Postpartum DVT discovery and diagnosis

The next step in my journey. This gets increasingly hard to write about and talk about. I have put it off for a while, but there is no avoiding it. It happened. It was Monday 14th December 2015 and my boy had just turned 2 months old when I started getting a lot of pain shooting down my left leg. There had been some warning signs before that I didn’t understand; if I knelt down my left leg would go quickly to pins and needles, but I thought it was just how I had been leaning on it. The pain seemed to start in my lower back and was all down my leg, ending in my foot. I told myself I’d just got a trapped nerve and tried to carry on. I was most comfortable lying on my back with my leg at a 90 degree angle onto a chair. I struggled on until the Friday, when I saw my Mother in Law, who was staying for the weekend near us. She could immediately see the pain in my face and was concerned something was wrong and that I needed to see a Doctor. I didn’t want to cause a fuss, but I did ring out of hours who told me all they could do would be to give me some slightly stronger painkillers for the pain, but I couldn’t breastfeed on them, so I declined.

On the Sunday morning I woke with a swollen leg and panicked that there was something seriously wrong, that there was a clot in my leg. I called out of hours again and got an appointment with a Doctor at the hospital. I went down, at this point unable to sit comfortably and unable to weight bare. Both me and the husband asked repeatedly if this could be a clot. We were told that it was not, it was just sciatica, and that I needed to take some stronger painkillers until it passed. The solid muscles she said were due to trapped nerves. We discussed breastfeeding, and I decided only to take what I could to feed the boy, as for me, it was very important. I couldn’t walk to the car, I only just made it out the door, and then stood crying until my husband brought the car to me. Although I was in so much pain, I was relieved it was nothing serious. I saw my family for a pre-Christmas party, but couldn’t move much and rested with my leg up, my family bringing the boy to me when he needed feeding. By the evening my leg was still swollen and I sent my family a picture; they were immediately seriously concerned. The next day was the Monday before Christmas and I could not get out of bed. I could only rest full of painkillers and with my leg at a 90 degree angle. My husband was looking after me, the boy and the house, he was also worrying.

I got another appointment at the hospital with out of hours, but this time my Mum came with me. I was dropped at the door, could barely walk in there, couldn’t weight bare and couldn’t sit. I cried walking into the room and this Doctor took one look at my leg and confirmed this was a DVT. She measured my leg and confirmed it was swollen. I was passed to A&E, where I was for the rest of the day. My husband brought me the breast pump, which I had to do 3 times whilst I waited. The boy was put onto formula at this point, because I just wasn’t there. I was admitted, given a private room so I could feed the boy, when he was in and I could. I was given, paracetamol and ibuprofen for the pain. It didn’t help much. I was given an ultrasound and CT scan. These confirmed I did have a DVT. At this point they said that there was a clot in my calf, behind my knee, in my thigh and in my groin. I was given fragmin and told to take it for two weeks until I could have an appointment with a vascular consultant. I was discharged Just before Christmas Eve with 5 fragmin injections, two left handed crutches, still in pain and unable to walk. On Christmas Eve my Mum arranged for me to have a telephone appointment with my GP for more fragmin injections. I told him what had happened and was told under no circumstances to take ibuprofen and fragmin together. He prescribed a different painkiller.

Come the morning it was Christmas Day, a day of celebration and joy. I was spending it with my family at my sister’s house. We had intended to walk over, but instead my parents picked us up. I cried on the way to the car, in the car, trying to get to my sister’s door and until I was on the sofa. I can barely remember the day. My boy’s first Christmas is just a blur. I had to get help to the toilet, help to eat because I could no longer sit. My nieces spent the day writing me get well soon cards. At this point my brother in law said I should probably have compression stockings on. He had some from when he had been in hospital, my Mum and sister battled to get them on me as I cried and yelped in pain. Again, scaring my nieces! Once home, I was put on the sofa. My husband blew up an airbed and the three of us slept downstairs.

