When Medical Professionals Refuse Testing

I have Heterotaxy Syndrome with Polysplenia which almost always comes with heart issues

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.

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17 Comments

  1. 1st May 2017 / 1:54 pm

    Crikey – you really have been through the mill – and then some. How horrible that you were not told about your condition earlier – and face to face so you could ask questions. To just receive the news in a letter is so impersonal.

  2. 1st May 2017 / 2:25 pm

    Shared link on Pain Pals Monday Magic – Inspiring Blogs x

    • 1st May 2017 / 2:29 pm

      Thank you for sharing my post xo

  3. 1st May 2017 / 4:01 pm

    I cannot believe they refused testing! Actually… I can… Thinking about what we’ve seen with how a few medical professionals act with my daughter…

    • 4th May 2017 / 12:23 am

      It’s so frustrating because you think that they would actually be a little better with the help we need. But some really let the system down.

  4. 1st May 2017 / 7:42 pm

    You shouldn’t have to fight to get your chest checked particularly under these circumstances. I truly wish for you to get the appointment to start the necessary investigations soon x

  5. Helen
    1st May 2017 / 7:52 pm

    I really hope you get the tests and answers you need soon, I really feel for you going through all of this. It is so frustrating when the medical professionals don’t listen, it feels like they are not doing what they are supposed to…helping people!

  6. 2nd May 2017 / 3:48 pm

    I am so sorry you have this health issue. I have Crohns so I understand what it is like to have health issues and even have it down played. I will be thinking of you and I hope you can find the right doctors who will make the right decisions for you.

    • 4th May 2017 / 12:25 am

      Thanks, Jessica. Sorry to hear you have Crohns. It was something that I was tested for a few years ago despite not having any symptoms. I hope your pain is as well controlled as can be xo

  7. shelley
    2nd May 2017 / 4:17 pm

    I am so sorry to hear that they are not helping you. But I completely know how you feel as I’m in a similar situation and it’s just so upsetting when you realise that they are not bothered. I do hope it gets sorted very soon xoxo

    • 4th May 2017 / 12:25 am

      Sorry you’re going through similar. I hope that you get the help you need x

  8. 2nd May 2017 / 4:25 pm

    Oh gosh! I am SO sorry for what you’re going through! 🙁 I know what it’s like to be fobbed off by doctors and I completely disagree with how patients are kept in the dark about their conditions. I used to work in Radiology and I saw a vast number of people with health problems, that they knew nothing about! (It felt all kinds of wrong to know things about patients, that they didn’t!)

    As you’ve had so much radiation in the past, perhaps they could do an MRI instead?

    I hope you manage to get something sorted, as the last thing you need is to be under this amount of stress! *hugs* xxx

    • 4th May 2017 / 12:28 am

      Hi Chrissy, thanks for your comment. I just can’t believe that no one thought to tell me, you know? It’s not exactly like it’s a small thing either. Heterotaxy is a pretty big thing, and as I said in my post, is why my cardiac status needs to be assessed. I’m so angry, but don’t have the energy to complain. I am asking for them to do an MRI and ECG if I get the referral. I don’t understand why the radiologist didn’t suggest it as an alternative. Here’s hoping xox

  9. 4th May 2017 / 9:32 pm

    What a horrific and scary experience for you. Why do doctors think it’s ok not to tell you th full story at the time let alone k. A letter. Have you thought about putting in a complaint to the hospital as if they have done this to you it could be happening to others as well x

  10. Rebecca Smith
    4th May 2017 / 9:49 pm

    It’s so frustrating that they’ve refused you testing especially when you know it absolutely needs to be done! Wishing you luck in managing to get it xx

  11. 22nd May 2017 / 4:15 pm

    I hate to see that you’re going through all of this to get your heart looked at!! My daughter has Heterotaxy as well, along with complex congenital heart defects. Is it possible for you to request a referral to have an echocardiogram done? This is the primary method used when the cardiology team looks at my daughter’s heart. It is like an ultrasound, but for the heart, and it gives the doctors MANY views and images to help give an accurate diagnosis and treatment plan. Also, never be afraid to seek a second opinion at a different hospital if need-be!

    • 22nd May 2017 / 10:21 pm

      The issue I have with the scan being refused is that I am not under an appropriate team for my heart. I have a specialist gastro for my many, complex issues related to my gastro (Pancreatic Agenesis, SOD Type II, FNH on my Liver, Hep/Panc-Biliary issues, Gastroparesis, Gut Malrotation – the stuff caused by my Heterotaxy). My gastro was the one who sent the referral as requested by my GP, which was requested by a radiologist who (for whatever reason) happened to be looking over recent and old xrays and scans). I have sent a letter to my GP to ask him to refer me to a cardiologist who will have the authority to arrange the scans. I just can’t believe that another radiologist refused, thinking he knows better. When it’s actually important ALL Heterotaxy patients have cardiac assessment as complications and emergency issues are common with us. Wow, that was a ramble haha. Thanks for your comment. I hope your daughter is doing well xo