when does your dr. order a transfusion?

[sullidog]

just curious when your dr. orders a transfusion? My hemoglobin is at 8.8 but my dr. doesn't order a transfusion unless the hg drops to 7.0, in my mind that is too low to start, what if the person is having chestpain/short of breath before they get down to that, I'm personally not but if someone is having those symptems wouldn't it be reasonable to not wait that long?

[jeannea]

You want to avoid transfusions as much as possible if you're on the transplant list. It introduces antibodies which make it tougher to get a match.

Are there no other treatments that work for you such as epogen?

[hubbyhatesdialysis]

My hubby's doctor didn't order a transfusion for my hubby until they absolutley had to - he was in the hospital for severe chest pains due to anemia. They didn't want him to get the transfusion because like jeannea said it raises the antibodies and his uncle was going through the donation process. He usually gets the epogen shots though and that seems to keep it in check for the most part.

[big777bill]

 My Drs order a transfusion when I get down to about 7 or just a little higher. I had a liver transplant so I'm immunnosuppressed already. I've been on procrit for about 2 years now and that usually keeps me at about 9.5 to 10.0.

[justme15]

for me, my doc will order a transfusion when I get below 7.0.  however, it also depends on how I feel. If I'm at 7 something, but I have chest pains, increased SOB, dizziness, etc, then they will order one sooner.  so they always ask how I feel, first and foremost, and then look at the numbers.  I, too, am on the transplant list, so they are trying to only give me blood if I absolutely need it.
Sometimes I will be in the low 6's or 5's before I get a transfusion.  this was because my body had compensated so much for my anemia that I didn't really feel any symptoms until it had gotten this low!

[Lovebelle]

My hemoglobins dropped down to 8.0 In october but my doctor still did not order a transfusion. They increased my EPO dosage significantly though to try to bring the levels back up. The only time I did get a transfusion was year ago and that was because my levels dropped below 7 and it was as a "last resort" type of situation. As an earlier post indicated, doctors do not typically want to give blood products if you are a transplant candidate because it raises antibodies, making it harder to find an appropriate match.

[Riki]

I still don't understand.. do doctors in the US not treat regularly for anemia?  I, and everyone else in my unit, gets Aranesp or Epo and iron at least every 2 weeks, whether we need it or not.  Dosages depend on numbers, though.

[KarenInWA]

I still don't understand.. do doctors in the US not treat regularly for anemia?  I, and everyone else in my unit, gets Aranesp or Epo and iron at least every 2 weeks, whether we need it or not.  Dosages depend on numbers, though.

I was treated quite well for anemia when I was on D. Pre-D, I went to the hospital for Aranesp shots every other week (had a blood draw to see if I needed it). Once I was on D, I was routinely given epo shots, even when I was at 11!. They only stopped them when my hgb was over 12. At one point, it even got to 13.2! I remember that day, a co-worker had asked how I was doing, and I told him I feel great! Later that day at D, I found out that my hgb was 13.2. No wonder I felt so good!

Now that I am post-tx, my hgb is hanging around 9. I have so far been given 2 Aranesp shots, one on Dec 2nd, and one on Dec 29th. Last reading was yesterday, and it was 9.4. It was 9.1 on the 29th. Anxiously awaiting for it to move up already.

KarenInWA

[Riki]

I don't understand those numbers.. *LOL*

When I was on PD, I got Aranesp every 2 weeks.  At one point the dose was high enough that I needed to be stuck twice.  Since I started hemo, my hemoglobin has gone up substantially.  I don't need as much Aranesp, but I think it's because of the iron that's given at the same time.  I also like that I don't need to get stuck with the Arenesp anymore.  That stuff stings... *L*

It just seems that a lot have high hemoglobins and are anemic, but don't seem to be treated regularly for it.  It doesn't make sense to me

[Lovebelle]

I still don't understand.. do doctors in the US not treat regularly for anemia?  I, and everyone else in my unit, gets Aranesp or Epo and iron at least every 2 weeks, whether we need it or not.  Dosages depend on numbers, though.

Yes Doctors in the US do regularly treat Anemia with EPO, iron, or other similar therapies. I self administer EPO at home weekly and have regular labs drawn. If my Hemoglobins are above the roccommended goal then they will either reduce or have me hold my dose. And if I run low then of course they will increase it. I guess its just one of those therapies that always change depending on labwork.

[Riki]

It just seems that there are a lot of people on here talk about being anemic, but they don't say that they're being treated

[ToddB0130]

I also get my hemoglobin checked every two weeks and if it's under 11 ....I get a shot of Procrit.

[Riki]

I also get my hemoglobin checked every two weeks and if it's under 11 ....I get a shot of Procrit.

