Hi everyone.....Ive just joined after seeing your site on a google search.
I recently underwent major surgery after a clot was behind my knee prohibiting blood flow. I wont go into it all on this blog section but i underwent a fasciotomy from my knee to ankle and i also had the other side of my leg opened at the knee to remove the clot.
I have recently been diagnosed with Lupus Anticoagulant and i also have narrowing of the arteries in the bottoms of both my legs a genetic condition so im told......Ive been injecting fragmin since surgery along with aspirin and a few other meds.
Anyhoos thanks for having me and hope to speak soon.
Welcome and glad you found us, sorry to hear about your clots and diagnosis, but it's great that you have the right treatment and medical care. I think all of us have felt very alone with this and have found friends and support from others who understand. Good to share and we're here and will help if we can.
Hi Kelly, I hope you are feeling bright this morning, and more confident now you have found this site.
Reading your first blog and the replies, it occurred to me that those of us with APS feel stronger when we stick together, gathering on here to gain strength and reassurance from each other.
I thought it was funny that, by sticking together, we find ways to get through problems caused by our blood cells sticking together - like a battle between positive and negative!
Welcome - I would not have got through my personal battle without this site, so I'm glad you found it too. Larraine x
Welcome. I'm a newbie too after being diagnosed with lupus and Hughes. Check out the websites and the directory above as there will b someone near your area to give you some support swell as on here. There are lots of questions posted that might be of interest. Sorry to here about the clot. Mine was in my arm. But hopefully right meds will help support.
Heres a silver lining for you ( in addition to your condition leading you to find us - a collection of the most brilliant people on the planet - IMHO) ) (LOL) :
Although injections are literally a pain, since ( I hope, you did say 'other meds') you're not currently on warfarin you don't need to adjust to that bizarre warfarin diet What makes it bizarre is that we are told to eat less of those healthy veggies everyone else is told to eat more of.
Welcome, and feel free to as, post, ramble and rant! We all do. ( I ramble more then most.)
Gina
thank you everyone for your nice comments and Im thinking im sooooo lucky to have found the most brilliant people on the planet hehe.
Im also a rambler lol but I think its so good for the soul to ramble or I like to think so anyways.
Im glad that im here being honest I feel like I must be boring everyone speaking about how this has all effected me........im the glue the keeps everyone together with my family and friends and I couldn't keep myself together let alone anyone else.
I still suffer a great deal of pain due to the surgery and some days walking brings tears to my eyes and I think im being selfish complaining as my family were told id maybe not make it through surgery and if I did id probably have my leg amputated BUT being a determined wee thing I survived the surgery and also kept my leg.
I have been injecting fragmin and also take aspirin, propranolol ,folic acid, simvastatin ,amatriptoline, omeprazole BUT today I was taking off the injections and put on riveroxaban, don't know much about them other than what ive googled and its all very vague....so if I don't take any funky side effects ill stay on the riveroxaban.
Before this happened I didn't even take a paracetamol for a sore head and now I feel like my days are governed by pill taking........I have a diary and I write down everything I take......I have many blonde moments so I write it all down lol.
Evereyone keeps asking where ive gone............I still have days where im right back there....I was kept awake during surgery as the clot was a anterial clot so they said I was to stay awake.........I spent almost 3 hours rambling nonsense to the anaesthetist bless him as I did speak rubbish as I was so scared I just rambled. I have had awful after care and had to demand a appointment to see my consultant the journey doesn't seem to be over as yet.
Sorry if im rambling im not sure where to put these post if in the wrong place, I apologise.
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Finally got the Hughes diagnosis!
New here
I'm new here - and glad I'm probably not crazy afterall
Hughes syndrome and congenital hole in heart
