Psychological Impact of Thrombosis

Mental health, depression, anxiety, fear, disassociation, isolation, adjustment disorder, PTSD the list goes on, but even me typing those words feels a little strange and that they should come out in a slightly faded, not quite visible font. Issues around mental health and our emotional responses still seem to me a taboo subject- but it is there, the emotional effects can sometimes be even bigger than the physical effects of the thrombosis, especially if you are the person left behind. You may have no physical disability, but a part of you is missing, has been taken away, brutally, without warning, without explanation and often, though not always, without any empathic acknowledgement of your feelings from the health care professionals you entrust yours or your loved ones life with.

Dr Simon Noble Medical Director of Lifeblood  has had his research paper published in the British Medical Journal which can be read here on the long term psychological consequences of symptomatic pulmonary embolism. I am so grateful to him, his colleagues and the participants for doing it. It highlights an area where more research needs to be done, and shows how important it is to give and hear the patient's voice. The medical professionals we meet along our journey can hopefully offer us the information that we need regarding the procedures, medication and condition we have, however what they can not do is tell us how to feel, nor can they rob us of this. I remember after having my CT scan in a busy corridor, sitting in a make shift wheelchair with leg extension, as I had my leg in a locked knee brace, feeling scared, confused about what was happening and unable to breath. It was there in a corridor that I was told I had multiple PE's, I was in a state of shock, feeling scared and unsupported I will never forget what a doctor seeing my state told me  'stop being silly and calm down- you are only making things worse'. I was shaking and my teeth were chattering, I was having an reaction to the dye used in the scan, and a reaction to the news I had just received in a busy hospital CORRIDOR- I wanted to scream at him, but I couldn't breath let alone form words. How was that helpful? Did he even think before he spoke? What I needed was someone to acknowledge what was going on for me, to tell me that I was having a reaction to the dye, to acknowledge that what I had been told was a lot to take it- to explain to me what that meant, to give me support- not to tell me to stop being silly- being silly was I?

For more information about how you can get and give support to those affected by thrombosis join Lifeblood Buddies here


Help me, help you, help others, help themselves

Never thought I'd be here.......Trainee Psychotherapist, Lifeblood Trustee, Lifeblood Buddies, Patient Day.....

I had a really lovely evening last night with a dear dear friend of mine who has totally turned her life around after a diagnosis completely changed her world a number of years ago. We were speaking about all the projects and jobs she is doing and were speaking about having faith that where you are today is exactly where you are supposed to be, and had everything not happened to her she wouldn't be doing what she is doing today and incidentally loving it!

It made me reflect on my life, my path and what I am now doing, or certainly journeying towards doing and how, difficult as it has been at times I am exactly where I need to be.

I trained as an actor musician and did various acting and teaching jobs over the years as well as working as an estate agent. In 2010 when I met my now fiancé I was working as an estate agent, living with a friend from drama school and just getting on with my life. I wasn't really sure whether being an estate agent was what I really wanted to do, or how I had really gotten there but after my dreams of going on tour had been shattered and with knees that kept letting my down and a bank balance that needed boosting, a stable, steady job seemed the place for me. When my knee started playing up again I thought the surgery I had would take me out of action for a couple of months tops, I never imagined I would never work as an estate agent again, or suddenly live with a permanent condition, PTS, after a DVT and multiple PE's.

I am now re-training in psychotherapy and counselling, am a trustee for Lifeblood: The Thrombosis Charity, am heading up Lifeblood Buddies and am a speaker at the first ever patient day in National Thrombosis Week. Sometimes I really do wonder how on earth I got here, but I know that this is where I am supposed to be.

I remember speaking with a friend some years ago when I was again a 'resting' actor and getting pretty fed up of waiting for something to happen. I wanted to be happy but was so confused about what that meant and everything I did seemed really to be for other people and not my own happiness, answering the question, 'what do you truly want?' is I think one of the hardest questions. My friend told me to go through every job I had ever had, every thing I had done and find the link, find what I really loved about it, what made me tick. My answer: helping people, helping people change/discover their potential, give them support. Even when I was in a theatre show which at the time I hoped would be my 'big break' I spent my time helping the new cast member learn all the dance routines, when I worked as an estate agent I always struggled with the fact that 'our client' was actually the person selling the property not buying, I wasn't someone who really cared for a demanding seller, and getting the best fee possible, what I cared about was meeting an applicant, getting to know them and finding them a property that fit their needs, it was about helping that person find what fits. That's what I am about today.

My re-training is at times really full on, but I am loving it. When I am sitting with a client, being able to really be there for someone and give them a space, it feels right. When I am teaching singing and helping someone reach THEIR goal no matter what that is, it feels right. When I am sat at home and I think of another idea for Lifeblood, it feels right, though sometimes I wish I could run before I can walk, I know I will get there.

