Survivor Spotlight: Julie Cinders Hewitt

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The only illness or condition I have ever really had in my life was eczema. I did not realize bigger things were around the corner for me.

I had my DVT nearly 7 years ago. Just before New Years Day, I had the most horrendous pain and cramps in my leg.  It radiated down to my heel. Instead of paying attention to my pain and cramps, I carried on until January 2nd.  I then went to the doctor who sent me straight to the hospital where I was diagnosed with a DVT.  I was sent home with Fragmin injections and Warfarin. I was to take them for 6 weeks. I was never educated or told about DVT’s so I had no real concerns. 

On February 21st,  I was told I was highly unlikely to have anymore clots. I was never educated or told about PE’s at this time either.

Four weeks later,on March 22nd, I had a bad backache.  I went to my doctor who told me to take Ibuprofen and rest. It seemed to get worse. 

On March 24th, I went for a meal.  On my way home, after walking 15 meters, I couldn’t breathe. I couldn’t walk and my legs felt like lead. An ambulance was called and I was taken to A & E (UK Emergency room) where I was waiting for a doctor. I was sent for an x-ray but all the porters were busy so off I walked. I ended up clinging to a post, crying, as I felt so ill. Breathing and moving were so hard. I was moved to a ward where I was given my results of multiple bilateral pulmonary embolisms. I was told that I was being moved to ICU.  They did not have a bed for me there.  I was very sick and they didn’t want to send me to another hospital. At that point, I still didn’t know how lucky I was. I was wired up to machines and a nurse sat with me all night. The following day, a doctor told me I was lucky to be alive. I was sent for scans and heart scans. I spent 2 weeks in the hospital on Fragmin and Warfarin. I struggled to keep my INR in range without the Fragmin and was later changed to Apixaban. 

I had no symptoms really. On the same night I was admitted, a young pregnant lady came in with the same as me.  Sadly, they didn’t make it. I had bouts of guilt as to why I should have survived when two lives were taken. Thats when I realized how serious blood clots are. My anticoagulant nurse was no help at all.  I was told to not eat any vegetables, etc. I sat crying and all she said was here’s your appointment for tomorrow.

I found your group on facebook and a UK one too.  It’s the members who helped me on my journey.  Without you, I would be a bit of a mess. Silent killer is the right name for it for sure .

Here’s a BIG THANK YOU to you for all the help you have given me. It has been amazing xx

Survivor Spotlight: Amanda Nicholson

On November 2018, I was 31 weeks pregnant. I have had hypertension for a decade and was warned by my midwife that I was at high risk of developing preeclampsia but this was my second pregnancy so I wasn’t too concerned. I had a normal delivery without any complications with my first child.

On the morning of Monday, November 19th, I went to a routine midwife appointment which showed my blood pressure was very high. My midwife suggested I go to hospital. I arrived at the prenatal clinic and my blood pressure had risen further; I was starting to feel very ill. My body started to fit and the decision was made to be transferred by ambulance to another local hospital which could better support having a preterm baby in the event that he needed to be delivered early. The next couple of days I was monitored and given blood pressure medication around the clock.

On Wednesday, November 21st, I was informed that I had developed preeclampsia and my baby had stopped growing as my placenta was failing. The only option was to have an emergency caesarean section which was performed later that day bringing our healthy son, Theodore, weighing 3lb 4oz into the world.

By the end of the week, I had made a full recovery and with Theodore cared for in the Special Care Baby Unit (SCBU) I was discharged from hospital.

A week later, I started to get searing pain across my abdomen which I put down to the after effects of the caesarean section.  Within a day, the pain was so unbearable I could hardly move and couldn’t sleep. The pain had also started to radiate down to my legs. I went to A&E thinking it may be a kidney infection. When I reached the hospital to book myself in, I was in so much pain I could hardly say my name. Bloods were taken and I was told I would need to stay overnight whilst they investigated what was happening to me. The pain continued to increase and overnight my right leg completely swelled and turned purple. The doctor told me this looked like a blood clot and took some bloods to do a D-dimer test which came back positive for Deep Vein Thrombosis (DVT).

The following morning, I was given an ultrasound on my right leg which showed a clot which started in my calf and went up my thigh. A further CT scan showed that the clot had continued to travel and was in my main vein the vena cava stopping just before my lungs. I was visited by various specialists.  Each specialist told me that due to the extent of the clot it would almost certainly travel to my lungs or heart and that they would do all they can for me. I couldn’t quite comprehend the gravity of the situation and was in so much pain I think I blocked out the severity of what was happening to me. I had already had a traumatic ordeal developing preeclampsia and having to deliver our son early, only to be told that my life was still in danger.

I spent 11 days in hospital in the worst pain I have ever experienced. By this point both my legs had swollen due to the restriction of the blood flow and my liver and kidneys were showing signs of distress as the clot was blocking the blood flow to them. I could barely stand up let alone walk. I had to get around the hospital including visiting my baby in SCBU by wheelchair.

After discharge, I was at home for eight days but the pain and swelling increased in my legs rendering me completely immobile.  I was taken back to hospital by ambulance. This time I had a new consultant who fortunately had a vast knowledge of thrombosis. A CT scan was repeated and showed no change in the size of the clot. The rivaroxaban was not working for me. I was put back on the enoxaparin injections, my legs were also wrapped in compression bandages and I was still wheelchair bound.

I felt completely helpless, it was three days before Christmas and I knew I wouldn’t be spending it at home with my family, the thought of which was unbearable. I pushed through the intense pain I was in. I was determined I wasn’t going to die in this hospital bed at the age of 30 when I have a husband, a six year old and a new-born baby (who was thriving in SCBU). I set myself a goal to learn to walk again and take an extra step each day.

I spent 12 days in hospital this time, missing Christmas and New Years. There was a glimmer of hope starting to emerge, my blood work slowly started to show progress. My kidneys and liver were no longer blocked. My D-Dimer reading was going down showing the clot was starting to dissolve. The swelling in my legs subsided enough that the pain decreased and I was able to be more active. I was able to achieve my goal of being able to walk along the hospital corridor unaided.

After further blood tests,  I was discharged with compression stockings and a daily dose of enoxaparin which I needed to self-inject.

This was six months ago and whilst I am still at the early stages of my DVT journey, I have made a vast improvement. My legs still occasionally swell but I can walk unaided. I no longer take painkillers and my blood works are improving with each consultation. My consultant calls me his ‘walking miracle’ as neither he or the other consultants can believe that the clot did not travel to my heart or lungs.

I have seen a hematologist who tested my blood for clotting disorders, these came back negative showing that my clot was provoked by a combination of pregnancy, preeclampsia and my caesarean.

I continue to take daily enoxaparin injections and wear my compression stockings.  I am hopeful that the clot will have dissolved enough to continue a normal life, though if it has not then surgery may be an option. I know that there are still challenges along the way but regardless of the physical and emotional impact of blood clots I feel lucky enough to say I am a survivor with a healthy four month old baby. I am grateful for every day that I am alive and can’t stress enough that if you have any symptoms of a blood clot to please go and get checked out.  Catching a clot before it travels could save your life.

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