Deep Vein Thrombosis Awareness Month

March is national Deep-Vein Thrombosis Awareness Month, a public health initiative aimed at raising awareness of this commonly occurring medical condition and its potentially fatal complication, pulmonary embolism.

What is Deep Vein Thrombosis (DVT)?

DVT is a blood clot which develops in one of the deep veins in the body – usually in the leg

What is pulmonary embolism?

This is a complication of DVT, where a piece of the blood clot in the leg breaks off into the blood stream and blocks one f the blood vessels in the lung.

What are the symptoms of a DVT?

  • pain, swelling and tenderness in one of your legs, usually your calf (DVT tends to only affect one leg at a tjme)
  • a heavy ache in the affected area
  • warm skin in the area of the clot
  • red skin, particularly at the back of your leg below the knee
  • in some cases here may be no symptoms

What are the symptoms of pulmonary embolism?

  • If left untreated, around 1 in 10 people with DVT will develop pulmonary embolism
  • breathlessness – which may come on gradually or suddenly
  • chest pain – which may become worse when you breathe in
  • sudden collapse 

Both DVT and pulmonary embolism require urgent investigation and treatment.
Seek immediate medical attention if you have pain, swelling and tenderness in your leg, and you develop breathlessness and chest pain.

NHS England

What causes DVT?

  • DVT affects around 1 person in every 1000 in the UK
  • Anyone can develop DVT but it becomes more common over the age of 40

Other risk factors include

  • having a history of DVT or ulmonary embolism
  • family history of blood clots
  • being inactive for long periods – during a long journey or after an operation for example
  • blood vessel damage
  • having certain conditions or treatments that cause your blood to clot more easily eg. cancer, heart and lung disease, thrombophilia, Hughes Disease etc
  • being pregnant
  • being overweight or obese
  • taking the combined contraceptive pill or HRT

So I wanted to highlight this important information because so many don’t know about it till it is too late. After spending time in hospital again, I have been subjected to the daily injections in my tummy and am covered in little bruises which makes it look like I have some kind of weird skin disease, however the importance of these lies close to my heart.

During his most recent hospital stay, Ste was diagnosed with blood clots and is now on a six month course of blood thinners to hopefully dissolve them. This will need checking again later this year, and his treatment time will be extended if need be.

One of my best friend’s, Daniel, has also been diagnosed with blood clots which they have linked to his Crohn’s Disease. In 2016 Daniel supported me through a hard time personally and with my bowel surgery and ileostomy formation. He was then taken into hospital, where the DVT affected the blood flow to his lower left leg, leading to him needing it amputating. I thought I would interview Daniel for this post, so he could explain more about what happened, and why it is so important that people are aware of the risk factors and symptoms of DVT.

An Interview With… Daniel Lee

Hi Daniel, can you give us brief intro about yourself?

I’m Dan and I am 33 from London. I am a Chelsea fan and enjoy going to watch them play regularly. I have also been studying accountancy at college.

What are your diagnosed medical conditions?

I have Crohn’s Disease, a genetic blood disorder and arterial thrombosis. Arterial thrombosis affects the arteries, whereas DVT affects the veins. Arterial thrombosis is apparently quite rare but the doctors have said it may be due to the inflammatory factor of my Crohn’s Disease.

What were the first symptoms you experienced in respect of the blood clots?

One day I was walking down the road and it felt like I had pulled a muscle.I was limping for a few days but didn’t think much of it. Then it got really painful.I was back and forth to outpatient appointments trying to get a diagnosis. They ruled out blood clots straight away.

What tests did you have?

I demanded a scan, so they gave me an ultrasound but only of the veins, not the arteries. I was misdiagnosed for a few months before they gave me an MRI scan.

What happened next?

I was diagnosed with arterial thrombosis. The arteries in my leg were completely blocked. I had 5 operations in the following two weeks, including an artery bypass which worked well for about 6 weeks. One night I woke up in agony, and my foot was freezing cold. I rang an ambulance and after a couple of days of tests was told the only option left was to amputate.

Losing your leg was extremely difficult. Did you get a lot of emotional support at the time?

I’ve been very lucky with the amazing support I have had from family and friends. Some of the amputees I have met in physio have o one. If I was one of them, I wouldn’t know what to do.

Have they linked your blood clots to the Crohn’s Disease?

