Feeling light headed please read on

[stevec]

Hi people,

My name is Steve and I thought i would just drop you note so you can watch out for a potential life threatening problem.
I have been on dialysis for 2 years progressing from PD to home hemo and dialyse 3 hours per day every day. Just before Christmas 2011 i had to walk to my foster children's school to pick them up a distance perhaps of 400 yds. it took me 3 hours nearly to walk there and back and the feeling of unwell and light headedness was awful.
anyway to cut a long story short , instead of keeping my eye on monthly bloods i made the assumption (the mother of all ****-ups) that all was well. What i did not know my Hb level had dropped to 6.1 and to say i felt and 3 weeks later still do feel like sh1t. Insomnia headaches running to the loo 9-10 times a day...cant even walk to the kitchen to make a cuppa. So now have daily visits to give iron and epo and 1 gram of alfacalcidol daily. also my head has been so screwed up i completely knackered a buttonhole.
So just a warning guys watch your Hb it can really screw you up.

p.s after 3 weeks my Hb has come up to 6.4...i think its gonna be a long road back oh and they remove you from the transplant list whilst you have low Hb and poor hemocrit.

rgds

Steve

[Desert Dancer]

anyway to cut a long story short , instead of keeping my eye on monthly bloods i made the assumption (the mother of all ****-ups) that all was well. What i did not know my Hb level had dropped to 6.1 and to say i felt and 3 weeks later still do feel

Why in the hell wasn't your clinic staying on top of your hemoglobin? They have very strict guidelines in regard to hemoglobin and can, in fact, lose a percentage of their compensation from Medicare if their patients' hemoglobin levels are not kept between 10 and 11. (It was previously 10-12.) My god, I have to FIGHT with my clinic to NOT take Epogen; they're forever trying to make me take it the instant I dip below 11.5. I invested in my own hemoglobin meter for precisely this reason.

This is NOT your fault. This is your clinic not doing its job. Honestly, maybe you should think about looking for a more competent clinic.

[amanda100wilson]

Desert Dancer I agree with you.  It shouldn't be a case of out of sight, out of mind just because someone is a home patient.

[stevec]

Thanks for your comments guys and i do agree it seems once you are at home you ain't a problem....well it just goes to show does it not ??  and at the moment the cries of we feel we let you down ring clearer than mourning bells. The hospital cant do enough at the mo , but wait till ll is hunky dory and statistic status quo will be achieved and we can be forgot about lol.

[Desert Dancer]

Desert Dancer I agree with you.  It shouldn't be a case of out of sight, out of mind just because someone is a home patient.

That's why I think he needs to find another clinic. ALL clinics are required to draw monthly labs. ALL clinics are required to monitor hemoglobin levels. That means THIS clinic simply wasn't doing their job. "Oh, we feel we let you down"? NO. More like, "Your incompetence could have killed me." Sorry, but a hemoglobin level of 6.1???!!!! That says to me someone was just taking the lab reports and filing them away without even looking at them.

Steve, I'm sorry you've had this experience as a home patient and I hope you're back on your feet and feeling better soon. Just goes to prove - again - you can't trust anyone to protect your health except yourself.

[stevec]

Thank you xx

[lmunchkin]

Steve, I'm sorry you've had this experience as a home patient and I hope you're back on your feet and feeling better soon. Just goes to prove - again - you can't trust anyone to protect your health except yourself.
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Not going to argue that point for sure!!!!

Steve, if your Hgb is that low, God only knows what your Iron levels are! This is Totally rediculous!!

lmunchkin