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?
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 :
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.
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.
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.
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?
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.
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.
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?
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
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.
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
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
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?
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 ...
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.
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 ?
Some good points and thanks for the encouragement.
in reply to
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.
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.
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.
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.
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.
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
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