Where to go with worsening fatigue.

[Taviterry]

I'm afraid this is a bit of a personal rant (sorry!), but I'm having trouble seeing the way ahead.

My TAVI in August 2023 was initially successful, but eight weeks later I started to experience fatigue. My heart surgeon didn't think it was anything to do with the valve (though my subsequent exchange of emails with the valve manufacturer said it could be). He referred me to a private gastroenterologist, who could find no reason for my condition. Eventually NHS Haematology diagnosed cardiac haemolytic anaemia, but not before two visits to A & E. Last Monday (the 19th) one of its clinicians rang to say that he wanted me to have an urgent blood test for something rare and nasty, but forgot to send me the necessary form, which I eventually got by email on Friday.

This morning I contacted my GP surgery about a test, saying that I felt bad, and was given a telephone appointment for September 3; the first available date for a hospital blood test is September 9.

Both Haematology and Cardiology say that I should go to my GP with any developing issues. Some months ago, I couldn't talk to anyone in Haematology because I hadn't been allocated a nurse, and the ambulance driver who took me to A & E reckoned that I should have gone to my GP who would have arranged an appointment in a day ward.

During my "journey", I've tried to avoid a sense of "entitlement" and to be aware of the problems within the NHS. But I'm finding it difficult to know what to do next if I continue to deteriorate.

[Taviterry]

Ah! I sent a polite, plaintive note to the practice and got a prompt, sympathetic reply back from a GP, who noted that "the situation sounds stressful and complex", adding that he'd booked a telephone appointment tomorrow morning with the head of the practice to discuss, and "to clarify the information and it has to be with an inhouse doctor to get the appropriate tests ordered locally. I work external to the practice".

[Taviterry in reply to Taviterry]

The appointment has just happened, with the GP arranging a blood test for Friday. (She said that I was "a rare case".) Contrary to what the ambulance driver had told me (above), that I should have gone to my GP, she said that I had done absolutely the right thing by going to A & E.