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Severe Anaemia in HF

irishwife93 profile image
15 Replies

Hi everyone

Long post incoming!

My husband recently had a HA (LVAD blockage) at 39 years old and now has HF. His EF 35% was when first admitted to hospital, now up to 45% 10 weeks later.

Severe anaemia seems to have played a huge part in my husbands heart problems and is still an issue for him. When he presented in hospital the doctors noted his haemoglobin was 70g/dL which is dangerously low. Prior to the HA he had recently had a large bleed from a stomach ulcer. At the time he was admitted to hospital for a week to investigate the ulcer, however nothing was done about his blood loss and he was completely unaware that his anaemia was so severe. The nurses believe the prolonged stress on his heart from low circulating oxygen levels would have triggered the HA. They could identify no other contributing factors to the HA i.e high cholesterol, high bp, congenital cause. After having the HA he received two blood transfusions which boosted the haemoglobin levels up to 98g/dL.

His recovery has been going well until recently when he started feeling worse. Over the past few days he’s had no energy to exercise and is struggling to potter around the house. His heart failure nurse ran blood tests a couple of weeks ago. We got the results last Thursday, apparently his iron levels are dangerously low and he needs an IV infusion of iron ASAP. He hasn’t received an appointment yet and I’m incredibly worried he will have another HA while he waits as he must be incredibly anaemic.

He has been taking iron supplements with vitamin C since he got out of hospital but they seem to be making no difference. He eats meat once a day, red meat about 2-3 times a week and lots of fruit and vegetables. Surely his levels should have come up again by now, after two blood transfusions and 10 weeks of recovery time? He hasn’t had any new gastrointestinal bleeding since the stomach ulcer.

Has anyone else in this forum struggled with anaemia after HF and found it’s worsened their symptoms? Any tips on how to treat it or improve it? Could it be a side effect of his pills? He is taking Ramipril, Bisoprolol, Arvostatin, Dapaglioflozin, Lanzaprazole, Aspirin and Eplerenone. Thanks in advance for any advice!

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15 Replies
10gingercats profile image
10gingercats

Maybe strongly suggest he sees a specialist haemotologist if he has not seen one already. There are different types of anaemia.I was told my liver reserve of blood was low and so I had an iron infusion. I suggest your husband need further investigations and fairly urgently. .

irishwife93 profile image
irishwife93 in reply to 10gingercats

Thank you for the advice! I agree he needs urgent investigation, maybe we will try the private route as waiting on NHS referrals to come through to gastro for months now

Hello :-)

My iron levels are low since my Bypasses but not as low as your Husbands

I can understand why this would worry you and he needs that infusion so get on that phone and call your Doctor ask them to chase it up tell them your worries and hopefully they will have him in soon

It is an easy procedure does not take long so fingers crossed he gets an appointment quick

Let us know how he gets on :-) x

irishwife93 profile image
irishwife93 in reply to

Thank you for your reply! I will contact the HF team first thing on Monday to try and speed things along. I will update you once he’s had the infusion! Out of interest, how soon after the procedure did you feel a difference in energy levels? If you can remember!

in reply to irishwife93

Hello :-)

Sometimes you have to keep pushing to get things done

I phone and keep phoning when I get a situation like this till they get fed up of me as it is my body so keep pushing

I suppose it is hard to say as after the op I was going to feel weak but I just never got my energy back and they do keep a close eye on my iron levels now to make sure they are not going any lower and infusion has been mentioned if they do and I would certainly have it if needed

I know as he needs one so much maybe everything you try may not help much but they say drink orange juice before a meal that helps you to absorb your iron from the food you eat

I look forward to hearing how you get on and even if you are not that kind of person on this one be as assertive as you can :-) x

Hollyxyz13 profile image
Hollyxyz13

Hello.

we are in a similar position.my husband has a heart attack last year with anaemia being a contributory factor.the gp was incredibly slow to refer to haematology but we just kept pushing

.he now has his bloods taken by the haematology dept and the results back the same day so that he usually has a transfusion within 48hrs.still ongoing tests as to cause of anaemia but regular meetings with haematology consultant.

when his iron is low and initially it was down to 4 he is tired ,breathless and aching joints.we find that he is symptomatic if it is less than 40.

I would say get back onto gp and heart failure team and just keep pushing.

Good luck.

irishwife93 profile image
irishwife93 in reply to Hollyxyz13

That sounds like a much quicker route so thank you for letting me know, my husband had his blood tests two weeks ago and still hasn’t had the iron infusion and is feeling worse every day! Do you know what they have tested for so far with regards the cause of anaemia?

