No, this isn’t just one of those headlines designed to suck you in and then it turns out to be lies, damn lies. I am a survivor.
I want to explain where I have been the last 10 months. I’m sorry I haven’t posted here for so long.
I thought 5:2 was a life-changer. Well, yes, it has changed my life. I wasn’t feeling particularly like I needed any other life changers anytime soon but that’s not how life works and this year has been quite a rollercoaster for me.
Shall I start at the beginning, or just sum up? To hell with it, if starting at the beginning could save someone else’s life.
I’d like to point out at this moment – and before you go jumping to any conclusions – that fasting has had nothing to do with my near death experience! If anything I suspect it may in part have been responsible for my survival. This post has nothing at all to do with fasting, but is the story of my experiences this year.
Many of us will have heard the phrase “pulmonary embolism” and know it’s something medical. But how many of us actually know what one is, what causes it, what impact it has and what the odds of survival are? Well, now I do.
It started just after Christmas last year, or at least the noticeable signs of it did. The first time it wasn’t too bad. I woke up and pulled the bed back together – suddenly my heart was racing and I couldn’t breathe. I had to lie down. It felt a bit like an asthma attack but the racing heart was new to me. After a few minutes to calm down, I went downstairs to do some more chores – I changed the cat litterbox, or at least I tried to. The same thing happened again. I spent the rest of that day on the sofa, hardly able to talk for lack of breath and with my heart racing (thank you hubs for buying me a lovely Withings Pulse activity tracker for Christmas, this little device has also played its part in my still being on this earth). By early evening I was fed up and decided to go to the doctor. This was actually quite tricky as we lived down a lane and had to walk a way to the car – I’d barely even made it down our short hallway to the bathroom during the day. I made it and the doc (not my usual one) told me it was a chest infection and gave me antibiotics. That’s their answer to everything. I remembered that I’d been aware of my heart pounding in my chest (palpitations) for a few weeks on and off, so he also recommended I be tested for a thyroid problem.
The next day I wasn’t feeling so bad, and got on with my life. The blood test came back clear and I busied myself preparing for our house move.
Then, the bad news started to roll in. Problems with the move. My cat had untreatable cancer. My husband’s job security was looking sketchy. Not the best time in my life I have to say. One morning I went to get breakfast and as I came back up the stairs I started to experience odd symptoms. I can’t even recall now in what order they came exactly. I couldn’t breathe. I was gasping like a fish and it hurt. I was hot, very hot. I took my dressing gown off. I felt sweaty, sick and shaky. I blacked out. This was just before work so I think it must have been around 9am. I didn’t make it to my desk until almost 10. When I came to, on the floor at the top of the stairs I was shivering – freezing. I pulled my dressing gown back around me and dragged myself to the bed to lay down. A few minutes later as I felt better I went to my desk to get on with work. I gave my mum a ring to tell her about my strange experience. She likened it to panic attacks she used to have in her 30’s and promptly turned up with some Rescue Remedy and kind words. She told me I looked grey. I said I felt fine, which I did, aside from my racing heart. I rested for a while in the afternoon and later my husband helped me upstairs. He tells me it took me about 20 minutes to get up the stairs, I had to keep stopping. By the time I got to the top I felt sick again and came over sweaty. He rested me against the toilet in case I was sick and went to get me a glass of water. When the hot flushes passed he helped me get to bed and I spent the evening lying down just trying to breathe. It was horrible. I wasn’t up to cooking and instead he got us a chippie. Most unlike me, I had no appetite at all and barely ate anything. It seemed too much to have to eat AND breathe. I think we debated calling the NHS helpline but decided to wait until morning.
Morning came, and with it a resting heart rate of almost 140. Yes, 140 – on waking. Lying down. That’s not right. It should be 50-70, if not lower. I didn’t sleep well and as soon as I woke up I looked up the details of our local walk-in GP as it was a Saturday. Hubs dutifully took me down there and I struggled my way to the car, and then from the car to the hospital. I felt like a 90 year old, I was walking so slowly. Actually I think a 90 year old would have beaten me hands down. My heart did ease off a bit at that point, I guess knowing someone medical was going to check me out calmed my nerves a bit. I told the doctor how I was feeling – the racing heart, how it felt like the physical sensations of anxiety but that I wasn’t feeling anxious in my head. I explained about my current life stresses, but that I had them all in order mentally and wasn’t worried about them really. The doctor was great (I thought), she did an ECG and talked to me about panic attacks and how to breathe through them. That might have saved my life too. She couldn’t give me the meds she wanted to because of my asthma. She did however put me on a nebuliser (it didn’t help) and gave me some lovely, lovely sleeping pills. My O2 saturation was checked and though a little low she wasn’t worried. She said the stress was affecting my asthma as well as my body in general and told me to come back the next day and see how I was.
I slept like a log that night. I met a hamster wearing a beret, he was drinking a strawberry milkshake at some posh milkshake bar. He seemed pretty down to earth for such a strange looking fellow in a pretentious establishment. That’s how good the sleeping pills were! Or maybe it was the lack of oxygen.
My heart wasn’t quite so racy the next day and I didn’t struggle so much to move around. The doctor was pleased with my progress and left me to get on with life. I dosed myself up nightly on the pills and munched on Rescue Remedy pastilles during the day to calm my ‘anxiety’. This was the week just prior to our move and let me tell you that packing up to move house when you are seriously ill is not an easy task. I can’t thank my mum enough for coming to help with it. I had no strength. I had to sit to pack, I checked my pulse before and after I did anything, if it was below 100 then I would get on and do things. It was never below 90. It took ages to calm from the usual 135. My husband had to move all four of our fish tanks to their temporary homes with friends and family all by himself, I felt so guilty not helping when at the time we thought it was ‘just anxiety’ and that I should really be physically capable. We finished packing around midnight before the move and thank goodness we hired a removal firm to do the heavy lifting.
