Taken to the brink

[KICKSTART]

and then brought back again ..does anyone else feel like this happens to them?  For a few months now my Hb has been around 7.4 and never rising to more than 8. This along with the other problems ive been having made me feel like death on legs , well actually death could probably walk faster than me ! Ive been begging them to give me a transfusion, im not on the transplant list. But no , build it up with epo and venofer (which can take weeks, especially when you are as low as me). Anyway on tues to my suprise i saw my neph walking down the corridor , so i made him stop and told him what hell i was going through and would he please give me that transfusion. He said he would check my levels and let me know. Today i went in and yay i got it , not 1 but 2 , i was so low . Wow i feel better than i have done in months , i can actually walk about without my heart pounding in my chest. Im never going to let them take me so low again , i dont understand why they do it ?  But now the big question is .. no one can understand why it keeps dropping so low ? NO obvious reason.

[Dianejt]

I was told from Franks doctors that without kidney function you don't have some chemical(?) that helps the bone marrow produce rbc.

[brandi1leigh]

This happens to me all the time. I have had 28 units of blood over the past 2 years. In my unit if you drop below 8, a transfusion is automatic.

My doctors made me go see a hematologist to make sure that there wasn't something else going on. I had to have a bone marrow biopsy to make sure that the marrow was okay.

Eventually (after 3 bone marrow biopsies--which aren't fun), I was diagnosed as EPO intolerant. Epo works for me, but it takes a much larger dose than other patients. This causes huge problems with my insurance, who often say my doses don't fall within what they will pay for.

I guess my best advice is that if your level falls again, get a referral to a hematologist. Because of ESRD, we tend to think that all of our medical problems are related to our kidneys, but your kidney disease could be complicating a different issue. Good luck!

[KICKSTART]

Thanks , hmm i wonder... you talk about epo intolerant ..what dose have you been on ? Im on 100 once a week and as far as i know thats the highest?  Im certainly going to push them if my Hb drops again .

[Riki]

I'm on Aranesp.. not sure of the dosage, but I get it every 2 weeks, the same time that I get my venofer..

[Marina]

Rikki  are  you  also  on  oral  iron?           
i  take  SLowFE  daily,   and  take  25mcg of  aranep every  two  weeks. 
I  get   venofer  only  if  I  need it  (I've  had  6-9 treatments in  6yrs)

I  have  a hard  time when Hg  drops  to  11 or  under,  I  can't  begin  to  imagine  what  7.4  feels  like,  I  hope I never have  to  experience  such  low  levels.

  how  often  do you  get your  aranesp?
Aranesp  is  supposed to  be  a  slow  yet long  lasting  release  drug  .  It   works  great  for  some  patients.  In  fact  most patients  in  my  unit  get  100mcg/1x/month.         NOT  ME,  I  had  to  be  more  difficult      I  have to  have  mine  every  2weeks  or  I  drop.         I  only  get  a total of  75mcg  per  month,  but  it's  gotta be  given  every  in  25mcg  doses,    2 weeks.
You  might  want  to  check to  see  how  often you  get  yours  maybe you’re  a difficult  case  like  myself  and need  lower  doses   more  frequently.      I hope you  have  a  good  unit  who  will be  willing to  work  with  you  on this.   My  nurses  are  ABSOLUTELY  WONDERFUL.   We  played  with the  dose   until  we  got it  right.  I  drop  to  a  low  11  on my  blood  work,  I  give  myself  25mcg   in  10 days  and then I  go to  my  usual  every  two  weeks.             
Take  care!!!

[Stoday]

What a coincidence! Last night my tech thought that my Hb was low, so he sent a sample off for analysis. The renal unit is hospital based, so the results came just over an hour later. I can't remember the number, but he said that I'd need a transfusion of a couple of units on Monday, subject to neph's OK.

I was a bit shocked and I felt a bit guilty because I've never donated blood. When I tried to donate it was too late; I'd been naughty when I worked in Africa and that ruled me out. 

[galvo]

How naughty? BTW I get 120 aranesp per week.

[romanyscarlett]

When I was in the hospital having one of my kidneys taken out I was on a special renal ward. There was another patient there who really struggled to keep her iron levels up.

The problem turned out to be that the dialysis machine was stripping out the majority of any Epo injections that she'd had. I've got no idea why this was happening since it didn't seem to be happening to anyone else. They got round it by giving her any Epo she was due straight after disconnecting her from dialysis so it had 48 hours to work.

Maybe the same thing is happening to you?

[Riki]

no, Marina, I'm not on any oral iron.  I just get the venofer and aranesp every 2 weeks.  There was talk of lowering my aranesp because my hemoglobin was actually on the high side, but I don't know what ever came of it.  I think they just upped my heparin, which means my hair is going to start falling out again.. *sigh*

[RenalSurvivorDotCA]

I'm lucky as far as Hemoglobin goes. I haven't needed /Iron/EPO/Aranesp for about 3-4 years. My Hb stays steady at 140. I think in U.S. units would be 14.0.

[Riki]

140???  Mine is 120 and they think it's too high

[brandi1leigh]

Not 100% sure what my EPO dose is right now because they change it regularly. I know it's higher than what is usually prescribed because my insurance didn't want to pay. That's part of the reason I had to see a hematologist, so that the insurance would be satisfied.

If you are on EPO you should also be taking iron, or getting iron through the dialysis machine (that's how I get mine). EPO works exponentially better if you are also taking iron.

[sullidog]

My epo is around 4500 they only way they'll take me off all together is if my hg goes to 14 or hier. I have a hemogologist, had one even before I got out of the hospital.
Troy

[RenalSurvivorDotCA]

140???  Mine is 120 and they think it's too high

Riki, seems normal ranges are higher for men. May also be the parameter of your unit, so they can save $$ on Iron and EPO/Aranesp. 

Normal Hemoglobin -  Women: 12.1 to 15.1 gm/dl (121 - 151)
Normal Hemoglobin - Men: 13.8 to 17.2 gm/dl (138-172)

[KICKSTART]

  Oi stop hi-jacking my thread ! 

[Riki]

   sowwy... *G*