New Symptoms - racing heart and exhaustion

[Jet76]

Hi there.... I'm new to the forum. My daughter who's nearly 17 has been under a cardiologist since she was 9 months old with an ASD and narrowing of the pulmonary valve. In 2014 she had heart surgery to close the hole and last year was completely discharged which was great news. Fast forward to a couple of weeks ago and she had an episode where her heart was racing and her whole body drained of energy. She went to the doctor and they have heard a heart murmur. She has now been referred back to her old cardiologist but the appointment is not until July and this weekend she had another episode and she's still trying to recover from it as she feels weak and exhausted. After an episode she can't walk as no energy. I do not know what to do as the GP hasn't been very helpful and I'm so very worried about her!??

[meadfoot]

Bless you what a concern for your both. Do you know the name of the cardiologist she has been referred too. If so I would ring his or her secretary and explain your concerns and could they possibly bring her appointment forward and if not put her on a cancellation list. An open conversation sometimes illicit an advantage, worth a try.

Alternatively if you are in a position too you could go privately to get her seen in a matter of days hopefully for a first consultation. Best wishes and let us know how she gets on.

Ps: If things a going down hill there is always a and e assuming you are in the uk.

[Fortepiano]

I would agree with meadfoot - get in touch with her cardiologist's secretary. Always handy to establish a good relationship with them! Alternatively most hospitals with a congenital cardiac service have a congenital cardiac nurse you can phone.

A private appointment with the same cardiologist will be £200 or so and could speed things up.

Do also go back to her GP who should actually be able to arrange some tests himself like a 24 hour holter monitor. Some hospitals also have open access ultrasound in which case he could arrange an echo.

Murmurs rarely mean anything needs doing urgently. I had mine for 12 years and probably earlier if anyone had bothered to listen! But it's worrying for you both not knowing what's going on, and her unpleasant symptoms certainly need the cause identified and dealt with particularly now she's had a repeat episode.

Have you thought of getting her a Fitbit so you have a record? They're not 100% accurate but do give an idea.

I also suggest phoning the BHF nurse helpline.

All the best to you both