Mother been diagnosed with Heart Failure

[SXGuy]

Re: Mother been diagnosed with Heart Failure

Blood test at the start of last week, confirmed HG as 8.9. Was the same the week before that.

I have been giving her Vit C and Iron Supplements, as well as B Vitamin complex, however she only started on those 5 days before her last blood test, so its unlikely they did much at that point.

Unsure what the level is at the moment as no one has recommended another blood test.

She has an appointment with her community heart nurse next week, so I can always ask him to provide a blood test form if we need to see what the levels are. (rather not try to get one through her GP as could take 2 weeks for an appointment)

I'm not really worried about that so much at the moment, symptoms seem to be non existent now. Which is a good sign I believe.

Shes under Basildon Hospital. Being that you're under Southend, I don't need to tell you any more than that lol

Im more worried about the delay in the endoscopy because its delaying her angiogram which is something she could really do with right now.

Although the distance she can walk is increasing, it could be better.

The Hospital asked she stopped taking Aspirin until shes had the endoscopy, but we decided to put her back on them for now. Its taking so long that we are not prepared to take chances with her having any stroke, because they cant get her seen to as quickly as they would have us believe is possible.

I just don't trust them at the moment. Sometimes you have to make decisions for yourself.

[patchouli]

Re: Mother been diagnosed with Heart Failure

I'm under Southend University Hospital at the moment as it was discovered in April by my Optician that I had Optical Neurosis so she sent my GP an urgent letter to ask for referral to the Ophthalmologist at SUH... I went to see the GP who read the fax and did a huge gasp, re read through all my notes and realised that the last few months of 'problems' I have had plus the Optical stuff actually look a lot like MS... so I was whisked off there and then for an MRI and tests and ......

..... and now nothing. I have an appointment with the Neuro in June and the Ophthalmologist end of June.. When I said "But the specialist said to prevent more sight loss I need Steroids ASAP" they just said "It's the waiting list, sorry.

Like you say.. when you are rushed in they are hot to trot... but follow up treatments are hard to get and the waiting list is horrendous... not good if you are like your Mother needing treatment NOW.. or like me... a 44 year old sitting here wondering if tomorrow I will wake and not have ANY sight or use of one limb or another.... sucks big time.

One thing I know is my Hg levels are naturally low... throughout all 5 pregnancies they were bleating on about how I couldn't have a home birth unless I got the levels up to 11... they never went above 9 despite taking lots of black crap inducing pills.... I ignored them in the end and had my home births.

However 8 is quite low. Have you tried to raise them naturally with high iron foods and vitamin C rich foods?

[SXGuy]

Re: Mother been diagnosed with Heart Failure

Thanks for the message.

We are still waiting for the "urgent" referral. Will be chasing it up at the start of next week.

[tierisch]

Re: Mother been diagnosed with Heart Failure

Really annoyed update.

Last week after coming back from the hospital, I telephoned my mothers GP, a Dr (not her own) rang back, and said, that referals for endoscopies should be done internally from the hospital, and if my mum was feeling unwell at any point, to go straight to A & E for a blood transfusion.

Today we get a phone call from the hospital, the lady my mother saw at cardiology asked if we had spoken to her GP, I said yes and explained what he said. She said, that's not correct, internal requests are only done if you are admitted to hospital, all out patient referals must go through the GP first.

So I telephoned her GP again, explained what the hospital said, they were all um's and ar's, said someone would ring back.

Eventually someone did, and said, oh we have a note that your mother needs an endoscopy and angiogram however it doesn't say we need to refer or or its urgent. Not good enough I said, it needs to be done ASAP. Someone will ring you back again in a minute.

Her GP finally rang back and asked exactly what the other DR said last week, I told her. She didn't want to admit he was wrong (no surprise) and all she could say was, we will get the referral sorted now for you.

So my mother has waited a week for nothing!

I don't trust her GP surgery anymore, I'm ringing them Monday to ask for confirmation that the referral has been done, or else I will flip.

She had to have another blood test last Tuesday, which was a week after the one she had previously. Cardiology today confirmed her haemoglobin levels, have not changed. Still 8.9.

Asked cardiology if she should have a blood transfusion, all they said was "not at this stage" whatever that's ment to mean!

Im trying to treat it as a positive rather than negative, as id assume if she was getting worse, it would be lower than before.

