Patient Information

Coping With Worry After A Clot

We’ve created a space to address anxiety and questions after a VTE diagnosis.

Self Advocacy

Self advocacy empowers people with Venous Thromboembolism (VTE) to take an active role in their care.

Patient Support Meetings

Join a supportive community to share experiences and receive encouragement.

Let's Talk Clots App

The app offers info on blood clots, risk reduction, symptoms, diagnosis, treatments, and recovery support.

Shared Accounts

Shared experiences from those affected offer support and raise awareness.

Educational Events

Join a compassionate community to connect, share experiences, and receive support.

Get Involved

See how you can get involved in our community through fundraising, volunteering, and much more.

My Pregnancy Journey on Warfarin

When I was five weeks old, I had surgery to repair a narrowed aortic valve.  Life was fairly normal with annual check ups, until December 2004, when I developed an unexpected arterial thrombosis in my left leg.  As a result, I was started on lifelong warfarin.

In September 2012, I underwent open-heart surgery to have my aortic valve replaced with a mechanical heart valve.  From then on, anticoagulation became an even more important part of my life, protecting both my valve and reducing my risk of another thrombosis.

I always knew pregnancy would need careful planning.

Before trying for a baby, my cardiology team made sure my heart was strong enough to cope with pregnancy, and I knew I would need to contact them as soon as I had a positive pregnancy test.  Warfarin isn’t suitable during pregnancy because it crosses the placenta, so I needed to change to Clexane injections as early as possible.

When I found out I was pregnant with my first baby in 2016, I was 38 years old.  Within hours I had spoken to my GP, my anticoagulation clinic and my cardiology team. I stopped warfarin and started injecting Clexane twice a day, alongside aspirin.

I’d been self-testing my INR for years, so swapping tablets for injections took a bit of getting used to. I don’t particularly like needles, but there wasn’t really time to think about that. I just got on with it.

Very quickly, hospital appointments became part of everyday life.  Between the Royal Brompton, Chelsea and Westminster Hospital and my local anticoagulation clinic, I was regularly seeing cardiologists, obstetricians, haematologists and midwives.  Looking back, I realise how much communication there was between all of the teams to make sure everyone was happy with my treatment.

The main message was always the same – keeping my anticoagulation at the right level was the priority.

The injections became harder as my pregnancy progressed. My stomach became bruised and sore, and eventually there wasn’t much space left that hadn’t already been used.  My partner started giving some of the injections into my back to give my stomach a bit of a rest, and later I also used my thighs.

Alongside all of that were the usual emotions that come with pregnancy, but with a few extra worries.  Because of my own heart condition, I was anxious about the specialist scans checking the baby’s heart.  I was so pleased when they told me everything looked normal.

Towards the end of my pregnancy, my cardiologist noticed that the sound of my mechanical valve had changed.  Because of my history, they wanted to make absolutely sure there wasn’t a clot on the valve, so I was admitted to hospital for further tests. Thankfully everything was fine, but it reminded me how seriously the team took anything that could increase the risk of thrombosis.

Although the original plan had been to induce labour, my waters broke unexpectedly at 36 weeks.  As I’d taken my Clexane the previous evening, I couldn’t have the epidural we’d planned.  The team carefully managed my labour because they needed to balance the risk of bleeding with the need to restart my anticoagulation as soon as possible afterwards.

After just over 12 hours of labour, our son Noah was born with the help of forceps.

After the birth I restarted warfarin while continuing Clexane until my INR was back in range.  Noah developed jaundice, so we stayed in hospital a little longer than expected, but we both recovered well and were soon home.

Three years later, in 2019, we decided to have another baby.

Because of everything that had been learnt during my first pregnancy, my anticoagulation was managed slightly differently. This time I needed three Clexane injections every day to make sure my anticoagulant levels stayed stable between doses. It meant even more injections, but I understood why it was important.

I also had a planned induction at 37 weeks, allowing the team to carefully manage when I stopped and restarted my anticoagulation.

Our daughter, Hope, was born safely and, like Noah, she has a healthy heart.

Looking back, I don’t think about the number of injections or hospital appointments quite as much as I think about the people who looked after me.  Every decision was made with my safety and my babies’ safety in mind, and I always felt that my different specialist teams were working together.

Living with lifelong anticoagulation doesn’t necessarily mean you can’t have a family, but it does mean pregnancy needs careful planning and specialist care.

If there’s one thing I’ve learnt, it’s to trust your medical team, ask questions when you’re unsure and remember that every blood test, scan and injection has a purpose.

Today, I have two wonderful children, and I’m very grateful to the teams whose care made that possible.

