There’s lots and lots of posts around about mental health and opening up about issues around mental health. This is me opening up about my mental health. I’m not afraid to admit I went to the doctors last week to seek help about anxiety and coping with Isla’s condition.
When Kerry was pregnant with Isla I was prescribed diazepam to help my anxiety with Isla’s ‘heart failure’ and waiting for her to give up. Back then I couldn’t take them because, even though my heart was doing constant flip flops, I needed to be ready and able to take Kerry to hospital. This time I couldn’t have them due to being Isla’s carer and again having to be compus mentis to keep her alive. He wanted to prescribe beta blockers but was hesitant as I have asthma. The other option was speaking to a therapist, but as my mental anguish isn’t irrational it wouldn’t be something that can be ‘cured’. I did speak to the hospital psychologist when we were in Alder Hey but the answer to ‘So what can I do to help?’, was always ‘make Isla better!’
I am on nearly every Long Qt and Cardiac Arrest support group Facebook has to offer. I would estimate that every other post is one revolving around anxiety. Torsades, the arrhythmia associated with Long Qt, is a latent arrhythmia so the threat of it is constant. It’s therefore completely understandable that those who have Long Qt (and their loved ones) are in a constant state of worry.
There are people on there worried about being able to exercise, work out, play sports, basically do things they enjoy. For most Long Qt types, exercise can be a trigger. I can’t imagine the fear of going for a run (that in itself is pretty scary) and knowing it could kill me (last time I went for a run I thought it would!). It’s all very well someone saying ‘hey you’re on beta blockers, you’ll be fine!’, it’s still ridiculously scary.
Other people worry about loud noises and surprises. People don’t/can’t set alarm clocks for fear it could kill them. So death by alarm clock or killed by your boss… tough call. This extends to things like bonfire night, New Year’s Eve and birthday balloons. I know dog owners’ worry about fireworks and the loud bangs; imagine worrying that the bangs from the fireworks could kill you, your partner or your child. Same goes for balloons at parties. Kids love balloons, kids also like popping balloons… not surprisingly this is terrifying for parents of little qties who have Long Qt 2 or arrhythmia triggered by surprise/shock.
Of course, you’ve then also got the night time fear that comes from Torsades caused by rest. This is my biggest fear. Despite having a pacemaker to keep her heart rate from going too low, Isla is at most danger during rest. Consequently, I am rubbish at sleeping when Isla does. I remember chatting with one of the cardiac liaison nurses about not wanting a child’s home bedroom to be like a hospital room… yes, yes I do! Bring on full monitoring! We’ve just spent a small fortune on a wearable heart rate monitor for Isla to give me peace of mind at night.
It doesn’t really end there. There are lots of people who have icds (internal defibs) who have anxiety over being shocked by their devices. By all accounts it’s the equivalent of being kicked in the chest by a horse. This is the reason they are hesitant to put icds in young children in the UK. Picture little Jimmy running around the play ground, having fun, heart rate rises due to excitement, then ‘Ka-pow’ 💥 (no, not an attack by Adam West’s Batman) all of a sudden his device shocks him. Inappropriate shocks can cause severe psychological damage. On that basis I’m glad Isla doesn’t have one, I wouldn’t want her to be terrified of running or enjoying herself over fear of an inappropriate shock. On the other hand, I’d love her to have one to save her if the shock is appropriate. She does have a pacemaker, and I know that people who have a pacemaker can feel when it kicks in, and it’s uncomfortable, but I’m hoping that since it’s all Isla knows that she’s used to it.
I don’t know if it’s worse having Long Qt or being a parent of a little one with it. I don’t blame myself for her having it, I know it wasn’t my fault, but it’s my responsibility to keep her alive. This is where my main anxiety comes from. One of my Long Qt friend’s posted about the stress of having to give life saving meds 3 times a day… for 7 years and counting… without missing one dose, as missing one dose = death. That’s scary. I’ve only been doing it for nearly 3 years and it’s hard. If you think how many times you’ve had antibiotics and accidentally forgotten to take it once or left it in the fridge somewhere? It wasn’t life threatening to forget. If I forget Isla’s Mexiletine it’s game over. No resets. ‘Life is no Nintendo game’.
I also have the responsibility of doing Isla’s ecgs and adjusting her dose. I technically experiment on Isla. So far since leaving hospital I’ve managed to increase her beta blocker and reduce her Mexiletine… hopefully to avoid her seizures (a completely different worry ☹️) down to the lowest it’s been since HDU. I’ve done this after chatting regularly to the world’s leading pharmacokineticist on Mexiletine and discussing my theory on milk and it’s impact on absorption. Unfortunately no one can tell me what to do but as Isla has starting having 2 lots of her drugs after her meals rather than after milk, the issue has presented itself inadvertently. Her dose of 8mls without milk has caused seizures. As a result, I’ve spent the last few days calculating a dose for her to compensate for the lack of milk and hoping it is enough to keep her safe; but low enough to avoid her having seizures. Literally taking her life into my own hands. I don’t say this to big myself up, it’s simply that no one in the world can do anything to help, so it’s on me. I am learning more and more every day about the way Isla’s drugs work and how different things affect them and her. I just hate that I have to learn with such high stakes and such pressure.
I am grateful of all the support I have, and many offers for more (thank you everyone), but being away from her for ‘me time’ (not like that you filthy animal 😈) is mostly counterproductive as I am more stressed being away from her. I hate leaving her and while I do occasionally trust her with other people, I am terrified of something happening and not being there to make decisions and hold her hand.
I always go by the theory of its better the enemy you know, so knowing about Long Qt is half the battle, however a battle is still a battle and I’m a lover not a fighter! I will tell you all Isla has had a good week and post nice pictures of her smiling, but as with all shows, no one really sees the tears behind the scenes. It is ok to be afraid and to admit you need help. I am trying to accept help, and do more things to relax, however, if you offer to look after her to give me a rest and I say no, don’t take offence, I just don’t trust you 😉