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Jim Blog

The Progress.

This time last year I was preparing to go into hospital for cardiac surgery. The procedure called Subxiphoid Ventricular Lead Implant (that’s easy for you to say!) would entail the installation of a new defibrillator plus the addition of an extra wire which, once inserted into my chest underneath my original scar, would link another one of my chambers to a third outlet in the new defibrillator.

No matter how many surgeries I have undergone, I still get nervous. The surgical team however convinced me that I needed it. As one of the doctors rightly pointed out, six months ago I could walk for miles, now I had to to sit down after putting on my socks. Succint and accurate. The operation was set for a date in early June. All hospitals all over the country are up to their necks as we all know. Outpatient appointments, surgeries, clinics: all are under terrible strain with the sheer volume of patients, lack of staff and of course Covid has only exacerbated the situation. The result being that my surgery was postponed for a month. It may not sound like a big deal, but for a patient, or the parents of a young patient, it is a big deal. It takes time to prepare yourself mentally for an operation and a postponement is a blow as well as a disappointment. It is something that has been happening to me since I attended Crumlin Children’s Hospital. My thoughts on situations like this, especially happening to children, are unprintable, but if hospital authorities want to improve things, then this must be a priority.

The surgery was the scheduled to take place on Monday, June 12th. The night before Italy beat England in the final of Euro 2022. Having some Italian blood, I was bouncing around my room on St. Cecilia’s Ward after Italy won. My blood pressure must have through the roof. FORZA ITALIA!

Six months on (last January) and after what was a tricky recovery at times, the hospital wanted to start giving me Entresto to improve my cardiac function even further. As you have read in previous blogs, the drug worked so well for me that the dose was doubled to the maximum allowed within one month of my starting it. I must point out that this is not the case for everyone. I was fortunate the medication suited me. So how have I faired on it since? Overall good. Very good in fact. My exercise tolerance has improved. It has been a slow process but the improvement has been noticeable. Not only am I able to walk for miles again, I push things even further now. The only thing that holds me back is hills and stairs. One flight of steps, no problem. Two flights, pushing it a bit. Three flights, well I’d need a sit down after that. Hills are a struggle too still. But sometimes it’s just a matter of pushing yourself a bit more. For now though, Christchurch hill is off the menu.

Speaking of the menu, my diet has very much improved since this time last year. Salt, which is a big problem for people with heart failure as it retains fluid, has been so hard to avoid. It seems to be in everything that is processed, even bread and breakfast cereals. But overall I have made it my business to avoid salt where possible. I do treat myself to a blow-out once a week (or twice, but don’t tell Professor Walsh!).

with a take-away! Apart from walking, I now have a resistance band at home for some gentle exercising. I use it every other day and will use it daily in the near future. It’s easy to start things too quickly and either cause an injury or get frustrated at what seems like a lack of progress or getting very tired quickly. My method is simple: start small, stick with it and then build up slowly as time goes on. Doing too much too soon will only lead to anger, frustration and exhaustion. Progress is slow and that’s okay. Proceed gently, slowly and don’t feel the need push yourself too hard or too fast. This goes for all acts of recovery: diet, mental health, exercise. The progress may be slow, but it is progress none the less.

Be Kind to Yourself.

The articles contained in Jim Blog are written by Jim O’Brien, a 46 year-old adult with CHD. The opinions and views he provides reflect a real life account of his experiences and honest commentary on his life-long journey with CHD. Jim is a valued member of Heart Children and writes voluntarily for us. His views do not necessarily reflect the beliefs and values of Heart Children but we are delighted that he is contributing to a greater knowledge and understanding of what it is to live with congenital heart disease.

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