Living with Heart Failure

Health & Diet Health & Diet: Chat / Discussions
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Hi

I have had heart issues for many years, woke up 23 years ago on my 50th after an emergency quadruple bypass.

I had had mobility issues for over a decade before that following an injury at work, 7 years on crutches and a full length leg brace.

The injury caused a lot of circulatory problems as well, blood clots damaging my lungs etc.

I also lost 95% of the vision in my right eye and had bits of things in the right side of my skull and brain.

I was injecting myself in my stomach daily for all those years.

That is the back story.

Fast forward, things went wrong with my heart, it was to be expected, Heart Grafts only last about 10 years at that time, mine lasted 20 years, with a very active lifestyle.

I have known I have heart failure for some time.

The first I knew about was just pre Covid, not the best of times, clinics etc were stopped.

It was not serious, but over 2 years ago, I found out that my condition had deteriorated to such an extent that I was awarded full attendance allowance under the Special Rules, I was not expected to last a year, and the award had been backdated.

Lasted 2 years longer than expected until earlier this week.

Emergency Admission, nearest available ambulance was over 40 miles away, and this was for me being unable to breath properly and gasping for breath.

The other ambulances were stacked up waiting outside A&E waiting for their patients to be let into the Hospitals.

The Ambulance Crew had never been to Shrewsbury before, or the Hospital.

The two ladies were very good, got me stabilised and an extremely quick drive to the Hospital.

There are building works going on, so took 10 minutes to find the Ambulance Admission.

They did not have the Code for the doors, nobody answered the bell for 10 minutes, so stuck outside all that time., getting worse.

Once in, a long detour because of the building works to get to the Ambulance Reception Zone, kept on the Ambulance Trolley.

Transferred after nearly 2 hours to a Hospital Trolley, the Ambulance being inoperative all that time.

It goes on and on.

Many hours later transferred to a Hospital Bed on a Ward.

Diagnosed with Decompensated Heart Failure and a lower respiratory tract infection, oedema to both lower legs and also affecting major organs.

An Acute transition to life changing and life threatening illness.

I am starting a new journey in my life and will sharing it on the Forum.

Thanks for reading this.

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Man, I hope things improve for you.

I don’t know if it would help to call around to hospitals or emergency services to set up the quickest transport to the nearest hospital that can fully take care of you medical conditions.

I don’t know if your police of fire departments would help. Our fire departments have medical teams and medical vehicles for emergencies.

The police here may help you. They do help in medical emergencies some times but they can get fire and ambulances very quick.

Maybe coordinate with a neighbor.

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I am so, so sorry for the challenges you are currently facing. I truly hope the prognosis can at least find you comfort and peace. Having been active most of your life, i’m sure now being quite sedentary is terribly frustrating. But please reach out here and know someone will answer and we are all here for you.
Suzanne

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You are an inspiration to us all @swimfeeders and I realise that there is nothing wrong with me in comparison. I just hope you are still writing on the forum for many years to come and prove those doctors wrong. I expect nothing less from a brave Yorkshireman…
:+1:

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I can only echo OGF’s words @swimfeeders and hope you hang around for many years to come.

Personally the razor wire episode impressed me no end :icon_wink: but your grasp of international affairs is always impressive.

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Sounds very frightening. But ambulance crews are so good at what they can do. It’s such a difficult job.

Heart failure can be successfully managed for decades these days. Once they stabiliise the kidney function. I learned about it at a young age as my dad died of it when I was in my 20s. These days he would probably have lived far longer. I just hope that you get the treatment you need what with all the cuts to NHS funding. Once you get through the doors there are some very dedicated people on the front line.

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Hu

I think you misunderstand.

Firstly the ambulance.

Having the nearest available ambulance over 40 miles away is dangerous

The delay has resulted in serious permanent damage.

Secondly, yes,some but definitely not all, types of heart failure can be managed for many years.

I have had heart failure for years, resulting in being given full Attendance Allowance for help with my care needs some 3 years ago under the Special Rules, i.e, not expected to live for 12 months.

I have managed to live 2 years longer so far.

I now have Stage 4 or Level D Heart Failure, which is most definitely end stage.

I was admitted last week with Acute Decompensated Heart Failure, which affected my ability to breath, I had a very sudden worsening of my Heart Failure, with my lungs filling with fluid.

The damage is irreversible and comes on top of the existing heart and vascular damage.

A quadruple bypass, now failed, two stents in the sole remaining coronary artery, left ventricular diastolic dysfunction, mitral regurgitation and peripheral vascular disease.

My heart has failed to such an extent that I have been given an Advocate, not enough blood getting to my brain for it to function properly .

I take 13 different medications on a daily basis, with another 7 as required and do my observations at home.

I trust this clarifies my health status, I get tired even sitting up at times and am very unsteady on my feet.

There is no way my symptoms can be successfuly managed.

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I’m sorry, yes I misunderstood.

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