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"Lvad, heart failure (mechanical heart )"

About: Freeman Hospital / Cardiothoracic surgery

(as the patient),

 Beep! Beep! Beep! Man on a wire I awoke in ICU freeman’s hospital. 

The noise was coming from the equipment that keeps me alive and it's attached to me . In November 2017.my failing heart was salvaged when surgeon's implanted a left ventricular assist device, or LVAD, to keep blood flowing through my body unfortunately that clotted and failed, in December 2018 a second implanted LVAD was fitted 3rd implant later that month yes a year later in total . (35 days in ICU amazing)

When I learned how to maintain the equipment, I was told it makes only two sounds: a loud, terrifying squawk with a red light that means there’s a major problem and I must call freeman’s hospital only freemans can help … or, a lesser, cautionary chirp with a yellow light that means the batteries need changing. This was only the chirp, sort of like a home fire monitor announcing that its battery needs changing (nightmare) Still, it was the first time I was hearing it, so there was a bit of panic .

The moment served as a powerful reminder that living with an LVAD brings a whole new set of rules to my new life. Getting an LVAD is a major painful and gruelling open heart operation it's a frustrating but gratifying experience. Me someone whose heart is severely compromised because of Heart failure is given a second chance at life. I suffered several heart attack and cardiac arrest since 2010. I was diagnosed with heart failure, which meant the muscle was no longer capable of efficiently pumping blood poor quality of life. The LVAD took over the work of my damaged heart a chance to live again but not permanently. Destination therapy.

For some LVAD recipients, the device is temporary. They get it as a “bridge to transplant,” something they’ll need only until a new heart is available. (How longs a piece of string) For some patients, it’s permanent. This is called “DT destination therapy. (4 years) Yes there are patients like me, I know the LVAD is my constant companion and a shorter life . Regardless of which category a patient falls into, the daily maintenance is pretty much the same. And as I and other LVAD Warriors/patients say, they get used to the restrictive routine and nurse lead care team and constant medical management . Within 12 months I've be advised it becomes as much second nature as constantly been plugged into the mains and charging your mobile phone on a evening and wearing a favourite man bag 24/7 day and night. “I don’t even think about it anymore,” few months after receiving my LVAD. “I’m used to it now. It’s like my watch or my ring. I feel naked without it but frustrating with it physically and mentally I'm totally affected. *** 

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Responses

Response from Patient Experience Team, The Newcastle upon Tyne Hospitals NHS Foundation Trust 5 years ago
The Newcastle upon Tyne Hospitals NHS Foundation Trust
Submitted on 15/04/2019 at 11:00
Published on Care Opinion at 16:09


Thank you for taking the time to share your experience regarding your care at Cardiothoracic Surgery, Freeman Hospital. We are pleased that the team were able to provide the care needed for your condition and should you have any concerns, the Patient Advice and Liaison Service (PALS) may be able to provide you with help or advice and can be contacted on Freephone 0800 032 02 02 or by email on northoftynepals@nhct.nhs.uk. We have forwarded to the directorate concerned, who will share with the staff involved.

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