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

Thrombosis Support & Lifeblood..... a match made in heaven?

So tomorrow I have a meeting with Lifeblood:The Thrombosis Charity trustees to put forward my Thrombosis Support idea and how we can work together, and convince them to do so hopefully!

As many of you know this blog was set up not only for me to have a little moan about how thrombosis has affected me and my daily dealings with it, but also because I am passionate about creating a support network for those affected by thrombosis. It is one thing to moan about what isn't in place and what is needed, and quite another to actually get off your backside and do something about it- that is what I am trying to do.

I have had big ideas, and high hopes of what Thrombosis Support can be and visions of advertising campaigns in the future and national races in aid of it, and then often feel slightly deflated when I realise I am just one person trying to make something happen. That is one of the reasons that I want to work with Lifeblood, under their umbrella as it where. They are an established charity with I feel a hole, support, that needs to be fronted and filled- I think that is where my ideas come in. I did not realise just how much red tape there is around setting up a charity and I certainly do not often have the patience with form filling in, I think together we can really help others and make a difference. Also one of things I have noticed is that a lot of the fundraising for Lifeblood is done by those who have been affected by Thrombosis, be that have had an episode themselves, know someone who has been or who has sadly lost a loved one. I think to continue the support Lifeblood so desperately needs from the public there needs to be something in place for them, (not to belittle what Lifeblood already do as that is brilliant a too needed).  A support network where they can interact on a number of different levels with people who know what they are going through, where they can offer each other coping methods, advice, support, compassion and friendship. I go from my own experience, I desperately wanted to communicate with someone who understood the emotional side of my thrombosis, and the continuing effects. I remember my consultant writing in a report regarding my PTS and compression stockings that "the patient should wear full length compression stockings from first thing in the morning till last thing at night, even when on holiday and in a hot climate, though a little discomfort may be felt she will soon get used to it." I really wanted to call him and say "you try wearing them all day in a hot climate!" cheek I thought you have no idea. I needed humility and reality about how my life was now going to be. I really hope that that is what I can offer.

The meeting is tomorrow- if any of you have anything you would like me to say from your personal opinion of what is needed, please let me know.

Thanks for reading and if you're able to please help me raise money for Lifeblood The Thrombosis Charity please go to my page and lets hope that Thrombosis Support can become one of their new initiatives!

www.justgiving.com/katherineelizabeth

Help me, help others, help themselves

National Thrombosis Awareness Week 6th-10th May Swimathon Bakeoff!

So I started the day with a swim and then dropped off a batch of cakes to my friend for her birthday- felt like a national thrombosis awareness week fundraising dummy run!

I will be swimming 8km thats 400 lengths and taking 32 orders for cakes.

Maybe you have a birthday coming up and fancy a cake, perhaps it would be the perfect treat for all of your work colleagues or maybe you just like eating cake and this is the perfect excuse!

Order forms can be downloaded here

If you don't fancy any cakes and just want to sponsor me for swimming check out my page:

www.justgiving.com/katherineelizabeth

Thank you

Also I will be doing a raffle!
Tickets cost £1 per ticket £5 a strip, buy for you chance to win a 13" uber cake!!!

x

National Thrombosis Week 2013 6th-10th May

After the success of last year I am getting myself geared up for this years National Thrombosis Week. I was blown away last year by the generosity and was able to raise over £1000 for Lifeblood and £200 for Thrombosis Support, I am hoping to smash that target this year!.

With that in mind, not only am I going to do something to push my body, I am going to something nice for all of you!

Some of you may now I am partial to a little bit of baking, and will be baking a number of different cakes and breads for you to purchase- I will give a guide price but hey its charity so if you want to purchase them for more I would happy for you to do so!

Here are a sample of some cakes I have previously made:

Details of my fundraising page can be found at :

http://www.justgiving.com/katherineelizabeth

It does not matter how slowly you go as long as you do not stop......

So its been a while since I posted a blog and really since anything else has happened with Thrombosis Support- but as the title of this post suggests, it isn't that it isn't moving forward, it is, it's just I really want this project to work and therefore thinking and taking the time is key.

