If there’s something that frustrates me, it’s medical professionals completely fobbing me off or down playing issues. Those of you who’ve been reading for a while will know that, in the simplest terms, my insides are scrambled. I recently found out that I actually have Heterotaxy Syndrome with Polysplenia (I will do a post about this another time). My local hospital never bothered to tell me about their latest discovery. Meaning that I found out by letter from my specialist consultant at another hospital, which detailed recent scans and diagnoses. Wonderful.
So here I am, utterly confused as to why this wasn’t picked up sooner and why I wasn’t told personally. I’d always thought that my particular anatomy matched that of Heterotaxy Syndrome, but I (wrongly) thought that it always accompanied heart issues. And because I’d never been told I had any, probably because no one has ever looked at my heart, it was a condition that I wrote off back in 2014. I think you might be able to see where this is going.
Refusal Of Requested CT Scan
The day after receiving that letter, I called my GP. Who then told me that he’d received a letter from a radiographer from the hospital that I attend to see my specialist consultant. They’d reviewed multiple images from chest xrays that had been taken during admissions to rule out issues (due to the proximity of my pain to my chest) and picked up an issue which they felt may well be a Double Aortic Arch. The radiographer had requested a CT scan of my chest, which my GP then asked my specialist consultant to arrange, despite him being a gastroenterologist, not a cardiologist. You can imagine how that went. A specialist chest radiologist refused the scan, citing that he didn’t want to subject me to further radiation, which is fair. I have been subjected to a lot the past few years, which unfortunately I can’t escape. But the other reason given was that this specialist radiologist doesn’t think the issue shown was anything particularly untoward, and that it reflected my unusual anatomy. Unusual anatomy? You mean, my Heterotaxy Syndrome. I don’t just have ‘unusual anatomy’. In fact, Heterotaxy is likely the cause of my Pancreatic Agenesis, Gastroparesis and other issues with my hep/panc-biliary system.
To be clear, this is NOT an issue with my consultant, but with the radiologist. Talk about down play issues. Perhaps it may not be an issue for a normal person in good health. But as a Heterotaxy patient? This absolutely is an issue and something that should be investigated to assess my cardiac status. Whilst it is possible for a Heterotaxy patient to not have heart issues, it’s quite rare. Realistically, the moment I was diagnosed with Heterotaxy, I should have been referred to cardiology. But I haven’t. And now I am going to have to fight to get my chest looked at.
Heterotaxy With Polysplenia
People with Heterotaxy who have Polysplenia usually have what is called left atrial isomerism, meaning two left sides. They usually also have two bilobed lungs, causing lung issues and some also have total heart block which requires a pacemaker. Typically, people that have Heterotaxy with Polysplenia often go undiagnosed until they’re an older child and in cases like mine, an adult. This is because we’re usually asymptomatic for a while before the issues start showing. Which is pretty much my entire life story.
I’m so frustrated that yet again, I’m going to have to justify myself as to why I need my chest looking at. It shouldn’t be this way. Least of all for someone with a syndrome that is very well known for causing cardiac issues. I have spent SO many years being fobbed off by medical professionals before issues were uncovered by my former surgeon after an emergency admission. It makes sense to me that we are fully aware of my complete medical status because in an emergency situation, having all the right information can make all the difference.