Crohn’s Disease was a contributing factor to the blood clots, as well as the blood disorder I have.

How do you manage the Arterial Thrombosis now on a daily basis?

I am on blood thinners (warfarin) for life and have regular blood tests to check my clotting factor.

How are you finding life with a prosthetic limb? Looking forward, what are you hoping to achieve now you are healing?

I am back in the gym regularly now and my main ambition is to run the London Marathon, although it may not happen for another couple of years!


A huge thank you to Daniel for answering my questions, I hope you found his story interesting. I won’t be letting him get away with not doing the marathon now either but will make sure I am at the finish line with a pint! I hope this post has been interesting and insightful for everyone. Let me know in the comments below if you knew about blood clots or DVT , or have learnt about it through this post. As always, thank you for reading,

An Interview With… Karen Osman

#Blogtober DAY 9

Karen Osman has written two books which I have previously reviewed on the blog, and loved!  I am really pleased that she has begun writing her next book, find out more in this interview with her, courtesy of Aria, her publishers.

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Tell us more about your latest book, The Home.

My second novel, The Home, is a psychological thriller, set between the 1970s and 1980s, about successful career woman Angela whose memories of an abusive children’s home affect her adult life. The book delves into the darkness of living in a children’s home, casting a shadow over family ties and what it means to belong. Abandoned as a baby, Angela is desperate to escape her supposed refuge, yet despite being adoptedand taken into the hearts of a wealthy couple, the scars of her childhood remain. When Angela discovers the identity of her birth mother Evelyn, their reunion is no fairy tale and as sinister events start to unfold, Evelyn fears she may not survive her daughter’s return.

How did you come up with the plot of the book?

As a mother of two young sons, 2 and 4, I still remember that double-edged maelstrom of emotion of those new-born days – a mix of joy and worry – and it’s been a powerful influence in my writing for my new book, The Home.  At the same time, I was researching about the horrors of children’s homes in the ’60s and ’70s, much of which only came to light many years later. It’s incredibly disturbing that such events could have happened in places which are supposed to protect children. From here, I started to develop the outline of a plot and the character of Angela was born.

Can you tell us more about the characters of Angela and Evelyn?

Angela is ambitious and career driven and the 1980s were an interesting time for women.  On the one hand, Margaret Thatcher was a powerful example of what could be achieved by women, but on the other hand, sexism was very much present. The hardworking personality of Angela is the polar opposite of Evelyn who is content to rely on government support and often plays the role of the victim, abstaining from as much responsibility as she can get away with.

Can you describe The Home in three adjectives?

Chilling, dark, surprising.

What comes to you first – the setting, the characters or some aspect of the story?

When I plan a new book, I usually focus on coming up with the big idea of the plot first. From here, the characters, and the setting follow. I’m a bit of a planner when it comes to novel writing and I try and outline as much of the book as possible. This includes character development, chapter outlines, and narrative arcs. Of course, you can’t plan out everything and I do get a lot of ideas as I’m writing and I enjoy that surprising element of the process.

What is your favourite and least favourite thing about writing?

My favourite part of writing is creating the first and last chapters. These are usually the most exciting for me. I also really love building the narrative. My least favourite part is all the re-reads that are required to make sure the book is as good as it can be!

When did you decide to write and what prompted you to start?

I have always written in some form or another from a very young age. I loved it and it was, and continues to be, a daily part of my life – even on holidays! From a professional perspective, I would say probably in 2011 when I set up my writing business, Travel Ink, in 2011 which provides content services for the travel and tourism industry. I started writing novels in 2016, when I won the Montegrappa Writing Prize for The Good Mother, which then led to a three-book deal.

What is a great book you’ve read recently that you would recommend?

The Woman in the Window by AJ Finn was fantastic. I’ve also just finished Annabel Kantaria’s new book I Know You.

What are you working on next?

I’ve already started writing my third novel, The Perfect Lie, about a lawyer who is representing a young woman who has been raped. As the case develops, the lawyer is reminded of a past she would rather forget and her perfect life starts to unravel.

Hope you enjoyed reading a little more about Karen Osman.  You can check out my reviews of her first two books at the links below.

The Good Mother

The Home

Who are some of your favourite authors?  Let me know in the comments below!