I have read though that some women my mothers age, can have levels of around 9 to 10, and doesn't have to be 12 as stated, so im starting to wonder if that level is just normal for her.

Really need this endoscopy done so she can progress with her treatment. Mum feels like things keep setting her treatment back which I understand. Feel like banging my head against a wall sometimes!.

Medics are often vague (I should know having working with zillions of them over the years). The 12 threshold for transfusion has been debated for years and is based to an extent on older research papers. In many places the threshold is much lower so someone can carry on with Hbs of 9 without needing immediate transfusions so often a case of what else is going on. Someone stable with a Hb of 9 without any real impact may be operating fine at this level however someone with a cardiac or cancer issue may need a transfusion. So as you say you mom's level may be normalish for her.

As for them prating about I don't bother complaining to PALS etc I would just wing the trust (and the local commissioning group) chief exec any complaints. Hope your mom's issues get sorted though....always a long journey!

[SXGuy]

Re: Mother been diagnosed with Heart Failure

Your right. When my mother had her stroke, A & E were great, had her scanned and started treatment within hours. Out Patient is where they lack the ability to move quickly. I remember the cardiologist when telling my mother to stop taking Aspirin until the bleed I sorted saying "im sure you have had this for a while now, so an extra month wont make much difference"

Not really what you want to hear. Had a stroke, likely to have had a heart attack, severe blocked right ventricle, surely time is important.

[cymruambyth]

Re: Mother been diagnosed with Heart Failure

When there is a medical crisis the NHS cannot be beaten, however this is not always the case in the recovery phase which can depend on where you are etc.

keep battling and eventually everything will fall in to place.

[SXGuy]

Re: Mother been diagnosed with Heart Failure

Really annoyed update.

Last week after coming back from the hospital, I telephoned my mothers GP, a Dr (not her own) rang back, and said, that referals for endoscopies should be done internally from the hospital, and if my mum was feeling unwell at any point, to go straight to A & E for a blood transfusion.

Today we get a phone call from the hospital, the lady my mother saw at cardiology asked if we had spoken to her GP, I said yes and explained what he said. She said, that's not correct, internal requests are only done if you are admitted to hospital, all out patient referals must go through the GP first.

So I telephoned her GP again, explained what the hospital said, they were all um's and ar's, said someone would ring back.

Eventually someone did, and said, oh we have a note that your mother needs an endoscopy and angiogram however it doesn't say we need to refer or or its urgent. Not good enough I said, it needs to be done ASAP. Someone will ring you back again in a minute.

Her GP finally rang back and asked exactly what the other DR said last week, I told her. She didn't want to admit he was wrong (no surprise) and all she could say was, we will get the referral sorted now for you.

So my mother has waited a week for nothing!

I don't trust her GP surgery anymore, I'm ringing them Monday to ask for confirmation that the referral has been done, or else I will flip.

She had to have another blood test last Tuesday, which was a week after the one she had previously. Cardiology today confirmed her haemoglobin levels, have not changed. Still 8.9.

Asked cardiology if she should have a blood transfusion, all they said was "not at this stage" whatever that's ment to mean!

Im trying to treat it as a positive rather than negative, as id assume if she was getting worse, it would be lower than before.

I have read though that some women my mothers age, can have levels of around 9 to 10, and doesn't have to be 12 as stated, so im starting to wonder if that level is just normal for her.

Really need this endoscopy done so she can progress with her treatment. Mum feels like things keep setting her treatment back which I understand. Feel like banging my head against a wall sometimes!.

[SXGuy]

Re: Mother been diagnosed with Heart Failure

Thanks guys, will do!

[MrsD]

Re: Mother been diagnosed with Heart Failure

glad she's making progress, I guess you just need to continue to do the pushing and shoving, it's something your good at and it's all coming good. tell your Mum we're thinking of her and we expect her to get well toutsuite!

[Undercover Elsa]

Re: Mother been diagnosed with Heart Failure

I'm glad your getting to the bottom of things now SXGuy. I did think she was having a GI bleed which I'm sure explains the low Hb. The anaemia can also cause rapid pulse, breathlessness and feeling tied/faint.
Be wary if they give her iron tablets though..they can be very hard on the stomach. Ask about injections, which aren't very nice but do the job much faster.
I had surgery last year, and haemorrhaged but they didn't give me a blood transfusion because I have rare antibodies and it has to be pre ordered. Of course, they hadn't thought to order "my" blood in before the op. Stuck me on Ferrous Fumerate which caused horrendous stomach pain and diarrhoea so I threw them out and concentrated on diet instead, liver, red meat, pate, bovril, blackcurrant juice, dark green veggies etc and my Hb came back up rapidly.

