Low HEMOGLOBIN

[Bungarian]

It has been steady in the 10 to 11 range now.

This made me think of something else. When they put the iron in my line I can taste it in my mouth. Anyone else have this happen?

[kitkatz]

The goals for a dialysis patient is to be between 10 and 12 hemoglobin.  Too high and you will clot the machine, too low and it is not good for you.
I can taste the iron when they give it to me intravenously at dialysis, especially the venofer iron.

[Simon Dog]

The goals for a dialysis patient is to be between 10 and 12 hemoglobin.  Too high and you will clot the machine, too low and it is not good for you.
I can taste the iron when they give it to me intravenously at dialysis, especially the venofer iron.

The "too high" concern is not clotting the machine but thrombolytic side effects from EPO/Micera.  The research shows that attempts to push HGB into a "normal" range increases risks of things like CVAs, PEs, MIs and all sorts of nasty effects.   These risks are substantially reduced by targeting an HGB of 10-11 in renal patients rather than 12-14.

[PrimeTimer]

Anyone being told by their clinic that they must stay on Micera at the max dose for at least 3 months before they can be switched back to EPO? Despite his Hemoglobin level continuing to drop on Micera and Iron IV's, that is what Fresenius told my husband. Nurse said that they expect that his Hemoglobin will "suddenly shoot up" on the Micera but that they have to give it a try for at least 3 months. By the way, Fresenius signed a contract with the producers or makers of Micera so all this sounds fishy to me. He wants to go back on EPO, he's anemic and feeling it. All other labs are good.

[Charlie B53]

.......................Vitamin B-12 and folic acid levels must also be in a normal range for healthy red blood cell production to occur." -  http://www.davita.com/kidney-disease/overview/treatment-overview/anemia-management-and-chronic-kidney-disease/e/4840

BTW, Renavit is a vitamin B-12 and Folic acid supplement.  Both help in the production of red blood cells.  However, since they are water soluble, we loose them during dialysis treatment.  Not uncommon at all for patients to be taking this or some other renal vitamin.

These little tidbits didn't stick with me when I first read these postings.   Now that I have a clearer head I have to wonder if either of these are contributing to my very low energy.

Since my memory isn't near what it used to be, I think I will print this and put it in my PD Log, thus at Clinic next month I can be reminded to ask more questions.    Like do our labs normally check these things.

My red count hasn't yet ever dropped very much, but my iron is constantly a problem, often dropping as low as 10% dispite taking the daily supplement.  I cannot have much spinach as it drives my gout.  And THAT is no fun.  And I love, cooked or raw.

Thanks Pat Downs for digging out this and posting.  Information like this can make a big difference in helping all of us stay as healthy as possible.

Take Care,

Charlie B53

[Simon Dog]

Anyone being told by their clinic that they must stay on Micera at the max dose for at least 3 months before they can be switched back to EPO?

Micera seems 2b working 4 me, and the head of hematology at a major hospital also approved it, however, the local FMC clinic staff was very up front about the fact that the switchover was cost motivated.

[PrimeTimer]

Anyone being told by their clinic that they must stay on Micera at the max dose for at least 3 months before they can be switched back to EPO?

Micera seems 2b working 4 me, and the head of hematology at a major hospital also approved it, however, the local FMC clinic staff was very up front about the fact that the switchover was cost motivated.

2-3 injections per month, the nurses time spent injecting the patient and preparing and administering Iron IV's, cost of test tubes, needles, syringes, alcohol wipes, gauze, tape, shipping, cost of lab technicians to perform tests and document lab results (sometimes 2-3 times a month), nurses time following up on lab results and notifying patient, completing required paperwork, etc...AND...dealing with an anemic patient on your record who is feeling poorly does NOT seem very practical to me. 

[Simon Dog]

Syringe prices are measured in cents.   The clinic is not decreasing the number of home patients the home care RN supports because she administers Micera.   Syringe cost included in price of drug.    Lab owned by Fresenius, so the biggest part of the lab cost is probably the Fedex shipping.    The bean counters are convinced it is cheaper.

