Meetings and bank accounts & charity gigs!

So I have been busy meeting with people and putting the wheels in motion for Thrombosis Support.

I am very excited to announce that the Thrombosis Support Bank Account is nearly up and running, just need the ID of the signatory's approved and then we are good to go- I have already raised nearly £200 for Thrombosis Support which is amazing and soon once we are all registered with HMRC I will have our Just Giving page up and running and then anyone can fundraise!

The £200 already raised is going to go towards setting up the website, the forum and the start of the support groups.

Thrombosis Support is here to support and help those affected by Thrombosis be it themselves or a loved one so I am very keen to get input from you about what you want Thrombosis Support to be.

I will be looking for people to be trustees and to be involved in Thrombosis Support so please contact me via our facebook group or leave a comment on the blog if you want to be involved.

I had a very useful meeting with Allan Pimentel a Psychotherapist and Deputy Director at CCPE about setting up Support Groups, he gave me lots of information about the effectiveness of support groups and how to format them etc. Next stop is meeting with the local hospitals and I am in the process of creating a questionnaire that I want to be readily available for patients at their anti-coag clinic regarding after care and again trying to find out what those affected by thrombosis need and want in the way of support.  I know I felt very alienated when I first was diagnosed and needed support and guidance.

Next on the agenda is a Charity Gig, performing is my first love and I am blessed to know some very talented people, so watch this space for info regarding this.


Help me, help you, help others, help themselves

DWP appeal......done!

So it has been a busy couple of weeks with some very positive outcomes and lots of things happening.

As I have vented a little previously since having a thrombosis, I have really struggled to get any support from the Department of Work and Pensions.  In January of this year I began to try to go back to work, I love working, I am a workaholic and rarely have just one job, so not being able to work due to the DVT & Pulmonary Embolisms was killing me. I live with Post Thrombotic Syndrome and while I have to be careful and I do have limited capability I will not let it stop me from working and getting on with me life. Anyway January this year I started back at work, in the second week I ended up back in hospital- I tried to do two 8 hour days at a desk, leg slightly elevated but it was to static, my leg was so swollen and painful it took two days for the swelling to go down.  I had tests in the hospital as they suspected another DVT, but thankfully it was just swelling due to PTS. I reduced my hours and kept trying.  In February the DWP requested I go for a ATOS work assessment, to assess my capability for work and my eligibility for Employment Support Allowance. Since my surgery and subsequent DVT, PE's and now PTS I had received no help , no support. Prior to this I worked I paid tax and national insurance, INSURANCE, which I thought was for when due to no fault of your own you couldn't work full time.  The assessment was a joke, I was told I did not have limited capability for work and was entitled to nothing, did they not know me? If I could work full-time I would, I was really trying to get my life back on track and just wanted some support, some help, not only where they not helping me, but they didn't believe me- what did they want, for me to stand there and then they could watch my leg change colour and swell up!?

And so began the fight, the letters to the DWP appealing, letters and meetings with my GP, my physio, my employer, my consultant- I had to pay for letters that provided evidence of my condition, even though I have a medical certificate that states I can work only part-time and with limitations. In April I increased my hours and again in June. According to the DWP you are entitled to Employment Support Allowance if you have limited capability for work due to disability or illness and can work up to 16 permitted hours. As of June, I am now working more than the 16 hours permitted hours. Frankly I think this system stinks, when you are gradually trying to get back to work you can't go from 16 hours to full-time, I think it should work on a tiered scale, work up to 16 hours get x amount up to 20 get x amount up to 30 x amount and then above nothing or something like that- but it doesn't.

Along the way I have kept the DWP informed of my condition, of my working hours and have asked on numerous occasions if there was any other help I was entitled to, or could apply for, I got no information.  My case was going to tribunal. I have been struggling but getting by, on so many occasions I thought of giving up, and just getting on with it, but I just couldn't let it go, it felt so unjust, how can they even comment on my condition without understanding it? they don't live it, they don't have to sit with their elevated, they don't get pain from a simply train or car journey, from sitting down or standing still for more than 5 minutes. So I kept fighting and I am glad I did.

