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JIM BLOG

The New Drug.

I am walking through Dublin on my way to The Mater Hospital for a blood test and a quick check-up with Rhona Savage, our Advanced Nurse Practitioner. The reason is that I recently started a new drug called Entresto. A drug that can greatly improve heart function with, I hope, minimal side effects. I started taking this medication a few weeks ago, a low dose initially, just to see if it suited me. Side effects tend to come with practically all medicines and Entresto is no different. On a Facebook page that I regularly visit, I asked other Entresto users how they faired with it. A lot of people mentioned dizziness when standing up and headaches varying from mild to severe. Some suffered so badly with these side effects that they had to stop taking Entresto completely. I won’t go into the science of it all, mostly because I don’t understand it, but Entresto can be taken instead of an ACE Inhibitor in order to improve heart function. All medicines having side effects Entresto can drop blood pressure, hence the dizziness.  I was put on a low dose of the drug at the start and after a  couple of weeks I went to The Mater for a blood test and chat with Rhona. As everything checked out, it was deemed safe and appropriate to increase the dose. The amount was doubled and this appointment today will determine if I stay on Entresto long term.

The weather is beautiful today so I decide to walk some of the way before I get on the bus. The stop I go to is right outside a Centra store and there are lots of people waiting outside the shop and waiting at the bus stop. You know that I love the fact Ireland is now such a multicultural society and that is highlighted by the comings and goings from the shop and around the bus stop. A man waiting outside the shop just finished a phone call. He was speaking Portuguese so I assume that he is from Brazil. Much more importantly, he has a beautiful Golden Retriever, happy with tongue out and tail wagging gently enjoying the people coming and going and the sunshine. In the opposite direction a woman from Africa or of African decent walks towards us with a lovely Golden Labrador on a lead. The dogs notice each other first and the tails begin to wag more enthusiastically. The humans acknowledge each other and they both smile. As the canines engage in the usual doggy greeting and getting to know-you ritual – bum sniffing, I say, “When I do that I get into trouble!” Cosmopolitan Dublin is a wonderful place but the Irish sense of humour can sometimes get lost in translation. The dogs carry on oblivious but the humans glare at me aghast, mouths open as if I am some sort of maniac. The worst part of is the bus is stuck at the traffic lights and I am standing at the bus stop like a right lemon. It feels like everyone’s eyes are on me. Staring. Judging. Feeling really uncomfortable, I try to hide behind the bus shelter. COME ON BUS!!

Eventually I get to the hospital in a bit of a state and still flustered after the incident with the dogs. I have never been happier to see a phlebotomist! The blood test actually goes well with just the two attempts before my veins cooperate. From there then I go up to the cardiac outpatient’s department. After the blood pressure test, I have a chat with Rhona about my progress with the new drug. There have been some headaches and some dizziness, especially when I stand up quickly. But these only lasted for a day or two thankfully. I have the feeling of a bit more energetic recently too. The good weather has of course helped as I go walking more often. Rhona checks out the blood works and says everything has come back looking good. In fact, I think she is happier with the results than she expected to be. It’s all good news and she gives the green light to carry on taking Entresto at the top dose allowed, which is double the original amount.

Delighted with the progress, I bound out of the hospital and back out into the brilliant sunshine like a dog with two tails! I wonder if they are still there!

Be Kind to Yourself.

The articles contained in Jim Blog are written by Jim O’Brien, a 45 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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