Since my diagnosis, I’ve had ongoing cardiac symptoms but they seem to have grown in frequency since mid January. I have had a couple of reviews with my GP and the decision was taken to stop my dapagliflozin - fine.
Additionally, my presyncope symptoms have been getting worse and it’s now been recommended (by my gp) to stop driving whilst investigations take place and I was told to “brace myself” for a potentially lengthy process.
I was given a kardia gadget to start recording my own EKG readings at home and it’s recorded a number of wide QRS complex, PVC and potential Afib readings (in the last 5 days).
Previously when I’ve tried to speak to my consultant, I’ve often had an account taken by his secretary and him then send me a letter or just not respond. I appreciate that they’re incredibly stressed and overwhelmed with workload.
I would like to raise the feasibility of having an implantable loop recording device but wonder if they would entertain this for someone in their 30s?
What is the best way to approach this situation to be heard properly?
It’s taken 3 months to get the results of my exercise stress test and he mentioned that my heart rate reached 264bpm and that the test was relatively short being terminated at 7 minutes and that my increase in BP had a blunt rise (or something along those lines). I feel like it didn’t really explain what happened or what it means for me in everyday life.
Sorry for rambling and thank you in advance to anyone who has taken the time to read my post.
Best wishes
Soap
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MummaSoap
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I’ve read your bio and there are conditions on there that I am not familiar with; however, you have mentioned the implantable loop recording device and whether they would consider you for it. I think absolutely they would based on personal experience. I had a letter from my local cardiology team suggesting an implantable loop recorder for myself for the future, and I am 30. You can strengthen your case for the device by presenting your EKG readings that you have been taking at home.
I hope others offer insight on how you can advocate for yourself and the questions you should be asking during your next appointment.
My condition(s) are quite niche so it’s been challenging to get the correct treatment from a cardiologist that fully understands vasospastic angina and how it is connected to having a myocardial bridge which is a congenital heart defect.
I am under private care at the moment and have had some tests conducted, so it’s been a bit better since switching from the NHS to the private sector; however, very costly, but I suppose that’s expected.
Keep us updated on your progress. I shall look out for it.
My diagnoses are dilated cardiomyopathy and heart failure and SVT was also previously picked up on a holter monitor.
I totally understand the points you’re making and I think they’re really valid. I suppose for me it’s the daily instances of feeling like I’m going to faint, even when I’m sat or sometimes led down.
The fact that I’ve now been advised not to drive complicates things and I want to understand whether it’s just not going to improve or if there’s something else at play or perhaps requires another tweak in my medication to see if that helps. I have 3 young children and not having the ability to drive really restricts me and the activities we can do together as a family. You are right though, it’s unlikely that having an ILR will necessarily answer my questions.
It sounds like you’ve had a lot to get your head around and especially having watched your mum’s lived experience of the same condition; you sound incredibly brave!
Thank you so much for your reply, I’m going to sit down and work out what my questions are exactly and then hopefully I will feel more prepared when I see my cardiologist (meant to be in May but no date yet).
I really appreciate you taking the time to come back to me, thank you!
I can’t offer advice for your specific condition but have contacted PALS in the past and raised concerns and complaints. It can take a while to get a response but it also seems to get across the message and highlight you’re unhappy with your care. A second opinion is also a good option. If you can find a cardiologist who works for the NHS (at your nearest hospital) and privately you can often book in to seem then privately and you’ll get a lot more time and attention. They can then refer you for procedures via the NHS. I know private is expensive so I hate advising this route. We paid £250 for a first time appointment and £140 for a follow up appointment after that if it helps. My husband hasn’t had to see his cardiologist privately in months now, but it got the ball rolling. And I know if we’re in urgent need I can quickly book an appointment rather than waiting ages and ending up in A&E.
The BHF phone line is also brilliant - you can talk to a cardiac nurse and get advice. I’ve rung up in the past and been given more time than in appointments, I got to ask all the questions and came away with brilliant advice!
Unfortunately, private care isn’t accessible for me, I simply can’t afford it.