The next morning I was having chest pains and so my Mum came over, I rang out of hours and they said someone would call me back in 8 hours. My Mum was furious and rang them back, actually speaking to a Doctor. At this point I was crying saying no one believed me. An ambulance was called for me. I had lovely paramedics. I was given gas and air and helped to the ambulance, where I was put on the bed and given more gas and air!! After a lot of hours in A&E I was admitted again. I was given morphine for the pain. I was still being made to walk to the toilet, even though I could barely walk. I was asked to stand for an x-ray, it caused me so much pain that had to be given more morphine and taken down in bed for my CT scan. I was sick afterwards, I just felt humiliated. They had found the pulmonary embolism. I had two cannulas in my arms and was pumping milk (just for dumping as the medication meant the boy couldn’t have it) with the help of my Mum. It was pretty cosy, but I’m so glad she helped me do it!

I got transferred by ambulance to another local hospital where the vascular consultants were. Once there I was put in a bed and tilted with my legs in the air. It was a bed that moved (so weird!) to prevent bedsores. Here I was kept on the morphine and a specialist came to see me that evening and explained that it was not four clots, but one long one running from my calf all the way up to my abdomen. She explained that I needed treatment the next day because it was time sensitive. The treatment was thrombolysis. This would involve a tube going into the deep vein from behind my knee and running up as far as my belly button. A clot busting drug would be pumped into my vein to break it down as much as possible. It came at the risk of strokes and heart attacks if any of the clot broke off and went wandering. But it was the treatment I needed. I was scared, my family were scared and I missed my boy more than words can say. Part of me was missing, but I couldn’t hold him, I couldn’t feed him, I couldn’t do anything for him. At this point I honestly thought I would not see him grow up. I did not think I would see my house again. I did not think I would have time with my husband again. These were dark and scary days.

This is quite a factual post. It’s hard to share the pain, the fear and uncertainty that I was going through. I would not wish this on any new mum. But it is something that can happen. I’ll save the treatment and then the recovery for another day. It’s a painful chapter to relive, but I hope once I have finished it can help someone else spot the signs, or not feel alone through their own journey.

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The swelling in my left leg can be seen clearly here.

 

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Birth and Factor V Leiden

Ok, so the next step in the journey is the birth of my gorgeous son. I had a massive bump to say the least, and my blood pressure and pulse rate were very high. In hindsight this was a red flag. Still I plodded along as best I could with the PGP, and my midwife sent me to have some tests done at 41 weeks. I was in the hospital having blood work and both me and my baby were being monitored. During the monitoring I was lying on my back and I felt the baby turn putting us back to back. The monitoring was showing that I was having contractions and that they were coming quite regularly. I was found to be almost 2cm dilated too and the nurse told me she would see me back there later. I was sent home feeling that my baby was on it’s way.

I was in the early stages of labour for days. I kept having sweeps (not very pleasant) and was constantly having contractions, but nothing was happening! I was on the ball, walking, doing everything I’d been told and all my yoga moves, but nothing. This was incredibly frustrating. On the Sunday night I felt that there really was stronger and even more regular contractions and my Mum came over and took me and my husband down to the maternity ward. I was straight into the pool room and felt like things were finally happening. I was checked and I was 2cm dilated. I could have cried…..I think I did! I was sent home. I went to bed and slept as best I could. I had breakfast the next morning and then carried on with the ball and walking. By lunch I couldn’t keep anything down. I was very uncomfortable, I tried the bath, but felt it was time. My Mum arrived again and agreed and took us both down again!!

I was on the midwife led unit and this time was in just a normal room. I was checked and was about 3-4cm dilated. Honestly I was gutted. I was allowed to stay and they got me into the pool room and into the water. I was allowed gas and air as I was struggling with the contractions. I was in there for hours. I felt things were going well, although I was finding the contractions more challenging as the time went on. My husband and mum helped rub my back, hold the gas and air and hold me up in the worst contractions! I was checked again and was only 4-5cm dilated, I’d been in the water about 4-5hours at this point. The labour was progressing very slowly, the baby’s head was just not in the right place, so I wasn’t dilating fast enough. Concerns were raised and I was exhausted and could not keep any food down. I was transferred to have more assistance.