Lifeblood Buddies is the first step in, I hope, a focus on support for those affected by thrombosis for Lifeblood. When I was diagnosed and went from being a relatively active, fit young women recovering from knee surgery, to feeling old before my time, it crushed me. I didn't understand why it had happened and I certainly didn't realise that nothing would be the same again. However if that hadn't have happened where would I be today? Still working as an estate agent? Would I be engaged? Would I be re-training? Would I have found what makes me happy or would I still be chasing someone else's dream?

Lifeblood Buddies is there to help you connect with someone who just may understand what you are going through when your world is changed after a thrombosis. I know I needed it. I wanted to be able to express how I was feeling when I was in the hospital not understanding what was going on in my young body. Someone who would understand how the prospect of going to a social event scared me and anxiety took over to the point where I would make up an excuse to get out of it, where I didn't feel able to fully express to those who didn't really understand how everything was making me feel.

If you think you could benefit from joining Lifeblood Buddies, or know someone who you think could click here to go to the application form.

This National Thrombosis Week is 5th-9th May and Lifeblood is having it's first ever patient day. The patient day is exactly that, a day dedicated to patients, where you can meet others who have been affected, listen to talks about Post Thrombotic Syndrome, anti-coagulation, the psychological affect of thrombosis and hear patient stories. For more information and to book you place click here.

Help me, help you, help others, help themselves.

Lifeblood Buddies!!!

So we had a few teething problems but Lifeblood Buddies is now hopefully all tweaked and ready to go!

Lifeblood buddies is there for anyone who has been affected by a thrombosis- anytime in their life.

Maybe you had a DVT, PE or any other VTE episode, maybe this has totally changed your life. Maybe you have come back to full health after an episode, perhaps you lost a loved one due to the condition, or know of someone affected by it. Whether you have just been affected or this has been part of you life for a number of years Lifeblood Buddies would love you to join.

However thrombosis has affected you, your experience can be highly beneficial to someone else, and likewise theirs to you- to be able to have 1-1 contact with someone who just gets it, who can empathise rather than sympathise- who can be with you through the feelings, help you out with practical tasks, have a glass or two of wine, gin, tea or whatever! and talk it out- that's what Lifeblood Buddies is about.

Sometime life throws you stuff- Lifeblood Buddies shows you you are not alone and helps you to keep going, take a break, let off some steam or whatever it is you need.

Sign up to Lifeblood Buddies today!

Help me, help you, help others, help themselves!

Lifeblood Buddies Launched!

Its been a long while since I have posted anything, and this is for a combination of reasons, life has a way of running away with you sometimes.

As many of you know who follow my blog or know me, I am passionate about creating more support for those who have been affected by thrombosis and have been working with Lifeblood for the last 6 months or so on this.

I am very excited to announce that the first initiative has been launched today!!

The Lifeblood Buddy System is a mutual support system aimed to help match those affected by thrombosis in order to be able to offer each other support and advice. Giving people the opportunity to have someone at the end of the phone, the email or to meet up with who can really understand what they are going through. We are also going to have the first ever Patient Day in National Thrombosis Week- so lots of exciting things happening in 2014.

I really hope this is just the beginning of bigger things on the patient support side. Unfortunately thrombosis does continue to affect people and take lives and together we can get through that and cope with day to day life.

For more information go to www.thrombosis-charity.org.uk and to take part in the buddy system click here

Help me, help you, help others, help themselves

Thrombosis Changes Lives...........

Its been a while since I have posted and today after my morning gym routine I notice an update on the Lifeblood: The Thrombosis Charity facebook group that made me stop and think.......

...... the first line said, "Well I get my scan on Wednesday, to see if my leg can be saved......" Wow- it really hit me, this person could lose their leg, a simple sports injury and months later they could lose their leg.

There was something about it happening to someone else that made it more real for me. After a DVT and PE's I now suffer from PTS and have a pretty damning report from a top vascular consultant about all the conditions I am very likely to get due to the severity of my PTS and how limb amputation is something too that could happen to me should my veins get so bad and as a result of the leg ulceration I may get. But it all feels like a narrative, a non reality, but today reading this post from someone I feel like I know through the Lifeblood facebook group, the reality of how much Thrombosis can change your life, and does change lives really hit me. All this could have been prevented, I know it is only a could and not a definite but surely it is worth while fighting for something that may be able to change lives, save lives and prevent complications like this happening. Lifeblood work tirelessly to promote thrombosis awareness in and out of the NHS, and to ensure better preventative practices are in place. My just giving page is still open and if you feel able to please donate, www.justgiving.com/katherineelizabeth 

One day the post I read today could be me, that IS my reality. PTS is a permanent condition, a complication of DVT's and PE's. It affects me everyday. I am trying my hardest to be fitter and in better health and self manage my condition, but what if I can't, and I do find myself in a similar situation to that of my facebook friend. I have already had to totally change my lifestyle, re-train for a new job, imagine just how that would be, and how all the other people affected by thrombosis what they go through, imagine what that sudden change feels likes.