On the 7th July at 3pm I had my tribunal hearing at Bexleyheath Tribunal & Courts office. Honestly I was really nervous, I knew I was totally in the right, I had been honest about my condition and how much I could and had been working, I had all the evidence, but I still felt sick in my stomach. I was glad it was coming to a head though, the fighting, the constant letter writing would after the hearing be over. I went into a room with a Judge, a Doctor and a Clerk. There was nobody from the DWP there, good I thought. They had all my evidence, the Doctor asked me a couple of questions regarding my condition, and my limited capabilities, then asked me to leave the room for 5 mins. I came back and there was a letter on the desk, they told me they had made their decision and that they would write to the DWP. I took the letter and left.  The letter read:

The Appeal is allowed
Miss Johnson has limited capability for work
Total 15 points meets the threshold for an award of ESA




I smiled the biggest smile I have smiled in a long time, they believed me and I was right, I don't think I have ever felt happy that I have limited capability for work, when I first got the medical certificate from my Doctor telling me I had a permanent condition my heart sank, whereas on this appeal notice, I felt accepted, recognised, visible. I left feeling a sense of satisfaction, I went home read the small print and the DWP doesn't have to pay me any back dated benefit. I am contested 3 months of ESA, I really don't think they will not pay up, I certainly hope not, but anyway I won my appeal and that is what matters.

Let's get things back on track.......

So, it has been a while since I have posted anything, the last couple of weeks have been crazy busy.

I finished the 31km for Lifeblood and after it was pretty exhausted, thank you to everyone who has donated so far, I smashed my target for Lifeblood and have raised £1070- let's hope it continues.

I then was able to tread the boards again. Prior to my knee surgery and subsequent VTE episodes I performed on the stage and this was something I didn't really think I would be able to do again- I performed in the Come Dancing Concert at the Theatre Royal Stratford East, it was great to be doing what I love again, I apologise to all those in the cast, especially in the girls dressing room who had to deal with me sat on the floor in the interval and between shows with my leg shoved in the air trying to drain the blood! My post thrombotic syndrome was hurting but it was certainly worth it and I was sensible after the show and kept active and my leg elevated. The post- show blues has just about subsided and I am able now to focus again on Thrombosis Support and what I want to do moving forward.

I have been lucky enough that alongside my fundraising for Lifeblood I have been able to raise a little money for Thrombosis Support, which will help greatly towards setting up the website, forum and local support groups- you can also donate on this blog if you feel able to and I must say a big thankyou to Sonya Raymond for her generous donation today.

As I have previously said I want Thrombosis Support to be for those affected by Thrombosis and so welcome any input. My aim is to provide support, via the web, forums, information, local support groups, support grants etc. to those affected by Thrombosis, it changes lives, and unfortunately takes away lives and I know that there is a need and want to offer support.

If you have any ideas, thoughts, wants, needs related to this please contact me either leave a comment on the blog or request to join the Thrombosis Support Facebook Group

My next few tasks are the forum, website and contacting local hospitals about setting up support groups via the anti-coag clinics- I shall report back on my progress.

Thanks for reading!

Help me, help you, help others, help themselves

Final Video blog showing my journey to 31km!

Day 5 Fundraising done!

So I have done it- I have completed 31km in 5 days for Lifeblood, the Thrombosis Charity.
I am so pleased to have done it, I am super tired. Here's how I did it:


Monday
Cycling 6km
Running 1km
Swimming 1km
Total 8km


Tuesday
Cycling 5km
Running 1km
Total 6km


Wednesday
Cycling 5km
Running 1km
Total 6km


Thursday
Cycling 5km
Running 1km
Swimming 1km
Total 7km


Friday
Cycling 3km
Running 1km
Total 4km




I am off tomorrow to Kefalonia for a long weekend break to see my cousin, a well deserved rest I think.  When I get back I am going to edit together my video blogs into one to show my journey and try to get some more sponsorship. Thank you to all those who have sponsored me so far.