[Charlie B53]

Bean Counters = Necessary EVIL

I'll leave it at that as they tend to drive my BP up and I don't need that.

My Mother was a CPA so I very well understand the need for accounting.  But when Corporate makes decision strictly on cost instead of effectiveness, reliability, and all the things that really make the difference it's like replacing Quality with Corporate Greed.


I am very surprised at myself that I managed NOT to write a book as I usually do.  I run off at the mouth.

[Simon Dog]

I asked a big name hemo doc about Micera v. Epo.

He told me he thought it was fine, and might even be a good idea.  He is outside my dialysis treatment loop so he is not involved in the financial incentives.

If you want to worry about financial incentives, just look at how the $$ has driven the US to a 3 day/week standard when every other day would be better for most patients.

[PrimeTimer]

I wonder how many companies these days are finding themselves cooking the books. In the end, they suffer, their employees suffer, their customers suffer, we ALL suffer. 

[PrimeTimer]

Any suggestions for how my husband can politely tell his Neph to switch him from Micera back to EPO or at least do something about him being anemic? His Hemoglobin is still low at 8.3 and not budging. All other labs are good. Seems unacceptable that they would let a patient continue being anemic month after month. I feel bad for him and helpless with this. 

[Simon Dog]

Any suggestions for how my husband can politely tell his Neph to switch him from Micera back to EPO or at least do something about him being anemic?

If the neph says no, ask:

1. Is this decision being made on a medical, financial or policy basis?

2. If it is not being made on a medical basis, to whom do I appeal?

[PrimeTimer]

Thanks for the suggestion. I don't go to his appts with him but if I did, that's probably what I'd ask. My husband is the quiet polite (shy) type and has had the same neph for years. Doubt he'd use your suggestion but I do think he's at the point where he's going to be firm. Of course I offered to go with him and be his "advocate" but he doesn't want me to. I don't know why he can talk to me and not others but I wish he'd be more assertive in this case. I don't want to cause trouble between him and his neph so I bite my tongue. Da*mn disease.     

[Charlie B53]

It can seem very difficult to gain information when you are not allowed to go and ask the hard questions.

Will your Husband follow directions?

I'm thinking of you will write a couple direct questions down, give the note to your Husband immediately before he leaves for his appt.  Ask him to PLEASE ask these so we can both understand the reasons for these decisions.

If he will then either the Dr will give good answers, or change back to Epo.

Good Luck!

Charlie B53

[PrimeTimer]

It can seem very difficult to gain information when you are not allowed to go and ask the hard questions.

Will your Husband follow directions?

I'm thinking of you will write a couple direct questions down, give the note to your Husband immediately before he leaves for his appt.  Ask him to PLEASE ask these so we can both understand the reasons for these decisions.

If he will then either the Dr will give good answers, or change back to Epo.

Good Luck!

Charlie B53

I had the same idea, which he quickly objected to. I guess if he doesn't have a conversation with his neph then not much I can do but accept it and the consequences. He's smart, he knows and is very worried about the risk of heart damage caused by prolonged anemia as well as other risks but...he doesn't always (if ever) speak up to the people he needs to speak up to. Wish certain people in his life knew this little fact about him. I cannot make him say or do what he does not want to so I don't. But it sure sucks seeing him feel so lousy. Saddens me. *long sigh*   

[PrimeTimer]

  Hubby's neph looked at him today and asked how he was doing. He said "ANEMIC". Neph looked over his chart and labs, declared that the Micera was not working for him and ordered the nurse to put the man back on EPO! Whew!!! Of course he has to wait about a week since he was given a shot of Micera and some Iron the other day but come next week...he gets to go back to giving himself EPO injections at home AND hopefully emerge from this anemic nitemare!

[cassandra]

Sorry for reading this a bit late, but mighty glad he's got his EPO back

       


Love, Cas