You have a routine operation, you go on a plane, you work in a job where you sit alot, you injury yourself doing sport, you take the contraceptive pill, you fall pregnant, you just go about living your life and then one day everything changes. A blood clot, it prevents the flow of blood around your body, you're in pain, crazy amounts of pain that feels like it came from nowhere, or maybe you feel nothing, no pain at all, then you can't breathe, you feel old before your time, then everything changes- maybe it wasn't found soon enough and your family have to grieve the sudden loss of a loved one, or maybe it was and you are one of the lucky ones but life will never be the same for you again. Hospital appointments, blood thinning medication, compressions stockings, perhaps thats it- the clot has gone and while the situation was scary you can carry on with your life, grateful for the knowledge you now have of what that mysterious pain could be, or maybe this isn't it but the start of a totally different you, a you that has to learn to know their limits, change their lifestyle, think about a new career, adapt their home, lean on others, lose their independence, lose their leg. Now like this facebook friend, it doesn't have to be doom and gloom and I am so humbled by their positivity and bravery, but that requires support, and not everyone is able to deal with what life throws at them. I wasn't offered any support from my hospital & I am forever grateful for the support I have from loved ones around me, but I got nothing from the consultant or vascular team. 'Your life has totally changed and will continue to do so, the end.' I am not blaming them, there is no support available, but there should be, there has to be and if I have anything to do with it there will be. It's not easy asking for help, but that is what I am doing. Please help me get to my target- or even smash it and think of any other ways I can continue to raise money for Lifeblood The Thrombosis Charity- with me they will implement support for those affected by thrombosis, and though prevention is key, if you are faced with new challenges due to Thrombosis, you won't do it alone and support will be available.

Help me, help you, help others, help themselves

National Thrombosis Week Day 5- 8km Done!

Just got back from nannying and am feeling utterly exhausted- Day 5 done!

Its been a busy week of nannying, teaching, placement meetings, college and of course raising money for Lifeblood

I decided to challenge myself to swim 8km thats 400 lengths and bake cakes and delivery them to lovely donators.

Well I have done it! I have a couple more orders for cakes and can take a few more so if you want some cakes download an order form from my justgiving page- I will also be announcing the winning of the raffle to win a 13" uber cake tomorrow exciting stuff!

I can't believe that two years ago I was in a wheelchair and now I've just swam 400 lengths! I still remember first starting hydrotherapy and my exercises in the pool with James, then working my way up to 1 length then 5, then 12, then watching videojug swimming tutorials to learn to swim properly and now well- I can't even believe that was me!

Now it is time to rest, relax and hopefully reach my target of £1250.

If you can help in anyway I and Lifeblood would be so grateful.

www.justgiving.com/katherineelizabeth

DAY 2 NATIONAL THROMBOSIS AWARENESS WEEK 2013

So I have just got back from the pool after completing another 100 lengths!!! I have now done 200 lengths (4km) and am half way to hitting my 8km target. In a mo I am heading to the kitchen to start baking some more cakes for the bakeoff part of my fundraising and am really hoping that with your help I will be able to hit target and raise £1250 for Lifeblood:The Thrombosis Charity.

While I was swimming my last 20 or so lengths I started to think about how far I have come over the last two years. Today is the Wedding Anniversary of the lovely Bill & Emma Pragnell and I remember being at their Wedding in my wheelchair, a lot heavy than I am today and still finding it hard to breathe. I look at the picture below and I can't even really acknowledge that it is me.

My journey over the last two years has been pretty up and down- first the reality of having a DVT and multiple PE's, not being able to breathe, still trying to recover from knee surgery, not being able to dress myself, have a shower, make myself a drink/food or really do anything without feeling like I'm going to pass out. The reality of all that and how it impacts your independence, not being able to work, having to move in with my partner came with its positive and negative qualities. Then beginning to understand my limitations, going back to work a bit, then a bit more, feeling more positive about it all then being hit by the news I have Post Thrombotic Syndrome and that this will never go away. Of course there are good days and bad days but suddenly the realisation that this is a permanent condition. Surgical stockings will always have to be worn, blood thinning injections taken when flying and really trying to to tune in and listen to what my body is saying on a daily basis.

It is been an emotional journey too, fear, anxiety, anger, childish 'its not fair' moments. After getting myself as 'better' as I could I have really been focussing on the support and well lack of support to those affected by thrombosis, hence the blog Thrombosis Support. This month marked a turning point for that quest and journey as I had previously felt so alone and unable to do anything. A great meeting with the Lifeblood trustees enlightened me to the red tape surrounding anything like this, that I had already begun to discover, but also I saw a group of people who were behind me, and could give me the platform and support needed to make something happen. I am more determine than ever now to raise money for Lifeblood, to give my time and ideas and use my training in psychotherapy and the colleagues I am meeting to really give something back and let people know they are not alone.

This is me today;

a little tired maybe, but happy and hopeful that things can and will get better, and that sometimes it is time to stop blaming & moaning and start making things happen. Please if this touches you in anyway and you feel you may be able to help go to my page www.justgiving.com/katherineelizabeth

You can check out my video diaries here:

Have a fabulous day and thanks for reading!

Help me, help you, help others, help themselves