If you are able to give anything, even just a £1 please please go to my page, www.justgiving.com/johnsonkatherineelizabeth.

Day 4 27km done! me swimming & everything!

So it is the end of day 4, and I have covered 27km of my target 31km in 5days for National Thrombosis Week, for Lifeblood.


Today I have been overwhelmed by the generosity of people, people who I have never met, who don't know me, he know me only as James' partner. Thankyou, Thankyou, Thankyou. The money you are donating will help Lifeblood to continue to do the amazing work raising awareness of Thrombosis. This is just the beginning for me, I am so proud that I have been able to achieve this, I know I haven't finished yet, but I also know that I will. When I was in the hospital, when I was in the wheelchair I never imagined that I would be able to cycle, run, swim, so that I am doing it one year on is amazing.


I am going to be setting up Thrombosis Support, an organization that works primarily to support those affected by Thrombosis, emotionally, factually and financially. That is the next project, there will I am sure be more fundraising to come for that, and I have certainly proved this week that I am able to do something. I have set up a support my blog tab, at the top of this blog, if you are able to give something, I would be most grateful. The next step for Thrombosis Support is the website & forum and this costs. 


Please help me, help you, help others, help me


Thanks for reading

Day 3- Tired, but still powering through

So I have just got back from the gym, and I have done 6km today so am still on target for my 31km in 5 day challenge.


Whilst in the gym I was doing my strength exercises,stretching and listening to Jessie J 'Big White Room', it brought back lots of memories of being in hospital, of laying in the hospital bed in so much pain, not being able to breathe, not being able to walk, not being able to be me.


I have come on so far from those days, and I can't even believe it was me, it feels so unreal. For any of you who know me, and saw me in that hospital bed, or pushed me in my wheelchair, who helped me try to begin to walk again, who have been the support for my leg when I have needed to elevate it, look at where I am now, please help me to give back to Lifeblood so this doesn't happen to someone else. DVT's & PE's are preventable and treatable, I am lucky I am sill here, so many people don't get that chance. For those of you who don't know me, and are reading this blog, firstly thankyou. I am just one person trying to give something back. This week is raising money for Lifeblood, moving forward I want give support to those affected by thrombosis. If you have been affected by thrombosis please contact me, tell me your story, tell me what you need, what you think will help. I am full of ideas, and I want to make these a reality.


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

NTW- Day Two Fundraising

So it is 22:40 I have recently got in from teaching and it is safe to say I am knackered! I started off my day in the gym and did 5km cycling & 1km running, so I have done my goal of 6km today horray!! In total I have done 14km of my 31km target, which isn't bad on only day two.  After my gym session I was in the office for a bit then headed home for some food, and leg rest before going to teaching. I was sat with my older class today and told them briefly about what I am doing and about what has happened to me in the last year and half, their faces really showed the enormity of it. These children are between 15 & 18, and I don't think any of them knew about thrombosis, what it was, how it can kill you and how quickly it can come on.  I wasn't trying to scare them, and I think they know that, it is just about awareness, we spoke about Lifeblood's latest campaign and it felt good that I was able to have a really honest conversation with these children and hopefully they will take that on and maybe tell others.  I personally think the next challenge is making young people more aware of thrombosis.  For so long it has been seen as something you get if your old and can't move, or if you go on planes alot. It isn't, anyone can get a bloodclot, healthy, active, young, old, anyone, and people need to be more aware of it, and to stop it, and if it happens, to treat it and keep going!

Please, please go to my page www.justgiving.com/johnsonkatherineelizabeth and give something, anything, whatever you can. 

Right tomorrow at least 6km!

National Thrombosis Week- Fundraising Day 1- done!