NatalieThe Spoonie Mummy

An Interview With… Marnix Lawrence

I recently responded to a tweet asking for people with IBD to help with some research looking at the perception of exercise among sufferers.  This led to me being interviewed over Skype by the lovely Marnix, who himself has Crohns Disease.  I answered the questions he needed for his research and it was great to talk to someone about the importance of things like this.  I think it is great that someone who has IBD themselves is doing such important research, as he really understands things from a patient’s perspective too.  I asked Marnix to answer some questions to post on my blog which he kindly agreed to.  Read on for more information about his research and why projects like this are so important.

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Photo by Pixabay on Pexels.com

1 – Could you give us a brief intro – who you are and what you do?

My name is Marnix, I’m 23 and I’m currently finishing up an MSc in Clinical Exercise Physiology. I studied a BSc in sport and exercise science previous to this. My research is titled ‘Perceptions of Exercise in IBD Sufferers: A Qualitative Approach.

2 – Tell us about your IBD diagnosis – your symptoms, how you were diagnosed, what you have etc

I was diagnosed with Crohns disease when I was 19 in the summer at the end of my first year of university, but had been experiencing some symptoms from around the age of 17. This started out as extreme abdominal pain when I drank too much alcohol, but this turned into more frequent pain, diarrhoea, fatigue and severe weight loss just before my diagnosis. My mum was concerned about my weight loss (around 15kg in a month) and sent me to see a consultant fairly quickly, who diagnosed me instantly. I did however see a consultant a year before for some perianal symptoms I was having, and this consultant misdiagnosed me. According to other consultants that particular consultant was an idiot for not noticing the symptoms I was experiencing.

3 – How do you manage your IBD now?

My IBD is managed by strong medications. Due to the severity of my Crohns disease I was placed straight onto Humira, a biologic medication almost immediately. My condition has been fairly controlled since, apart from the occasional course of steroids when things are less than ideal.

4 – Why are you interested in the effects of exercise on patients with IBD?

So the first rather obvious point regarding this is the fact that I have IBD myself, so taking an interest in it seems like a fairly logical thing to do. With regards to exercise specifically, my MSc course is focused towards exercise so that interest was there, and it was a case of simply pairing them together. My interest expanded past this however when looking into the research further. Research into IBD is currently at an interesting stage where there is quite a large amount of promise for the potentially positive effects of exercise. This is due to the biology making sense (exercise is known to reduce inflammation, and IBD is all about inflammation), and some papers speaking of its all around positive effects, with some stating some reductions in disease activity after 12 weeks of exercise. Despite this, and some more high-quality research being undertaken right now, it’s still a little unclear what effect exercise actually has, as some results are rather mixed. Due of this, IBD sufferers have no guidelines around exercise, so information about what we should be doing and why we should be doing it. This sparked my interest, as I wanted to contribute to this growing area so that perhaps guidelines could be made in the next few years.

5 – What exercise do you take part in?

I participate in resistance exercise 3 times a week for an hour per time, and 1 session of high intensity interval training (HIIT) every week.

6 – Does exercise impact on your health do you think?

It certainly helps me keep my cardiovascular fitness in check, as well as positive effects on my muscle development. I don’t think it has any particular effect on my disease activity, as my disease is well controlled at the moment. It may stop it from flaring back up, but I wouldn’t know that for certain. However in my opinion its very important for IBD sufferers to exercise regularly. Alongside all the positive effects healthy members of the population will experience, there are two main factors specifically for IBD sufferers:

1. We are susceptible to osteoporosis, a condition where your bone mineral density is lower, and you have an increased risk of bone fractures

2. We are more susceptible to colon cancer.

What most IBD sufferers don’t realise is that we are both susceptible to these conditions, and that exercise has a direct positive effect on reducing the risk of these conditions. Most people don’t know this however, because we have no exercise guidelines. But that is one of the big reasons I stick to a regular exercise programme.

7 – Was your diagnosis the catalyst for the type of research you do?

I think I would likely be doing research regarding the effects of exercise on a different chronic condition if not for my diagnosis, but I certainly think the diagnosis meant I did research in IBD specifically

8 – What do your colleagues think of the work you do? Do they know you have IBD yourself? What do they think of that?

My colleagues have been supportive of the research I’m doing. My supervisor and other researchers I’ve spoken to are confident the research can be published because there is a need for more information in this area. I have one that has Crohns disease too, who has been extremely supportive and has helped with recruitment. Without them, I’m not sure this research would have been successful.

