I find myself every few days chasing something up, making calls, getting updates on progress with queries, looking up records or requesting records, rarely have a week where not waiting for something.
Whether that’s one of the three hospitals I’m under at present (I know why not make life harder for myself😂) not to mention the GP and then there is work assessing me and needing to be updated (they are supportive though). And now benefits to sort.
You really have to be organised, proactive and above all persistent. And When you feel at your lowest!
Tomorrow morning - tidy up my lever arch file full of letters / records and file any I’ve been just shoving in. Already spent about an hour ringing to sort online access to a test result! Might need another folder soon!
It’s a full time job managing a health issue. 😊
Any point to this post? for those in similar situations - just keep going. Keep chipping away. Any progress however little is progress❤️
Totally agree with you there fishface101. Definitely a full time job having a chronic illness.I used to have a massive folder of hospital letters! 😊 I have the NHS app now so I can see and read on my medical records 😅. I find I spend hours some times worrying about upcoming appointments and future surgerys just have days like that! ( Anxiety 🙈). Do you find you sit and research about your condition on Internet for hours ( I mean on NHS and BHF websites not Dr Google well not all the time 😂😅. Aw so stressful having a health issues innit.
So glad I'm not the only one 😅. Yeah some of mine isn't aswell I think hospital admissions mostly 🤔😅
It is a full time job looking after yourself. When you have an illness, especially when it has effected your heart you become more engrossed in its effects on you mentally and physically. You want answers. You want reassurance. A way forward but it's hard. The trouble I find is the medical teams do their job and say you look well of you go but you are not right. Not normal especially if it is congenital. You take the medication as you are told but then they cause side effects which you then have to battle with, try and live with. Yes you spend hours doing investigations to find solutions. Things you can do.
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Simple response - I agree / recognise with everything you’ve said ❤️
You've summed it up exactly, and it's even harder when you're under 3 or 4 hospitals and a clinic! It's literally a full time job, very very tiring & very confusing at times! We have a couple of folders, one of each of my husbands two main conditions but when there's a cross over between the 2 conditions I can never make my mind up as to which folder to put the info in!! 😭
Yes completely agree we need to be our own advocates, though I wish that wasn't the case. So far my husband's heart attack was missed 3 times, he was told he had a muscle sprain, then strain, then a virus, until he went into cardiac arrest!! Then his cancer was missed until I said to the gp why has this not been investigated and just recently he was told his severe chest pains were muscular & given pain killers when in fact he had pneumonia!I now try to understand/learn as much as I can about his medical conditions otherwise you get swept under the carpet.... so to speak!
Hello, I think I've been doing this so long since the mid 1980s (as an adult), that I look at it differently. I dont manage my health in the way that many on here do, I know what issues I have (off by heart), I trust my Cardiologists and the Surgeons as if my life depends on it, which it has on more than one occasion. I have a decent relationship with the GP/Medical Practice, who do there bit when required. Paperwork, I could probably, put my hands on it, if I need something, but, I dont file away. If I did, I would have files full. As for my Medical Records, I've never accessed them, and have no intention of doing so. I'm not that interested in them, particularly the bits from a young age.
The way I see it, I let the Professionals do their jobs and do as I'm told. Thats my way of of managing my health and not to worry if something changes or goes wrong. This has served me well to date, so, I dont presume I'll change any time soon.
To be honest, after 35+ years, if I worried about it, I'd have gone bonkers by now.
I just have a different perspective.
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That sound a good strategy. I suppose you have to trust the professionals. I might have to take a leaf out of your book. I suppose as I have never had any major medical problems up until now it is all a bit new and scary.
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What I would say is that it's not a strategy for everyone. If I was new to it in this day and age, who knows what my perspective would be. As I'm older these days, I suspect it would be much the same as others, and my sense of mortalty heightened.
Trust has to be earned, after 25+ years with my current Cardiologist, I do what he says without question. My second surgery was complicated and had many unexpected issues, depending on who you speak to in my family, they consider the Surgeon either a genius or a clown. My third surgery came 4months later, I was offered a different surgeon, but I went for the same surgeon, because I trusted him.
That's a long time to be with the same cardiologist, no wonder you have complete faith in him. My husband has been with his cardiologist since 2012 & we have complete faith with him too. When you've been with them that long they know who you are, you're not just a name on a file etc & that makes a big difference.
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I think the Internet has not helped. I agree that the main topic in my head is mortality. I know you should not think like that but when you read stuff on Google, you tube and other sites. They always mention the worst. But I have noticed that alot of the information is from America. If I read up about my congenital issue on the nhs Web site it's just one paragraph. You do have to trust the doctors and specialists because they see things and can say that's ok, that's stable. Of you go we are happy. But deep down mentally you are not. I may of said this in the past but it is bit like you are on an aeroplane I carnt fly but I have to put faith in the pilots up front, but if I get in a car with someone I don't know. I can drive but they, don't drive like me I can get panicky, being a passenger. It is hard to calm the mind down.
I think we are both under the same hospitals but I never hear from or see my cardiologist. I believe that we are under different cardiologists which goes to show the different approaches between cardiologists even within the same team. I waited all day for a call from the cardiology nurse yesterday only to find that the appointment had been cancelled and moved to next year. I’m genuinely pleased that you get such good care, I just wonder where I’m going wrong. Ps, I hope you are feeling better. X
Hi, Yes, it can be different with Cardiologists at the same hospital. Mine has kept a close check on me since the third operation, more so this last couple of years with Heart Failure coming to the fore. I've an appoinment with him on the 27th and HF Team on the 28th. Two operations up for discussion, a replacement pacemaker and closing a fissure/Shunt, which I keep putting on the back burner. I just want to be left alone by them to be honest.
It seems odd that they've cancelled your appointment until next year.
Thanks, I'm doing ok at the moment, no further hospital admissions for bleeds, just the little blip of the EF dipping to 30%. New meds are making a difference, but, Bisoprolol was increased to 2.5mg last week, and I can't really understand why. More bloods tomorrow as potassium was high, so meds could change.
hi. Pleased that you are doing better and hope that your blood tests went well. The HF team are great but they discharged me last year. I had an echo in March and just got a letter telling me stuff that I don’t understand. I’m taking that the cardiac nurse postponed my appointment until next year as a positive thing. Tbh I struggle with one of the cardiac nurses (not the HF team) anyway as she always gives me the worst case scenario. I hope all goes well with your appointments. Let me know how you get on.
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I guess I’m still new at this game regards the heart issue and as very few doctors know about my CHD / take it seriously I have had to push, research and get thing’s progressed myself otherwise I’d still be waiting for Diagnosis. There’s no well trodden route or protocols/ thresholds for my condition like there is for the more common but very serious heart conditions. So I have to do the leg work. 👍
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Everyone has to find a way through it the best way they can, and I can appreciate you have to push otherwise you'd risk nothing happening.
In many ways for me starting off in the pre-computer age, never mind the Internet probably gave me a different perspective. I never had the option of reading up on things or whatever. Trust was and still is fundamental to my way of thinking, but, its been tested more than once. For someone who's had multiple surgeries and associated heart issues, I've not once watched a video on heart surgery, just got no interest on how they do it.
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I think there is something in what you say, maybe we have too much information can lead to overload - too much of anything is not a good thing! I hope to take a more relaxed approach sometime soon 👍
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