So I have done it, I have completed day one of my fundraising for Lifeblood, I covered 8km today so am just over 25% of the way there to my goal of 31km in 5 days. It is safe to say I am pretty knackered, however on a positive note my leg is feeling pretty good. This morning the PTS was really bad and my leg had swollen up by the time I got out of bed went to the toilet and went to the kitchen, however it is now feeling much better after a day with quite a lot of exercising, so thats good.


I feel really positive that I am starting my fundraising for Lifeblood, and even though I ultimately want to start my own charity, I am so grateful for everything Lifeblood does and it feels good to be able to give back.  I only hope that in 10 years time when the Thrombosis Support Charity is working to support those affected by Thrombosis, I am able to thank people for fundraising for me, and that the charity is able to help those in need. 


Thankyou again for reading my blog, please pass it on, go to www.justgiving.com/johnsonkatherineelizabeth and give whatever you can.


Have a fab evening


x

Fundraising Day 1

National Thrombosis Awareness Week- Day 1

So it's day one of my fundraising & oh what a busy day it's been- I've been tackling iMovie trying to make a fundraising clip & hopefully I can upload it later. I got to the gym & managed 6km on the bike & 1 km running, quite impressive for me, especially as this time last year I was in a wheelchair- I am hoping to to 1km swimming later. Check out my video and my page www.justgiving.com/johnsonkatherineelizabeth

What's it all about anyway??

So I felt like I wanted to really put it out there, what this blog, the subsequent forum and website, and my whole thinking behind Thrombosis Support is. I feel like I have been boring you all with the DWP saga, and whilst I will go back to it (YAWN) today is about other things.


I want to create a charity/organisation/whatever you want to call it, that works primarily to support those who have been affected by Thrombosis. You may have had a DVT, PE, have PTS, or you may have been diagnosed with a Thrombophilia. You may have be one of the unlucky ones who has had a loved one taken from you due to thrombosis, or you may be someone who knows someone affected by thrombosis and want to help them, however you have been affected, I want Thrombosis Support to be able to help. 


I first had thoughts of a need to set something up when I myself was struggling to find support, and really come to terms with what had happened to me. I had gone from being a relatively healthy young woman, to someone who was either in hospital or going to clinic every week, sometimes twice a week and well who was generally quite unwell. 


As I have said before when the thrombosis hit, it was like a wave crashing over me, and everything changed.


The first thing I have set up is this blog, thrombosis support, I thank you all for reading it, re-posting, re-tweeting, following & telling others about it, please please keep doing so. I will be using this blog to share my experiences with thrombosis, and also my ideas for the future of thrombosis support, I welcome your feedback & comments. I want thrombosis support to be what people affected by thrombosis need, so do get in touch and let your voice be heard. 


The second thing is the Thrombosis Support Facebook group, search for it on facebook and get involved. 


The third thing I am working on is the Thrombosis Support forum, where people can chat with others about their experiences, gain some support from like minded people and be able to search through topics, as the issue they are having someone may have had before.


The final thing is the website- fundamentally I want the website to be able have all things support. Information about what thrombosis is, information about how to get it tested, treatment. Information about if thrombosis does happen to you what to do next, how to deal with adjusting to everyday life, where you can purchase stockings, support aids. I would like to set up support groups which can be advertised on the website, be able to offer different types of therapy, advertise fundraising events, offer advise on what benefits you may be entitled to and offer support grants if you are struggle with the financially implications of having a thrombosis.  The list goes on and I welcome any input from other suffers of what they would like Thrombosis Support to have. 


I am in the process of setting up Thrombosis Support as a non-profit organisation in order to be able to begin fundraising for it, because ultimately while I can do some of the above without funds, I need help to set this up. I know that there is a need and a want for a charity for thrombosis suffers and those affected by thrombosis, to support their life post thrombosis and make that adjustment a little easier. In the interim I have set up a donation tab on this blog where you can donate whatever you feel you can, I gratefully receive any help.


As many of us know there is one charity out there in the UK, dedicated to promoting awareness of thrombosis within the medical profession & publicly.Lifeblood


When I first came out of hospital Lifeblood, where a tremendous help, they gave me information about my condition, and showed me that I wasn't alone. Anyone who wants more information about thrombosis awareness should go to their website.