Luckily I just had to go down one floor in the lift – but still that was challenging. I asked for an epidural at this point as I just couldn’t see how I could keep going; the gas and air had stopped helping. Having to keep still whilst they gave me the epidural was hard and I was still being sick. The guy who gave it to me was brilliant!! He got it first try (thank goodness as I’ll explain later) I was also given Oxytocin to help dilate faster. I was able to get a bit of rest. I don’t think my husband or mum did at this point! After several hours I was fully dilated. There were some concerns about what I could do and talk of an emergency cesarean. My midwife was amazing,  I had to go straight into pushing instead of letting my body get used to being fully dilated, she was clear, kind, but determined I would get this baby out! I managed to get him all the way down, but couldn’t get him round the last bend (I hadn’t really appreciated there was a bend!!) so forceps were used to help guide him out of the last corner! Him, yes a him! We had not found out and I was stunned to find out he was a HE! We are a family of girls, he is the first boy for us! He came into the world at 7.15am on the Tuesday! A long, long labour. I was amazed, but he was quickly taken to have some help in SCBU – they were concerned about his breathing. I was told to rest and then they would take me down, my husband was able to go with him.

I took a bad turn and due to a temperature and the length of the labour. I felt so far away. I was quite frightened. It took a lot of being seen by Doctors, fluids, anti-sickness injections (yes more than one!) cold flannels (thanks mum!) and antibiotics to help bring me back round. They insisted I had some sleep before seeing my son. I finally met him for cuddles and happy tears at 3:30pm the Tuesday afternoon. The happiest moment ever! I’d been taken to SCBU in my bed, so cuddles were easier! We had a few days in hospital as he was monitored and I was given antibiotics, and my fragmin injections. Even after all of this I was only given 2 weeks worth of fragmin injections – 6 weeks should have been the minimum. I was unaware of this trusting the consultant, but if you know you have a genetic predisposition, such as Factor V Leiden, then 6 weeks postpartum is what you should be given no less! After a couple of nights we were finally able to go home, I was excited and so happy! Little did I know what lay just around the corner…

Pregnancy, PGP/SPD and further complications!

I actually knew I was pregnant before I knew I was pregnant! I have hypothyroidism and so became very tired, worn down and muddled, which is how I normally feel if my TSH and T4 levels are not quite right! On discussion with my Doctor he felt that my womb was slightly enlarged, but the doppler only reveled my own heartbeat. I had no idea, but I was in fact pregnant with my gorgeous boy – he was just a collection of cells at that point though! My levothyroxine medication was altered and I felt fine again, then over the moon when a pregnancy test showed we were going to grow as a family!

The early weeks were all full of excitement as it was a secret just for us……..ok that secret lasted all of about 4 hours. I’m not even joking, my husband could not keep his mouth shut!! He had wanted to keep it secret until the 12 week scan, but in reality we went to my parents for dinner the day we found out and I went to the toilet. I came back to a guilty looking husband who told me to tell my Mum as he had just told my Dad!!! He told anyone who would listen at this point! He was a little over excited about being a Dad himself! It was all magical, watching this app telling me how big he was (he was known as little seed at this point). The first scan went fine, apart from me having drunk to much and having to empty my bladder, but “just a bit”?! Seriously hard thing to do! At around 15 weeks though I was getting a lot of hip and groin pain. It hurt to walk, it hurt to sit, I could hardly move in bed. I felt really sad and just uncomfortable all the time. This made my role as a Key Stage 2 class teacher an incredibly hard job to do as I was constantly stood or walking around. I saw my midwife who told my to see the physiotherapist. I went to the hospital to see the physiotherapist who gave me a band to wear below my bump and over my hips; they diagnosed it as PGP (Pelvic Girdle Pain) also known as SPD (Symphysis Pubis Dysfunction). My younger sister had had it in her pregnancies, so I understood that the pain was due to my pelvis relaxing a little too much from the pregnancy hormones.

