A cautionary tale. Now I am feeling more like myself again...

Never give up when you know there is something very wrong with you.

I have the energy and distance from my experience of an unexplained PE which resulted in two clots in each lung.

Before I launch into my experience and you maybe fall asleep reading this I thank every deity for the NHS because once I was in the system and an eagle eyed radiographer spotted the blood clots, I was given life saving treatment.

It was a struggle to get my condition diagnosed,over13 weeks,starting in October 2017 when I suddenly could not get my breath on a walk in the park.I thought it was my Asthma,which had until then always been controlled.I took my extra meds. and nothing happened.I was still distressed a week later ,my heart was beating so hard it hurt and it was irregular,my bp was high too.I went to see my GP who said I was hyper ventillating on my asthma meds.I saw two different GP's at the same practise in Nov. 2017 between that first visit in Oct 2017 and Christmas 2017 because unless you book weeks in advance you do not stand much chance of seeing the same GP.One of the other GP's ordered an ECG and the other,when I had had another episode of hardly being able to breath ordered an emergency appointment at the respitory clinic in hospital.I had had to fight for this GP appointment because a surgery receptionist had not deemed me as emergency appointment material.

The doctor at the clinic who I saw a week before Christmas Day 2017 said my chest was clear but I should have an echo cardiogram and a CT scan on my heart.As with the other doctors I explained my symptoms,all classic P.E as it turned out.

Christmas and my 60th birthday came and went.I was finding ways to just about cope with my breathing problems and lack of sleep.I was by now convinced it was my heart that was the problem as all the tests I was supposed to be having pointed that way.

New year,there was no sign of my ECG results being back.I ended up phoning the hospital on 10th Jan 2018 and getting them faxed,again,according to the person with whom I spoke,to my Doctors surgery.I enquired about my echo cardiogram and CT scan appointments and ended up having to make my own echo cardiogram appointment.The CT scan appointment came through a week later,for29th Jan 2018.

My appointment mid morning of the 29th Jan went smoothly,results would available in 10 days.At 3.50pm that day a hospital doctor phoned and said while my heart was healthy I had blood clots on my lungs,the cause of all my problems and to come to A&E straight away for an anticoag. injection and blood tests.

If I had not pursued the appointments,who knows if I'd have had the scan that potentially saved my life.I was described as a walking time bomb at the DVT clinic next day.I was put on 6 months of apixaban which finishes at the end of the month.It has been a rocky road,very high bp then very low bp after getting a virus,but I am breathing normally again 95% of the time,still a few heart flutters and discomfort lying down now and again but the light at the end of the tunnel is very close now.

PS To make a bad experience worse I arrived at A&E at 4.20pm on the 29th Jan got an anticoag. injection at midnight and bloods done at 1am next morning.It was a 9 and half hour nightmare in A&E especially as I had been asked to attend and was digesting the news of my CT scan results.

In retrospect I should have gone to A&E on17th Oct 2018 when it all started,but who knows what that experience would have been like.

[Hidden]

I'm sorry you had a rough time. I'll never cease to be thankful for my GP who said "It's probably nothing, but I'd really like you to go to A&E just to rule out the possibility of a blood clot.....". If she hadn't....

[Hidden]

I dragged myself into a and e on the bus when I was having breathing problems that turned out to be blood clots in the lungs about the same time you had yours and they kept me in overnight and let me go at tea time the following day.

The radiographers were lovely though when I was frightened when I had the ct scan which had said what the problem was and how it could be treated.

[Hidden in reply to Hidden]

You were more sensible than me Jo! My problem was that I thought it was asthma on that first occasion,and my GP fid not investigate any further,but I should still have gone to A&E

[amhayllar in reply to Hidden]

We all learn that essentially we were right all along. Trying to convince others like your GP is a nightmare. I think with history like ours that a blood clot/clots is the first thing that should be investigated and ruled out. Wishing you lots of good wishes x

[Hidden in reply to amhayllar]

Thank you x

[Hidden in reply to amhayllar]

That's the thing. You have to listen to your instincts like I did the day I dragged myself into a and e on the bus when I wasn't feeling well.

If there hadn't then I don't know what might have happened and I'm glad I bypassed the gp as in my view some of them are a waste of space!

[jacead]

Virtually the same thing happened to me. I had been to see various GPs with breathlessness and scary palpitations, I had called out an ambulance because I could hardly breathe when walking up my garden, none of them found anything. This continued for about a year. I suddenly collapsed on the second day of my holiday in August 2017 and had to be rushed to hospital with a suspected heart attack, although I didn't have any pain. I was saved by the paramedics giving me oxygen and then lots more oxygen in the Royal Worcester hospital. Finally I had a CT scan which confirmed blood clots in both lungs. I spent a week in hospital - they were magnificent. I am now taking Apixaban. I have nothing good to say about my GP practice - have they been told not to refer patients for CT scans because of the cost?

[Hidden in reply to jacead]

I am sorry you had such a terrible experience.Breathing is fundamental and not being able to is very scary as it a racing heart etc

I do not think enough GPs' recognise the symptoms of P.E My case could not have pointed to it any clearer than it did,my Apixaban booklet lists each and every one.I hope it is not a case of saving money on CT scans because the consequenses could be dire.