I was born 9th December 1970 with ventricular septal defect and had surgery when I was 3 months old. A debanding procedure was later performed when I was 8 years old (1979). I have been on heart medication all my life attending routine regular appointments where the heart was being monitored by ECGs, echos or 24 hour tapes.
During such tests it was recommended in 2004 that I be fitted with a pacemaker as even though I generally had a slow heart rate it fell considerably whilst I was asleep. I soon began to get palpitations which grew stronger and more frequent, lasting longer than a few seconds, sometimes my heart would speed up whilst I was at rest which as well as very uncomfortable was also scary. I assumed these sudden bouts of stronger palpitations were due to the recently fitted pacemaker and therefore one day I walked into The Heart Hospital Pacing Clinic to be seen.
Once monitored, they advised that I could not go home that night as they would have to take me into theatre for a cardio version as my heart had got stuck in atrial fibrillation and was beating at over 200. Thankfully after the procedure it did revert back to a sinus rhythm and normal appointments were resumed. Until 2012 when it was discovered in yet more routine tests that the heart had again gone back into atrial fibrillation and another cardio version was required.
age 44, ventricular septal defect
However during early 2012 I began to have cramp like feelings in my legs and “pins and needles” type sensations infrequently at first however the cramps grew stronger and more frequent to the point where I was dragging my legs along especially, the right one.
My daily commute to work from Kent to London was a 10 minute walk from home to the railway station. Alight at London Bridge then walk 20 minutes to my office. A one way journey taking 1.5 hours minimum. July 2012 was the Olympic year and I remember on many occasions whilst there was a carnival like atmosphere around me I was literally holding onto London Bridge because I was in so much pain as for the majority of my commute I was now practically crawling. I was on many days reduced to tears through the pain.
This continued from Spring through Summer into Autumn and I was progressively getting worse. I have always had cold feet and had put it down to bad circulation because of my heart condition however my feet were now constantly freezing cold to the point where they were numb. I was holding onto walls and furniture to help me walk whilst all the time dragging myself along as by now my legs were heavy and painful. Embarrassingly I didn’t go to the doctors once - I can’t explain why!! This was going on for months. Maybe because I didn’t for one second put this down to my heart condition after all I was now 41 and apart from a few blips I had been fine (up until now).
The turning point came one Saturday morning 17th September 2012 I was at home and both my legs went from under me and I dropped to the floor. As I couldn’t get back on my feet I resorted to dragging myself to the sofa, hauled myself up and rubbed my legs to try and get some sort of sensation back. Both my legs and feet at this time were stone cold, numb and in severe pain this continued for 6 hours! The following Monday I still went to work! Having explained the weekend to my manager he was adamant I refer myself to MY GP immediately as by this time I had also received my admission date to have the cardio version that October both myself and my manager at that point thought my condition could be related to the heart being in atrial fibrillation. My GP signed me off sick and in the meantime ordered blood tests to be carried out again no-one actually at this stage knew what was happening.
After my cardio version which incidentally was unsuccessful, ablation was considered but decided against. I returned to work on a phased return basis end of November. Still in atrial fibrillation I crawled my way through 2 weeks of commuting before my very nervous manager asked me to refer myself back to the GP and get myself signed off again until I got myself “sorted out”. I think they thought I was going to die on their office floor! I was looking “white as a sheet”.
Having had these leg pains now from April to November now 7-8 months, I was uncontrollably limping badly and my body was leaning onto my left hand side. I was willing to try anything. I was sleeping with hot water bottles to ease pain, having acupuncture, stretching exercises, (taught by acupuncturist who thought I had trapped energy!) I had massages which actually made things worse. I was on strong painkillers every 4 hours. One evening I took pictures of my feet changing colour from red to pale yellow within minutes leaving me in severe cramp like pain for the remainder of the night. I often slept sitting up as I was unable to lie down. Walking alone was now a thing of the past as on one occasion I got “stuck to the floor” unable to physically lift my leg to put one foot in front of the other as the crippling pain shot up my back, I clung onto a railing for 2.5 hours that day unable to move a muscle. My husband had to “piggy back” me home as my legs felt paralysed. I explained the symptoms to my GP who suggested I could have intermittent claudication. This whole time I had no bloating of feet or legs and my legs didn’t change colour.
