3 months in hospital with severe infections and being drip-fed, I was on a weekly dose of 10,000iu Epo and 100mcg iron. I slowly came up from Hb of 6 to a Hb of 12  over 3 months. They then changed to Epo at 10,000iu per month and Iron 100mcg per month. The next blood draw showed it had dropped again to 8.5


I'm now on 100 of Aranesp every 3 weeks and 100 of Iron each fortnight and it seems to have stabilised between
11 and 12.




Henry P

Hi Henry they give me 100mcg of aranesp and 100mcg of iron weekly. They did give me iron twice a week but all that did was raise my Ferritin level too high and
drop my hb level.. I only really get symptoms at about an hb of 7 or less, I guess my body has learnt to cope but hills or stairs make me puff...
On previous spells of dialysis my hb was a lot higher and I had more oomph.

I no longer have the oomph to walk my dog or go to the gym. Is it something I should accept as a long term dialysis patient or should I keep nagging them to
improve my hb and fitness?

[amanda100wilson]

I was told that high PTH can cause problems with the effectiveness of EPO.

[Henry P Snicklesnorter]

.