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James

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About James

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  • Birthday 09/10/1969
  1. You said her INR was always too low, so I assume she has been taking Coumadin or warfarin. The dosage of this medication depends on the response by the patient, some people take 2mg and someone else takes 20mg and gets the same response. What was her last INR result and the dosage she was on? How long was it in days/weeks between INR tests?
  2. Testing Children for PSD

    Q: If you have Protein S Deficiency and have children, when should you get them tested? A: There is no need to test them, unless there is another risk factor for thrombosis. The statistics show that about half of the people with a deficiency of Protein S stay clot free throughout their lifetime. The other half tend to experience their first clot in late teens or early twenties. Medication, in the form of anticoagulants, is only given to people with a history of thrombosis. So until you have your first clot, you don’t know which half you are going to belong to. And until you have your first clot you aren’t going to be taking the anticoagulants that would have prevented it. This seems a bit bizarre until you consider the cost of blood testing, medication side-effects (and risk of uncontrolled bleeding), and how health services tend to operate. Most of the time health services are responding to a change in health, then diagnosing and treating. It is very rare for a health service to extend to preventative actions unless it is cost effective or save lives (e.g. vaccinations). The cost of treating a few patients with thrombosis is cheaper than testing the whole population for the all the different risk factors. However things are slightly different if you already know someone related to you has already been diagnosed with Protein S Deficiency. But a blood test isn’t going to tell you whether you will or won’t go on to have thrombosis, and so you won’t be put on anticoagulants. So all a blood test will actually do is cause you to worry more about the future, and perhaps exclude you from health insurance or force your hand into declaring it as a pre-existing condition. So why bother? If you are a teenage girl considering birth control measures, then testing is advised before you take any pills. There is an increased risk of thrombosis with some contraceptives, so if there is any family history of PSD or thrombosis then get your PSD status checked first. If you are teenage girl and are planning to, or think you may be pregnant then also get yourself tested because it is relevant to the care of your baby and the doctors will want to know about it. Other than that, assume that it is good and healthy and sensible to take precautions in certain circumstances, such as if you have an extended stay in hospital (e.g. a broken leg) or taking a long journey (plane, train, whatever). Precautions means staying hydrated, avoiding alcohol, exercise normally, staying the right side of obesity, and maybe wear some compression stockings. Everyone can do this, you do not have to be diagnosed with PSD to reduce the risks of thrombosis. If you are under twenty and want to get yourself checked then by all means do so. However even if you are given a PSD diagnosis the doctor isn’t going to give you anticoagulants. And without them you may find out the hard way whether you are one of those people that gets to experience their first thrombosis event. But do so, knowing that the symptoms can be recognised and treatment is available. Not getting tested is probably the most practical way forward... it makes no difference to your actual risk of thrombosis... but at least you can keep your medical history to yourself and gain the benefit of insurance cover. A simple (D-Dimer) blood test can rule out a false alarm... so always get yourself checked if unsure. If the blood test comes back positive they will do an ultrasound to see what is going on, then give you a drip with some heparin (an anticoagulant) and you’ll probably be back home in a week or two. Life goes on, and then you start reading about it on the Internet. It affects some people worse than others but generally it is a health condition that can be managed, there is nothing to be worried about, and what will be, will be. Of course, with hindsight, I would like to have been diagnosed correctly after my first episode of thrombosis. Had that been done then I could have avoided the (more serious) Pulmonary Embolism (clot in the lungs) I experienced a year later. For accurate testing you need to wait 3 months, come off warfarin/Coumadin and have two blood tests (twice, as a safeguard against lab error). And of course, understanding risk is a personal thing. If you want to get tested please go ahead and do so. But be aware that the result is unlikely to change the risk of thrombosis but you may find yourself declaring the tests when applying for medical cover and travel insurance.
  3. I know that ECG results can detect a history of PE, but I am not aware of any issues caused by PSD, other than the increased risk of clotting and its pregnancy issues. Your INR nurse has probably assumed that you have a heart related issue because you are taking warfarin. Some people incorrectly believe we have thicker blood. Apart from the Protein S levels it is like the difference between a cup of tea with one sugar and a cup of tea with two sugars... pretty much the same as normal. There is believed to be some kind of role for Protein S in immunological issues, and blood vessel growth (which may actually swing as a benefit against some cancers) but otherwise there are no known health conditions associated. We all have other health conditions besides our PSD, and although they aren’t linked, it is sometimes necessary that the treatment for other conditions is modified to take account of the clotting considerations of PSD. For example with kidney stones we may not be suitable candidates for sonic-breakup and have to pass them instead. Any consultant that works on heart conditions will already be very familiar with clotting conditions like ours.
  4. Graveyard shifts