Getting in and out of bed never got any easier for me; bedtime was hard so I wasn’t resting well at all. By the third trimester I was in a lot of pain and my movement had become incredibly limited. I had seen the physiotherapist for another band the next size up, as my bump was very large! My midwives kept a close eye on me, they had some concerns about my high blood pressure and fast pulse rate towards the end of the third trimester. I was in and out of hospital as further tests were performed. At one point, after waking with dizziness and not being able to catch my breath, the on call Doctor at my surgery sent me straight to A&E because she was concerned I had a Pulmonary Embolism. I had several blood pressure and pulse tests (all remained high), I had 3 ECG scans (fun times!) an X Ray, blood tests (I actually don’t know what for) and was sent to the maternity unit for further examinations of my baby. They decided to rule out a P.E. and I was discharged. I had been doing yoga throughout my second and third trimester and was trying to walk daily, but could only walk short distances. I had seen a consultant about my hypothyroidism and my Factor V Leiden and mentioned the PGP pain, but had been signed off. He had decided I was low risk for any issues (including clotting) and that all I would need was 2 weeks of Fragmin injections after the birth, if I chose to – they were optional. I felt relieved that I was ok…..even though I didn’t feel ok.

By the end I really did feel like a whale that needed returning to the ocean! I was more comfortable in water and could move more freely. I loved baths, but getting in and out would practically reduce me to tears. The hardest was getting my left leg over the edge. Then lucky old me I got to be two weeks late! No matter how many old wives tales I tried, how much ball bouncing, yoga moves, walking (ok limited), I even had curry, but he just would not budge! Then the actual birth and aftermath is another story!

After my treatment for the DVT the consultant asked me about the PGP/SPD I mentioned to her before. She asked when it began and when I said 15 weeks pregnant her response was “that’s a bit to early to be PGP”. In hindsight (which is always 20/20) something a lot more sinister was happening, and if I was in that position again I would be demanding more tests (particularly scans of my deep veins!) until the reason for all the pain and high blood pressure was discovered.The trouble is you put your trust in people, but they might not always have it right. If you ever think anything is not right, just keep pushing – you know your body better than anyone else.

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My view by the end! Look no feet!!

Factor V Leiden

I have been putting off writing about my DVT because it is still a pretty raw and painful topic for me. However, it is also important to share it as it may help someone else with similar symptoms in pregnancy. To understand that part of the story I really need to start when I was 17 years old.

I had asked my mum if I could go on the combined pill and in most families this would have been a visit and a prescription. My mum is thankfully on the ball and queried with the Doctor about a history of blood clots. My maternal Grandmother and some of her siblings had had blood clots or DVTs and my mum wanted to check before I went on the pill. The Doctor said that there was a blood test they could do now which would show if there were any genetic conditions linked to blood clotting. So instead of a prescription I had about 5 tubes of blood taken (I’m such a wimp about needles, so took my younger sister who kept me entertained as they removed what seemed to me like all my blood!) My mum and both my sisters had the test too. The results came back as having Factor V Leiden, which meant no combined pill for me!

So Factor V Leiden is a specific gene mutation and effects 3-8% of Europeans. It increases a persons chance of having a DVT, although only slightly. Of these 3-8% only 10% of people will have a DVT or other blood clot. The issue for women is that estrogen increases your chances of clotting if you have Factor V Leiden, hence I wasn’t allowed the combined pill. One of the biggest increases of estrogen you could introduce is being pregnant, which is why you need to be aware of your family medical history. If you are aware that you have a genetic predisposition to clotting or a history of clotting in your family you must have it investigated. There is some more information about different types of Thrombophilia on the NHS website. There is also information available about DVTs and pregnancy including how to identify some symptoms.

I have always been clear about having Factor V Leiden and any medical appointment. In my experience having Factor V Leiden has not been taken particularly seriously, which is why I think it is important to be very vocal if you do have it! In order to understand the rest of the story leading up to my DVT we have to start here. Hopefully as I share each stage with you it will spread some awareness as well as healing some ghosts.

Begin at the beginning

My name is Alice and I live in Gloucester. I am currently on maternity leave from my job as a Primary School Teacher. Why have I decided to start blogging in one of the busiest phases of my life? Well not only am I full of Early Years Practice ideas I want to share with other new mums, I have not had the easiest start to motherhood; a long 31 hour labour and subsequent severe deep vein thrombosis (DVT). I have struggled to find anything online about mums in a similar position to me and so I would like to reach out to other mums who may be in the same boat.