The end of last year was one of acceptance and not exactly the easiest. As you may know from reading some of my other posts, I was diagnosed with DVT and PE's and now Post Thrombotic Syndrome following surgery where I was not given the blood thinning medication I needed nor any information about the risks of thrombosis, a case is open against the hospital in relation to this.

One of the conditions of acceptance of liability from the hospital was to see Mr Paes a top vascular consultant. I was pleased to see him, to be given the opportunity to see a top consultant in this field filled me with hope, I thought if I was able to see the best he would be able to give me the answers I wanted to hear, to tell me what the cure was, what I could do, what others could do to make all this go away and for me to go back to living the normal life that I did before without any restrictions. I didn't get that. He was very frank with me, and he was able to fully explain what my condition was and for that I was grateful to have the time to ask questions and to be given the truth. He told me my condition is permanent and that I should stop searching for cures. He told me as the damage was in a deep vein that there was nothing that they could do. He told of research in europe where surgeons tried to fix a damaged valve, only to cause a further DVT, and we know the potentially life threatening complications that can come with that. He told me that it was like an incurable cancer and I needed to learn to live with it and not let it get me down.  All very sane, frank advice, but all a bit much to take in and on board.

Those of you reading this who know me, know that I do not dwell on things and no matter what knocks I have had I have always tried to get back up. I had been trying  so hard previously to be positive I was not accepting that this was is, when people asked me how my leg was I'd always reply that things were getting better, if anything to alleviate their discomfort of the situation. But I couldn't run away from it anymore, here was a man who has spent years researching into venus thrombosis conditions telling me that there is no hope.

Now don't get me wrong I am okay, and I am not trying to seem over dramatic here as generally I know I can lead a pretty normal life, but I felt his words take the wind out of my sails and a need to really take in and accept what had been said, my mask of false hope was removed, this was it.

What I think I have found most difficult is the feeling that I am carrying around a ticking bomb. I have Post Thrombotic Syndrome, I have two genetic blood clotting disorders that make me more prone to clotting, I have had DVT and Multiple PE's. My leg swells up if I stand or sit for too long and if I don't do something to stop that swelling to drain that blood I am at risk of clotting again. I wondered is this what I'm going to die of? Will I eventually have a careless day where this just takes over.  I expect we all have things happening in our body that if we don't take care could kill us but is knowing and feeling it a good thing?

The reaction of others can be tough too. "Will you always have to keep you leg elevated?", "Oh thats awful but it will go away right?" "I don't believe thats true things will get better."

I think sometimes it is because people don't know what to say or they don't want to believe it and I feel like I need to say it is all going to go away to save them but it won't.  

If I have learnt anything this last year it is that to truly be able to move on we must have acceptance. Maybe one day in my life time something will be able to be done, but for now I need to accept that this is my life. That I am unable to travel too long on a train, to sit in a cinema without taking a stool, to stand for long than a couple of minutes, to work in an office, in a shop, in a restaurant, to sit at dinner without having my leg up. That when I get married I may need to have a stool so I can put my leg up while I say my vows (it'll certainly be memorable!) But having said that I am still here, I could have not been and there is so much that I CAN do.

My next stage with Thrombosis Support is writing to two local hospitals and my MP to get the support groups set up.  I am lucky that I have an amazing man who I can speak to about all these thoughts, a therapist and a great group of peers at college (I'm training to be a therapist).  But so many people don't have that. When I went in to have knee surgery I was a healthy independent young woman with a bit of a gamy leg. Fast forward two and a bit years and everything has changed. I needed that support group, I still need it. I have good days and bad, living with a chronic illness can be debilitating, and from the stories so many of you have shared Thrombosis can have such a huge impact on life, it can take it away mercilessly and fast with no explanation leaving grief stricken loved ones. We all have times when we need support and I want to be able to provide that. 

HELP ME, HELP YOU, HELP OTHERS HELP THEMSELVES