Moving day came and went. We got to the new house, we unpacked. There was no internet connection for a week, so I did a lot of unpacking and moving of furniture by myself while my husband was at work. We had new furniture delivered, which the driver needed me to help unload! I went on to assemble it. I wasn’t feeling that much better in terms of strength or breathing but my heart was a bit less racy so I just got on with it all and assumed things would get back to normal. We moved the fish tanks to the new house together and I think this could have been the beginning of the end. I was knackered from moving tanks & heavy pails of water & rocks. I had errands to run so went out to town and rushed around to get everything done. I woke up the next morning with my heart rate sky high again. Oh no.
I felt guilty taking a raincheck from our plans with friends that night, it seemed like an excuse rather than a reason. I just wasn’t up to it. I spent the day on the sofa and read about ways to slow your heart rate. I attempted to submerge my face in cold water to provoke ‘the diving response’ to slow my metabolism and heart rate. That didn’t do anything. I tried breathing techniques. I fussed the purring cat (rest in peace, sweet Phoebe). Nothing helped. It was Monday the next day and I decided to go to the doctor as my heart was still racing in excess of 130 when I woke up. I called my mum to take me to the doctor as I could barely get downstairs much less walk to the GP surgery 5 minutes away. I think the people who saw us must have thought mum was really poorly. We walked so very, very slowly and even that was difficult.
This time the doctor (the third one) got it right. He noted that I could barely get two words out without having to stop to breathe. He listened to my chest, he tapped my back and told me to say “99”. An ECG followed and then we were told to go straight to A&E. He said it was faster if we drove than waited for an ambulance. I didn’t really consider at this point just how touch and go this might have been, I was just relieved that something was being done.
A&E were waiting for me and saw me immediately. I felt like an awful queue-jumper. Any Brits reading this will know what I mean, we’re nothing if not good at respecting queue order! The day in A&E was a blur of concerned doctors faces, big words, CT scans, X-Rays, horrible amounts of blood tests, injections and ultrasounds. I had a pulmonary embolism – blood clot on the lungs. A big one. Actually, multiple. On both lungs. It wasn’t good. They considered using a thing called a ‘clot buster’ on me, which apparently they told me they only do in life & death situations due to the high risk of stroke (I have since been corrected, it is also used in less touch & go situations, if it can potentially prevent lasting organ damage). In the end they opted to pump me full of anticoagulants and keep me in for the week.
I’ve never stayed in hospital before. Time goes so slowly and they feed you too much! Puddings with lunch and dinner. It was delicious and such a treat not to have to cook. I can highly recommend the food at Dorset County Hospital. I was there until the end of the week – went through plenty of tests on a daily basis and woken through the night to check my blood pressure, O2 levels and change my drip etc. Quite an experience. They wouldn’t let me walk anywhere, I was wheeled to the toilet and wheeled back to my bed.
I left hospital with a bag full of Warfarin (Coumadin) and some Clexane (Heparin) needles along with the expectation of returning to normal the next week now I was treated. How wrong I was.
Well, I did get back to my desk the next week and started to catch up with my work but life was, and is, anything but normal.
It’s now been almost 8 months and I still struggle on a daily basis. I couldn’t fast for months, I could do very little physically for the first few months. I regained weight. People brought me cakes and chocolates. We ate a lot of takeaways and processed food because I had no energy to cook. I had to cut back on my vegetable intake due to the meds. Life is so very different for me since I survived the PE. One of the most frustrating things is the fact that it is an invisible illness. I look OK from the outside, you wouldn’t know I’m unwell. I can’t even make it back up the hill to my home. I can walk to the doctor now but I have to get a lift back (I don’t drive). I don’t get out a lot. My days are spent working (I manage around 4-5 hours on a good day), resting (around 3 hours) and preparing dinner. I don’t have the energy to do much else. If I overdo it one day I pay the price physically the next day – difficulty breathing, chest pains, numb arms, racing heart. It’s not pleasant.
But, I’m alive. I like to think that the weight I lost through fasting helped me to survive. My heart was under so much strain that they were worried it wouldn’t recover. I dread to think what might have happened if I had still been at my heaviest when this happened. I’m not happy about the weight I’ve regained, but I am fasting again. I seem not to be losing really, but at least I’m not gaining anymore. I don’t know if Warfarin affects my weight or not.
So where did all this come from? Well, the jury is still out. I have my last (I hope) consult with the haematologist in a couple of weeks and he’ll have the results of my blood test then. Initial results suggest I have a genetic clotting disorder which tends not to manifest until this sort of time of life. He thinks I’ll be on anticoagulants for life. I hope I can lose this weight again and that one day I’ll be able to walk up the hill unassisted. It’s funny how much we take for granted.
I could write so much more about how my life has been affected by this condition, but as I need to save some energy for more work & for making dinner, I’ll link you off to an awesome blog post by another PE Survivor who has described it so well.
Next Monday, October 13th is World Thrombosis Day. A day to raise awareness for blood clots. One in three people will die of a pulmonary embolism if it isn’t diagnosed and treated. Know the signs and if you are worried that you may be affected, persist in seeking an accurate diagnosis. If I hadn’t persisted with the doctors I would be dead.
Want to know what a pulmonary embolism looks like? Here’s one of my CT scan slices. Imagine I’m lying down and you’re looking through me from the feet up. The big black areas are my lungs. The circled grey blob is one of my bigger clots. Yeah, that’s not nice is it?