EPO increase

[Yvonne]

John's just had a letter from the hospital saying he must increase his EPO injections from having one a week to increase to two.
He normally injects himself every Monday morning. The question is does he now inject two together or should he do the other one later on in the week?   Yvonne

[kellyt]

My GUESS would be later in the week and in the opposite arm/leg or where ever he gets his shot normally.

Please check with his doctor though.

I hope the 2nd EPO shot gives him more energy.  That's what I took EPO for anyway.  I was pooped all the time.

Good luck.

[rookiegirl]

When I was on PD my EPO shots fluctuate depends on my hemoglobin levels.  When I did take the shots twice a week, I spread it for Mon./Thurs. and alternated the injection sites (L arm, R arm, L leg, R leg).

[Yvonne]

Thanks for the answer John always injects into his belly, so he will have to divide his belly into 2 
That was the way the nurse first showed him what to do. Maybe next time he could try an arm or a leg.

[peleroja]

When I was going in for my Epo injections, they told me there has to be two days in between injections.  How about Monday and Thursday?

[Rerun]

You need to ask what his Hematocrit is.  Normal for a dialysis patient is 33 to 36.  But the thicker your blood the more likely you are to clot.  I like to run on the lower end around 33. 

Before epogen they would let us get down to 19 before a blood transfusion, so don't let them scare you by telling you he is too low.  They also get kick backs from the drug company for using lots of Epogen....  Watch yourself!

   

[Yvonne]

Thanks rerun  Hematocrit ?  is that the same as Hb John's Hb is 108.0  and they said that was a bit low and that is why they have increased his EPO YVonne

[Zach]

Thanks rerun  Hematocrit ?  is that the same as Hb John's Hb is 108.0  and they said that was a bit low and that is why they have increased his EPO YVonne

There are two values that are used:

Hemoglobin--(Hb or Hgb) is measured in g/dL. 
Hematocrit--(Ht or HCT) and is a % Measurement--(Hgb x 3).

From the National Kidney Foundation"
http://www.kidney.org/professionals/kdoqi/guidelines_updates/doqiupan_ii.html

Target Hemoglobin/Hematocrit for Epoetin Therapy
The target range for hemoglobin (hematocrit) should be Hgb 11 g/dL (33%) to Hgb 12 g/dL (36%).

[Yvonne]

You just can't seem to win at this game. Now John has increased his EPO he can't seem to sleep, says he is awake all night. I'm normally the one who can't sleep, my mind is working too much, a friend of mine told me to try having a cup of Camomile tea before going to bed and I must say it does work.  I was wondering if it is alright for John to take, as it is herbal I would think it will be fine!

[TiffanyJean]

The only problem I can see with the tea, is if he has to watch his phosphorus, most teas are high in phosphorus. If you don't want yet another RX, you might check with his doctor if he can take melatonin; its a great thing, Richie and I take it.

From Wiki: Use as a dietary supplement - The use of melatonin as a drug can entrain (synchronize) the circadian clock to environmental cycles and can have beneficial effects for treatment of certain forms of insomnia. Its therapeutic potential may be limited by its short biological half-life, poor bioavailability, and the fact that it has numerous non-specific actions.[70] In recent studies though, prolonged release melatonin has shown good results in treating insomnia in older adults.[71]   

We prefer to take melatonin over pills because in the morning you don't wake up with that groggy feeling that you get with other sleep aides.

Hope this helps!

Tiffany Jean

[Zach]

The only problem I can see with the tea, is if he has to watch his phosphorus, most teas are high in phosphorus.

Actually, that is incorrect.

Perhaps you're thinking of high potassium in powdered tea mixes.

Most brewed teas have little or no phosphorus.
http://www.nal.usda.gov/fnic/foodcomp/search/

Tea, brewed, tap water : 6 oz:
Phosphorus, P mg 2
Potassium, K mg 66

Tea, herb, chamomile, brewed 6 oz:
Phosphorus, P mg 0
Potassium, K mg 16

Instant Tea (powder) can be very high in potassium.

Tea, instant, sweetened with sugar, lemon-flavored, without added ascorbic acid, powder, 8 oz.:
Phosphorus, P mg 4
Potassium, K mg 308

Tea, instant, sweetened with sugar, lemon-flavored, with added ascorbic acid, powder, 8 oz.:
Phosphorus, P mg 25
Potassium, K mg 395

If they also add phosphoric acid, then you have a phosphorus problem.

When possible, processed foods and drinks should be avoided, because they have all sorts of added chemicals.

[Rerun]

Thank you Zach!

                   

[TiffanyJean]

Thanks for that Zach! 

One of our dietitians at one of the clinics told us that teas were high in phosphorus; but Richie really likes tea... but I guess we will need to start checking more than one or two sources. Even though its been a year were are still adjusting to the whole renal diet way of thinking. 

tiffany jean

[Yvonne]

  Zach thanks for that info, I now know John can share my chamomile tea, you are so knowlegable Yvonne

[Yvonne]

We had a phone call from the renal unit to say John must have an iron infusion once a week to help the EPO work. He went yesterday to the unit for his 1st one and has another in 2 weeks time. Funny because he has been feeling fine lately but last night after the injection he feel ill with a really bad headache.

[paris]

Yvonne, I have had iron infusions and one of the side effects was headaches.   I hope John starts feeling better. 

[jbeany]

Make sure to tell them that he had the reaction.  They can give him a dose of IV Benedryl with the next dose - it might help with the headache, too.

[Yvonne]

John was OK with the iron shot this week, but she had such a job to find a vein in his left arm she had 3 goes at it.  Then when John went to Renal clinic last Friday they could not find the vein again so she took it from his left hand. His creatinine has gone up to 425 this month?