My Neph is a quack

[needlephobic]

Can't stand my Neph it is all about him. Today he asked me why I wasn't taking the epo med told him I had a reaction to it and have a underlining heart condition that he is aware of. He told me there is no other med for anemic which i know is a lie from what I read here. He is in it for the money. since I started D never had any med for that but since this bundle thing started they been giving out epo shots like candy we are talking 3 times a week every time I go to D isn't that a little much? Wish he would get off his high horse and listen to the patients.

[greg10]

Can't stand my Neph it is all about him. Today he asked me why I wasn't taking the epo med told him I had a reaction to it and have a underlining heart condition that he is aware of. He told me there is no other med for anemic which i know is a lie from what I read here. He is in it for the money. since I started D never had any med for that but since this bundle thing started they been giving out epo shots like candy we are talking 3 times a week every time I go to D isn't that a little much? Wish he would get off his high horse and listen to the patients.

You seem to be coming from the other end with respect to epo, compared to someone like Tyefly who complained her hemoglobin was too low and she functioned optimally at 11 g/dl or higher.  What is your hemoglobin level?

As to the bundle and epo, I think you have gotten it backwards.  There are talks that epo would be reduced with bundling because the center no longer has an incentive to give too many epo shots because the payments are "bundled" so there is no extra payments for infusions of medication.

Interesting, Tyefly was saying she is not getting enough epo with the new bundling, so may be you two should get together and swap shots :joking:

http://ihatedialysis.com/forum/index.php?topic=21503.msg357852#msg357852

[KICKSTART]

You are getting Epo 3 times a week    Over here we dont have an issue with costs really and we only get it once a week . I dont know of anyone that is getting epo that often , if you need more epo they should just increase the one dose.

[Brightsky69]

Wow... 3 times a week? My dialysis use to monitor my hemoglobin closely and adjust the epo accordingly.

[Rerun]

They only take labs twice a month.... so if your hemoglobin is a little low they shove the EPO to you and oopps the next blood labs show it is too high.  It is such a bunch of bull......

Can you get a new nephrologist?

[greg10]

They only take labs twice a month.... so if your hemoglobin is a little low they shove the EPO to you and oopps the next blood labs show it is too high.  It is such a bunch of bull......

Can you get a new nephrologist?

I know this is more difficult if you are not doing home hemodialysis, but you can measure hemoglobin levels using a point-of-care device, and determine if you need to do epo injections:
http://ihatedialysis.com/forum/index.php?topic=20798.msg346179#msg346179

The optimal testing is somewhere between 4 to 8 times a month.  There are many factors that may skew the result, the main one is that your hydration level will determine the HGb level, often if are carrying excess fluid, your HGb number will be on the low side.

Even if you are at home and don't want to get a point of care device, you can spin down any small amount of blood sample using the disposable syringe sheath and get an approximate hematocrit number, multiply that by 3 to get the approximate HGb number.  If there is a demand, I will post the procedure.

[needlephobic]

They only take labs twice a month.... so if your hemoglobin is a little low they shove the EPO to you and oopps the next blood labs show it is too high.  It is such a bunch of bull......

Can you get a new nephrologist?

Yes they do labs twice a month. My hemoglobin runs around 10 to 11 give or take. I never had to take epo it is like now everytime I go in they want to give me epo + Iron and sometimes vit D I don't understand the lab report card I get says my hemoglobin is in the right range my Iron is in the right range so I don't get it nobody will explain theses numbers to me. I just get told your numbers are good. The epo has given me headaches joint pain and rash and high blood pressure which I never had before they started giving me epo. I do have a heart prob The neph knows about it but acts stupid when I told him. It is starting to scare me where I don't even want to go in . I don't feel safe there anymore and i am at wits in. I am working on getting away up to the city so I can get another opinion from another neph    

[KICKSTART]

Please try and find another unit ...like yesterday

[Chris]

I always hated those lab reports from dialysis. AA smiley face never told me anything, but a number can give way more information with knowledge.
 
Hopefully you can ge a new and better nephrologist.

[Ang]

You are getting Epo 3 times a week    Over here we dont have an issue with costs really and we only get it once a week . I dont know of anyone that is getting epo that often , if you need more epo they should just increase the one dose.

10,000 units twice a week for the last however long(

[RichardMEL]

Remember folks Aranesp and EPO are two different products that do the same thing and you can't equate the doses. EPO is a different kettle of fish in that regard.

[Desert Dancer]

  If there is a demand, I will post the procedure.

greg10, I would really be interested in the procedure; I'm going to discuss this with my neph next month and see if she'll approve a point-of-care device. I'm really not happy with them only taking labs once per month and would like to manage my Epo a little more closely than that.

[greg10]

  If there is a demand, I will post the procedure.

greg10, I would really be interested in the procedure; I'm going to discuss this with my neph next month and see if she'll approve a point-of-care device. I'm really not happy with them only taking labs once per month and would like to manage my Epo a little more closely than that.

Hi DD,  I will post the procedure in the home dialysis section by the end of the day.
Basically all you need is a centrifuge which is supplied with most home dialysis program and a small plastic adapter for the syringe sheath.  The syringe sheath is just any disposable plastic sheath that normally covers the needle of a disposable syringe.  You would need a digital camera and a computer to download the picture.  It is more accurate to make the measurement with a digital picture because the amount of blood is small (about 0.2 to 0.3ml).  The digital on-screen ruler is just a free program that pops up a measuring ruler on screen so that you can read the amount of spun down red blood cell as a ratio of total blood volume (the definition of hematocrit).

[KICKSTART]

Remember folks Aranesp and EPO are two different products that do the same thing and you can't equate the doses. EPO is a different kettle of fish in that regard.

