Haemodialysis – Aranesp, Haemoglobin and Iron

Thursday 2014-04-03

My aranesp is a convoluted matter.

Last year in September I went to the emergency and diagnosed as End of Stage Kidney Failure with Haemoglobin (HG) as low as 70g/L. During hospitalisation I received 4 units of blood transfusion and a catheter operation. 10 days later on Monday, 16 Sep 2013 when I checked out of the hospital, my HG was 126 and aranesp was prescribed for 100mcg p/week.

Before the 1^st dose of aranesp was due, I received my last unit of blood transfusion and my HG grew to 141, the 1^st dose was thus postponed.

A few days later my HG dropped to 112, doctor T was consulted and aranesp dose reduced to 40mcg p/w and my 1^st dose was finally given on Thursday, 26 Sep 2013, 10 days after I was out of the hospital and on the same day I also received the 2^nd dose of Iron and 1^st Iron on the previous dialysis.

Then I started moving about different satellite units for dialysis. As a vagrant patient I brought my aranesp along wherever and whenever it was due and I would remind the nurses to administer them to me. The problem with moving is that the drug order may often received in delayed time by the nurses, then there would be many phone calls between nurses, secretaries and doctors chasing drug orders, eventually I would get the medicine if not on the day, would be on following days.

There is a spoken or none spoken rule that renal professionals like to keep renal patients’ haemoglobin less than 120. When the level is above that the nurses would like to withhold aranesp or consult a doctor if one is available. When HG is low, in my case, because I move around no one really takes notice.

I had my aranesp of 40mcg p/w for a month in 4 different places, none of which was a straight forward thing. When the 5^th time due on Thursday, 24 Oct 2013 I landed on yet another unfamiliar centre S, my HG was 127 at the time, a doctor’s opinion was required and given as 40mcg p/month by the same doctor T who prescribed 40 p/w in the past when my HG was 112.

One month later I was sent to another centre P, the nurses refused to give aranesp without doctor’s order which for reasons that I had been to so many places nobody knew what was happening to me and my drug history. Nurse M said according to my own record I could have the drug, and I could inject it myself, just not by them, because legally they can’t.

Luckily the following Monday I had a doctor’s appointment where a drug chart was written which I brought to centre P the next day. But they still couldn’t give it to me. The nurses were busy working among themselves and other centres I had been to and tried to sort things out, after a lot of kerfuffle they still couldn’t give me the drug. Then I learned they need an Iron study in order to give me aranesp. I told them I brought a test with me which was done about a month ago and along with my other records if that could be of any use. The nurse was relieved and happy. One senior nurse said, “Remember always ask the patient.” Finally the aranesp was given.

Another month past, on Tuesday, 17^th Dec I received another 40mcg. Because I moved around, I missed out all scheduled tests enjoyed by permanent patients, my test orders were mostly the result of my clinic visits, by then I learned when would be good time to have my tests done. The following Monday, 23^rd Dec I had a doctor’s appointment, I arranged to have the test done Thursday 19^th Dec, my HG dropped to 101g/L after 2 months of 40mcg p/m.

I asked doctor L to review my aranesp which she did and prescribed 40mcg p/fortnight which is still valid today. Since then I had a few tests done, in all of which my HG were under 120, until 17^th March, my HG finally reached 123.

Iron and aranesp work hand in hand. My Iron infusion last September lasted me till January this year when I was moved to do dialysis in centre M where the iron protocol was different from other centres I’d been to, according to a test done on 19^th Dec my iron saturation was 49% and the protocol in M prescribed Iron for 100mg p/w while the other places either prescribe nil or every month for the same result.

 Iron of 100mg was given to me on 11^th Jan. 100mg p/w was prescribed for me and the order would follow me wherever I went, when my initial Iron order from the beginning was to follow protocol and decision was made locally, the doctor may not realise that there were so many different protocols when a patient is moving about town, this time order was specifically 100mg p/w.

Before the 2^nd Iron was due I had an unscheduled test (benefit or disadvantage being dialysing about town) where Iron saturation was 63%, Iron was withheld under any protocol. Another month later, Wednesday, 19^th Feb another chanced test, this time iron saturation dropped down to 27%, the order of 100mg p/w was back in.

The past yoyo experience tells me that 100mg p/w is a bit much for me. As now and always it is I who remind the nurses about my Iron and aranesp, I simply don’t remind them that often, for the moment I only remind them once every fortnight. It’s about 2 months now since I’ve done this which works quite well with my fortnightly 40mcg aranesp. My Haemoglobin is gradually coming into line my last test showed it was 123g/L, until the next test and some smart guy come along and mess it all up again.