9 – What do you aim to do with your research?

While research continues to find out what exercise is beneficial, and whether or not it has a positive effect on disease activity, the thoughts and feelings of IBD sufferers goes under the radar. With IBD comes a large amount of worry and concern, and with little exercise information, many IBD sufferers are apprehensive about exercise, thinking that it may perhaps worsen their condition. What I hope to do is summarise the thoughts of IBD sufferers, and apply that knowledge to give advice into how exercise should be prescribed to IBD sufferers and what information should be readily available. Other factors to be considered might be how active a person’s disease may be, provisions such as proximity to the nearest toilet, whatever it takes so that people are comfortable exercising, and not worrying about XY and Z

10 – Why should patients get involved with research? Why is it important?

Behind everything in the medical world, research is the driving factor. That medication you take which keeps you stable? Had to go through clinical trials. The fact that we all know exercise is good for your heart? This information is readily available because of research proving it to be the case. Taking part in a piece of research could be the difference between guidelines and legislation being made that may directly benefit you as a person, or other people experiencing the same issue. If you have the opportunity to take part in research, especially for a medical condition you have, I would recommend that you contribute. It could very well influence a change that impacts the lives of thousands of people.

 

A huge thanks to Marnix for answering these questions, I hope you found this an interesting read!  Have you ever helped out with any research before?  Let me know in the comments below if you have.  I am looking forward to the outcome of this research and the changes it could make to our ongoing care and treatment.  I will be sure to let you know when I have more information from this to share.

nat

An Interview With… Jamie Pearson

Through blogging I have met some incredible and brave people.  During the course of me appearing on The IBD & Ostomy Support Show, I met Jamie.  He lives not far from me which was an obvious starting point for a conversation.  He has become a good friend and is always there for a chat and check in.  I asked Jamie if he would answer some questions about himself and his diagnosis/surgery from a male perspective.  He kindly agreed and so here we go!

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Can you introduce yourself and tell us about your diagnosis?

My name is Jamie & I am living in Derby. I am a massive football fan & love teaching it and playing. I an a laid back person who is ambitious. I was told I have Ulcerative Colitis over 8 years ago.  All the symptoms started with me injuring my toe nail & being on a long course of antibiotics. The bleeding & constant toilet trips all happened a few weeks after my toe nail surgery.

What surgery have you had as a result of your IBD?

I had my surgery October 5th 2016 for my stoma & left my rectal stump in, in case I wanted a j-pouch created. My surgery was planned after all medications were tried & failed. I was at the stage where I couldn’t go on with the pain and was bed bound.

jamie

How did you feel when you were told you would need a stoma formed?

That first moment I was told I would be having a stoma, I just didn’t take it all in & I felt so scared.  I was thinking does it stink and how will I live a normal life? Then the stoma nurse explained everything and I felt so much better.  Of course I was still scared but at the same time I was now prepared for a new life with my stoma.

Do you suffer with nay other health problems connected to your IBD?

I suffer with depression from IBD & surgery for my stoma. A month in hospital with 2 operations & not getting answers just really knocked me down.  I am now on anti-depressants which are helping.

What do you think are some of the issues men face when dealing with this illness/surgery?

The issues I feel for myself & other men with a stoma or illness is confidence in going out places.  For example  – can anyone see my bag & what do I wear? Also dating is scary. Explaining you have an illness or a stoma & getting into a sexual relationship is difficult to navigate.  The first time you have sex after surgery is a big step.

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What advice would you give to others facing ostomy surgery?

Advice I would give for anyone having surgery is it isn’t the end of the world having a bag. You still can be normal & achieve anything in life. It won’t be easy, but in my case I have become a much stronger person & my confidence is so much better. Also, good support groups are around online. The IBD & Ostomy Support Show I think is amazing on YouTube, as well as the group on Facebook.

You have more surgery planned.  What is next for you?

I have surgery planned for June which is the rectal stump removal to make my bag permanent.  I have been told if I have a J-pouch made it would just collapse.

Have you continued doing the things you did before surgery since having your stoma?

Since my first surgery it took some time but I’m basically doing most of the stuff I did before.  Playing football was a big one but I did that & was so happy.  I would advise whatever you do just rest after you have done it. But yeah, I can do anything I used to do since surgery. I started my blog from seeing yourself & others share their stories. I just wanted to share my experiences and what I went through & if it helps just one person then I am happy.

