Anemia and blood transfusion

[KaliJones]

Hi, I’ve been suffering for ages with anemia, now at the point I’m signed off work. I can hardly walk, spend most of my time in bed, and I’m short of breath constantly. Finally my GP has referred me to my hospital for a blood transfusion and I’m excited to feel more normal.

What were your experiences with this? Im excited but scared.

I'm having other tests done but being referred to a specialist for celiac disease. This has been going on for years back and forth so I’m really happy to have an end in sight!

What treatments have they already tried? What do they think is causing your anaemia?

I’ve been on iron tablets on and off since 2019. They’re now opting for blood transfusion because of how low iron levels are (I don’t know the exact numbers but my GP was worried.) They’re fairly certain it’s due to celiac disease, but I also have had very heavy periods.

I’ve only had it done once and I did feel loads better afterwards.

My daughter was also diagnosed with Coeliac disease after being found to be anaemic (she had no bowel symptoms). She was also very short of breath - she couldn’t walk more than 50 yards without stopping. She also had joint pains and her eye lashes came out.
She didn’t have a transfusion, just iron.
I know you wanted to know about the transfusion but after her anaemia was finally resolved she was a different person. Her eyelashes grew back, she could exercise and her mood lifted.
I highly recommend Coeliac UK and the various support groups on Facebook, especially Becky Excell.

Don’t you mean an iron infusion? They give you iron IV. Not blood. It’s amazing though. I have them regularly.

I’ve had one as an emergency and a couple more in conjunction with surgery.

The emergency one was after years of serious anaemia. One morning I literally couldn’t get up - my brain just couldn’t make my limbs do anything. Eventually I made it to the GP - he asked some questions, turned very pale (himself!), took a blood test and told me to go home very carefully. Later that afternoon, once he had the blood test results, he sent an ambulance to take me to hospital.

In the ward consultants from other departments were coming to gaze upon me. My blood levels (I forget the details) were so low they were asking why I wasn’t dead.

Anyway, yes, noticeable improvement after the transfusion - but I wasn’t properly better until diagnosis and surgery for the fibroids which were the cause of the anaemia.

No, op is correct. If you're severely anaemic they do a blood transfusion because it makes you better immediately whereas an iron infusion takes weeks to have an effect.

I’ve had over 70 blood transfusions, I always get freezing when i have them and take blankets and thick socks with me. The first made me feel a bit icky but I was looked after and understood why I was having one. It took me about 3 or 4 to finally have a bit of energy etc.!”

Op, what are you scared about specifically?

They have really robust processes to make sure you get the right blood and you will be monitored and looked after throughout.

It takes about 4 hours per unit of blood, so if it's a day admission probably a max of 2 units.

It's a long day and can be a bit boring if you don't bring stuff with you to do, but you should start to feel better while you receive the blood.

I had one a few years ago because I was also very anaemic. I think my HB levels were 36 which is very low! I had swollen ankles and my heart rate was quite high and I was breathless too.
I felt immediately better after my transfusion and couldn’t believe how well I felt and my ankles went down almost straight away too. They also gave me an iron infusion. Good luck!

I've had two transfusions, they made me feel a lot better immediately (though with the second one I still needed an iron infusion two weeks later as well as I was very anaemic). Can understand feeling scared, I felt quite anxious each time, its just a weird feeling, knowing that blood is being put into you, plus the irrational fear that they'll make a mistake (they checked and rechecked my identity so many times to make sure it matched up with the notes to ensure the right blood type was going to the right person). I felt more anxious about the iron infusion because that felt more wrong going in me, plus the fact that a nurse had to be in the room with me the whole time in case I had a reaction whereas with the blood transfusion they didn't need to.

Anaemia was my only symptom of coeliac disease (though it never got that bad with it - the anaemia that required transfusions was due to blood loss)

Iv had an iron infusion - It didnt make me feel any better

Hope yours in blood and hope you feel alot better

i've had 2 infusions in hospital but never had a transfusion...have you not been offered an infusion before now?

No I haven’t, I actually changed GP because this has been going on for about 4 years now, getting worse and worse. Got a (female) doctor who listened to me. All it took was a blood test.

Feeling reassured by a lot of these comments though, thank you!

When my ferritin was 3 and my haemoglobin was 68 I think, I had both a blood transfusion and iron infusion. After both, within a week, I felt 100 times better. Could get a saucepan out of a lowdown cupboard without sounding like I'd climbed a mountain. Ditto walking up stairs. The only downside of having a transfusion is you can ever give blood again. I'd always wanted to but never did and now never can.