I feel like I want to give back to lifeblood and as such am doing some fundraising for them in national thrombosis week. Please check out my just giving page for all the information:


http://www.justgiving.com/johnsonkatherineelizabeth







Right I think that is quite enough for now- thankyou again for reading and please spread the word.


xx

DWP the story continues......

So, after James & I were refused Disability Living Allowance & Carer's Allowance, we just carried on, I was to ill at this stage to fight it, so we just powered through, living off James' wages and the Employment Support Allowance of £71 a week.


In January I started back at the office where I had previously worked full time. I was unable to do the job I did before due to the PTS, and still being a bit wobbly on my leg due the knee surgery, so we had decided it would be a desk job helping out the other members of staff, and I would work on reduced hours, with the hope to increase these in February. 


Ever the optimist I started back 10-5, they put me in a stool to elevate my leg, unfortunately it couldn't go any higher than 90 degrees, but hey it was better than nothing. In my second week back at work I ended up back in A&E my leg was so swollen and painful and the swelling wouldn't go down, I also felt a little breathless. 


I still remember going into the office the day after my leg had ballooned, just pretending it was fine, ignoring the pain.  I didn't want to go back there, after months of being in and out of hospital I had had enough, I didn't want to entertain the fact that I may have another clot, so just tried to ignore it, to push it away. Why did I have to go through this again?


I was scared, scared that it may be another clot, scared that it may not and this was just the way it was going to be, constantly worried that the pain I am having may kill me, or may just be pain from PTS. A daily paranoier .


I went to the hospital, I was in A&E for I think around 7 hours, blood tests, scans, lines in, lines out, was this really happening again?


Thankfully it wasn't another DVT, but a massive wake-up call that I have to listen to my body. The doctor there explained it really well,' you have PTS, which means the valves in your leg where the clots were are permanently damaged and won't let the blood flow normally, if you sit for too long your blood builds up where it can't get past the blockage and your leg swells, if you continue to do this, and don't elevate your leg, or keep it active, the blood has nowhere else to go and it will clot' Add to that the fact I have Factor V Leiden and Protein C Deficiency, and have now been taken off warfarin as the negatives out-way the positives, it is safe to say that wearing compression stockings, not sitting or standing for too long and keeping my leg active or elevated are pretty important.


So when I was called in to have a work assessment by ATOS for the DWP, and they decided I did not have limited capability for work, I was, well, am livid. 


I revised my working hours and started doing two days a week 4 hours, then 3 days and now 4. For someone who used to work full-time in the office as well as nannying and doing photoshoots, to now only be able to cope with 4 hours, 4 days a week, is , well, frustrating. And even doing only these few hours I am in pain, I get up every 30 mins or so to walk around, I go home and my leg is swollen and painful, but I want to work so I just suck it up.  I received the letter from the DWP telling me that my Employment Support Allowance was stopping as I no longer had limited capability for work, and I was now not entitled to any help for them. I felt deflated, how was it that now, due to no fault of my own I can't work full time, and my doctors have told me I will always have PTS, and thats it, no help. I want to work, however I want to be safe, I don't want to end up back in hospital again. How is that fair to go from earning a full-time salary to not, and not having any help to subsidise that. Isn't that what we pay national insurance for? So that if through illness we can't work to full capacity we have insurance? My daily spending hasn't gone down because of my medical condition, if anything it has gone up! Surgical stockings, physio, using more taxis etc. 


I felt let down & empty, oh well, I guess I'll just have to cope.


No, what they are saying is not true, so I wrote an appeal & I wrote to my local MP. I will accepted a decision based on truth & facts, but this wasn't, and I will fight it.

The Department of Work & Pensions, where it all began

So I don't know whether I really want to bore you all with the ins and outs of my battle with the department of work and pensions, so I will just give you a little over view to get you up to speed as it were on where I am at, this blog will be stage one!