Thrombosis UK VTE Awards
Application form

Applications are accepted on the basis that Thrombosis UK can share the content with external judges who will assist us with assessments. Service models, resources and working processes of successful Thrombosis UK VTE Award winners will be uploaded to the Thrombosis UK website and shared via publications, social media, and other opportunities.

When completing your application form, you should use lay language and answer each question in a concise manner. 

Please keep to any word limits given.

All sections need to be completed, if any section is removed, omitted or incomplete, we cannot process the application.

Applications need to be submitted via email to: [email protected] You will receive a notification of receipt within 48 hours of submission. If you do not receive a notification, please email [email protected]

The closing date for applications is 1st February 2025

We are unable to consider late applications.

Category
Thrombosis UK Award deep vein thrombosis (DVT) pathway award for leading to improved timely diagnosis of thrombosis
Please note there is a separate application form for each category.
DATA PROTECTION

Thrombosis UK has a strict data protection policy that complies with UK data protection law.

Your name and contact details may be stored for up to 12 months in order for correspondence relating to your application be appropriately processed.

 

We wish to make you aware that your name and contact details, as included on your completed application form, will be viewed by the Thrombosis UK appointed Judging Panel solely for the purpose of reviewing and assessing your completed application.  If your nomination is short listed, a representative from Thrombosis UK will then seek your permission to include your name on the summary paragraph included in the awards brochure and on the Thrombosis UK website.

Thrombosis UK takes security and confidentiality very seriously. Your name and contact details will never be passed or shared with any third party or an unauthorised individual. If you have any queries, please contact: [email protected]

Thrombosis UK VTE Awards
Application form

Applications are accepted on the basis that Thrombosis UK can share the content with external judges who will assist us with assessments. Service models, resources and working processes of successful Thrombosis UK VTE Award winners will be uploaded to the Thrombosis UK website and shared via publications, social media, and other opportunities.

When completing your application form, you should use lay language and answer each question in a concise manner. 

Please keep to any word limits given.

All sections need to be completed, if any section is removed, omitted or incomplete, we cannot process the application.

Applications need to be submitted via email to: [email protected] You will receive a notification of receipt within 48 hours of submission. If you do not receive a notification, please email [email protected]

The closing date for applications is 1st February 2025

We are unable to consider late applications.

Category
Thrombosis UK Award for an excellent Quality Improvement programme that advanced practice in thrombosis prevention or management.
Please note there is a separate application form for each category.
DATA PROTECTION

Thrombosis UK has a strict data protection policy that complies with UK data protection law.

Your name and contact details may be stored for up to 12 months in order for correspondence relating to your application be appropriately processed.

 

We wish to make you aware that your name and contact details, as included on your completed application form, will be viewed by the Thrombosis UK appointed Judging Panel solely for the purpose of reviewing and assessing your completed application.  If your nomination is short listed, a representative from Thrombosis UK will then seek your permission to include your name on the summary paragraph included in the awards brochure and on the Thrombosis UK website.

Thrombosis UK takes security and confidentiality very seriously. Your name and contact details will never be passed or shared with any third party or an unauthorised individual. If you have any queries, please contact: [email protected]

Thrombosis UK VTE Awards
Application form

Applications are accepted on the basis that Thrombosis UK can share the content with external judges who will assist us with assessments. Service models, resources and working processes of successful Thrombosis UK VTE Award winners will be uploaded to the Thrombosis UK website and shared via publications, social media, and other opportunities.

When completing your application form, you should use lay language and answer each question in a concise manner. 

Please keep to any word limits given.

All sections need to be completed, if any section is removed, omitted or incomplete, we cannot process the application.

Applications need to be submitted via email to: [email protected] You will receive a notification of receipt within 48 hours of submission. If you do not receive a notification, please email [email protected]

The closing date for applications is 1st February 2025

We are unable to consider late applications.

Category
Thrombosis UK Award for outstanding patient resource, sharing information. about VTE prevention for patients and carers
Please note there is a separate application form for each category.
DATA PROTECTION

Thrombosis UK has a strict data protection policy that complies with UK data protection law.

Your name and contact details may be stored for up to 12 months in order for correspondence relating to your application be appropriately processed.

 

We wish to make you aware that your name and contact details, as included on your completed application form, will be viewed by the Thrombosis UK appointed Judging Panel solely for the purpose of reviewing and assessing your completed application.  If your nomination is short listed, a representative from Thrombosis UK will then seek your permission to include your name on the summary paragraph included in the awards brochure and on the Thrombosis UK website.

