3rd time unlucky!

Hi all,

I've just had my 3rd episode of 'unprovoked PEs'. I'd just like to get my story off my chest (so to speak!), I hope that's ok? I'm a 36 year old female. when I had the first (and worst) episode back in September 2014, I was 34; 18 stone (at 5'3") and a 'social' (how silly is that word in this context - I can't think of anything less 'social' these days!) smoker. I was increasingly breathless and in a huge amount of chest pain for 3 months before diagnosis (I visited my then GP 13 times in 11 weeks because I knew I was really sick, but she couldn't find a cause and kept telling me to go home and rest). Eventually, I asked if it might me psychosomatic as it felt incredibly real to me - insomuch as I could barely sleep (which had to be sitting up in an armchair) for fear of my children coming downstairs in the morning and finding me dead. After 3 months, it would take me 2-3 minutes to climb the stairs (only 11 of them!), taking my daughters from the car park into school moved from being a 3-5 minute job to taking upwards of 25 minutes. As my GP was so dismissive I started to become convinced that it must be in my head, but it just felt SO REAL. I became anxious, I couldn't sleep, I was convinced I was going to drop dead at any moment and I didn't dare share how I felt with anyone as my GP was SO sure that there was nothing there to treat. After 11 weeks, my Mum (who is a GP Practice Nurse, who has also spent 20 years as Head Sister in a busy City A&E department - but who also failed to put 2 and 2 together as my apparent risk factors were so low, and she hasn't stopped beating herself up since, but has massively made up for it in help, love and most helpfully - childcare!) insisted on coming with me to my latest GP appointment. She worked at my surgery so my GP took her seriously when she told her about my symptoms. My GP then decided that perhaps I was severely anaemic, which could be causing the breathlessness. She took my bloods, sent them off and I should hear within 24 hours. I get the call from the surgery - yes, I am anaemic, but not so severely as to explain my symptoms. I was at the end of my tether. I had been increasingly breathless for nearly 3 months and at times, was so breathless I was convinced I would die. I'm a pretty typical Brit though, so rather than go "all dramatic" and call 999 or turn up at A&E, I called 111. After around 15 minutes of form filling, the girl on the phone tells me "An ambulance is on it's way to you..." What?! I've been asking for help for 3 months and suddenly I need an ambulance?!? She explains that I have all the symptoms for Pulmonary Emboli, and I explain to her that I have 5 & 7 year old daughters who need collecting from school! I pick up the girls, get my husband to finish work early and take myself to A&E. I was admitted within minutes - I could barely walk 5 metres without panting. They took arterial bloods and I was sent for a CT within 40 minutes of arriving. Aaaaaand - I'm "riddled with clots", according to the Consultant. They stopped counting at 40, apparently. They start me on Clexane injections and Warfarin immediately and I end up in hospital for 10 days. Full disclosure - I am a codeine addict; I spent 10 years abusing Nurofen Plus tablets, taking up to 80 every day. I'm also an alcoholic, triggered by Post Natal Depression. I have been clean and sober for 4 years now, but am constantly vigilant. In hospital, they offer me codeine as pain relief (and if you've had severe clots - particularly for a long time - you'll know how incredibly painful they are - and I've given birth twice - first time round was 23 1/2 hours with just gas and air and I'd rather do that again than have PE pain for the same amount of time), so I explain to them that I'm an addict, in recovery and I'd prefer to take something non-opiate based, such as Amatryptaline. There aren't a lot of Dr's about, I get desperate ad agree to take the codeine. The pain subsides, I'm injected with Clexane, I start on Warfarin, spend a week or more in hospital - away from my husband and children, and slowly start to improve. Once I'm discharged, I'm back to my GP the next day. She's embarrassed, "Your SATS were good", "You had so few risk factors", "You wondered yourself if it could be 'in your head'", "I'll never forget your case, this will help me to be more open-minded and to consider unlikely possibilities." I liked my GP, but I was glad she felt bad. I had endured 3 months of terror (and that's not too strong a word to use), so much so that I now suffer from PTSD. How ridiculous is that? I've not fought in a war, been caught up in a terrorist attack or had some horrific crime carried out against me. I've just been really sick and my GP didn't believe me. I'm a 'middle-class', church-going, HR Advisor, married with 2 children. Yes, I've had addiction issues, but I sought help, got help and stuck with it. The PEs are not associated with my 'addict status'. If you met me, you wouldn't know. I'm kind, I'm hard-working, I volunteer for several children's charities and work for my church. I'm a loving wife, mother, daughter and sister with a close family who have all helped me through my addictions and have believed in me enough to stick by me through some rough times. We are all incredibly close. So, I'm now 36 years old, I stopped smoking after the first lot of PEs and have lost nearly 8 stone. I have massive scarring on my lungs which makes me constantly short of breath and 2 further episodes, the latest one this week, haven't helped. Thanks for reading (or not!), I just needed to vent! If I can offer any help or advice, please feel free to ask.

4 Replies

  • Hi

    Hope things are going a bit better now and your are getting more help now I was lucky that the clots started in my left leg and bit broke off and lodged in my lung but my breathlessness I put down to my ongoing Lung condition and battled on until I could Hardly walk that was back in March and only coming to terms with how my life is now oh sorry should have said I am 81years old but up to Christmas last year quite healthy and worked with a charity which I still try to help out but now very hard to do ,so know some of what you say can be in our mind with the PTSD you question everything so I wish you well and it sounds as if you have a great family which is good take care look after yourself keep in touch

  • Thanks for sharing your story. It's good that you have shed 8 stone, as it sounds as if you were seriously overweight and this and smoking would be a factor in your illness. I am sure you will continue to improve from now on - you have a lot going for you!

  • Good on you for being so honest and open. You've really trod a difficult path. Hope and pray you are on the road to recovery and the worst is behind you. Just goes to show we need to trust our gut feelings about things not being right and to persist with asking to find answers. Well done.

  • Thank you so much to the 3 kind people who have left messages for me. Although it's always sad to hear about others going through difficult times, there is certainly something positive to be said about those people being able to offer understanding and support - all of which is very gratefully received!

    My next question to you guys would be is 'How have you tried or managed to come to terms with the impact on your life that this illness has made?' As I said, I had a successful career in HR before all of this but being so poorly has massively changed my mindset and I no longer want to spend my life in such a cut-throat environment (nor am I capable of putting in the hours - I'd estimate that I'd struggle trying to work anywhere in excess of 3 hours a day with my health as it is - plus there will be days when I simply am not able to get out of bed). This leads to it's own issues, such as income - I was earning nearly £40k a year in a non-urban environment, which meant I was doing pretty well for myself. My husband was a Head of Department in a school in the city along from our small market town and earned well himself.

    Since I was diagnosed, I have been unable to work. We moved 200 miles to live near to my Mother so she could help to care for our children (it was initially a temporary measure, but after 6 months of being a 'weekend Dad', my husband moved down to live with us.) I'm not 'healthy' and it's unlikely I ever will be again. But I'm ready to work and have just about managed to navigate my own prejudice and apply for a Dinner Lady job at my kids' school. I can't bring myself to tell anyone I've applied for it though - I've heard that 14 of us have interviews for one role and if I don't get the job, I suspect I'm going to want to crawl up into a ball of shame... Arrrgh! Please keep your fingers crossed for me! xx

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