Unedited extracts from Izzy’s diaries, detailing her experiences around the time of her open heart surgery.
The aftercare, or should I say lack of it, post- open heart surgery is disgusting. Not just post-operation but pre and also for patients who have not yet had the surgery and have to wait to have it in 5 or 10 years’ time; there is no compassion, support or understanding. Anxiety and depression is huge post-operation – did anyone warn you of that? I most certainly wasn’t warned, like I wasn’t warned about the rib pain or the sternum wires playing ring-a-ring-o-roses on my nerves! Neither was I warned about costochondritis (very, very, very common post-surgery) and also the effect my posture will have on my back from holding myself differently to protect my chest. Did anybody get warned of back pain? Or how common arrhythmias are after the heart is restarted? How many people have gone to their GP only to be told that it will get better with time, just give it time, you’ve had major surgery? And other days to be told by your cardiologist you should be back to normal??
Different people deal with things differently, but these things should be discussed with us and there should be support in place not just up to 3 months post-op, but I believe up to a year post-op. Things change, new pains/niggles arise and I think this can have a huge, huge part in anxiety and depression. Your cardiologist tells you at 5 weeks post-op that within another 7 weeks you should be living life like a normal person. Because they’ve had ohs and they have experienced the muscular spasms, the pain, the twinges that come from being cut open, pulled apart, put on a machine to keep us alive and they know what it feels like???????? The surgeons perform the operations and our follow-ups are done by the cardiac doctors, but we surely should be able to see our surgeons at least once post-op? He knows our heart best so to say, since he touched it, he worked on it and he kept us going and restarted our bodies up again.
Anxiety is huge. I’ve spoken to so many people that say they have been to A&E post-op as they thought they were having a heart attack, and I am one of them. A few weeks ago I was adamant my heart was about to stop and I was going to curl over into a ball and die. Did I? No, I’m still here today. Did they find anything after I called an ambulance? No, because it was a huge panic attack, which I am too embarrassed to admit to anyone but my partner. Why did I have the attack? Because you may notice after surgery things trigger your anxiety, unless it gets very out of control and you have them nonstop, as you start to get anxious about feeling anxious and feeling unwell.
I had anxiety pre op because they didn’t know much about my heart, and was told I could drop dead if my op wasn’t performed. Post-op I felt fine for 8 months then bam; I started to do more in my life, I went on holiday and a week’s pre-holiday. I worked myself up so much that I would be so far away from home and ‘what if’ this, ‘what if’ that, that I caused myself serious stress and anxiety, and ended up in A&E with nothing wrong but a huge panic attack 5 days before I was due to board the aeroplane. I also got so stressed I caused myself loads of back pain and also costochondritis from picking up heavy suitcases, etc. I’m sure the cardiologist told me that 12 weeks post-op my weight restrictions were lifted?????
[Izzy decided to] keep a diary, start writing down when you feel anxious, when you feel depressed, and most probably there is a link between things. As my life starts moving forward (such as, I’m moving back to London today [so] my anxiety is super-high today, as I’m moving out of my comfort zone and just want to scream, “Please someone look after me, I have had ohs”), I start to think of things that could go wrong and what ifs. A LOT of heart patients post-op think ‘What if my heart’s not fixed…’. I go back to the lack of understanding post-op and lack of warning of muscle aches, pains etc., especially in the ribs and back, which also cause anxiety for a LOT of people as they think something is still wrong with their heart, as “by now you should be back to normal”.
For people waiting to go to have their operation or who, like all of us, have had to wait for a date or be told that in 5 years you will need ohs, anxiety is still there and I’m not forgetting about you. Mine happened so quickly I didn’t have time to experience this and only slightly did I work myself into a state pre-op, but I can’t imagine how the wait is and what you feel any time your heart beats a bit funny, or you feel a bit faint due to something totally different to your heart.
I am lucky enough to speak to someone who reassures me that she felt how I do 9 months, 10 months etc. post-op, and she has warned me [about] the difficulties and expressed the same frustration I do; if it wasn’t for having her warn me about all the aches, the pains, and most recently costochondritis then I would be in the hospital more than I would be home as I’d be sure my heart was not fixed.
When I get an infection, or cold, or any sort of illness since my operation it hits me harder than it did pre-op and this will be the same with sooooo many of us but are we warned about it? Colds make me ache soooooooo much; my ribs feel like they’ve had a round with Mike Tyson and this is normal for people [who have not had] ohs to feel this way, but for us it feels worse as we have the anxiety with it and the fact that our ribs [feel like they] have [effectively] been through a round with Mike Tyson, quite literally 100 rounds, and our sternum most probably will never be the same.
Time is a healer. Talking is definitely a healer and the mind is a very powerful thing. Listen to your body and you know when there is something really not right and only you can say [when you feel] this, so when you feel very unwell mentally, physically and emotionally it’s not a bad thing to get help and support. A diary was my first way of dealing with my anxiety, as I noticed the trends and slowly I’m taking control. I started to try more natural ways when the doctor tried to put me on tablets (citalopram) – I hate taking drugs so anything I can [do to] avoid [it] I will. A huge help to me has been essential oils, more specifically geranium. It sounds strange, but even recently in Glamour magazine they showed that smelling something that calms and soothes us such as geranium can fight anxiety and the onset of an attack, and it works soooo well for me. I put it on a ribbon around my wrist so I can discreetly [inhale the scent] any time I feel anxious; [I] just smell it and it helps clear my mind and everything. Jasmine, rose, lemon and lavender all help (it works, try it). A body massage to help you relax even if you do it yourself on your shoulders after a nice hot bath or meditation is very, very good and [also] visualisation through a panic attack. Yoga has helped me a lot and that doesn’t mean you have to join a huge yoga class, but gentle stretches before bed help and YouTube has heaps of videos for this.
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