Thrombosis UK takes security and confidentiality very seriously. Your name and contact details will never be passed or shared with any third party or an unauthorised individual. If you have any queries, please contact: [email protected]

Thrombosis UK VTE Awards
Application form

Applications are accepted on the basis that Thrombosis UK can share the content with external judges who will assist us with assessments. Service models, resources and working processes of successful Thrombosis UK VTE Award winners will be uploaded to the Thrombosis UK website and shared via publications, social media, and other opportunities.

When completing your application form, you should use lay language and answer each question in a concise manner. 

Please keep to any word limits given.

All sections need to be completed, if any section is removed, omitted or incomplete, we cannot process the application.

Applications need to be submitted via email to: [email protected] You will receive a notification of receipt within 48 hours of submission. If you do not receive a notification, please email [email protected]

The closing date for applications is 1st February 2025

We are unable to consider late applications.

Category
Thrombosis UK Award for Enhancing Patient Experience
Please note there is a separate application form for each category.
DATA PROTECTION

Thrombosis UK has a strict data protection policy that complies with UK data protection law.

Your name and contact details may be stored for up to 12 months in order for correspondence relating to your application be appropriately processed.

 

We wish to make you aware that your name and contact details, as included on your completed application form, will be viewed by the Thrombosis UK appointed Judging Panel solely for the purpose of reviewing and assessing your completed application.  If your nomination is short listed, a representative from Thrombosis UK will then seek your permission to include your name on the summary paragraph included in the awards brochure and on the Thrombosis UK website.

Thrombosis UK takes security and confidentiality very seriously. Your name and contact details will never be passed or shared with any third party or an unauthorised individual. If you have any queries, please contact: [email protected]

Thrombosis UK VTE Awards
Application form

Applications are accepted on the basis that Thrombosis UK can share the content with external judges who will assist us with assessments. Service models, resources and working processes of successful Thrombosis UK VTE Award winners will be uploaded to the Thrombosis UK website and shared via publications, social media, and other opportunities.

When completing your application form, you should use lay language and answer each question in a concise manner. 

Please keep to any word limits given.

All sections need to be completed, if any section is removed, omitted or incomplete, we cannot process the application.

Applications need to be submitted via email to: [email protected] You will receive a notification of receipt within 48 hours of submission. If you do not receive a notification, please email [email protected]

The closing date for applications is 1st February 2025

We are unable to consider late applications.

Category
Thrombosis UK Award for advancing awareness and information sharing of cancer acquired thrombosis (CAT)
Please note there is a separate application form for each category.
DATA PROTECTION

Thrombosis UK has a strict data protection policy that complies with UK data protection law.

Your name and contact details may be stored for up to 12 months in order for correspondence relating to your application be appropriately processed.

 

We wish to make you aware that your name and contact details, as included on your completed application form, will be viewed by the Thrombosis UK appointed Judging Panel solely for the purpose of reviewing and assessing your completed application.  If your nomination is short listed, a representative from Thrombosis UK will then seek your permission to include your name on the summary paragraph included in the awards brochure and on the Thrombosis UK website.

Thrombosis UK takes security and confidentiality very seriously. Your name and contact details will never be passed or shared with any third party or an unauthorised individual. If you have any queries, please contact: [email protected]

Thrombosis UK VTE Awards
Application form

Applications are accepted on the basis that Thrombosis UK can share the content with external judges who will assist us with assessments. Service models, resources and working processes of successful Thrombosis UK VTE Award winners will be uploaded to the Thrombosis UK website and shared via publications, social media, and other opportunities.

When completing your application form, you should use lay language and answer each question in a concise manner. 

Please keep to any word limits given.

All sections need to be completed, if any section is removed, omitted or incomplete, we cannot process the application.

Applications need to be submitted via email to: [email protected] You will receive a notification of receipt within 48 hours of submission. If you do not receive a notification, please email [email protected]

The closing date for applications is 1st February 2025

We are unable to consider late applications.

Category
Thrombosis UK Award for work in VTE Prevention
Please note there is a separate application form for each category.
DATA PROTECTION

Thrombosis UK has a strict data protection policy that complies with UK data protection law.

Your name and contact details may be stored for up to 12 months in order for correspondence relating to your application be appropriately processed.

 

We wish to make you aware that your name and contact details, as included on your completed application form, will be viewed by the Thrombosis UK appointed Judging Panel solely for the purpose of reviewing and assessing your completed application.  If your nomination is short listed, a representative from Thrombosis UK will then seek your permission to include your name on the summary paragraph included in the awards brochure and on the Thrombosis UK website.

Thrombosis UK takes security and confidentiality very seriously. Your name and contact details will never be passed or shared with any third party or an unauthorised individual. If you have any queries, please contact: [email protected]

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