I have seen Dr. Erkan at Hospital For Special Surgery ( he dedicates all his time to APS research ) and waiting to speak to him after the tes...
Awaiting liver transplant - Kings College Hospital
Hi My husband Les ( 60 ) has just been put on the waiting list for a transplant and we are both obviously scared and worried. Has anyone else...
Never Ending Journey!
So yesterday I was back at Kings College, MRI scan and appointment with the Hepatologist. They have picked up a few new lesions on my liver, ...
immunoglobulin replacement therapy
I have an immunology appointment on Monday with a view to me starting immunoglobulin replacement treatment as I keep getting chest and sinus ...
Hi all, today is the fifth anniversary of my liver transplant op....
I had went to the ER a couple weeks ago and they said I had at the beginning stages of emphysema and I had a lung test done spirometry test d...
Not Missing in Action
For those of you that don't know I have Liver Cirrhosis and Portal Vein Thrombosis along with PV....
So I'm currently down to 5mg of paroxetine. I was on 40mg around November so I know I'm nearly there....
Hi there! It's been 7 years I was d-x with Hughes Syndrome....
Liver transplant and HCC
Hello All, my parents are based in Abroad, my Mom has had a diagnosis of Hepatocellular carcinoma and has been advised that will need a trans...
Inferior vena cava filters to prevent pulmonary thrombosis
My 80 year old mother is due to have a permanent filter implanted in her inferior vena cava because she is at high risk of DVT's and conventi...
New member, new diagnosis
Hey all, I stumbled across this forum via the NHS site and am hoping you can help me please. I'm a 39yr old female and I developed DVT in my ...
Since APS is due to a build up of fibrin, my thought is that we need a fibrinolytic. Ive seen a lot of people on Coumadin, and am wondering i...
Older donor lungs should be considered for transplantation.
With a scarcity of lungs available for transplantation, the use of lungs from donors older than age 60 has been shown to achieve reasonable o...
So I've never written on this page; have done on the MPN Voice ones but never needed to here before. My history is a little complicated; Octo...
Good news about new oral anticoagulants in AF and venous thrombosis - (from HSF Facebook page)
The review only looked at patients with atrial fibrillation and venous thrombosis - APS is an acquired venous thrombosis - but it's a good st...
Portal Vein Thrombosis
I am new to this support group concept, and I think it is very useful to those with medical conditions/concerns. I was recently ( 6 mos ) dia...
Has anyone who suffers from WG and has a thrombosis been taken off their blood thinning medication?...
Art project around organ transplantation
Hi all - thanks for having me in the group. I’ve joined because I wanted to let you know about an art project, ‘ Not Just the Incredibles ’ t...
Formula for boosting metabolism.
Generally speaking, everyone’s metabolism works pretty well. But just as you’d maintain your car, you need to fill your body with the right f...
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