Heart Failure or failed myself?

I have final stage heart failure. Had a hole in heart repaired when I was 4 years old and a valve replacement in 1993 at 14 years old. Been ok from that time to a few years ago.

Since Sept 2017 my heart has been deteriorating and I’ve been in out of hospital a good 8-10 times. September 2019 I had a ICD put in but within the month was in hospital from blacking out and getting frequent shocks from my device.

Was transferred to a different hospital for a heart transplant assessment but they said I was unsuitable. They also said ablation wasn’t an option. I deteriorated further and was told I wouldn’t make it to the end of the week. Was also advise send to have ICD turned off and they put a DoNotResusitate notice on my file.

I didn’t have the device turned off and received a few shocks over the next few days, since then I’ve had some improvement and went home to spend the little time left with my wife and kids.

Got readmitted to a different hospital 2 weeks later and they asked whether I wanted treatment and whether I wanted the DoNotResusitate notice left in place. I chose to have the notice removed and to get treatment if possible.

They transferred me to another hospital to get a second opinion on ablation. This new hospital said ablation won’t help at the moment but they want to upgrade my ICD to a device with more leads.

Had the operation last week but they had to stop procedure midway as I was having breathing issues because of pressure in lungs and fluid build up.

Still in hospital waiting for them to try the device replacement again which they plan to do on Tuesday (24/12/2019)

I would like to know if anyone’s had similar experience and what they did. Also if there are any experimental drugs or procedures I could try?

So that’s me, hello?

[MichaelJH Heart Star]

Hello and welcome to the forum! I am afraid I cannot offer any specific advice. However, there is a device called a VAD (ventricular assist device) that is I believe a fairly new development, and seems as if it may be an option. Bear in mind that I am not medically qualified. There is a link here with more information :

rbhh-specialistcare.co.uk/d...

[Hidden in reply to MichaelJH]

Thank you.

Seems it’s private treatment though?

I couldn’t afford a basic procedure never mind something like a ventricular assist device.

Will it become available generally for everyone who could benefit?

[Dolphin14 in reply to Hidden]

Do they have LVAD programs at your speciality hospitals?

[MichaelJH Heart Star in reply to Hidden]

I believe it has NICE approval for when a heart transplant is not an option. This suggests it is available on the NHS. If you think it may be an option speak to your cardiogist/GP. Good luck and let us know what response you get.

[Lezzers in reply to MichaelJH]

My understanding is that it's an option whilst waiting for a transplant

[MichaelJH Heart Star in reply to Lezzers]

I think it was originally but the document I linked to also says:

§ When heart transplant is not an option and a VAD is needed as long-term treatment for heart failure.

[Lezzers in reply to MichaelJH]

I read that as being private for long term treatment but if that's not the case that brings a lot of hope. Be interested to know what ria1979' consultant says.

[Dolphin14 in reply to Lezzers]

People can be on LVADS even if they are not transplant candidates.

[Lezzers in reply to Dolphin14]

Yeah, but I don't think the NHS supply them unless you're awaiting a transplant. Michael thinks the NHS will supply them now so would be interested in knowing what the poster's consultant says.

[Dolphin14 in reply to Lezzers]

Yes, I agree I would like to know what the outcome is.

It's hard for me to believe that it's not an option. If someone is referred to a specialty hospital is that always private pay? Is it not considered a higher level of care?

[Lezzers in reply to Dolphin14]

The cost is usually a factor with the NHS. We do have hospitals such as Papworth which specialises in hearts & lungs but it is a NHS hospital though it probably does have private patients as well.

I don't know much bout private hospitals as they're out of my league but if the NHS hospital is overloaded sometimes they will pay for a private hospital to carry out minor ops. However, they won't take on patients with complex medical issues such as my husbands as they don't have the same emergency facilities. My husband was put on the private hospital list for a hernia op but they refused to take him.

[Dolphin14 in reply to Lezzers]

Thank you for explaining.

[Hidden in reply to Lezzers]

I will post an update once I get a chance to talk to my consultant. Shouldn’t be too long as I’m currently admitted in hospital.

[Dolphin14 in reply to Hidden]

Best of luck

🙏

[Lezzers in reply to Hidden]

Thank you & best wishes. I hope they get the device sorted for you. Take care

[Hidden in reply to MichaelJH]

Thanks. I will talk to my consultant and post update if I get one.

