Confused

[Barnboy]

Hi my husband has been getting really breathless he had a echo which said mild aortic stenosis diastolic dysfunction also heart failure with normal ejection 60 percent I have been googling as I'm worried and made myself worse he had a spirometry test they said that it's OK not lung related so I took it to mean it's heart related Also he's really anemic so now on iron tablets Can anyone explain all this to me as I'm temporary to go in Dr's and ask as it's making me ill his breathing is awful

[BeKind28-]

Hello

Having low iron can make you breathless or your breathing worse but I think the best thing would be to get a Doctors appointment let them decide if more tests need doing to see if anything has changed but by that do not worry as even if they had it is better to know so they can get him or give him the right treatment

However and I should take my own advice I have never once been on Google to look up something regarding health and come away feeling better it always says the worst scenario and it does not have our exact medical history but your Doctor does and so can diagnose if there is a problem

Others hopefully will reply who know more than I do but let us know how you get on x

[Barnboy in reply to BeKind28-]

thank you he’s had all the tests already and they have said heart failure with normal ejection then it said diastolic dysfunction but I need dr to tell me properly about it my husband is 75 and had high be for years but hasn’t been monitored just given his meds which they have had to change to get his blood pressure down

[BeKind28- in reply to Barnboy]

Hello

I sort of meant that maybe even though he has had all the tests that checking nothing has changed would be a good idea x

[Barnboy in reply to BeKind28-]

thank you drs don’t seem worried one dr snapped at me when I said I was worried he sent a tax saying diastolic dysfunction isn’t heart failure yet when my husband went to see another dr last week I asked the question he said it was we are getting really mixed messages

[BeKind28- in reply to Barnboy]

Hello

Have you tried phoning the BHF Nurses and talking to them they are very good and I am sure would give you the right advice you need x

Heart Helpline team on 0300 330 3311 Mon-Fri 9-5pm

[RufusScamp]

Google is not your friend here. There is more reliable information on the main BHF website. Heart failure is a dreadful term. It just means your heart is not as efficient as it could be. An EF of 60% is good. I was discharged when mine got to that level.

If the iron tablets don't help his breathlessness he does need to see his GP or a cardiologist.

[Barnboy in reply to RufusScamp]

Gp won’t send him to cardiologist I asked the echo said he needs a follow up in 12 month or if there are any changes

[Blearyeyed]

Yes, if Google is making you worry more don't Google.Unless you really know which sites and articles are more medically recommended for your or your husbands needs you can end up reading a lot of triggering information, scare stories or inaccurate or confusing facts.

Now you have found the BHF forum it would be good to keep posting and asking to hear both positive and negative experiences and some tips from people with the same issues as your husband.

You can also check through old posts for experiences by just putting things like , " Aortic Stenosis" or " ejection fraction" into the search bar at the top of the page.

It's also worth following the links at the right side of this post page , now you are reading it for past relevant posts , and looking up the British Heart Foundation website which has good quality , simple to follow advice.

From that link you could subscribe to the Heart Matters magazine which is helpful but also includes positive and inspiring stories about people having a great way of life and recovering from early obstacles , people whom are just like your husband.

You could also look for a local BHF face to face or video support group to join for your area to get local support and reassurance, both carers and hearties can attend them for help and advice.

What I will say , as others have done , is that part of the breathlessness and fatigue your husband is struggling with at the moment will be from his Anaemia , it's common with Iron deficiency.

If he's on Iron tablets it can help him to absorb more iron if he takes them after food with either food or drink that contains Vitamin C , or a non acidic Vitamin C supplement.

Increasing foods in his diet rich in Vitamin B 12 and Folic acid will also help him recover from Anaemia more speedily and help his breathlessness and fatigue too.

Drinking more fluids each day and with your meals will also help improve his recovery from a deficiency like Anaemia.

If the breathlessness is getting worse despite supplements they can give him a really easy iron infusion to help speed the process along.

Another positive is that your husbands Ejection fraction is right in the middle of the normal range for EF despite having heart failure which is what you are looking for and puts him in a good position in controlling his symptoms and reducing his risks and that's helped even more by having his test showing good lung capacity. This means that your husband will have a good prognosis as he moves forward especially if he makes lifestyle and diet changes that help with these conditions and gets the medication and support to help in his improvement.

Take care , Bee

[Barnboy in reply to Blearyeyed]

Hi I asked about iron injections dr said there’s not enough nurses to do them now so the tablets should be fine

[Blearyeyed in reply to Barnboy]

It could well be that your husbands Anaemia is causing him symptoms but his iron level is still at a range that trying iron supplements first would be ok for him. Everyone is different some people get symptoms earlier than others especially if they are still recovering with something else but in those cases an infusion or injection wouldn't necessarily be the better option.Believe me , as a person whom suffers from B12 and Folate Anaemias it can be surprising how quickly and oral supplement can work to reverse a person's symptoms. But. if after retesting your husband was still low or not responding they would sort out an infusion.