Hollyxyz13 profile image
Hollyxyz13 in reply to irishwife93

Hi. My husband certainly has stopped storing iron this started a few years ago so he had an iron transfusion every six months.

when he has has heart attack he was needing a blood transfusion fortnightly and an iron transfusion every four weeks.it seems he doesn't store iron regardless of diet or iron tablets I might as well give him smarties!.so although it was a long standing problem the HA speeded things up.they also think it might be because he is of Irish descent!They think he is losing blood but dont know where and he has had numerous scopes as the first thought was bowel.but this didn't show anything.

they have also considered medication.he had a small improvement when the clopidogrel was stopped but then it made no difference.stopping the aspirin has made no difference.

They also thought that the HA may have triggered an auto immune response.

The blood tests so far show that he is producing red blood cells but is then breaking them down faster than you or I.

At the moment his hb is holding and we are back next week for further blood s.

Hope this helps and if I can help any further just let me know.lots of good luck.i know it is all a nightmare.

irishwife93 profile image
irishwife93 in reply to Hollyxyz13

This is really helpful, it’s possible my husband could have the same problem with breaking down red blood cells! I must suggest this to the doctors. Is your husband taking lazaprazole or omeprazole? Apparently these meds which protect the stomach inhibit iron absorption. Because of my husbands history with ulcers he is taking these twice a day but I feel they’re making his anaemia worse.

It’s an absolute nightmare as you feel you can’t help your loved one and are relying on a disorganised and slow health service to do something. I feel bad for complaining but until my husband got ill I had no idea what a battle it would be to get care when it’s needed.

As an aside, we’ve started an iron spray supplement on Friday as apparently it’s absorbed through the mouth which bypasses the issues with absorption from the gut. I’m not sure if this would help your husband as it sounds like he can’t store the iron for very long, but at least it could allow him to absorb a decent amount in between transfusions? If he gets a diagnosis please let me know. I wish you both the best of luck with getting to the bottom of what is going on!

Hollyxyz13 profile image
Hollyxyz13 in reply to irishwife93

Hello.the iron spray sounds a good idea no one has mentioned this .my husband does take omeprazole for ulcers so that might be a line I can pursue.

Let me know how you get on and I will do likewise.lots of good luck.

irishwife93 profile image
irishwife93 in reply to Hollyxyz13

The spray is called Better You, I purchased from Boots! It comes in two doses - 10mg and 5mg. We’ve got the 10mg and it was £15 for a months worth of sprays which is pricey but we were desperate. I couldn’t find any evidence that it would interfere with my husbands medication, but I will be showing the spray to my husbands nurse when we finally see her.

Becksagogo profile image
Becksagogo

HelloI had an iron infusion on Friday.. A cannula was fitted and the iron put through via a "drip" which took 30 minutes. I had to sit for half an hour afterwards before I was released. I have very low blood pressure so the half hour turned in to an hour. I was given tea and a doughnut 🍩 as both help to bring the blood pressure up , so a pleasant experience.

I'm afraid I still couldn't run a marathon afterwards but I do feel better for it.

irishwife93 profile image
irishwife93 in reply to Becksagogo

It is very reassuring to hear of your positive experience and I’m glad to hear you are feeling better afterwards!

Hi, Much of your OP, I could have written similarly, whilst I've not had a HA like your husband, I do have HF and had multiple valve replacements.

I was diagnosed with Anaemia 4 years ago and until recently had been on iron tablets, when I was given two iron infusions whilst in hospital.

I have Haemolytic Anaemia, which is caused by my Mechanical Aortic and Mitral Valves destroying the red blood cells too early in their life cycle. As such I'm forever low on haemoglobin, iron treatment or not. I'm also prescribed daily Folic Acid to as a supplement to increase haemoglobin.

Bleeds can be dangerous, two hospitalization since April saw my Haemoglobin dip to 59g/dL, with my last count sitting at 114g/dL. I have since had a procedure called Angiodysplasia, in my Colon, which will hopefully help increase the haemoglobin, but, it won't cure the anaemia.

It may be worthwhile asking the question on Haemolytic Anaemia, it can be caused by a number of heart related issues, but, ideally it's not the case.

Both of you take care.

Heed

irishwife93 profile image
irishwife93 in reply to

Thank you for your reply, I will certainly suggest this to the doctors! I’m glad to hear your latest count improved, although it’s still low it’s a lot better than 59! You take care too 😊

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