That year Christmas and New Year came and went whilst I was dosed up on painkillers. I was unable to speak to my cardiologist as he was on holiday through the Christmas period. I contacted him straight after New Year and explained the situation he recommended I change my heart medication as although not certain this could be the cause. The Bisoprolol was changed to Digoxin and almost overnight the severe pain eased off. I was asked to contact him in a couple of weeks if I was still in pain. During my appointment with Dr Swanton he saw me limp into the clinic. He diagnosed a very low pulse in my ankles and referred me to the vascular surgeon Mr Agu. The next few months entailed going into London from Kent twice weekly having dopler scans on both legs, a CT scan, stomach scans and consultations.
By March it was official…..I had severe intermittent claudication. The main artery in my right leg was completely blocked from the groin to past my knee. This explained the cold feet and agonising pain as there had been no blood flow. Although not as severe, the left leg also had blockages. During the scans they also discovered I had 8 very large fibroids which due to their positioning could also be contributing to the pain by applying pressure at the top of the arteries. Thinking back now it scares me that I dragged myself along all those months I would be totally out of breath, my heart would be pounding, palpitations were more frequent and a lot stronger I had put so much extra pressure on the heart that was already in an irregular rhythm, without actually realising it!
I was put back onto warfarin which had been stopped in October after my cardio version procedure and having referred to the scans Mr Agu advised that I had 3 main options. i. stay as I was (which wasn’t an option for me as I needed to return to work), ii. major artery bypass surgery or iii. try and walk as in some cases this had helped. Personally I only had one option and that was the third to try and walk.
I had struggled in the colder months as my feet would become numb due to poor circulation. Now in the summer sun of 2013 I also struggled to walk as after a few minutes of walking I would be drained of all energy (being on warfarin could have been a factor). That summer was another very painful one similar to previous year but difference being this time I knew why I was in pain. My 6 monthly scan showed that the blockage had broken down considerably however I was still in considerable pain with very very sore toes to the point where I couldn’t put my foot flat down, some days walking on my heels. Mr Agu explained I had “trashing” in my toes this was the process where the blockage was successfully breaking and dissolving into my system and flowing into my toes. Unfortunately, I had to grin and bear it. As I was now in the habit of taking pictures of my feet and toes to show the consultants during my appointments I was asked to email them so that they could be used during future student training. Which I did email.
During 2013 I also attended appointments with the gynaecologist Dr Silverstone to investigate the 8 large fibroids that had also been discovered and to ensure that they weren’t causing any pressure to the main leg arteries. Initially the scans showed no pressure was being applied and that they would be left alone unless they grew in number or size. Over the course of the year my monthly cycles had now become painful lasted longer and were now very heavy (again warfarin was mentioned as a possible contributory factor) I was suffering from monthly episodes of menorrhagia. Explaining the tiredness and feeling drained all the time. By this time it was also suggested I start iron tablets to avoid myself becoming anaemic. In July - August 2014 the scan showed that I now had 11 fibroids and the original 8 had grown in size explaining the huge heavy stomach I had now developed. Again photo evidence was sent for my file and future training purposes at uclh. Surgery was suggested to me (hysterectomy) this would alleviate the pain and discomfort I would likely to be in every month. At the age of 43 I struggled to accept such a huge operation.
The alternative was to have monthly injections to bring on menopause this would although shut down the ovaries would also gradually help to reduce the fibroids and eliminate the heavy, painful future menstrual cycles. These were started in September 2014.
To date I’m slowly but surely trying to get back to normality. However I still struggle to walk short distances without eventually my legs starting to hurt, becoming heavy and ending up with a limp. I have shooting pains even at rest. Throughout this experience my anxiety and stress meant I suffered sleepless nights, this is still the case and now with the added hot flushes! Turning over from one side to another in bed is generally a very slow 4 point turn. Damage to joint and muscles has now been suggested which would make sense as my constant background numbing and aching pain doesn’t seem to be reducing as simple bending down and moving around the house is still very slow. Until further tests and maybe physio is carried out I won’t know any further. I am unable to return to work until I’m 100%. I’m now 44 and recognise that I’ve had a huge wakeup call as previously I’ve always put my health after work. I appreciate now I am very, very lucky to have come through this, my story could have been very different.
I cannot thank the consultants, nurses and all support staff in all the departments I dealt with enough. There wasn’t one day that either myself or my husband felt that we weren’t being treated with the utmost confidentiality and urgency we required. Honestly there are no words to praise their professionalism and wide range of experience.