I had a complex case of DORV-TGA with some other issues. I had one open heart surgery in infancy and then one in early childhood. My parents first took to to follow ups but they were all the same(some residue but nothing major and no changes) But i’d always feel so anxious before those checkups that my parents decided it wasn’t worth it when i was older.
Now, I haven’t had a visit for almost 7 years. I recently started being a bit hypochondriac and noticing all kinds of random “symptoms”. I really want to go to a doctor just to make sure i’m still okay. But I moved to a different country in the meantime and I have no idea how to approach it. I’m scared I will be labelled as dramatic and asking for unnecessary tests, considering i’m pretty much perfectly healthy right now.
Any advice? I have pretty severe anxiety but especially when it comes to this
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Reading your post I am not sure which country you are in so not sure how there systems work
I can see how your parents may have thought in one way that as you got so anxious it was a idea to not take you to anymore follow up appointments but seems in a way that did not work as you still have the same fear
Follow up appointments are very important hopefully everything will be fine but if for some reason there was something wrong the sooner they catch it they can put it right
I am an anxious person and I to fear going to appointments but I know I have to and if you dont you still worry something could be wrong like you seem to be so I think just face the fear and go to appointments
Please do not think anyone will think you are been dramatic as they will not think that at all
I would enquire how you get to see a Doctor and go and talk with them tell them all you have done in your post and let them check you out I know this will cause a lot of anxiety but if they tell you everything is fine it will be worth it as hopefully you will feel reassured which is what I think you need
I thought with any congential heart disease, you're supposed to see a cardiologist once a year for the rest of your life? You need to confront the fear by seeing the doctor otherwise, you will just constantly be scared of much worse, like you are now, which is no life at all. Don't gaslight yourself into dismissing what could be quite legitimate medical concerns as imaginary. There's enough hack doctors doing that already.
I don’t know to be honest. My condition was stable (until i was 13 at least) and the residue was so insignificant i’m able to live a normal life. The GP in my home country never mentioned it either so I assume the frequency of checkups can vary.
I’m afraid they will think i’m dramatic because of the way i act. My anxiety shoots up around doctors. Last time I had to go for an unrelated visit i started basically shaking and could barely speak. I also was very close to crying and the doctor tried to comfort me which was embarrassing. I’m afraid the next person won’t be as empathetic and they will just label me as overdramatic.
But I definitely need to go, I mean 7 years is a long time. I just have very intense anxiety and keep putting it off
Is there someone you can take with you in case you get upset and who can explain things to the doctor. I completely sympathise as I feel like you do about doctor appointments but they will realise you are very anxious. Please see your GP and you'll probably get referred to a cardiologist to get a check up. If you are quite new to the system I'm surprised they didn't give you a health check when joining the practice.
Im a university student so all my family is away. And I feel like taking one of my friends with me would only make it worse.
I’ve never actually been to the practice but it’s a big one with like 20 different GPs so I assume they don’t review every file. And I also didn’t go into details so it perhaps doesn’t look as serious.
I visited the practice website and there was some advice that you should see a GP if your chronic condition worsens. Which it technically didn’t since i’m pretty much fine. I’m scared they’d tell me off for wasting their time
They would not tell you off for wasting their time, explain to the receptionist what you want and she'll either get you an appointment with a doctor or nurse or a telephone appointment to discuss it. If you are at uni there will be health advisors etc that can steer you in the right direction and help you get information.
I hope you can overcome your anxiety. Until you can, then you could have a chaperone to help you through your ordeal. When you get to see a cardiologist you will be in a safe place. I go for an annual check/including two scans and the whole procedure is very well or,ganized and with minimal waiting.
As you are in the UK as your GP yo be referred to the cardiology department at your local hospital. As you need a complete check up . Please don't be scared it's for your own peace of mind to have a thorough check up. Plus get answers to any questions you have or any worries . When it comes to your health it's important to have regular check ups especially if you have a long standing condition. Plus any tests that you are eligible for as early screening for anything is very important.
There's an old saying ignorance is bliss it's not it's just ignorance . I would much rather know if there was something wrong with me and I can deal with that knowledge and get the help I need. At the moment waiting for referral back to my cardiologist and for a bone density scan.
