Kidney failure
Posted , 3 users are following.
Hi . I am in stage 4 kidney failure with a gfr of 26 . I have been extremely tired for a while now ! I work every morning , but come home and sleep for 2/3 hours until my youngest gets home from school ! And I'm still shattered , and not quite " switched on " if that makes sense ? The last few days I have had a " metallic " taste in my mouth , and today I woke up with a black tongue !! Which has faded over the day . Feeling pretty nauseous most of the time . Does anybody relate to this ? I'm seeing my consultant on November 14th , after I have had an iron infusion . Thanks for reading . Any advice or knowledge would be greatly appreciated .
0 likes, 5 replies
LynQ amylou68
Posted
Hi Amylou,
You may probably be anaemic. Do you know your Haemoglobin count? When my GFR was 26% I was tired, too. Your kidneys are responsible to regulating the absorption of vitamins and minerals in your body and when your function gets lower, you sometimes don't absorb iron, Vitamin B12 and folic acid very well. You need these to make red blood cells. Also your kidneys make a hormone called erithropoeitin which triggers your bone marrow to make red blood cells, so even if you have enough iron, your HB drops and you feel tired and lethargic and sometimes breathless and forget things. My consultant arranged for me to have intravenous iron, Vitamin B12 injections every 3 months and to take daily folic acid. I also have to inject EPO which is the synthetic form of erithropoeitin.. At first it might be enough just to improve your iron store (ferritin levels)- this depends on whether you are making enough of the hormone. It sound scary but it is not. You soon get used to injecting EPO- I have to do it once a week and they will teach you how to do it. It makes you feel an awful lot better. EPO is what they give to athletes and cyclists illegally to improve their performance! Try not to worry and good luck!
amylou68 LynQ
Posted
Thank you 😊 it's good to hear of other people's experiences ! Its reassuring! I haven't really spoken to anybody in a similar situation .
marj01201 amylou68
Posted
AmyLou,
I had severe anemia (hemoglobin 5.6) when I was in stage IIIA with creatinine and eGFR much higher than yours is now. (I am now in stage v so my anemia is a little worse.)
I was extremely tired when I was not yet under treatment. It was difficult to get out of bed just to use the restroom. I was extremely light headed and short winded. I was also cold all the time, even in the summer with temperatures in the 90s.
My nephrologist started me on EPO (Procrit) injections. They really helped a lot. I went to his office twice a month for labs. An injection was then administered if my hemoglobin was below 10.0. At first I got an injection every two weeks. After 5-6 months I only needed the injections once a month.
It sounds like you're experiencing much of what I've experienced. So it is good that you will be in for an appointment in November. There are treatment that will help you🐶
Marj
amylou68 marj01201
Posted
Thanks Marj 😀
Atleast I know I'm normal ! Sort of !! I kept thinking I was just lazy !! My oldest 2 children have left home , but my youngest is only 12 and autistic ! I seem to spend all my time trying to have enough strength to deal with him ! It's good to know there are some things that can help .
marj01201 amylou68
Posted
AmyLou,
I'm a special education university faculty member who prepares teachers to work with children with autism. I taught childrn with autism for 12 years.
You're AMAZING to be working with your child while dealing with anemia at this level! I really can't even imagine how you're doing it. I really hope you'll have an effective anemia treatment plan in place very soon.
Marj