When I got the clots in my leg and on my lung, everything changed.


Even though I was recovering from knee surgery I was doing ok, I was independent, well some might say stubborn, and would do things for myself whilst balancing on crutches.


When the blood clots hit, a kind of wave crashed over me and I couldn't do anything. I couldn't place my leg down on the ground without crying in pain, the throbbing in my leg was so intense and no amount of painkillers seemed to make it go away. I couldn't breathe, wow, I couldn't breathe, just typing that brings back so many horrible memories. I'd get out of breath just trying to get from my bed to the bathroom. I couldn't wash unaided, my leg would swell up so quickly, and I'd get so out of breath everything was an effort.


When I was first diagnosed and discharged from hospital I was still living with Luke, he and Mike were a massive support, as much as they could do for me they did. But James, my James was there, he would work from my flat, changed his meetings, come to the hospital with me, as much as he could he did, he was pretty much, well no he was, my carer. He helped me get dressed, he helped me wash, get me in and out of the shower, the bath, helped me wash my hair, got me food, helped me into bed, helped me start my physio, everything. I eventually got to the point where much as I wanted to stay living with Luke and have my independence, not only did I need 24-7 care I couldn't afford to stay living at Luke's. I didn't even try to apply for housing benefit and council tax benefit.  The thought of trying to fill out all those forms, when I was struggling to breathe was too much to bear, as it was I was spending all my efforts documenting everything that happened at the hospital that got me to where I was, but that and the subsequent complaint is for another blog.


I moved in with James at the beginning of July, and we just kept muddling through. Still unable to work, we were advised that I was now disabled and that we should apply for disability living allowance and carers allowance. Benefits hadn't really crossed my mind, I was just trying to get through each day, try and keep my INR stable and just stay positive. So the thought of considering myself disabled was odd, totally random and well laughable. I am 31 years old how can I be disabled?


Disabled-

Adjective:

(of a person) Having a physical or mental condition that limits movements, senses, or activities.

Well I guess this is true to me and I am disabled, and so James and I got the forms and filled it all out, the very long, laborious forms we filled them all out told the truth and sent them back. Feeling positive and hopeful that yes all the questions we answered did relate to us and well great we actually can get some help getting through this, wow if only we had known this before, why didn't the hospital make us aware of this? Oh well better late than never.

Wrong, the response I got was, 

Although you have difficulty, you don't need help to get in and out of bed, use a bath or shower, dress or undress, get up and down stairs, move about. You are not entitled to help. The next day I fell when I was in the bath, the bruise was massive. But of course I didn't need help...............................

Two sore fingers! & a day in the life of PTS

Ok so the blog has gone live and the response already is amazing- thankyou, thankyou, thankyou- keep retweeting, keep facebook posting, keep following and tell everyone you can- forum will for sure be coming soon watch this space!


I have just spent around the last hour reposting and retweeting, and now have two sore fingers but I know it is all for a good cause.


I am proud and happy that I have turned around today, it did not start well..............


This morning I had a hospital appointment not for my leg, not for anything to do with thrombosis actually, which felt very strange! but for my teeth.


I have impacted wisdom teeth, as if I didn't have enough to deal with but hey, and until now I just popped some pills and dealt with the pain, they wouldn't touch me as I was on warfarin and well if they did it may have been a scene from a dodgy horror film with blood splurting out of my mouth, you get the picture. Anyway now I can go and get it sorted, so had an appointment at the hospital, pretty straight forward right? hmmmm not so unfortunately.


I get ready this morning, put on my delightful full length compression stocking, am glad its not raining, however the sun is out and its seems pretty warm, I pick out the outfit that will be the most comfortable and light weight, layers seem to work!  I check out which hospital I have to go to, the journey doesn't look to long and hopefully I can sit. The thing is sitting hurts, standing hurts, even with the stocking on my leg swells up within around 10 mins but I have to get to this appointment so I just suck it up.  I get to the appointment and explain to the receptionist that I need to keep my leg elevated and did she know how long the wait was going to be, ' first appointment around 3 hours' THREE HOURS! hmm well at least I'm in a hospital if I do get another DVT, when I ask about keeping my leg elevated I am faced with a 'what do you want me to do about it' look and well no help, it will get busy deal with it. 