[Dolphin14 in reply to MichaelJH]

VAD devices are used frequently in the US. They've been used for years. I had never read anything about them on this forum and had often wanted to question how often they were used.

People can live on LVADS for quite some time.

[Hidden in reply to Dolphin14]

I’d need to talk to my consultant but I hadn’t heard of this till MichealJH mentioned it.

Also the link he suggested seems to imply it’s private treatment.

Will post anything that I can glean from my consultant.

[Milkfairy Heart Star in reply to Hidden]

Hi ria1979

There is research at Birmingham University funded by the BHF into the use of ventricular assist devices

birmingham.ac.uk/university...

Perhaps ask your Cardiologist to make contact with the Heart Transplant team in Birmingham for more information

[Dolphin14 in reply to Hidden]

I didn't read the article. So, I apologize for that.I do hope you have some luck with this.

🙏

[MichaelJH Heart Star in reply to Hidden]

I think that it is just because it is from the private part of the Harefield website.

[Hidden in reply to Dolphin14]

An important detail I left out is they say my heart is too weak and there’s too much pressure in my lungs. Will have an assessment whether I can get a heart and lung transplant. Is a VAD still suitable in such circumstances?

[Dolphin14 in reply to Hidden]

VADS are used here as a bridge to transplant. A lot of people on VADS are waiting transplant.

[Dolphin14 in reply to Dolphin14]

VADS are also used on people that are not transplant candidates.

You have to check your particular case.

I'm not sure if your failure is just left side or left and right.

[Johnem in reply to Hidden]

I am humbled by your fortitude and sincerely hope that luck comes your way for a change. Keep strong my friend and may God be with you.

[christina1947]

Dear ria just want to wish you all the luck in the world I can’t believe that there isn’t an answer to your heart problem It’s wonderful what the heart consultants surgeons can do today xxx

[Hidden in reply to christina1947]

Thank you.

I couldn’t believe it either, especially when they put the Do Not Resuscitate on my file.

Anyway at a different hospital for a IVD device upgrade and then waiting for answer to my heart and lung transplant referral.

[Kristin1812 Heart Star in reply to Hidden]

I don’t think they can put a DNR notice on without your agreement, can they? I notice you have now taken it off, so it seems to be your choice.

This has become a very interesting thread......but of course you are the person actually going through all this and its real uncertainty..... which must be really really tough.

We are with you, in spirit.

[babssara in reply to Kristin1812]

Hi

I have an ICD and pre op they explained to me that if my heart becomes so bad they can switch the defibrillator part of the device of, therefor in effect do not resuscitate

[Hidden in reply to Kristin1812]

The DNR was placed by one hospital and removed on a subsequent admission to a different hospital.

So to be honest I don’t know if it can or can’t be placed without patient consent.

[Dolphin14 in reply to Hidden]

It cannot be placed without consent in the US.

It can be placed by the health care proxy if a person is unable to speak for themselves.

You can also become a DNR and change it at any time. It is addressed every time you enter the hospital.

I would like to add to that by saying if you choose to shut off an ICD that will shock you from a lethal arrhythmia you are saying you don't want resuscitation. The treatment for lethal arrhythmia is defibrillation and medication. So, it means you are choosing not to be defibrillated

[Kristin1812 Heart Star in reply to Hidden]

I’ve just looked up DNR and whether it’s the patient who can refuse or consent.

I was wrong.

Apparently Drs should consult with patients and relatives and consider their views, but they then make the decision. It seems to depend more on whether the Drs think resus is likely to work, and whether they think it might result in more harm and pain than not doing it. Clear?

[Cymrucurious in reply to Hidden]

I'm gobsmacked by your post.How the other half live hey?

Touched by your 'matter of factness' by your honesty and willingness to share the most important decisions in a lifetime. I pray for you and wish you all you wish for yourself ...

Bless you Hidden, from the bottom of my heart x

[Kristin1812 Heart Star in reply to Kristin1812]

i just noticed cymrucurious, that you ‘liked’ this post. It is from three years ago, and I’m pretty sure the use of DNR notices has changed. I believe you can now have one applied without knowing or consent, but they will remove it if you ask.

