So im a member of guch uk im not sure how many of you know about GUCH but its amazing and you should definetly check them out. They recently changed to the somerville foundation charity. anyway on their forum someone messaged a few people asking about anxiety and she was experiencing it badly even though her operation was when she was young and she now lives her life normally but has bad anxiety about her heart. i just wondered if anyone else had experience with anxiety. Here is my views on it but i also wondered what others views on it were as it might make us all feel a bit more normal.... below is my reply i gave on GUCH its very long so wow if you actually get to the end you deserve a medal.
im probably about to go on a massive rant as i feel so strongly about this so apologies beforehand if i do...
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 wasnt warned like i wasnt warned about the rib pain or the sternum wires playing ring a ring o roses on my nerves! neither was i warned about costocondritis (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 arrythmias 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 theyve 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 ive 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 im still here today. did they find anything after i called an ambulance? no because it was a huge panic attack which i am too embarassed 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 non stop as you start to get anxious about feeling anxious and feeling unwell. (im sorry im still talking )
i had anxiety pre op because they didnt know much about my heart and was told i could drop dead if my op wasnt performed and post op i felt fine for 8 months then bammm i started to do more in my life i went on holiday and a week 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 an 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 costocondritis from picking up heavy suitcases etc. Im sure the cardiologist told me 12 weeks post op my weight restrictions were lifted?????
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 im moving back to london today my anxiety is super high today as im moving out of my comfort zone and just want to scream please someone look after me i have had ohs and i start to think of things that could go wrong and what ifs, A LOT of heart patients post op think what if my hearts 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 thinnk 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 an im not forgetting about you. Mine happened so quickly i didnt have time to experience this and only slightly did i work myself into a state pre op but i cant imagine how the wait is and what you feel anytime 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 nine months ten months etc post op and she has warned me the difficulties an expressed the same frustration i do and if it wasnt for having her warn me about all the aches the pains and most recently costocondritis then i would be in the hospital more than i would be home as id 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 without ohs to feel this way but for us it feels worse as we have the anxiety with it and the fact that our ribs have been threw 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 definetly 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 this so when you feel very unwell mentally physically and emotionally its 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 im taking control. I started to try more natural ways when the dr tried to put me on tablets (citalopram) i hate taking drugs so anything i can avoid 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 anytime i feel anxious 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 visualisation threw a panic attack. Yoga has helped me a lot and that doesnt mean you have to join a huge yoga class but gentle stretches before bed help and youtube has heaps of videos for this.
i have tried loads of homeopathy (really really not recognised within medicine) and i would suggest finding an amazing chiropractor if you get back pain etc even if it comes and goes as my chiropractor identified to me how bad my posture was and was able to use the mctimoney method to help get my spine back into place (it had moved post op and was perfectly straight pre op) Its interesting that i went to her pre op and post op and the effects the operation still has on things such as my core balance my spine and my shoulders even now. I also found that talking long walks and fresh air helps loads with my anxiety.
i apologise if this post is negative but i just think something definetly should be done.
speak up. breathe. laugh and reach out!
all the best