My experience of my DVT/PE - Fern's Story

In 2015 Fern gave birth by c-section, in what she was led to believe to be a ‘textbook delivery and recovery’, so when she developed pain she presumed it was just a pulled muscle.

I gave birth via Elective Caesarean Section on 13th October 2015. I had what I was led to believe and understand to be a textbook delivery and recovery, with only a complication of a post-partum haemorrhage of 1.15 litres during the procedure. I was given seven days’ worth of blood thinning injections post operation to cut my risk of developing a DVT.

On 31st October 2015 I developed what I believed to be a pulled muscle in my left buttock, as I was very mobile post-surgery. I did not have any swelling at this point. I continued to treat this as a pulled muscle.

I had an appointment with my Midwife on 5th November 2015 to be discharged from her care. I asked whether the pulled muscle could have anything to do with my spinal block or surgery. My Midwife seemed to think that if I had any issues with my spinal block this would create an intense headache and it was unlikely to be anything other than a pulled muscle. I was not at this stage feeling any breathlessness or anything other than leg pain.

For the first time I checked my leg and realised the whole leg was purple and swollen from my groin to my foot.

On the evening of 9th November 2015 I developed a severe more intense pain of the buttock pain in my left hip and thigh. I could not move my left leg. I decided to go to bed and realised that the pain was unbearable. I called 111 and they made an appointment with the out of hours GP for 8.25pm that evening. Very quickly, within a matter of minutes post phone call to 111, I became extremely breathless and much worse. For the first time I checked my leg and realised the whole leg was purple and swollen from my groin to my foot. My mum called an ambulance.

The Ambulance Service stated that they would send an ambulance as soon as one became available and stated that they couldn’t specify a time. Five minutes later they called me back and said that I had a GP appointment and should attend that as they couldn’t tell me when I would get an ambulance and it was unlikely to be any time soon.

The trauma of asking them “am I going to die” repeatedly, them not answering me and rightly stating “let’s just get the results back” still haunts me.

My husband thankfully drove me to the hospital instead and I was seen very quickly within A&E, by this time I had completely lost the use of my leg. The staff in the A&E Resus diagnosed me quickly with a massive DVT in my left leg and multiple clots in my chest. However, the trauma of asking them “am I going to die” repeatedly, them not answering me and rightly stating “let’s just get the results back” still haunts me and is a source of mental trauma to this day.

I spent 4 nights on a high dependency chest ward and then the consultant said that as the chest clots weren’t putting major strain on my heart, I would be able to go home Wednesday. This caused me great anxiety as my leg was still swollen and I was still immobile. They obtained some crutches and tried to get me mobile. I protested about going home (even though I had a four week old baby at home). The doctor wrote my discharge papers but eventually agreed to get a further scan on my leg after I became emotional and outlined my anxiousness at returning home. Thursday afternoon the doctor came back to me and said, “it’s a good job we didn’t send you home”.

My thoughts always go back to the fact I was urged to move around as much as possible.

My doctors contacted another hospital’s vascular doctor at Southampton. They advised that I should receive treatment on my leg with them and that I shouldn’t move, in particular be transferred via ambulance without a filter in my vein to stop any of the 50cm clot in my leg breaking off any also going into my chest and killing me. This procedure to insert an IVC filter was done in the early evening on 12th November 2015. My thoughts always go back to the fact I was urged to move around as much as possible between Tuesday and Thursday and even on the verge of being sent home - which could have killed me like a ticking time bomb.

I was then transferred to Southampton Hospital on Friday 13th November for treatment on my leg. I had a catheter in my knee to dissolve the clot. This worked at first, then I re-clotted and had to have it again. In total I had five procedures in five days. The drugs put me at high risk of severe bleeding and I was warned on numerous occasions that I should prepare for the chance of a hysterectomy if that were to happen - thankfully it didn’t.

It took its toll on my mental as well as physical health.

I was discharged on Tuesday 17th November, in a wheelchair and unable to walk. I had seen my newborn just two times in eight days. Unable to care for or feed my baby, in constant pain, exhausted more than I will ever know and teamed with the trauma of almost dying was just unimaginable and took its toll on my mental as well as physical health.

I am left with constant pain and swelling my entire left leg and groin, but that’s ok - I'm here.

I regained the ability to walk fully by January 2016 and finally bonded with my baby. I have been to the doctors and hospital with numerous DVT scares since, but time is certainly a healer. I used to be scared the clot was “coming back to kill me”, now I take what happened in my stride and hopefully am considering another child. I am left with constant pain and swelling my entire left leg and groin, but that’s ok- I’m here.

General thoughts:

  1. Awareness of the risks associated with this condition and pregnancy is low- my own midwife, someone who the NHS says to contact if you suspect a DVT did not spot, or even hint to me to get checked at the possibility. I’m not blaming - but it’s not enough, it’s a big maternal killer and teaming up with the Midwifery council to raise awareness would be a great start
  2. Mental health provision for women in this situation, with raging hormones and new-born babies needs to be better.
  3. NICE guidance was changed on the amount of blood thinners given to patients with certain risk factors in April 2015 - but my hospital said it wasn’t compulsory to follow, so instead of receiving seven days, I should have received 10 according to the guidance - would it have changed the outcome - I will never know. What I do know, which is crazy is that I have friends who haven’t taken these thinners seriously or take them when they have had sections - because they don’t know the risks.
  4. DVT is associated with being immobile - despite a C section - I was far from immobile I was actually as fit as a fiddle and in no pain and running about like a loon - the perception that you can’t possibly have a DVT because you haven’t been sat down for 13 hours needs to be changed.