Living a See-Saw Life

[Bub]

I become extremely anemic, fatigued and unable function well.  I get a dose of Procrit and in a few days I am feeling great. But then sure as sunrise my red blood cell count drops and I hit another low.  I have complained but was told they can only give procrit when my count hits a certain level which must be very low from the way I feel.  The only concession has been they monitor my red blood count at least weekly as opposed to monthly in the past. I got a dose Saturday and I am waiting for it to kick in.

[Zach]

Do you receive EPO sub-cutaneous or by IV?

[paris]

When I first started getting epo shots (4 years ago) they would give it if my hemoglobin was 13 and I felt so much better. A couple of years ago, they refigured the "magic" number and now if I am at 11, I don't get a shot.  It was found that the shot causese the blood to thicken thus increasing strokes, etc.  All I know is that I always feel tired, worn out and just want to sleep.    Have they checked your iron reserves  --  ferratin levels?  If you iron is low, the red blood cells have nothing to "grow" on.   I hope you find an answer.   

[kimcanada]

I HATE ANEMIA .... Blood work today and I am at 67 , should be 120....


I am up and down like a yo-yo...   I feel for you Bud

[Wenchie58]

I walked (more like crawled) around for two months with a hemoglobin of 7.1 before they thought that maybe, just maybe, they should give me something for a bit of a boost.  If your clinic won't deal with the issue ask to be referred to a hematologist.
My new blood guy put me on Iron, B12 and Arenesp and now my count is up to 10.2 and I feel like I could leap tall buildings...can't wait to see what happens when I actually get up to normal.

[jbeany]

When my kidney problem first showed up, I got very anemic.  I had no idea at the time what the numbers meant when the specialist they sent me to said, "You are at 6.5."  I did know that it took me half an hour to make my way up a flight of stairs!  The day the doc wrote the scrip for my first batch of Procrit, he had to take an emergency phone call about another patient.  He apologized, but took it right in the exam room with me.  When he finished the phone call, he had to shake me to wake me up.  I feel asleep sitting up in the chair while he was having a conversation less than 2 feet away.

Bub, are you in-center?  My center does Hemoglobin levels, along with calcium and phos every week.  Guess I thought that was standard.

I agree with Paris - demand that they check your iron levels.  I've been on the same dose of Aranesp for ages - but my hemoglobin drops like crazy whenever my iron levels get low.  I was getting 10.2 to 10.3 until they started iron 3 weeks ago - I'm up to 12 already.

[MandaMe1986]

Yes I agree demand if they don't want to.   I am sorry your going through all of this. I hope you get it all under control soon. 

[Ang]

keep  making  loud  noises  till  you  get satiafaction and  feeling  better.

[Bub]

My Procrit is given at time of dialysis shot directly into machine. Nurse practioner did advise me that I was getting a very low dosage.  Its all being "discussed" currently.  Thank you for all your responses.

[Savemeimdtba]

Oh man... I recently discovered what EPO can do and now I can't stand the thought of going back to where I was.  I could barely clean the house or go out for hours at a time without getting completely exhausted.  I started EPO two weeks ago and went out of town the ENTIRE weekend and didn't get tired once!  Cleaned the whole house yesterday and today and have done just fine... no reason you should have to feel like that if they can fix it. 

[paul.karen]

 

I am forever tired with no lack of motivation or energy.
I never heard of These medicines but will ask my neph about them.

I hate the way i feel. And im working (like a zombie at times) 40+ a week.
When i get home i want to just go to bed.  But i cant, if i do i will wake up around 9 or 10 and be up all night.

[monrein]

http://www.medicinenet.com/erythropoietin/article.htm

Here's a link with info about EPO.

[paddbear0000]

Right before i started dialysis, my hemoglobin level was down to 7 something. I was exhausted, slept all the time, winded and freezing all the time. The hospital was giving me iron and 6000 units of epo twice a week and 8000 the day before my 2 days off of dialysis. They got my level up to 12.1 and I was feeling great. They didn't set a limit either. And I was never cold. My new clinic though, doesn't want the patient's hemoglobin level above 10! They check once a month and only do epo and iron for 6 treatments at a time. I am once again exhausted. It's not a medicare thing either, because I don't have Medicare and they still limit me.

[willowtreewren]

My new clinic though, doesn't want the patient's hemoglobin level above 10!

Paddbear, that sounds nearly criminal! If my husband falls below 13.4, they start up the EPO. Why are the clinics all so different?

Before he was on dialysis and taking EPO he just slept all the time. You need a 

You, too, Bub. 

And Paul. 

And anyone else who isn't get this miracle drug the way you should. 