I do think it would be reassuring for you both and help you feel more confident moving forward if you found a local face to face or online local support group for heart health to join.

Have you got any family or friends that you can talk to for yourself to let them know how you are feeling and get more emotional and practical support?

[Lezzers]

Hi Barnboy

There are 2 types of heart failure:

systolic heart failure which is when the heart is stiff & isn't able to pump out the blood properly, so you have a reduced EF (ejection fraction) this HF is known as HFrEF.

Then you have diastolic heart failure which is when the heart isn't able to relax fully & therefore it cannot fill with blood properly. Because this isn't an ejection issue you have a preserved or normal EF, this is known as HFpEF. A normal EF ranges from 55 to 75. This HF is very much misunderstood, I think having a normal EF seems to confuse people.

Diastolic dysfunction doesn't necessarily mean you have HF (HFpEF) but it can lead to heart failure. As you've already found out, unfortunately it seems some GP's don't understand HF and know even less about HFpEF.

Anaemia is very common with HF. Theres research being carried out to try & understand why HF & anaemia are linked, it seems HF can cause anaemia & anaemia causes HF to worsen. Additionally, HF anaemia doesn't always respond to iron tablets, it's believed that the gut doesn't allow absorption of iron rich foods or tablets, but again this isn't really understood & this is part of the ongoing research around anemia & HF. I would assume your husband will be having regular blood tests to check his iron & ferritin level & if theres no improvement then iron infusions may be required. Again this is something GP's don't seem to understand too well!!

Can I suggest you look at the pumping marvellous website, they are the UK's leading HF charity & are recommended by cardiologists & specialist HF nurses worldwide. I've posted the link below. They also have a Facebook support group which I highly recommend you join if you're able to, it's a group that is solely for HF patients & their carers (such as you & I) so the support, information and advice will be invaluable, up to date & correct. There are a number of members in the support group who have HFpEF which I'm guessing is probably the most important thing to you, as they understand the condition.

I hope this helps you, my husband has HF though he has HFrEF.

pumpingmarvellous.org/

Ps: there is also info re HF anaemia on the Pumping Marvellous website.

[Barnboy in reply to Lezzers]

Thank you so much no they haven't said he needs follow up blood tests but I'm going to make an appointment to seek ro de this week and I'm going to mention this to them x

[Lezzers in reply to Barnboy]

Whilst my husband has a different type of HF he had anaemia and his oncologist ( he'd had cancer treatment) wrote to his GP to ask for him to be put on iron tablets. The GP said she disagreed, but would prescribe them anyway! My husband was then referred to a HF nurse because his cardiologist requested it. Once the nurse got involved she very quickly arranged for him to have 2 iron infusions, which helped him massively!!

I would read the pumping marvellous website info and/or speak to someone at Pumping Marvellous headquarters they're all very kind and incredibly helpful & will be able to tell you what questions to ask the GP & when to dig your heels in and tell the GP they're not following NICE guidelines!

Good luck x

Ps: do you mind me asking what medication your husband is taking?

[Barnboy in reply to Lezzers]

he's on amolidine also diasozin a stating also apixaban as he previously had a dvt He was previously on lisinopril and they upped the dose which made him ill dr said just stop your meds that's when I stepped in and told dr no he needs them sorting properly not just to stop them with heart failure diagnosis Dr then said diastolic dysfunction isn't heart failure yet on my husband's patient app it's got heart failure diastolic dysfunction and aortic stenosis which dr said is very midland his heart is pumping normally We are getting very mixed messages on consultation ladt week it says heart failure with normal ejection fraction

[Barnboy in reply to Lezzers]

I dug my heels in at dr as he told my husband to stop taking the bp meds lisinopril I'd the were making him ill I said no he can't just do that with heart failure diagnosis and I will hold you responsible if he does and anything happens I got a email bac k saying diastolic dysfunction is not heart failure his heart is pumping normally and at most he has mild aortic stenosis and he told me he would not be threatened by me and was reporting me to the practice manager I phoned the practice manager and spoke to her Our drs are now doing txts service as appointment and I sked for him to phone but he said he was too busy this is now how our drs is

[Barnboy in reply to Lezzers]

I have found pumping marvelous it's vet informative thank you

[Lezzers in reply to Barnboy]

Glad to hear the pumping marvellous website helpful. Your GP doesn't sound great!! Is there any chance of changing your GP? Diastolic dysfunction doesn't necessarily mean you have heart failure but it can lead to it & I can totally understand why you're confused if his medical records say he has HF but the Dr says no.

As my husband has HFrEF I don't know much about diastolic HF or those meds.

I would definitely phone the Pumping Marvellous people for advice, their phone number is 01772 796542 & they open at 9.30.

