Living with Long QT syndrome

Hi, I am a student at Cardiff University training to become a Genetic Counsellor and I am doing a presentation to my fellow students on the social and healthcare needs of those affected by Long QT syndrome. I was wondering if anyone in the group affected with Long QT would be prepared to message me. I am interested to understand your care needs and how you feel about the services you access. For example, the treatment and care required, the health professionals you see (practise nurses, GPs, dieticians, cardiologist, geneticist), how and when you access treatments or services, how you feel about these services?

Rachel

[Hidden]

Hello Rachel. I have had my 'Heart Problems' since the Age of 6!! When I was in Hospital last year having OHS in Cardiff, I remember one of the Doctors mentioning something like this. Also they asked about my Family History of Heart Problems, which there are a lot!! Whether this would be of any interest to you, I really don't know. Please let me know if you think it would 🙂

[Hidden in reply to Hidden]

Hi there,

thank you for taking the time to reply. It sounds like you have had a difficult time. Have the clinicians reached a diagnosis? You mention the doctors asking about your family history of heart conditions, have they suggested a referral through to Clinical Genetics services to explore this family history further? I hope you are well now, is you heart condition being well managed? Sorry so many questions.

BW

Rachel

[Hidden in reply to Hidden]

Thank you Rachel and no it hasn't been easy but I'm alive and doing well at the moment 😀. They did mention something about the Genetics Service but haven't heard anything yet but with Covid that is only to be expected! I have always had excellent care with my Doctor and at different Hospitals and that is quite a few I can tell you lol 😆 😄. I now have a Pacemaker with two new Valves of the Heart so can't complain at all!! I have to go to the Heath in January now so maybe they will say something then. 🤔

[sturon]

Hi Rachel. Happy to help but out of the UK right now. I have been living with long QT for five years diagnosed after two cardiac arrests. I now have an S ICD implant. I have experience of the full range of services you mention. Living with long QT has presented a few challenges happy to share these with you.

Regards Stuart.

[Hidden in reply to sturon]

Hi Stuart, Thank you for your reply, I really appreciate that you have taken the time. It must have been very frightening for you and your family. Did you have other symptoms before the cardiac arrests? Did the first arrest trigger appropriate investigations? Do you feel confident now that that the ICD implant is managing your condition? I imagine you would have to have lots of regular check ups? It would be great to hear more about your diagnostic journey, how you manage your condition and the health care professionals you see. Have you had a positive experience with the healthcare services or has there been any difficulties? Do you have to have lots of different appointment or has the services managed to come together and treat you in a more streamlined fashion? Sorry such a long list of questions. I hope you have time to tell me more.

BW

Rachel

[sturon in reply to Hidden]

Hi Rachel. Iam very happy to fill you in my journey. Do you have a deadline? If you have an e-mail address I can send you a personal reply.

[Pommel]

Hi Rachel, do you have any other methods of contact? I know someone who might be interested in your study but they're not a close contact but I could pass your details to them via email or Facebook. Thanks, Caroline

[Hidden in reply to Pommel]

Hi Caroline, Thank you that would be great. Please pass on my email address: [e-mail],

Rachel

[Mentdent]

My dive buddy of 20 years has found out that she has long QT. She’s in her sixties now and has been scuba diving since she was a teenager. She’s never had problems and it only got spotted when she had a general anaesthetic a couple of years ago. The only real issue it’s caused is difficulty in passing a dive medical. Finding someone qualified to, and willing to take responsibility for ticking the box has been difficult. We’ve been all the way up the dive referees scale to the top and finally got a medical yes. As the referees committee said, if it was going to kill her it would have done so by now. She has done thousands of dives and is one of the most experienced sport dive instructors in the world. We suspect that there are loads of symptom free people out there and it’s just that it’s getting spotted by modern technology and possibly isn’t as serious a problem has been previously thought.

[Hidden in reply to Mentdent]

Sorry for the late reply. I somehow missed your post. It is good to hear your friend is asymptomatic and that common sense has prevailed and allowed her to continue with her passion for diving. It is the case that with Long QT the effects can be hugely variable from person to person. This can also depend on the genetic variant which may underlie the condition and how much impact it has on the electrical signalling of the heart. Some like your friend are asymptomatic and others can develop life threatening arrhythmia.

Do you know if your friend has had many follow up/ monitoring appointments since her diagnosis to keep an eye on her condition and does she take beta blocker or have any other treatment? Also are you aware if she has been referred to a Genetics clinic to determine if the condition is inherited?

BW

Rachel

[Mentdent]

Multiple follow up, no meds and genetics have been investigated. So far a couple of symptom free relations have turned up.

[Hidden in reply to Mentdent]

Thanks for replying so quickly. Do you know how your friend has found her care? Has it been well organised and efficient or have appointments been time consuming and inconvenient and, given that she is not symptomatic, felt a bit of a waste of time? Did she feel well supported by healthcare services? How was her experience with the Genetics services and letting her family know that they may wanted to be tested?

Rachel

[Mentdent in reply to Hidden]

My friend is/was a semi professional scuba diver and is extremely well known in the field. She also a very proactive person and is personal friends with the people who are the top medics and researchers in the field of dive medicine. Even so it’s taken some persistence to get anyone to sign anything off or take responsibility. My personal opinion is that modern technology has caused a large increase in diagnosis and that a lot of the cases that are now being “found” are the ones that we would never have known about before and that quite a few people are being alarmed unnecessarily and because of our legal system no one will stand up and tell patients that they really don’t have much to worry about.

[Milkfairy Heart Star]

Hello,

Could I ask whether you got approval to post your query on the forum from BHF admin?

I am sure your research is worthwhile however this is an open public forum.

How are you maintaining confidentially and obtaining consent?

Could you please give details of the ethics approval of your research and your supervisors details?

[Hidden in reply to Milkfairy]

I am not carrying out research. I am simply seeking a patient perspective of what health care professional are involved in care and how people feel about these experiences. It is for a short presentation about the need for and experience of health and community service provision .

[Milkfairy Heart Star]

Did you discuss this with your supervisor?

Here are the forum guidelines.

healthunlocked.com/bhf/post...

[Hidden]

Yes. I also made a request to the BHF and was directed here and to other support group. Thank you for the guidelines. I am sorry if I have offended you it was not my intention. I will remove myself.