I have to mention these things first, to both haematologist and GP, it makes me feel left out, I guess it’s just as well I ask….
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Addax I had 3 covid jabs last year. After each one I had awful palpitations, they went on for 2/3 weeks. I had Mitral regurgitation for 20 years, my mum died from it when she was just 57 yrs old and so they called me in for my yearly check. I had an echo and the usual ECG. The cardiologist said all looked fine and she couldn’t detect my mitral valve problem and said go ahead with the autumn jab - which I did last Tuesday, I have palpitations again although not so bad as last year. No one seems interested, saying it’s just a side effect. I’m seeing my GP on Monday, feeling so alone about it all
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No, in the early days of the pandemic but not any more
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No, not here. I have a telephone consultation every three months and it’s never brought up. I go in once a month for IVIG and I need to do a Covid test before, but vaccination isn’t discussed.
I’ve just had my sixth jab, must be basically immortal by now, and no-one ever asks!
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Hi @Angie the palpitations must have been scary, I can imagine that you feel so alone with it all, you are not alone now you have us around you.
Please let us know how your GP appointment goes on Monday and please tell him what it has really been like for you
Be kind to yourself.
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Never, not even my haematology check- ups unless I volunteer it
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The only time it’s been discussed in consultant appointments is if I’ve asked a question relating to it. The medical team have never brought it up independently. My GP has never been in touch or discussed it with me at all. I do get regular texts from the GP practice about the flu vaccine and being at greater risk (despite already having had it), but nothing relating to Covid.
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I’m on routine follow up almost 3y post alloHSCT and my consultant has checked that I’ve had my covid vaccination each time I’ve been eligible (had my 6th in September) and has measured my post vaccination antibodies after each (finally had a response last time!) I cannot fault the care I’ve had from both the transplant centre and the haemoncologist at my DGH, from diagnosis (Acute Myeloid Leukaemia) until now. I haven’t seen my GP at all.
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My consultant did ask about my Covid jab and flu jab and I also had messages about getting the latest Covid jab and flu jab from my G P.
Addax I had the exact same thing happen to me in the night with the feeling of a punch to the chest and extreme breathlessness. This was about ten days after getting Covid and I was having tremors in my legs and chest tightness and body aches, this all despite the neutralising monoclonal antibody drip which I received. I did not realise it was a heart problem and presumed it was a lung deflating. We went to A & E a few hours later as I continued to feel clammy, breathless etc.
Oxygen levels were okay but an ecg caught Atrial Fibrillation in full flow.
It is now nine months later and I continue to have AF and have just had a 24 hour ecg but not had results. Sadly I was told that I would get a call to the AF clinic quickly- within a week- but a hospital administrator cancelled this and referred me back to my GP. Apparently they are overwhelmed with new cases after Covid. The doctor who saw me in A & E phoned me to say she was sorry and she had referred me on to Cardiology.
I am on medication to lessen the AF but my Haematology Consultant is not happy and has written to Cardiology directly.
I must say I do not feel that I have been very bad since but it does continue as I slip into sleep and sometimes when I rest in the day my heart starts a jig. If this happens several times in a night I do feel weary and my chest feels tight after it. It is strange because this does not happen when I am exerting myself.
Research in the USA seems to indicate that it is left over inflammation which gets stuck in some of the fine tissue and that brain fog post Covid is part of the same mechanism. That does kind of reassure me that it should not get worse and may indeed decrease over time.
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No, hasn’t been mentioned at any of my Heamo appointments since diagnosis. I raised it once to make sure I should have it, but otherwise it’s not discussed.
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I have seen my haematologist twice since my diagnosis, and there has been no mention of the covid vaccine booster. I haven’t seen anyone else.
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Hi, I received my diagnosis of ET 4 years ago and am on Hydroxycarbamide and have never been asked about covid or flu vaccinations.
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Hi Nichola 75, thank you for asking, I am okay at the moment , it is just frustrating that my Consultant and CNS are still not doing face to face appointments just a brief telephone call every 12 weeks. It is not easy to discuss how you are feeling in such a quick call.
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Hi @JAS perhaps with your questions and how, your symptoms you how you are feeling written down and being ‘pleasantly assertive’ make sure you say everything you want and need to. A telephone appointment is a two way process.
If your medical team do not know your symptoms and how you are feeling it must be difficult for them to make medical assessments.
Look after yourself
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Hi @JAS. that is really tough. My last two appointments have been face to face and it is much easier - especially getting that physical examination. It does help me to feel more reassured.I always had video calls during Covid which was helpful. @Erica goves good advice. I never met my consultant off the call until I’d asked everything. However, it took me a while to feel confident doing this.
Have they said when they might start then again?
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Hi @Hmc63 I just wondered how you were doing now as I have been thinking about you.
Try and look after and be kind to yourself
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