Heart Failure Nonsense: Hello My wife... - British Heart Fou...

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Heart Failure Nonsense

Prada47 profile image
16 Replies

Hello

My wife passed me a cutting from a National Daily Newspaper ( debatable ) about a New Cell Patch which can be stiched on to the Heart to encourage Cell Growth to fix damaged Heart Muscle and Restore Function.

If they are looking for Voulnteers I have my Hand Raised not worried about the risk factor just would like to give it a try.

My issue with the article.

" Of people who develop Heart Failure half will be dead within 5 years "

This is just a statement with nothing to substantiate it !! If it said 50% of over 85 YO with Heart Failure will die because of it, over the next 5 years it may make sense, but not just as a blanket statement.

I have a stress MRI next week and when I see the cardiologist I will ask if they are looking for Voulnteers for the cell treatment I would like to be a candidate.

Regards to All

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Prada47 profile image
Prada47
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16 Replies
Seaguller profile image
Seaguller

Well said

Dear Prada47

Did the paper you quoted from used to have half naked ladies on page three in it? Lol

But what a shocking thing to print, and as you say it’s another badly worded and presented article.

No doubt I will get a text or call soon from someone I love worrying about that statement.

As for the patch , now that sounds a more positive approach to a medical breakthrough.

I will be waiting to hear your outcome with your consultant, I have a fear that my heart is a little past a patch , but I would support anything that helps us or future generations of hearties { for it’s sad to think that there will be further generations }

Take care

Milkfairy profile image
MilkfairyHeart Star

Hello Prada47,

Here is a link to the researcher quoted in a Daily Mail article which I think you maybe referring to.

Perhaps email him and ask about the trial?

stemcells.cam.ac.uk/people/...

nihr.ac.uk/news/new-stem-ce...

Prada47 profile image
Prada47 in reply toMilkfairy

Good Evening Thanks for the link

I have just sent them a brief History of my Heart Journey with the names of my Cardiologists the one for Interventions and the one for Heart Failure !!! I have said I am open to any trial or Intervention !!! I have also said my Medical Records are open to them to view should they think I would be a suitable candidate.

Finally I said I am in Reasonable Health both Physically and Mentally except for the Breathlessness caused by heart failure. Here is Hoping

Best Regards

Millikins profile image
Millikins in reply toMilkfairy

Also saw the article in the Daily Mail. Thank you Milkfairy for the links. Much appreciated. X

Nettekin profile image
Nettekin

Hi prada. Well you know what they say about statistics..... I agree the concept of the patch sounds intriguing and would be very interested what your consultant says when you see him next week. Reading a quote like that would be all the stress I would need if I was diagnosed as having heart failure. In itself such a terrible choice of words. Best wishes for your test x

Prada47 profile image
Prada47 in reply toNettekin

Hello I have responded direct to the Stemcell team at Cambridge, Milk Fairy gave me a link I will keep you informed of any developments !! Thanks for your response.Regards

uzininemm profile image
uzininemm

I read the article but treated it with a pinch of salt, firstly because of those statistics thank you TWE for pointing this out, and for the fact that whilst BHF is mentioned I can't find anything on this site. I would have expected BHF to have announced this under news.

Also BHF only in June 21, did a excellent article on the ongoing development of injectable microspheres.

I certainly find this news outlet, (known in my circles as the daily fail), not worth it.

Kelling profile image
Kelling

Regardless of the damage such irresponsible reporting may cause those patients currently suffering with heart failure

Kelling profile image
Kelling

Well if I had no worries when I woke this morning, then after reading this post my concerns have reached new levels of worry for no one has even suggested to me that, along with everyone else I have a 50% chance of having a 5 year life span from being diagnosed with heart failure. On a link supplied by "Milkfairy" to the National Institute for Health Research (NIHR) suggests:-

"There are hundreds of thousands of people in the UK living with heart failure - many are in a race against time for a life-saving heart transplant. But with only around 200 heart transplants performed each year in the UK, it's absolutely essential that we start finding alternative treatments."

How many here with heart failure have been put forward or a heart transplant? If a transplant is "best practice" are we to assume those who have not been put forward for a heat transplant are one of those "People who develop Heart Failure, half will be dead within 5 years"

Perhaps a more fitting study would be one carried out to find out why half of those who suffer with heart failure will be dead within five years and how to prevent this.

Or perhaps more fittingly, we could carry out a study of just how necessary these discussion points are to the well being of the majority of visitors and members of the BHF in their own and very unique fight against heart failure and what they have specifically been told/informed/enlightened by their own specialist, where such information ceases to be of interest but becomes inconducive to the well being of the patient, even detrimental to the very health this group are supposed to support.

Surely such information, academically interesting as it may well be, does not have a place on a forum like this, one that deals with the day to day fight ordinary patients have with their own bodies. Furthermore, if there are members who are academically on a par or gifted to make sense of these reports without scaring themselves rigid, perhaps they should consider a membership of The Lancet.

Or could it just be a question of superiority within the group? Perhaps better to advocate that all patients with a concern, have their family doctor make enquiries regarding heart transplantation with follow up interviews with their consultant, may be a more helpful way forward.

Purely a suggestion you understand, for links to such professional bodies as given this morning are nothing but concerning to the majority and at a time when there are enough concerns for us all to deal with on a day to day basis, just adds to the burden.

Prada47 profile image
Prada47 in reply toKelling

I could dispute your understanding of the information presented not everyone is waiting for a Heart Transplant, Transplants stop at age 70 I believe ( stand to be corrected ). I was pointing out how age plays a critical part in the information presented as fact.

Regards

MDR1 profile image
MDR1 in reply toKelling

Well said! This is going to alarm a lot of people on this site. Members are constantly being shouted down for posting ANYTHING that might cause anxiety to certain people and yet here we are, saying half of us will be dead within 5 years of having heart failure. Not to mention quoting from a paper only useful as kindling.

Milkfairy profile image
MilkfairyHeart Star in reply toKelling

The BHF website has some information about Heart Failure.

Are you suggesting that the BHF should not post this evidenced based information on the website too?

bhf.org.uk/what-we-do/news-...

Kelling profile image
Kelling in reply toMilkfairy

No I am not suggesting that.

Silvasava profile image
Silvasava

I read about the patch too and also would be delighted to have treatment like that but I'm sure it won't be perfected in my lifetime, it has to start somewhere. I'm waiting to go on a BHF sponsored clinical trial if I am suitable in the next few months. Fingers crossed you are acceptable, good luck

HHH2017 profile image
HHH2017

Although as you say a 'badly' reported article once again. However like you I am very interested in the research and will follow up on the link from milkfairy 👌🏼 Thank you for highlighting this. Great to hear of possible advances 👍🏽

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