Phew thank goodness for that ! I had visions of these poor folks walking across the ceiling  Isnt it funny we get Aranesp but everyone refers to it as 'epo day'

[grannysgirl]

Wow! I love this website because it makes you realize that your unit is not as bad as you think. I had a neph who was absolutely horrible. The unit was terrible and so was the hired help. I discovered that it was not difficult at all to change units and doctors. My only difficulty was to make sure that the new neph was not a part of the group that I was trying to leave. I drive an extra 20mins each way for better care. My new neph will stop and discuss any issues that I may be having. I have also involved my PCP. As a patient I wish to be included in my treatment plan. This means that I can either accept or decline what they have planned for me. I feel that it is my body and my life and I should have some say.  I do have to be careful so that medical folks feelings are not stepped on. I compare this experience to that of being a diabetic. Everyone tells you what you can and cannot eat even though the guidelines have changed.

[needlephobic]

Wow! I love this website because it makes you realize that your unit is not as bad as you think. I had a neph who was absolutely horrible. The unit was terrible and so was the hired help. I discovered that it was not difficult at all to change units and doctors. My only difficulty was to make sure that the new neph was not a part of the group that I was trying to leave. I drive an extra 20mins each way for better care. My new neph will stop and discuss any issues that I may be having. I have also involved my PCP. As a patient I wish to be included in my treatment plan. This means that I can either accept or decline what they have planned for me. I feel that it is my body and my life and I should have some say.  I do have to be careful so that medical folks feelings are not stepped on. I compare this experience to that of being a diabetic. Everyone tells you what you can and cannot eat even though the guidelines have changed.

Yes Yes I agree But to have anything to do with treatments at my center is as easy as talking to a brick wall. they don't listen until something bad happens and it scares me. I had a sever reaction to epo and told them about it.  my Neph told me there is no other kind of drug which is a lie grrrrrrrrrr. Supposed to go in tomorrow and i really don't want to. It will be another night of losing sleep. 

[rocker]

To clear up one thing with the bundling...

You probably have been getting Epo all along.  Centers typically would give it through the lines during dialysis.  You would not necessarily have known.

However, Epogen is much more effective when injected.  The necessary dose is much smaller.  When centers were getting "cost plus" for Epo, it was more profitable to give the larger dose through the lines and take the extra profit each unit gave them.  Now that Epo is an expense and not a profit-maker, it makes more sense to give injections and use less.

- rocker

[needlephobic]

They never gave me epo I ask what they are giving me. They seem to just started giving it out. Everybody gets it. They gave me mine in my line and I had a reaction to it and I told them I don't want it. Neph didn't like that said I need it when my report card says different so somebody is lieing ask to compare my report card to what was in my chart well haven't seen it yet so you tell me. 

[tyefly]

here's  the deal....if you dont want EPO   then tell them that you dont want it.... they cant give you something that you dont want.....  if you have low blood counts and dont want EPO  then its on you .... I dont know of anything else but maybe there is something......   If EPO doesnt work or you have a reaction with it... then maybe if your blood count gets too low they could go back to the old way of transfusions....but then that hurts the transplant dept....if you are on the list.....
  its your body and your life.... but be sure you are doing things that are good for you .....

[needlephobic]

here's  the deal....if you dont want EPO   then tell them that you dont want it.... they cant give you something that you dont want.....  if you have low blood counts and dont want EPO  then its on you .... I dont know of anything else but maybe there is something......   If EPO doesnt work or you have a reaction with it... then maybe if your blood count gets too low they could go back to the old way of transfusions....but then that hurts the transplant dept....if you are on the list.....
  its your body and your life.... but be sure you are doing things that are good for you .....

Why give me epo when my lab reports say my blood count in the normal range I don't get it

[dyann]

Someone said they dont know of anyone who takes epo 3 times a week well I take it 3 times aweek 20,000 3 xs aweek  I also do 1000mg iron Cuz I seem to burn it upso fast.

[greg10]

  If there is a demand, I will post the procedure.

greg10, I would really be interested in the procedure; I'm going to discuss this with my neph next month and see if she'll approve a point-of-care device. I'm really not happy with them only taking labs once per month and would like to manage my Epo a little more closely than that.

This procedure is now documented here:
http://ihatedialysis.com/forum/index.php?topic=21785.msg359325#msg359325

[tyefly]

  Thx for the procedure.....     I am going to get this going....

     

[Desert Dancer]

This procedure is now documented here:
http://ihatedialysis.com/forum/index.php?topic=21785.msg359325#msg359325

Thanks, greg10!

[RedHairedGirl]

My advice would be to seek another neph immediately. You have the right to be involved in your health care plan and you have the right to refuse any treatment you do not want. Try to avoid a neph who belongs to a group..they tend to suck, I have been there. The neph there do not like to step on another doctors toes so they put that first instead of helping the patient. Seek an independent neph who will listen to you, who does not just put you in a box and treat you like every other renal patient.

When at dialysis watch everything they do when they approach your machine and question what they are doing and or about to inject into the lines.  You have the right to refuse and if they give you a hassle about it, find another center. There are three forms of EPO that I know of. One is Epogen, one is Procit, and one is Aranesp. All do the same thing, replacing the Epogen that your kidneys no longer make, however they are all chemically different. Some require a lower dose to work, some a higher dose and it all depends on how your body responds.

Your hemoglobin should be kept where you feel most comfortable. Too low you become seriously anemic and suffer symptoms, such as burning muscles, fatigue, a pounding heart and always feeling cold.  Some feel ok around 10.0 or so but it is recommended to hold patients at a 12.0 For me I do not do well and become symptomactic below 13.0.

You will do so much better if you can find a neph who listens to you, as you know your body far better than any doctor ever will. Someone who will work with you, not against you.

Take care,
RedHairedGirl