Do you not get something anyway, to make sure that it stays up?  My hemoglobin is just this side of too high, but I still get treated every 2 weeks.  If after the monthly bloodwork is done, it's too high, they reduce the dose of the Arenesp, but I still get it, every 2 weeks without fail

[sullidog]

my hg usually stays maintained accept when I start having access issues, everytime I have a fistula gam or some type of access work it goes down to 8 and it takes my body a while to respond to the epo when it's that low, I wish I just had something work faster cause I work and find myself falling asleep. My hg could be at 11 but when I have access work boom it goes way down, I could be at 13, work on the access, boom it goes down.

[justme15]

It just seems that there are a lot of people on here talk about being anemic, but they don't say that they're being treated

i get 50,000 units of procrit every week. and have been for a while now. the best my hgb gets is between 7 and 8.

[Joe]

My hg is running right o the edge of low and my Neph started me back on EPO. Next set of labs is on the 12th and we'll see if I have improved.

[ToddB0130]

Hi Riki ---

I take iron pills twice per day,  but other than that ........no.  Just checked every two weeks and given the Procrit if under 11.  I think I've only been 11 or higher once so .....

[Riki]

I don't understand the American numbers.  The last time I saw my labs, my hemoglobin was 114, which is almost too high.  The lowest it's been is 77, and at that time I had a colonoscopy and gastroscope, looking for bleeding.  None was found.

I know I get 60 units of Aranesp, and 100 of whatever the Venifer is measured in, every 2 weeks.  The Venifer never changes, but the Arenesp can, depending on the hemoglobin

[jeannea]

Riki, no we don't get epo enough to make sure hemoglobin stays up. I get epo until my level is over 11 then no shots until it drops again. I usually have about 4 months a year with no shots. It's a combination of Medicare policy, individual clinic policy, and concerns over the side effects of constant epo.

To be honest, while I like having decent levels, I hate the damn shots. They hurt. Bad. I'm a wimp.

[Riki]

Riki, no we don't get epo enough to make sure hemoglobin stays up. I get epo until my level is over 11 then no shots until it drops again. I usually have about 4 months a year with no shots. It's a combination of Medicare policy, individual clinic policy, and concerns over the side effects of constant epo.

To be honest, while I like having decent levels, I hate the damn shots. They hurt. Bad. I'm a wimp.

Ok.. so it's a medicare thing.  That kind of explains why it's not a constant treatment like we get here.  Another thing I don't get. Epo.  That has to be given 3 times a week, doesn't it?  It did when I took it.  Why not use Aranesp instead?  It's once every 2 weeks for most people.  I like it a lot better than Epo.

[Love my son]

You want to avoid transfusions at all cost.
It will raise your antibodies.  More antibodies, less chance of transplant.
My son's PRA is 98%, Roughly that means he will match less than 2% of the WORLDS population.
Not good odds....still on the list 7 years.
Currently in a program to lower antibodies.

[fearless]

If you live in the US and you're on dialysis, the doc and clinic are supposed to keep your hemoglobin between 10-12.  It isn't healthy to have a hemoglobin as low as 7 or 8 long term.  And it's not good to receive repeated transfusions.  I honestly don't understand what's going on for those of you who aren't receiving epo or some alternative.  UNLESS -  you are not on dialysis yet.  If that's the case, Medicare won't pay for epo no matter how anemic you are.  (which is bad policy, because the chronic anemia feeds back into the downward health spiral)  But, such is healthcare in the U.S. 
normal hemoglobin:
Adult males: 14-18 gm/dl
Adult women: 12-16 gm/dl

kidney patients are kept below 12 because when you're dosed with epo, if your own body is still generating the natural hormone, it will reduce what it's generating when it senses the body has adequate RBCs/hemogl.  Keeping hemogl below normal assures that if the body is still producing adequate levels it will kick in to make up the difference.  (it's a way to make sure you're not being given more epo than you need)  But if your hemoglobin is way down, and there is no other reason (like low iron, bleeding, other health problems) then that means your body is not making the hormone needed to generate RBCs.

Talk to your doctor.  Ask him or her to explain how your anemia is being treated and why you're not being given epo or some alternative.  Also if you're on hemo, make sure your iron levels are being checked and addressed.

[big777bill]

 I'm pre-dialysis and my medicare part D pays for EPO with a $38 co-pay until you hit the doughnut hole then I have to pay 50% of the cost. I take the EPO every other week if I'm hanging around 10. When it goes below 10 it's taken weekly. The thing we all have to remember here is we are all different and our nephrologists sometimes use different treatment protocalls.

[Rain]

Riki

I take Epo because I'm allergic to Aranesap.  When i first started D I was given Aranesap and my joints would swell and I would be in so much pain. 

[Riki]

Riki

I take Epo because I'm allergic to Aranesap.  When i first started D I was given Aranesap and my joints would swell and I would be in so much pain.

I've said before, that it's not for everyone, and there's is one guy in my unit that does need the epo.  It just seems to me that everyone in the US uses epo or procrit, and only when their hemoglobin drops too low