People underestimate how important peace of mind is. Because without it our minds always go to worse case scenario.. Please ask for the referral .
Hi, I too have congenital heart disease but mine was fairly simple. I understand the stress and anxiety before appointments but ultimately this is your body and your life. It is so important you keep well and to ensure that the follow ups are really important.
With your condition you need to be seen by an ACHD adult congenital heart disease specialist at a specialist centre. These are set up specifically for people like us in adulthood and the staff will be supportive and understanding of your anxieties.
You won’t at all be making a fuss as they will be relieved you have come back under follow up care.
The Somerville foundation have a list of specialist centres that your GP can refer you to directly.
If you let me know what region you live in I can forward details of nearest centre.
Please go and get referred, as time goes on things can change and if caught early much easier to get sorted
Thanks. I’m just worried asking for specialised care will be considered entitled and dramatic. Since there are actually acutely ill people and i’m most likely completely fine. I’m in Manchester.
you absolutely won’t be being dramatic and they will be relieved that you are back in the follow up system
The specialist centre for adult congenital heart disease in our region is based at Liverpool heart and chest hospital but the consultants do a clinic at Manchester Royal also
Here is the link with phone number so your GP can refer you
I am not medically trained. Any opinion I offer is based on personal experience accumulated over many years.
Fear is a natural response. Mostly it's helpful. Sometimes it is not. It is a difficult thing to overcome because it is instinctive; a natural reaction to perceived, not always real, threat. It's also a reaction that happens fast within the body, well within the time it takes to blink.
When fear gets in the way of a sensible course of action, it must be dealt with. I think you know you need to deal with it. A way forward for you might be to first contact your GP for a referral to a cardiologist (your GP won't be able to deal with monitoring/assessing your heart issues). Try not to be anxious at this stage; it's just administrative/box-ticking.
Second, at the same time, you could ask your GP for a referral to your local area's Psychological Wellbeing or Talking Therapy Service. Explain that you have a deep-seated fear response to further cardiac investigation that has prevented you from undergoing regular monitoring in the past, but you realize that fear must be overcome. If you cannot get anywhere with a referral, you can call 111 and select option 2.
Third, you could talk to a cardiac nurse from the British Heart Foundation about your specific condition to get solid advice about where you're up to with your condition and what's likely to come next. This won't involve direct intervention. Good information can dissipate imagination-based fear. Here's a reference to the relevant contact page:
Take notes. Always use a small notebook and pencil (pencils don't run out of ink) during any consultation to note key points and act as a prompt for your questions. The act of writing has the effect of calming stress as it distracts the instinctive brain. Also, most people forget 80% of the information told them during a consultation as soon as they walk out of the room. Notes help with recall.
The irony is, the more fear we feel, the more cortisol and adrenaline is pumped around our body, stressing what might be an already compromised circulatory system, as well as the kidneys and brain. That's why we can choke/freeze/stammer/cry when we're supposed to be exchanging information during a consultation. Our brain is busy prepping us for fight/flight/freeze or fawn. Many freeze. Chronic stress is also known to be extremely unhealthy. Fear is just a feeling generated in our instinctive, reptilian brain. Unwarranted fear can be overcome, with practise, steady breathing and acknowledging the feeling, respecting it, but then consigning it to where it belongs - in the background as a warning that you appreciate but do not need at this time. You know what you must do and that it does not need fear.
I realize your situation is not an easy one for you. I hope my offering is helpful and that you feel able to ask for a cardiologist referral as soon as practicable.
(different account because i lost the previous one)
Thanks for the reply. I’m already being treated for anxiety but clearly it’s not perfect. I’m mainly worried about not being taken seriously. The tests and everything do stress me out but i think i’m able to prepare for that so it’s not that bad.
I agree with bridgeit that your fear is stopping you from getting help from a doctor, but i think you need to deal with this or it will keep getting in the way
it sounds like you might benefit from some counselling to help you consider how you could get past this fear
please consider this, counsellors are not doctors, they are like a friend you pay to help you deal with a problem 🙂
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