Hello, I have just found this forum, I never knew it existed! I have been posting in the the British Lung Foundation forum, love,y bunch of people there
I shall try to explain what has been going on...
Pretty much for the first 7 months of this year I have been bed bound and unable to weight bear on my left leg. Had a massive flare up if osteoarthritis in the knee, since found out from MRI scan that I have no cartlige left and my bones are grinding. It's very painful still and I cannot straighten my leg. Well being so inactive I developed multiple blood clots in both my lungs 3 times in the 7 months!! I would go in and out of hospital like a yo yo. I was given Apixaban to take and after 3 weeks of being on it I started to notice I was having trouble breathing, and appeared I had caught a nasty bug from the hospital on one of my stays. I could not eat of drink anything for around 8 days, the GP visited me at home and called an ambulance, I was given more emergency treatment for blood clots and dehydration. I was in hospital weeks. They took me off Apixaban and administered fragmin injections whilst in hospital, these seemed to be fine for me, no ill effects at all. Apart from a severely black and blue stomach!! So they sent me home and I self administer 18,000 units of fragmin to myself every evening, it took a while to get used to injecting, I am really petrified of getting blood clots again I think I would do anything! I had a check up with the anticoagulant team and I am on fragmin injections indefinitely. See there is no news as to what they are going to do with me regarding my knee, I am 44 and they say I am too young for a total knee replacement! Oh there are other issues, my weight for one! I am a quandary it seems to my gps as they have no idea what to do with me! I am still not mobile, still very breathless with any exertion... Oh yes apparently I now have to take a daily calcium tablet as taking fragmin long term can cause. Me to have brittle bones!
There are reasons why they did not put me on warfrin, I have SpLD's, dyslexia, dyspraxia and dyscalculia and would be too stressful and frustrating with the constant checks and issue of different tablets. Also I am a nightmare to get blood out of too! It took a Dr 12 attempts once to get a sample, and it was no good as it clotted! So the whole warfrin thing was deemed not a good choice! Apixaban was out due to what happened to me! And the did suggest riveroxaban but I did not want this as I have done some checking on this and there are a lot of side effects, and as it happened they tried me on it for 2 days and I was very ill with it! So that's out! So this is why I am on fragmin injections!
To be honest I don't like the injections, but with me still not being active it's the best so.ution for now. I am worried at exactly how long term I will be on it? Is there anyone here that takes fragmin daily and has done for years? Would be interested to know how long you have been on it.
My next appointment with the anticoagulant team is not for over a year!! Crazy...
Does anyone rate the stockings? The compression socks? I have wanted to try them too, but my legs are not small or a normal size! Was wondering if some can be ordered for larger legs on NHS? Curious!
I am thinking with me being breathless still, I have a cough, it just won't go away.. It a mucus one and is very annoying! Do you think this maybe connected?
Think I had better stop writing now! Lol to give you all a chance to read!! Sorry but I don't have anyone to talk to about this.