Let it bleed

Life on a VAD is precarious. There are many things that can and do go wrong, and I have had my share of them during the time the Impaler and I have been joined at the hip.

The nurses need to ensure that I am constantly monitored, so that any potential complications are identified as soon as possible. Every four hours whilst I am awake, my temperature, blood pressure, pulse and blood saturation are each checked and recorded. Several times a day, the Impaler is checked and a note is made of the flow rate and the fill rate. Every day, I am examined by a cardiologist.

The hospital staff need to know where I am at all times and I cannot ever be more than 30 minutes from the hospital.

The worldwide statistics for VAD patients are not pretty. Around half do not live long enough to obtain a transplant. That is, however, quite misleading to my own situation. In many countries, notably the States, VADs are widely used as destination therapy. A small VAD is implanted and attached to the patient and it is not contemplated that the patient will ever undergo a heart transplant. The patient is intended to live with the VAD for the duration of their life. For me, the Impaler is intended to be a bridge to transplant. My doctors are looking to keep me healthy and minimize the effect of complications until a suitable donor organ becomes available. Given that I am young and strong, and on the transplant list, there is a low likelihood that I will die on the waiting list prior to transplant. Nonetheless, the risk is a very real one and my patient management practices reflect that.

The most nefarious complications which a VAD patient can experience are clotting, infection, bleeding and machine failure.

It is imperative for the blood of a VAD patient to be significantly thinned, to allow it to properly flow through the plastic tubes going to and from the pump chamber. This means I must take blood thinning medication every day. One of these, Warfarin, was once used to kill rats. If the blood of a VAD patient is not thin enough, it can clot and cause a stroke. This happened to me about a week into the coma. Dr Thomson was required to perform emergency surgery at my hospital bed to remove the clot, which I believe was near my heart. Fortunately, I have not experienced any further clotting issues since then.

VAD patients are at increased risk of infection. The pump chamber is connected to two plastic tubes which are inserted into the abdomen. One is connected to the left ventrical of the heart and the other to the aorta. This creates a portal between the organs and the outside world. It also creates an environment that is conducive to bacteria and viruses. They love to live on the tubes. It is like purpose built apartment living for them. I have had at least three infections since the Impaler was inserted into my belly. The first was a nasty fungal infection which ravaged my body and very nearly killed me. I think it was called Candida Liberata. It took weeks for the Infectious Diseases doctors to identify and treat. The other infections have been much less serious, and have responded well to oral and IV antibiotics.

Because my blood is thin, I tend to bleed. I bleed badly from the VAD wounds. The nurses must redress them every day and often twice daily. I bleed from the sternum wound. I bleed from shaving cuts. I bleed from the nose. I am not squeamish at the sight of blood. I have seen enough of it to last a lifetime.

A VAD is just a machine and machines fail. I must take a backup VAD with me everywhere I go, in case the Impaler malfunctions. Further, I need to carry hand pumps in case both machines fail. I have had a few mechanical problems with the VADs I have been connected to. Some have been minor and a couple more serious. Nonetheless, each problem has been identified and dealt with, calmly and confidently.

I have now  got through seven months with the Impaler. It has done well to keep me alive and keep me on the transplant list. It is extremely restrictive to living life and I often get frustrated that I cannot easily perform the basic functions I previously took for granted. However, it is significantly better than the alternative.

Until next time,