Aleta

[monrein]

http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/

A couple of points about EPO and hemoglobin levels.  Women have lower target levels than men and if dialysis patients' levels go up too high (despite feeling good) this can put us at risk for heart trouble.  I believe our guideline here is 10 for women, 12 for men.  There is some recent controversy about these target levels, when the patient is otherwise very healthy with no history of heart disease.  See this link  http://www.thedoctorschannel.com/video/1731.html

Also, the best way to get the benefits of EPO (different for Aranesp btw which has a longer half-life) is by subcutaneous inection and NOT through dialysis lines.  Less of this expensive drug is required if it is done SubQ and it is apparently better absorbed.  The needle is pretty darn tiny so giving it to yourself is no big deal.   Dialysis units in the US however often prefer to put it through the lines because they make a lot more money this way.  It's also crucial to make sure that iron levels are adequate and if they're not then ferritin can be had intravenously while dialysing to raise them.  Also check vitamin B levels. 

This is my understanding of this issue and hope that I'm not giving any misinformation.

[RightSide]

Me too.  When I was first diagnosed with ESRD, I had become like an old man.  With hemoglobin 7.4, I got tired just vacuuming the carpet in one room.  And with the bone pains in my hip joints and spine from the secondary hyperparathyroidism (PTH over 1200, calcium "critically low"), I could barely walk up a flight of stairs.

Between the Aronesp, the Venofer (iron), the Tums (calcium) and the Zemplar (vitamin D), I have been totally rejuvenated.  My hemoglobin is 12, my PTH is about 180, I have lots more energy, and the bone pains in my hip joints and spine have totally vanished. 

[Hanify]

I've had no problem getting the epo either.  Subq and whenever I need it.  Rightside I'm interested in what you're saying about the hip joints problem and the hyperparathyroidism.  I have problems with walking, and my onc acts like it's a complete surprise.  Is what you're talking about common?  Because I'm cancer first and renal second, sometimes I feel like I slip between the cracks.

[Bub]

All of this is great information.  Center gives me iron with great regularity (which by the  way gives me moderate to severe diarrhea immediately after dialysis).  But At 7 months of dialysis some days I am so tired I just cant get up out of bed.  I work full time and and am completely useless on those days. I don't mean to whine but this extreme fatigue is the worst part of ESRD.  If they could get this under control my quality of life would improve 1000%. But the only real advice so far from nephrologist (actually his assistant as I have never met him) was to take disability.  I a reluctant to do so but gosh a mighty I  tired.  I work 6 days a week and on every day but Sunday I leave my apartment at 6 or 7 am and return at about 7 pm.  Its just getting to be too much.  And when you add cooking, laundry, cleaning house, etc. (I am single---quite handsome, intelligent and a nice guy if any one is interested) I am just overwhelmed.

[willowtreewren]

I am single---quite handsome,

You would never know it from your picture! 

Where are you Bub, so we can send the ladies your way?

Seriously, though, I feel for you. Taking disability may help with your work situation, but it wouldn't improve your quality of life. I hope that your team will be able to find a way to alleviate your fatigue.

Aleta

[Zach]

But the only real advice so far from nephrologist (actually his assistant as I have never met him) was to take disability.

Eight months on dialysis and you've never met your nephrologist?  What the heck??
Maybe he should go on disability!

EPO, IV Iron, Nutrition -- just a few things that might help.

 

[petey]

Marvin has been on EPO for years -- way back to his first dialysis treatments in 1995.  When we started home hemo almost two years ago, his hemoglobin started going up (finally, on its own).  His clinic says if your hemoglobin is below 11, you get EPO (dosage depends on how low below 11 it is).  Anyway, at the start of home hemo, I was giving him his EPO shots (sub-q, in the tummy), but the nurse kept lowering his dosage because his hemoglobin was either holding steady or climbing.  About eight months ago, his hemoglobin got high enough (13) that he didn't need the EPO anymore.  He hasn't had any in 8 months, and last month his hemoglobin was 16!  Wow!  The nurse said Marvin's blood must be as thick as motor oil.  To us, that's another big plus of home hemo.

[Hanify]

Oh my gosh Bub, how do you do it?  You must actually be as strong as an ox!  I couldn't imagine working a full day feeling like you do.  Work is really important though - try to hang on.  Any chance of a bit of leave though - a day here or there to help you through a bad patch?  I also think it's extremly strange you haven't actually met your neph!  Ckeck out those options mentioned by the others - and be assertive.  We're all behind you.  You should feel better than this.  My husband says to hit them on the nose with a wet newspaper if they don't listen!

[Jean]

Can any of you EPO users tell me your dosage and how much you pay for it?? I am in California, USA, and have medicare and a supplementary program too, but the one price I got was so high, it would wipe out my drug benefit for the entire year in a couple of months, and I use way too many other drugs to have no coverage for a couple of months.

[Yvonne]

  We are in the Uk and John gets his EPO twice a week and it is free,  mind you he is 73 and has paid NHS for all his working life

[willowtreewren]

We have BCBS and Medicare. We don't pay anything for the EPO, but they call it liquid gold, so I know it is expensive. We have to take the empty or expired vials back in to the clinic to get the next dose and sign for them. There must be a black market for it!
Aleta