I had my beautiful son in October 2015. He came 2 weeks late, in the end it was on the day I was due to be induced. This was a long and hard labour and for all the plans and bag packing it could not have been further from what I had in mind. My “birth plan” (chuckle!) was to be in a birth pool and to not have any other pain relief other than gas and air. The reality was several phone calls, a couple of visits to the hospital before being allowed to stay! I did get to go in the water, but after several hours my boy (unknown to us at that time) was not in the right place, so I was not dilating fast enough. I couldn’t cope anymore and so asked for an epidural (it was awesome!) I required a drip of Oxytocin to help speed up the dilation and contractions. There were still questions about whether or not I would need an emergency C-section at this stage. I managed to push Danny down on my own (loads of support from my amazing midwife) but required forceps at the end and had an episiotomy. My beautiful boy was put on my chest, but quickly taken away to SCBU (intensive care for babies) after hours of checks and a two day stay he was given the all clear (phew). I developed a temperature and was incredibly sick and unwell, so there was another battle to help me. I pulled through and 7 hours later was allowed to see and hold my boy for the first time. A magical moment, and a very brief overview of the 31 hours of labouring (plus some more after he arrived!)

Fast forward a couple of months and I was just about starting to get the hang of being a mum and starting to form some basic routines with my boy. My confidence was growing, but unknown to me, something else was growing too. The 14th of December I started getting shooting pains down my left leg. To me they seemed to start almost in my lower back. I left it a few days, not wanting to cause a fuss. The pain got worse and I started to wonder what it could be. On the Friday night the pain was excruciating and I was finding it hard to walk. The Saturday I rested as much as I could, but noticed in the evening that my left leg was swollen. I saw the out of hours Doctor on the Sunday who said it was just muscles tensing due to a trapped nerve. By this point I was asking if this could be a blood clot due to having Factor V Leiden (a genetic predisposition to clotting). This was dismissed and I was misdiagnosed at this point. A lot of back and forth happened and I was eventually admitted to hospital a few days later where an ultrasound and CT scan picked up 4 positions of a DVT in my left leg. I was given Fragmin injections (blood thinner) and sent away with paracetamol and ibuprofen for the pain (additional note: if you are taking a blood thinner do not take ibuprofen, it is highly dangerous). After a miserable Christmas Day I was taken by ambulance back to hospital with chest pains. After getting though a very dismissive Doctor I was given another CT scan which found a pulmonary embolism. I was eventually taken to another hospital with vascular specialists. Here I was told it was in fact 1 clot running from my abdomen down my left leg as far as the calf muscle. The next day I was given thrombolysis; a tube was inserted into my vein from behind my knee and pushed through up to my belly button and then a clot busting drug was pumped into my body through the tube. After 48 hours on this it was removed and a whole leg stocking was put on me. I was on Fragmin every day and then given Warfarin. I was allowed home very late New Years Eve, so saw in 2016 with my family. The 8 days (total) I was away from my son I continued to pump my milk even though Danny couldn’t have it due to the drugs I was on. I was able to keep my milk going and resume breastfeeding after I came out. There were a few weeks of mixed feeding (formula and breast) but by 3 months he was back to fully breastfed. It was incredibly hard to maintain, but I am glad I persisted. It was absolutely terrifying and the outcome could have been far far worse. I am so grateful to still be here with my son and husband. The road to recovery is going to be a long one. There is still some clot in there, I am waiting to find out if I need blood thinners for life and I will be wearing my compression stocking for the next 2 years.

Having the DVT was a mixed blessing. It was horrible to go through, and I haven’t finished going through it yet, but it made me so grateful for what I do have. It also gave me the courage to start blogging and sharing my experience with other people who may be going through the same thing. I want to share my experience, my diagnosis, my recovery and my feelings so that other women in the same situation may not feel quite so alone.

I didn’t want this blog to be just about that though! There are so many positive ideas and experiences I want to share with you all! I love to craft, bake and play with my son. I love bright new creative ways to learn and think everyone should be given the opportunity to have a go at fun activities with their little ones. I can’t wait to start my outdoor learning area project! I want it to be ready for when Danny is old enough to play outside and I want to share my Early Years Practice with you so that I might inspire others to create amazing learning environments for their babies! I also want to encourage as many people as possible to eat more cake and biscuits and to drink plenty of tea!

I look forward to sharing so much with you all!