IV IRON

[Ziggydoodah]

I had an appointment with my consultant today. I had my fistula fitted last week and they are really pleased with it. Really strong "thrill". I felt great today. Then they decided to give me an iron infusion. I thought great as feeling a bit tired has been my only symptom lately. My god I was not expecting this. I actually feel as if they have drugged me 😳...i came home and slept for 4 hours. Got up to go to the toilet and i feel as if I have no energy. My husband had to undress me as I couldn't even find the energy to get my jeans off. I ended up googlng iv iron side effects and lots of people say they have felt awful for weeks after an infusion. I wasn't expecting to feel like the duracell bunny but I certainly never thought I would feel like this. I have gone from feing great to not being able to do anything and zero motivation 😭😭😭. Is this normal?

[KidneyCoach NKF Ambassador]

Gosh I'm sorry you're having these side effects. I've been getting these infusions up to twice weekly for over 20 years. My issues are upset tummy, diarrhea but nothing else. I'm taking venopher. Your iron may be different. Please call the nurse who administered it asap and tell her about this. Could be delayed reaction to surgery, could be your stage 5 symptoms are finally catching up with you. It could be many things so be sure to communicate with your nephrology team. Blessings

[Ziggydoodah in reply to KidneyCoach]

Thanks for replying KidneyCoach. Still feeling tired today but nothing as bad as yesterday. I spoke to the Practice nurse today and she said to give it a few more days. I didnt realise they could be administered twice weekly for some people. Do you find they make a difference with your energy levels? Wishing you all the best.

[KidneyCoach NKF Ambassador in reply to Ziggydoodah]

yes, since the hemoglobin and iron both need each other to maintain adequate levels. When both are at good levels I feel great. Give it time. Blessings

[Ziggydoodah in reply to KidneyCoach]

Thats great to hear!! Thanks for getting back to me.

[RonZone]

Hey, just for my own info. What information did they use to know you needed an iron infusion? Is there something on a lab that they spotted when they were putting in your fistula, or tests you had done after the fistula surgery? Just curious.

[Ziggydoodah]

The only symptom I have is feeling tired. But as im a chef and on my feet all day, it isn't just down to my kidneys. I see my Renal team every 2 weeks now and they kept saying it was nearly time to give me some iron shots. Im not sure if this is standard procedure before dialysis or not. I looked back at my last 2 haemoglobin results and it was 103 then 107 before I got my infusion. In the UK the "normal range" is 115-180. So i was definitely low in reserves. I have to say I felt awful after it. After googling to see if anyone else experienced the same symptoms, I discovered a lot of people who have various issues even weeks afyer an infusion but yet it does not seem to be acknowledged by doctors etc. However have to say the feeling of fatigue is slow going and I feel as if my stamina is increasing again. It seems it can take up to 2 weeks to feel slightly better. Again it is reading about people who are actually experiencing these things that are the biggest help. Hope this is of some help and just ask if you want to know anything else