My partner was made redundant during the pandemic and then we decided after we found out about my condition that he would be the stay at home parent and I would go back to work once I was feeling better. I’m the only one working and every month is tight but we make it work.
Thank you for the advice about PALS and the BHF line, I have contacted them in the past actually when I found out I was pregnant and they were really supportive.
I hope you get a solution, have you tried getting help from the GP? Our GP has been hugely supportive since my husbands HA and chases referrals and appointments for us, she has a direct line to the consultants at the hospital and they often listen to her more than they do to us!
In all honesty, I wasn’t really sure where to go with so your suggestions have been invaluable, thank you!
I don’t know whether my consultant is an electrophysiologist but I will ask the question.
My dad also has DCM and is under a different consultant who said that he’s willing to take on my case and I have asked the question about whether my consultant would agree to the transfer of care.
That is a good point about contacting PALS for support, although one that I wouldn’t really know where to start with as I really hate confrontation and I am sure it isn’t through lack of care but just the nature of the beast with the system the way that it is right now. Certainly food for thought though and I will consider it as a possible avenue if the relationship breaks down.
Regardless of your individual health circumstances, which I am not qualified to make comments or offer advice I am sympathetic to your situation and its interesting to read that I am not the only person who feels they are not being listened too by their cardiologist. I have formed the view that prior to chasing my (no doubt) next overdue appointment with the cardiologist I am going to attempt to write to him detailing what I wish to discuss at our meeting, I hoping this results in a more beneficial appointment, giving them time to consider the content of the letter prior to meeting.
Have you done or considered this? I would be interested in any thoughts if this might be a good route to take.
I am sorry to hear that you feel like you’re not being listened to. I think for me it’s been a battle of playing the waiting game as per my cardiologist’s advice following the birth of my surprise daughter and long wait times for responses. Also just the vagueness of some of the letters! I’m attaching my most recent one which I feel hasn’t really confirmed a plan for how I move forward especially given that I’ve been asking for support around physical exertion because it’s really hindering my ability to be a mum to my children. It might be that there’s no specific adjustment or advice other than waiting which feels frustrating.
I haven’t done it previously but have considered it on many occasions and based on the sound responses here, I think it may be a good next step in preparation for my next review which is due in May (actual date tbc).
Patient letter dated 10th March, received 29th March
hello
I don’t know much at all about your particular health issues BUT,,,,
I Can absolutely sympathise with where you’re at with wanting clear answers and understanding plus as a mum too not driving understand the restrictions it places on family life.
You’ve written above areas you want clarity on and what your own suggestions for your treatment are - this is the makings of a clearly articulated letter to your consultant where you can outline where things are at, what questions and queries you’d like answered and your thoughts on further treatment. Plus as suggested getting a second opinion. Maybe you need to part company and have a consultant who may have a better idea of your case.
I did this, I’m sure Milkfairy at some point advised me to ask for second opinion and I got the best women cardiologist I could hope for.
Send recorded delivery - harder to say they didn’t see it - and follow all the good tips above from Milkfairy regards PALs.
It’s a hard slog this journey and especially when we are not well. We have to be proactive and push for progress and answers.
That’s what I have learnt from the good people here❤️
I think one of the biggest factors for me is that since January it’s been INCREDIBLY difficult to get through to my cardiologist and his secretary no longer has the option to leave a voicemail. I only managed to get her email address after calling cardiac investigations and following a generic secretaries email address.
Unfortunately my symptoms have been getting worse since January (after the stress test).
Thank you for your suggestions, I think I will put together a letter and try to get it sent tomorrow before the long weekend.
I really appreciate your response.
Best wishes
Soap
Dear You,
Write everything down and as you ask your questions, do not move onto the next one until you are happy with the answer.
Lines like " Im sorry but that doesn't answer my question" and " Im sorry I don't understand how you got to that decision " work to make them stop and realise that you are really listening to what they are saying, humble is better than aggression.
Always make sure that you are talking to the person that can give you your answers, sounds simple but so many relay through the wrong person and the original message can become distorted and corrupted.
