A YEAR HAS PASSED!

I remember Nov 11th last year. I was in Bristol spires hospital for a virtual colonoscopy to have my 5 year routine check to make sure nothing has come back in the colon. SO no great shakes, thought be better to have a virtual one… But they couldn't give me medication as I was on a heart tablet so went ahead without and the air they put inside you is expected to be a little uncomfortable, but I was in excruciating pain!… I could hardly breath…. I was saying to myself "man up for goodness sake" its remembrance day... think of all those that gave their life for this country and you are thinking you are in pain!… I was getting quite cross with myself quietly!… It was over and i still was in pain, the nurse was concerned and sat me in the waiting room… I remember standing for the two min silence in the hospital and nearly passing out… I travelled back home to cornwall… Pete promised me lunch out but I couldn't stand and felt so poorly, which was odd and shouldn't have happened there was no reason for it. 

So the next 48 hours my breathing pain was worsening, so on the Friday after the Wednesday i went to the GP who rushed me down to hospital with a suspected perforated colon. I was poked and prodded and admitted. About 10.30pm that night the doctor came around and said although i was in pain on breathing in, they would not scan at the weekend, and i seemed sensible so go home and rest… i thought it was odd, but thought might as well be at home if they don't know what is the problem is and no tests over the weekend. Over that weekend i got steadily worse and on Saturday night i was up most of the night as could not breath laying down, Sunday was the same, and the pain by Sunday night was really bad my breathing was so shallow i felt faint. I was rushed back in on Monday morning and told the hospital my breathing was worse. They scanned my abdomen and said nothing wrong, i couldn't seem to get through to them that i couldn't breathe. I don't moan very easily so if i say i am in pain its not a small pain, its serious. I tried to hold it all together, but Pete was loosing the plot a bit as he could see how much i was struggling and they refused a CT scan on the grounds they didn't think one was needed, by Monday afternoon i was in tears the pain was horrific, i saw all sort of doctors but not a respiratory one or a Cardio one. 

By the evening I was in a distressed state and my husband said they have to act, as I was worsening and getting weaker, they sent me home again very late Monday night to return for an ultra sound scan on the Tuesday morning, I was surrounded by a team of consultants, I kept repeating to all medical staff that I cant breath it hurts and I described the feeling inside as a death rattle. The ultra sound lady said nothing wrong with me I asked why I can breath and she didn’t know. I then pleaded with a junior doctor to listen to my chest, she said quizzically sounds like a plural rub, I explained it was getting worse and asked well pleaded  her to help me, you would think i was in a third world country. I couldn't breath for goodness sake, this wasn't going to end well!

To cut a very long story short, I collapsed in style in the hospital which made everyone start running around and taking notice, I was rushed down for a CT dye scan and was found to be multiple pulmonary embolisms on both lungs and i was lucky to be here at all at that stage.

I was given various treatments and injections and given a piece of paper saying 1 in 4 PE's are fatal and that more may occur quickly and the next one I might not be so lucky… my head was in a spin, what is happening to me, what was going on. I couldn't take it all in. It was this day that changed my life forever as I know it. Nothing from this point was ever going to be the same. That night was horrendous I didn’t sleep I was terrified, my husband stayed until late and I stayed up all night worried if I would see my children in the morning, and trying to think what Pete needs to know… all i could think of is that he didn't even know Steve has pineapple in his pack lunch!!!! I mean what is all that about… not the more useful info like where the bank passwords are etc etc….

The reason the medical staff missed this initially was because its not high on their minds to think of a PE in a fit healthy person that hasn't been hospitalised with an operation, I never sit still, I hadn't been on a long flight. SO none of the tick boxes were ticked, I didn't fit any form. It happened for no reason. Although I have been reading that if you have AF which I was I also have, but they failed to diagnose it until later, this can cause the blood to pool in the heart and therefore can create clots which can result in PE if not on blood thinners, so unconfirmed  in my case and I haven't got the fight in me to prove it!

So now it is a slow process of recovery which I am still in, everyone in the medical profession tells me how lucky I am, I know this, I struggled with the process of getting diagnosed, and the lack of medical support from there onwards. I am a professional and I thought I would be able to speak out for myself, I was obviously too poorly to do this. I spent the following months and still have to visiting private respiratory and NHS cardiology and NHS/private neurology, haematology to try to understand what has happened and how I can recover and to what extent. And what the implications are long term.

My PE was unprovoked, we will never know why for sure, I struggle with this also. For the first few months I suffered severely with PTSD and still have this to some extent with anxiety and thought I had had a stroke or gone mad, my comprehension was non-existent, I can't read more than a paragraph at a time and I certainly can't retain what I had read or written. I am a director of an Architectural practice so I am unable to work to full capacity, everything I do takes longer as I can't think. It is a worrying time for Pete , Laura and Steve. After establishing through the private referral I hadn’t had a stroke, I began to improve and end of March this year I tried a small holiday. This ended with a major bleed and an emergency blood transfusion on the way back in Basingstoke hospital, when I started to go into organ failure; I now have new tablets after an 12 week every day visit to my doctors for injections. I am now beginning my recovery again. 

Some days are good and I fool everyone with my smile and short conversations and avoid situations I will not be able to cope with. Pete is quite good at side lining things for me and anything with stress attached to it seems to put me back a long way physically, I can't think coherently under pressure so this doesn't help. The body and mind is a powerful thing!

I think the reason to put this down at this stage is that it has been a year and every minute of every day I have gone over what happened I can remember every little detail and question it, seems bazaar that your life could change in a heartbeat, literally a heart beat! So I am dumping this out of my head as its taking up room!! Room I need for better things!

I am doing fairly well after a rough week training for the Henley 10k had a no show twice last week in the gym and swimming after a collapse (new word) kind of week which happens... but back on it this week and hope everyday I achieve a little something more. I just need to get really good at managing it,  so I can get the most out of every day!