Well done on the supps, and for sticking with it and keeping them on track. I think your mother's improvement is largely down to you questioning and pushing for the right diagnosis.
Elsa xx

[nightwatch]

Re: Mother been diagnosed with Heart Failure

sounds like some good news SX, so glad your mum is doing well xx

[SXGuy]

Re: Mother been diagnosed with Heart Failure

So my mother was at cardiology bright and early this morning.

The blood test they did last week showed my mother has low haemoglobin levels. They did another today and its still low. around 8.9 (should be 12)

Because of this, they do not want to go ahead with the angiogram until the cause of the low levels has been established.

The Dr took note of what I said previously regarding clopidgrel and causing my mothers stool to be tarry black.

The dr said, its likely my mother has had an issue in the bowl or stomach region for quite some time, and the clopidgrel unmasked an underlying issue.

The Dr is putting in a urgent request to have an endoscopy preformed to find out the cause, before continuing with the angiogram.

Some good new though however.

Dr has now confirmed my mothers ejection fraction has increased from 15% to 20%. Heart has shrunk by a few points also.

Unfortunately I was not there to be able to discuss this with him, but it appears as those the supplements I sought for my mother is working.

Adjuna and CoQ10 studies have found that they increase ejection fraction by 5% every 4 weeks, and shrink the heart by 2 points. It seems that shes on target with those studies. All very pleasing.

He also said that she can reduce the water tablets shes on from 60mg to 20mg, and just watch for any increase in fluid.

They now believe she never has had a heart attack, and the stroke was mainly caused by a blocked artery. What is/has blocked it, they still wont know till the angiogram has been done.

So some positives and some set backs, but progressing forward none the less.

[SXGuy]

Re: Mother been diagnosed with Heart Failure

Just thought id update this thread as I haven't for a while now.

Mum had a ECG last week, and is having an angiogram on Wednesday. The nurse kindly informed me, that they wont actually put a stent in that day, so she's basically got to go through the whole process twice. Be laid up for 48 hours twice, when it could all be done the same day if need be, really angered me.

Explained to the nurse my mother cant be put on clopidgrel due to her black tarry stools it produces. The nurse said, oh that would be a gastro internal bleed, yep better not have that anymore, will need to speak to the cardiologist for an alternative as they like you to be on it for a year after a stent is placed.

Why a slightly higher dose of aspirin isn't fine I don't know. No doubt because it costs pennies compared to other pharmaceuticals.

Gotta be at the hospital for 8am. Cant eat after 7am. So looks like we will be up at 6am getting ready, oh joy!. At least she will be able to come up around 2-3pm that day so that's something I guess. Just annoyed that she will no doubt have to wait another 6 weeks before they do the stent.

Apart from all that, mum appears to be fitter than before the stroke, although because of the blocked artery, she cant walk that far at the moment, so the wheelchair is coming in handy.

She doesn't seem to need much sleep during the day now, and she is sleeping really good at night, so looks like the supplement's I've been giving her is really helping.

May consider paying for a private cardiologist to do an echocardiogram to see whether her ejection fraction has increased, as that can only be the likely cause for the decrease in fatigue, and the lack of need for a rest as much as she should be having given her heart condition.

Will update thread when I know the result of the angiogram Wednesday.

[CleverClogs (RIP)]

Re: Mother been diagnosed with Heart Failure

Putting on a nice spread for her though so that's something

Ought one to ask what you are spreading and for whom?

Or not?

[IF]

Re: Mother been diagnosed with Heart Failure

Thanks!

Mums been able to walk up the stairs for the last 3 days, it takes her a few minutes, but shes doing it. So shes finally been able to sleep in her own bed, get ready in her own room and use her toilet with no effort at all. Really made a massive change for her.

She isn't quite ready to prepare meals yet as shes still using a walker to help her get around, but I shouldn't imagine it will be long before shes doing that also.

Tonight is the first night ive come home, now shes able to get to bed by herself I felt it was time. Will still be there for the morning to make her breakfast and sort out medications, but as I say, it should only be temporary.

Staying over again on Friday, along with my wife as its her birthday.

I am so pleased on your Mum's progress so far SX Guy