Heart device is part and parcel of my life now

MY HEALTH EXPERIENCE:I am still hopeful for a transplant, but I don't dwell on it, relates COLIN FORBES

I WAS DIAGNOSED with heart disease with cardiomyopathy (heart muscle disease) in May 2005. There was a history of heart disease in my family and I was a smoker, but at 50 I was young for this kind of diagnosis.

Initially, my doctors talked about a quadruple bypass, but I was put on the transplant list on June 13th, 2008. I had left work due to ill health at that stage and had been hospitalised on numerous occasions, including a stay of one month for renal failure.

I suffered renal failure again in September of that year and Prof Wood asked me if I would mind staying in hospital until a heart became available. I stayed in the Mater for 18 months from October 2008 to April 2010. In June and September 2009, I got two calls for hearts but neither was suitable, so the wait continued.

My main focus during this long period in hospital was on waiting for the transplant. You have to steel yourself to the situation and I did it reasonably well. I kept abreast of current affairs on my laptop, listened to music, did crosswords, read a terrific amount and had friends come to visit.

I broke it down into days to get through it psychologically. I did see a couple of other patients in the same situation who were not able to handle the long stay in hospital and that scared me because I didn’t know how long I was going to be in there. The staff at the Mater were fantastic, they helped me to keep going. At one stage, I had a Scalectrix in my room.

In July 2009, I had a relapse and was taken into the ICCU where I stayed until February 2010. It was surreal, a most peculiar environment to live in for so long.

Towards the end of 2009, Prof Woods came to me to say he was concerned that there was still no sign of a heart and kidneys and, even if there was, I wouldn’t get a transplant because my chance of survival was now greatly reduced, that was how serious my situation had become.

He asked me if I would consider having a Left Ventricular Assist Device (LVAD) implanted to take over the work of my heart while I was awaiting a transplant. I wasn’t too keen initially because I was so psyched up for the transplant but I had it implanted in February 2010 and since then, I have been able to resume total function and am even back at work.

The LVAD is a mechanical device that attaches to my heart and has taken over the pumping function of my left ventricle – the main pumping chamber of the heart. It is attached by a lead to a battery that I carry around with me everywhere I go in a case similar in size to a laptop case. I have very minimal blood pressure and no pulse.

I got used to the device quite quickly and it’s part and parcel of my life now. I have to keep the wound site clean and dressed and am on Warfarin to keep my blood thin.

I have a good quality of life at the moment, I do a lot of walking and I am now very much suitable for transplant when a suitable heart comes up.

I suppose in time this machine will replace transplants. Five people in this country now have been implanted with LVADs since 2009. I am on bridging therapy but some patients in the US are on them for life and there have been a couple of cases where people have been taken off them because they strengthened the ventricle and heart.

I am still hopeful for a transplant, but I don’t dwell on it. I’ve been given a second chance and am reasonably healthy. If it comes up great, but I have an alternative now whereas before, it was a game of Russian roulette.

It’s been an incredible experience. It’s been extremely emotional and yet an experience I’m glad to have had in one way. It’s given me a wonderful insight into how wonderful people can be, hospital staff and friends. I am very fortunate, I really am.

It’s a cruel disease, the waiting and not knowing what will happen. You have to try to stay positive, it’s the only thing that kept me going. To anybody else with advanced heart disease who is given the chance to go on one of these devices, I would definitely recommend it.

In conversation with Michelle McDonagh

LVAD: WHAT IS IT?

A Left Ventricular Assist Device (LVAD) is a mechanical device that circulates blood through the body when the heart is too weak to pump blood on its own. Sometimes called a “heart pump”, an LVAD is not an artificial heart or a heart replacement.

A common type of LVAD has a tube that pulls blood from the left ventricle into a pump. The pump then sends blood into the aorta (the large blood vessel leaving the left ventricle), which helps the weakened ventricle.

The pump is located in the upper part of the abdomen. Another tube attached to the pump is brought out of the abdominal wall to the outside of the body and attached to the pump’s battery and control system.

Former US vice president Dick Cheney, who has a long history of heart problems, had an LVAD implanted last year. Like Colin Forbes, he is on bridge-to-transplantation therapy to improve his quality of life while he waits for a donor heart to become available.

LVADs are also being considered for use as a permanent therapy for people with severe heart failure who are not transplant candidates.

Patients suffering from advanced heart failure and who have exhausted the limitations of medical therapies may be candidates for an LVAD.

Studies have shown that advanced heart failure patients treated with an LVAD can live longer and enjoy a much improved quality of life compared with those being treated with drug therapy alone.