Coping with the stress of an uncertain diagnosis?

[JHutton1994]

You'd think after being left in a limbo of not knowing if I had cancer or not (biopsy thankfully clear eventually) I would be used to waiting around to see doctors, have tests, and await results, but now they're talking about me having a heart condition and I can visibly see cyanosis every time I go out walking, I am having a hard time dealing with fear, largely of the unknown, also scared that I could have a cardiac event anytime or go into HF. Called cardiology Friday, they've not even looked at referral so showed GP picture of cyanosis and sats dipping below 90 to get cardiology appointment fast tracked. Just feel scared I suppose, feel too young to be dealing with this.

[LSCE]

Hi, Waiting is awful. I hope you get an appointment soon.

[Ageingfast]

Dear JH

One of the best things about cardiology is that, if treatment is required, then the op is safe and certain. By far the worst bit is waiting.

Cardiology has super staff and brilliant surgeons. It is so much better than most departments.

Ok, recovery is lengthy, but that’s no problem because you get a little better every day.

I had a replacement valve four years ago and now my heart is as good as new. I worried for England before hand.

Best wishes

Sooty

[Murderfan58]

How old are you? Unfortunately young children can have heart problems. I only found out in 2020/2021 I was born with a small hole in the side of my heart . The hole was found after bubble echo in 2020 and a MRI in 2021 confirmed it was the only one and the connections between the chambers of my heart where intact and had strong heart function. On Flecainide as I miss heart beats and do get heart flutters and palpitations occasionally since on the tablet take Apixaban and Ramipril. I am 66.

I know it's hard waiting by I look at it this way if they where really worried then they would have you in straight away.

Just try and relax if you can and if you are worried speak to your GP or phone 111.

[StillTikking]

Hi. I understand completely what you're saying. I've had an ECHO back end of July, which shows damage and am still waiting to see a cardiologist. It is scary but I find meditation useful. If you have something that relaxes you, maybe do that more regularly?

[devonian186]

I had to look this one up.

So it may or may not be heart or lung related. Do you have a finger oximeter as that will tell you your blood oxygen levels and in turn when you need to take action.

[Shabana1974]

Gp referrals are rediculous slow. If you feel unwell or anxious go to A and E. When I noticed my heart leading a merry dance with Oxygen sats dipping as low as 82. That's what I did. The first time they kept me in to assess possible breathing problems. Discharged after a few days went a second time. Showed the videos of the drops on my finger prob. They said unless they witnessed they can't look further. He left the cubicle and then it dropped 🤦‍♀️. I started recording on my phone but luckily he walked in as it was rising. They did 24 and 72 hour holter. Which didn't show anything serious. But the referred me for echocadiogram 2 months later that Showed severe Heart Failure. But with medication I am now at moderate heart failure. Sometimes it's quicker to go via A and E

[Taviterry]

I can sympathise with your situation, and agree with AgeingFast's comment that "Cardiology has super staff and brilliant surgeons. It is so much better than most departments."

The sad, brutal fact is that all departments of the hard-pressed NHS have to determine the priorities of their patients, and I've often had to remind myself that there are people in a worse state than I am - which was obvious last time I went to my GP and the last time I walked (with some difficulty) the length of my hospital for a very routine appointment.

The Haematology department taxes my patience, with my never having received two sets of blood-test forms. (My enquiry about the last case, deemed "urgent" by the consultant , and for something potentially very nasty if very rare, resulted in him filling out a form with the letterhead of a hospital thirty miles away, and my GP nurse telling me that my local hospital might forward the sample to that one!) My only sense of "entitlement" over the past 20 months arose when, after an initial excellent assessment from Haematology, it became clear to me and my friends that something was far from right. I rang the department and wasn't allowed to speak to even a nurse because one hadn't been allocated to me!

A little later, a visiting cousin insisted on taking me to A & E, and two months later I called an ambulance that took me to a day-ward. On both occasions I had prompt excellent treatment, with ECGs and blood tests, the results being added to my hospital records, but Haematology was oblivious to these until I mentioned them in my (rushed) three-monthly telephone appointment with a doctor.

Most of the above is very self-indulgent of me, and I've scrolled up to your post several times to see if I can comment positively on your circumstances. I guess that it doesn't help much when I say that you are far from alone in being anxious about long delays, whether it be for referrals, appointments, tests, results, diagnoses and prognoses.

I hope that you get answers - and reassurance - very soon.