Monday, 30 April 2012

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 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.