In 2023 I hadn’t seen my consultant for 6 years because he kept on rescheduling. He then blamed me for this when I did finally see him again, he was also incredibly rude about the fact that in those 6 years I had put on weight, I pointed out that so had he. He hadn’t seen me for 6 years, and he couldn’t be bothered to even listen to my chest with his stethoscope. I gave him another chance, but two weeks later, after he had rescheduled my next appointment twice, I decided enough was enough and I asked to change consultants. I’m now filing an official complaint against him, that lack of care is not good enough and the patients who come after me deserve better! In the past I wouldn’t have advocated for myself, I would have just let it slide, but this time my anger at being neglected sparked me into action. I found this page because I’m having a baseline MRI on Tuesday and I’m anxious about it, I’ve taken the day off work, I’m glad I’ve done that. But this MRI should have been done 10 years ago, another thing my previous consultant neglected to arrange!
I found this page because I don’t personally know anyone else with CHD, and I find it difficult to navigate sometimes. My condition has remained stable and without symptoms for 36 years, but I never know when that’s going to change - 15 years ago I developed another heart issue on top of my two CHD and due to lack of care from my GP who wouldn’t listen to me and kept sending me for investigations for acid stomach, after 6 months of bad judgement by her I was rushed into cardiac care with a resting heart rate of 183 beats per minute, my heart had been running a marathon every day of those 6 months and my body was exhausted! I was lucky that my two CHDs remained stable and without symptoms during those 6 months, while in surgery and in post hospital recovery, but we can’t just rely on luck, our doctors need to care and take accountability too.
I keep copies of every major test and surgical notes in a file folder. I also keep on hand my latest echo. Once my cardiologist changed offices, and somehow they got lost…. Luckily, he had been my cardiologist for many many years and he was able to fill in the deficits and he told me in the future to always keep these records.
I look at my Echo results and keep track of it. I also do not allow my heart practice to have anyone other than my MD cardiologist see me. They didn’t catch my condition when it should’ve been caught so I had already switched to a valve specialist. Now I’m one 1/2 years post surgery and I ask plenty of questions and call or email if I think of more later. I do write down my questions.
I have learned over the last year and a half that making a list of questions before each specialist visit was the best way to remember what I wanted to cover. I keep track of all my appointments/questions in what I call my “Heart Notebook.” Tracy and Liza’s book has been a great resource too.
In 2023 I hadn’t seen my consultant for 6 years because he kept on rescheduling. He then blamed me for this when I did finally see him again, he was also incredibly rude about the fact that in those 6 years I had put on weight, I pointed out that so had he. He hadn’t seen me for 6 years, and he couldn’t be bothered to even listen to my chest with his stethoscope. I gave him another chance, but two weeks later, after he had rescheduled my next appointment twice, I decided enough was enough and I asked to change consultants. I’m now filing an official complaint against him, that lack of care is not good enough and the patients who come after me deserve better! In the past I wouldn’t have advocated for myself, I would have just let it slide, but this time my anger at being neglected sparked me into action. I found this page because I’m having a baseline MRI on Tuesday and I’m anxious about it, I’ve taken the day off work, I’m glad I’ve done that. But this MRI should have been done 10 years ago, another thing my previous consultant neglected to arrange!
I found this page because I don’t personally know anyone else with CHD, and I find it difficult to navigate sometimes. My condition has remained stable and without symptoms for 36 years, but I never know when that’s going to change - 15 years ago I developed another heart issue on top of my two CHD and due to lack of care from my GP who wouldn’t listen to me and kept sending me for investigations for acid stomach, after 6 months of bad judgement by her I was rushed into cardiac care with a resting heart rate of 183 beats per minute, my heart had been running a marathon every day of those 6 months and my body was exhausted! I was lucky that my two CHDs remained stable and without symptoms during those 6 months, while in surgery and in post hospital recovery, but we can’t just rely on luck, our doctors need to care and take accountability too.
I keep copies of every major test and surgical notes in a file folder. I also keep on hand my latest echo. Once my cardiologist changed offices, and somehow they got lost…. Luckily, he had been my cardiologist for many many years and he was able to fill in the deficits and he told me in the future to always keep these records.
I look at my Echo results and keep track of it. I also do not allow my heart practice to have anyone other than my MD cardiologist see me. They didn’t catch my condition when it should’ve been caught so I had already switched to a valve specialist. Now I’m one 1/2 years post surgery and I ask plenty of questions and call or email if I think of more later. I do write down my questions.
Great strategies!
I've one of those people who has had a LONG lapse in care. This has really inspired me to change that. Thank you.
I'm so glad to hear that, Shari! ❤️
I have learned over the last year and a half that making a list of questions before each specialist visit was the best way to remember what I wanted to cover. I keep track of all my appointments/questions in what I call my “Heart Notebook.” Tracy and Liza’s book has been a great resource too.
A "heart notebook" is a lovely idea! Thanks for sharing.