I wait, thirty minutes passes, I wait, an hour passes, can you go to x-ray. I go to x-ray I wait, I wait some more- I am now sporting a leg that feels and probably looks like a cave mans mallet.  I see the Dentist, she apologises for the wait we discuss the prognosis and I go home.


I get into my flat and the first thing I do is shove my leg in the air and wait. I wait for my leg swelling to go to down, I wait and feel the blood trickle down my leg, its gross but also quite satisfying as I feel my leg return to a relatively normal state.


I then begin to make the calls to get more evidence for my department of work and pensions appeal. I won't go into the fine details now, thats for another blog, but to cut a long story short, according to the department of work and pensions I am fine there is nothing wrong with me and I can work full time. This is not the case, believe me if it was I would be, those who know me know I work full-time, plus-time, over-time I don't remember a time when I only had one job.  Anyway the case is going to tribunal and I need to provide more evidence of my condition, so I have spoken to my employer, my physio, have an appointment with my GP and am now making the call to my Haematology consultant.


Whilst online looking into designing my blog I get a call, its my consultants secretary. She has spoken to my consultant and really doesn't know what else he can write. Back in December my consultant wrote a statement of my health, condition and confirmed that I could work part-time with work placement adjustments, but I need something more up to date, more specific that talks more about Post Thrombotic Syndrome and what it means for people with it.  My conversation with the secretary goes round and round in circles, ' I'm not trying to be difficult Katherine but what else can we say, your consultant has specified your condition', I know but they won't believe me, can't you just ask him to write something more specific, confirming that I can't sit for over an hour without getting up to move around as my leg is swollen. She is exasperated, in her eyes she has done what is needed, I'm exasperated, the DWP won't believe me, I just want a fair trial based on truth and facts. We end the conversation, she will ask the consultant again and get back to me, I'm not feeling hopeful. I put the phone down and slump on my bed, the tears are uncontrollable. I'm tired, I'm exhausted by the fight, the constant explanations, the judgements.


Why won't someone help me?




Help starts from yourself, I dust myself off and start the blog.
Some days are good, some days are bad, but at least I have the days, I'm here, fighting for support, fighting to be heard and it will get better. 

Lets get this started..........

So back in November 2010, I went in for pretty full on, but seemingly standard knee surgery, fast forward a year and a half and, well lets not sugar coat it, I've been through it. I was diagnosed with a right leg DVT in February 2011 and within two days I couldn't walk, couldn't breathe and had 3 PE's (pulmonary embolisms (clots on my lung)). A hospital stay and regular visits to the anticoagulation clinic and here I am, fought off the DVT and PE's and now live with PTS- Post Thrombotic Syndrome. 


The last year and a half have been a roller coaster of emotions, and I have felt like there needs to be support. Support for those with thrombosis, support for those who have had it, support for those friends and family members affected by it, SUPPORT! Am I making myself clear???


I stumbled across Lifeblood the Thrombosis Charity www.thrombosis-charity.org.uk and was able to get a lot of information from them. The work they do is amazing and so needed, striving to raise awareness to the public and health professionals, however it really annoyed me that I had to search the internet to get to them myself, why were the hospital haematology departments not working together with lifeblood? What would you do if you didn't tirelessly search the internet? Suffer in silence? Unfortunately I think so many people do. And so the idea for THROMBOSIS SUPPORT was firmly planted in my head, a blog, a forum, a full on charity, who knows? The journey is just beginning, but what I aim to do with this blog, is tell it how it is, how I am experiencing it and hopefully with that give some help & support, gain some help & support and maybe just maybe make a difference.


Thrombosis Kills




There I've said it, however people do survive I'm living proof, and together we can promote awareness, support each other and make living with this condition that little bit easier.