Don't ever be put off onto anyone other than who you want those answers from { takes time and working out }
Believe me one of the biggest complaints from medical professionals is that they feel that their clients don't listen , many saying that its not uncommon for clients to go away after a meeting only for them to phone up for explanations that were already covered.
MummaSoap I am not saying that this is happening with your case but it is easy to think, especially with good bed side manner, that they have listened to you and will action on what they hear.
With the state of the NHS at the moment never assume anything or wait to long for so called answers,
You could be on the " we will get to them soon " pile for a longtime.
I think all your points are valid to have whatever treatment you feel may help with your diagnosis , if not you need to be told and in writing the reasons behind their decisions not to go ahead.
My thoughts are with you, your battle is hard enough as it is without this adding to your worries.
I agree with everything you’ve said and it could be that I haven’t fully digested what my cardiologist has said in the past but often the appointment seems fairly uneventful, there’s either a small or no improvement; he’s usually not particularly concerned by the symptoms I regularly experience and it was only when I stopped my previous medication because it wasn’t safe for me to care for my children on my own that he even entertained changing my medication at all.
I appreciate that there isn’t always anything that can be done and I’m not expecting a magic pill or solution but just clarity on what I can realistically do with/for my children. I don’t want to be a burden to my family.
Thank you for your kind words, I really appreciate your reply.
Apologies that I am unable to answer any of your questions other than “would they entertain an implantable loop recorder for someone in their 30’s” and the answer is yes!
I’m in my late 20’s and had my loop recorder fitted in January as I had been told I may require a pacemaker as they wanted to do further investigation due to my young age.
Really hope you manage to get the outcome and answers that you are looking for soon x
I was very lucky, I saw my consultant early December in which he explained they had picked up on a type of heart block on a previous 7 day holter monitor (which explained my symptoms- including dizzy spells, breathlessness etc) and I had the procedure for the ILR just over 4 weeks later.
I have a toddler that I am still breastfeeding so I was a little concerned on the recovery but I was in and out or hospital within 3 hours and was only sore a bruised for a few days.
It sounds like you would hugely benefit from an ILR especially as you are suffering with symptoms associated with presyncope. I would definitely push for one if you feel it is right for you, it’s absolute madness that you have been advised against driving due to your symptoms but not much is being done to get to the bottom of them. It’s no way to live your life, especially at your age with children. X
Hi I really feel your concern and your frustration. It took me months to first understand the syncope symptoms I was getting myself and then to be able to record them on an 7 day ecg so that my cardiologist could see them properly. The best hand you have at this is using the readings of the Kardia device in my opinion. If they show something significant and you can indicate the time of the day when you felt in a certain way, it's the best shot.
Keep up and don't let the frustration get the best of you. Patience and perseverance are key in these situations.
Hi MummaSoap on a few occasions I’ve written to the consultant and included Apple Watch readings. I write a cover note to the secretary ( as she’s the one opening his post asking her to pass this information onto the consultant - as well as a letter directed at the consultant ).
In the letter to the secretary I I’m very polite and thank her in advance as keeping her onside is important. I explain the anxiety all this is causing me. Once she has something in writing with your own ecg readings it’s harder for her not to do something with it, as a lay person she can’t interpret the readings.
My included letter to the consultant is always polite and appreciative of his time.
I include my mobile number and email ( as well as my address, hospital number and date of birth) as ways of contacting me.
I’ve been lucky and had both emails and phone calls from the consultant as a result.
That is really useful information; I’m going to print all of the readings I would like to have checked tonight and do a copy for my GP and one for the cardiologist (via his secretary) and just put it all down on paper and make my request regarding the feasibility of an ILR.
I really appreciate your response and I will ensure I include all of the key points you’ve mentioned especially contact details.
Best wishes
Soap
You seem to be a literate person from reading your posts on here, so I suggest you write down your concerns in the form of a letter and either present it direct at the next consultation or preferably post it direct to your cardiologist. I have written to specialists in the past and the fact that something is in writing from the patient sort of forces them to make a considered reply in writing rather than being dismissive.
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