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Thank you for answering these questions Jamie, I am so grateful!  Jamie can be found on Instagram and he has started documenting his journey through his blog – The Stoma Guy Blog

Please get in touch if you have a story to tell.  I would love to share other Spoonies and parents stories over the coming months, just fill out the form and I will email you back as soon as I can

NatalieThe Spoonie Mummy

An Interview With Rich Clarke

It has been a little while since I did an interview piece as I have been so busy but today I get you introduce you to a good friend of mine, Rich.  I asked Rich if I could interview him about life as a parent of a child with a chronic condition.  Rich’s oldest child, Josh, is nine years old and has a genetic condition (he explains better than I can later on).  Josh has had to spend quite a bit of time in hospital and I was interested on the impact this can have on their family, as well as seeing what kind of support there is out there for families in this situation and how the doctor’s treat Josh and whether they allow him to advocate for himself in as many decisions as is appropriate and possible.

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1 – Could you tell us a bit about yourself, and your family? My names Rich, I’m 34, live in Derbyshire. Been with my partner Amy for 16 years and have 2 children Josh who’s 9, Ellie who’s 6 going on 16!

2 – What condition does Josh have? What symptoms does this cause? He suffers from Mitochondrial DNA depletion of the POLG1 gene. Basically it’s a genetic condition which has formed from a defective gene.  There are varying severities of the condition, luckily for Josh he mostly suffers with muscle weakness. He cant walk and doesn’t eat nor drink so is TPN dependant. 
3 – What have school put in place to help Josh? He goes to normal mainstream school and they are brilliant with him. He has 1 to 1 care whilst he’s there. He has regular input from OT, Physio, and other professionals.
4 – Has Josh ever been a victim of bullying? Does this worry you? No never, all the children in the school know him, and they all think hes ace. It does worry me when he goes up to secondary school that he may suffer bullying more then. But only time will tell.
5 – How good are Josh’s doctors at talking to him about how he feels, as opposed to asking you? They’ll always ask him first how he’s doing whenever they see him and he’ll generally answer them correctly, unless he’s after sympathy then he lay it on a bit thick with his answers and they then look to us for an answer.
6 – How does Josh’s condition affect the family? Not as much as you may think. We do have to plan things more detailed, having to think when meds are needed and TPN will finish etc and obviously there’s things well never be able to do. But you have to adapt your way of life. Ellie misses out on some things, like places to visit as Josh would be bored or its not easily accessible in his wheelchair.
7 –  Do you think Josh would benefit from talking to/being in contact with other children with the same condition? Is this something which has been offered to you? At this moment in time no, maybe as he gets older it may do. Its been offered to us yes. 
8 – As Josh’s parents have you been offered emotional support? Do you speak to anyone else with children who have the same condition? There’s been mention of groups etc but we’ve never felt the need to go to these. No we don’t
9 – Is Josh able to make decisions about his own treatments. Obviously as his parents you and his mum will have the final say but do you both take his views into consideration? What about his doctors? No he’s not, he doesn’t understand his condition at all, to him it’s normal and all he’s ever known. The doctors mainly run things past us, ask our opinions, which a lot of the time they ignore anyway!
10 – I hear Josh’s sister is quite the little nurse! How does she cope with everything and do you ever feel that she misses out on things due to Josh’s condition? She really is amazing! Shes a whizz when helping set up his TPN and doing meds. She takes it all in her stride, we have tears when Josh has hospital stays as she doesn’t want to leave me or her mum. But as a whole she’s brilliant. She doesn’t miss out on all that much, she’ll go places with her mum while stay at home with Josh.
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Questions for Josh
1 – Do you enjoy school? What are the best and worst bits? Yes I do enjoy school lots, my best bits are doing Art, worst bit Maths as it hurts my head!!!
2 – Are the doctors you see friendly? Do they listen to you when you ask questions or want to tell you something? Yes all the doctors that come to see me are nice! There’s lot of them. Yes they listen to me when I talk to them.
3 – Who are your best friends at school? What do you like doing with them? My best friends at Mia and Alix, I like playing with them.
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Thankyou so very much to Rich and Josh for answering my questions.  I agree with Josh about Maths and I am really pleased that he is doing so well and enjoying life and school to the full.  He is a very inspirational little boy.  Good luck and lots of love to this lovely family!