Or you could phone the BHF nurses on 0808 802 1234, they open at 9am.

Good luck, I hope you get it sorted, perhaps you could let us know.

[Silvasava]

If iron levels are low for any length of time further investigations need to be made. Both hubby and I had colonoscopies and endoscopies. Hubbies was OK but mine diagnosed colon cancer, waiting for a date for surgery now.

[Barnboy in reply to Silvasava]

he's had a sample done which showed no blood in stool but I'm going to ask for blood tests now saying he needs reg ones going forward My husband just takes it as they tell him dosent ask questions I won't I fight his corner but he goes mad and says leave it I don't think he accepts he has heart failure

[Silvasava in reply to Barnboy]

That's good then, Hubby was the same and iron tabs have increased his levels so not so breathless. It's hard when partners just seem to switch off when you're trying to help them xxx

[Barnboy in reply to Silvasava]

Sorry to here about your diagnosis I hope they can get the cancer taken away .I have diverticulosis and have problems and it's worry when you have any bad symptoms X

[Qualipop]

A normal ejection fraction is never 100%. 60% is around normal and is good. I woiuld be asking to speak to a different doctor to get a proper explanation. Do you have a pulse oxymeter? One of those you put on your finger to check oxygen levels? If it goes down to 95% you ned to be ph oning 111 for advice. I've had awful breathlessness for a year now. Spirometry test excellent; heart supposedly ok although I know I had two 64% blockages. These days you really have to be persistent to get answers . Have you thought of getting him to your urgent care centre to get him checked? Don't be put off by doctors- keep asking why and what they are doing about it. Lots of things can cause breathing problems.

[Lezzers in reply to Qualipop]

Hi Qualipop

I think you're getting confused with the different types of HF. HF with reduced EF is when you have a below normal EF number. The OP's husband has or possibly has HF with preserved EF, so his EF would be normal. HF with preserved EF is where the heart isn't able to fill with blood properly. HF with reduced EF means the heart isnt able to pump out (eject) the blood properly. Have a look at my reply above which hopefully explains the difference between the 2 types of HF. But yes, you're absolutely right, the Dr should be explaining this better, particularly as he's said the OP's husband doesn't have HF but his records say he does!

[Qualipop in reply to Lezzers]

Thanks, I had no idea there were two types.

[Lezzers in reply to Qualipop]

I think a lot of people here aren't aware of the different types of HF. There are in fact 3 types, the third being HFmrEF which is HF with mildly reduced EF, I didn't mention it before as it was irrelevant to the OP's question as again it's a reduced EF HF. This type of HF is a fairly new category & is used to distinguish the difference between severe/moderate severe HF & mild HF.Sadly some GP's are still in the dark ages when it comes to HF. Our last GP used to argue with my husband's specialist HF nurse as she really didn't understand the medication he was on. As soon as my husband was discharged from the nurses care the GP stopped a number of his medications & sadly caused a lot of problems. His cardiologist was so angry that he said should the GP ever do that again to let him know and he will sort it out!

[Barnboy in reply to Qualipop]

they said normal ejection is around 70 per cent sorry he's is 60 bnot 60 that's my fault typo error no I'm going to make an appointment one day without my husband knowing and I'm going to ask then to refer him to cardiologist my husband won't want this as he thinks he's not that bad now safter what's been said about the anemia I think he needs to go ad he's had a dvt twice in the past and is on apixaban

[Barnboy in reply to Qualipop]

I'm going to phone get an emerging appointment for myself this wee without my husband knowing he's getting stressed with all what's going on and told me to leave it it's his health Yes but it's affecting me now and making me ill so I'm going to ask for answers and ask they reefer him to a cardiologist whether they will or whether my husband need to request it I don't know But he will say no leave it till the next echo in 13 months To me that's not accurate I feel like I'm fighting eith mu husband and the drs at the moment

[Qualipop in reply to Barnboy]

That's exactly what I would do. Bear in mind that they are not allowed to discuss his health with you unless he gives specific permission but you can explain your concerns and ask what they can do to help. If it heps, my husband is exactly the same. He's of the generation where you do not question doctors- they know best but also believes if you ignore something it will go away. It 's his way of coping. Mine's diabetic and I often send photos to the GP of his "personal shopping" each week, ie a huge pack of crumpets , scones, an enormous cake and two packs of biscuits. If he wants to kill himself I can't stop him but I can do my best to let the medics know.

[Barnboy in reply to Qualipop]

yes he is still sitting down most of the day I'm getting him to move when I can but since he's retired he's just bern lazy he admits it himself but not doing anything .He eats cakes biscuits snd the other night I went mad he had 2 pkts crisps over the space of a day how much salt is in them He's cut his drinking down only has a couple of pints when we go out and a whisky before he could have 5 or 6 They wont be told at all and I'm just nagging he daid and stressing hi. more so don't know what yo do hence me going to drs