[benjijen]

Keep trying. I really support your refusal of DNR. I really hope you find the treatment you need xx

[ScoobyDoo71]

Hello ria

I just read your post I’m so sorry that you are going through such a tough time at the moment

I think my main concern here is that it sounds like you have ‘adult congenital heart disease’ and that in itself is a whole different ball game than what is usual type of heart failure. Like you say your lungs aren’t great and unfortunately that can occur as we get older I too have ACHD and am running into trouble now 😬

There are a few points firstly none of this is your doing so the title of failed myself is really sad as you cannot blame yourself for this situation.

I’m sure you have but do you have a specialist ACHD consultant that also specialises in heart failure and pulmonary hypertension ? I’m sure the Brompton have one if not I would definitely ask for their opinion

ACHD is unique to each individual and really important that you are seen by teams familiar with the condition

VADs can be used but only helpful in certain circumstances.

I do hope that things improve for you are you being able to access any emotional support at this time for both you and your family ?

Sending best wishes

[Hidden in reply to ScoobyDoo71]

Some good points and thanks for the encouragement.

[Hidden in reply to Hidden]

Couldn’t get my device replaced today, was cancelled last minute as they said I had too much fluid build up in body/lungs.

Spoke to Dr about VAD but he didn’t know much about it but said it’s quite specialised and only considered in very specific circumstances. He did say he would pass it onto a senior consultant to loop me in.

I’ll end this little update with a heartfelt thanks. The support from everyone is amazing even though we haven’t and may never meet.

[Michaelaxx]

i have no answers, but just wanted to say good luck and wishing you all the best with this xxxx

[Harrysgran]

I an not very knowledgeable about your condition but i just want to say i wish you all the best, good luck and stay strong and positive ,xx

[Hidden]

Just a quick note to say the comments and support are overwhelming. Can’t thank everyone individually but just know I appreciate each and everyone.

[Gladwyn in reply to Hidden]

Best wishes to you ria1979 . xxx 💐👏

[Supernanu]

I too cannot contribute any advice but join with the others in wishing you all the best.

[Cavalierrubie]

Wishes and prayers for you brave soul. I pray for you because nothing is impossible for God. Psalm 91 is very powerful when you need urgent help. The God of hope is a God who heals. Don't go to the phone go to the throne. May you feel the love of him this Christmas, and you and your family are blessed.

[Ads568]

Hello ria1979,

I’m sorry to read what you’re going through at the moment and send my very best wishes.

My situation is somewhat similar to yours, although I was eventually fortunate enough to be suitable for a heart transplant. It sounds like you’ve been to several hospitals! If you haven’t been there already you could maybe ask to be referred to Royal Papworth; they do heart, lung and heart & lung transplants there. I’m not an expert, but I believe they offer VADs as a longer term solution now, as well as a bridge to transplant. It was discussed as an option for me if my condition deteriorated further before a transplant became available.

I know it can be really difficult when you feel so poorly, but maintaining a positive mental attitude and gaining as much knowledge about your condition and possible treatments available are really important factors, I feel. The BHF website and the transplant centres’ websites (eg Royal Papworth) have information that might be useful, if you have the energy to search.

Wishing you and your family all the very best. Do keep us informed.

Adsterp

[37Polly]

Praying for you and your family today. 🙏🏻

[Disciple5451]

I’m lost for words mate so sorry

[Yorkshirehead]

Hi,

I can’t help with any advice as my condition is very different to yours. What I can say, though, is that you have not ‘failed yourself’. From what you have described you have done everything you possibly could. You are a fighter and should be proud of that fact.

Very best wishes.

[Surreychica_1]

Oh my goodness poor you. No I have not been through that , thank goodness. I have no idea what I would do to be honest, but it does seem they are trying their best to get your heart back into a reasonable state. I wish could help but I do wish you all the best and keep us uptodate with your progress.

[Buddy4me]

Hello ria1979,

Your bravery is truly inspiring, I am unable to offer any medical advice, but I do know you should never give up or question yourself, please continue to hold on to every precious moment you have with your family, the power of love is second to none. My heart and prayers go out to you and your family. Although we have never met I feel truly humbled by your post and send much love your way. xx

[Renj]

Prayers for good results!!

[Vivi2711]

By the GRACE OF ALMIGHTY you'll be OK shortly. Never give up

[Hidden]

The support from everyone is amazing even though we haven’t and may never meet.

[Yasyass]

You’ve gone thru so much wondering how u r managing now