    Protein S Deficiency increases the risk of venous clotting (blood moves slower in the veins). Clopidogrel is an anti-platelet medication and better suited for prevention of arterial clotting (blood moves faster in the arteries). Aspirin falls into the same category. Maybe your doctor has other reasons for recommending Clopidogrel - warfarin is usually used for people with PSD and a history of clotting. When I was in my early twenties I worked in a call centre on a graveyard shift (BT ASO Grade 2) and found it affected my appetite. Warfarin is affected by diet so this is probably something to watch out for if you start taking it. It’s also difficult to stretch your legs when you are hooked up by your headset so make the most of your breaks.
  5. Don’t bother with aspirin. Aspirin will not prevent you from getting thrombosis. Please speak to your doctor before making any changes to your routine medication.
  6. Blood clotting is a process with many stages and interactions. If you make a comparison to baking a cake you probably know that leaving out a key ingredient, such as the flour, will affect the end result. Similarly adding more of other ingredients, such as the sugar, may tweak the results slightly. Changing other ingredients, such as the raising agent, could give wild and unpredictable results. When it comes to Protein S Deficiency, making changes to your diet may be helpful but it isn’t going to fix the underlying issue. You will still have that risk factor to take into account. However don’t let that stop you from aiming for a healthier lifestyle.
  7. I am on warfarin and take a multivitamin every day. It is called Seven Seas Multibionta Vitality and the Vitamin K content is 22.5 micrograms (30% NRV / RDA)
  8. I am pleased to confirm that our forum software has been upgraded again. We are now using v4.1.7 of IPS Community Suite. This comes on top of web hosting upgrades which involved a data centre relocation to London. Our new hosting facilities now use SSD arrays for storage so page loading times are also improved. With the old software the login system used both usernames and display names for your account identification. We can now only use one. In a nod to the privacy issues raised by Facebook users we have opted to retain Display Names for account identification. The software developers have done an excellent job behind the scenes making further improvements to administration and technical aspects.
  9. http://www.jgc301.com/ch/reader/view_abstract.aspx?file_no=20090102&flag=1 Venous thromboembolic risk and protein S deficiency: ethnic difference and remaining issues Tong Yin,Toshiyuki Miyata.J Geriatr Cardiol 2009,6(1):11~19 Authors: Tong Yin1; Toshiyuki Miyata2 Author Affiliation:1.Institute of Geriatric Cardiology, General Hospital of People’s Liberation Army, Beijing 100853, China;2.National Cardiovascular Center Research Institute, Suita, Osaka, Japan Abstract: Protein S deficiency is an autosomal dominant disorder that results from mutations in the protein S gene (PROS1). Inherited deficiency of protein S constitutes a risk factor for venous thromboembolism. Protein S functions as a nonenzymatic cofactor for activated protein C in the proteolytic degradation of coagulation factors Ⅴa and Ⅷa. The frequency of protein S deficiency seems to differ between populations. More than 200 rare mutations in PROS1 have been identified in patients with protein S deficiency. Among the prevalent mutations within PROS1, the S460P substitution (known as Heerlen polymorphism) detected in Caucasians and the K196E substitution (known as protein S Tokushima) found in Japanese have been intensively studied for their structures and potential functions in the disorder of protein S deficiency. Until now, causative mutations in PROS1 have been found in only approximately 50% of cases with protein S deficiency. Co-segregation analysis of microsatellite haplotypes with protein S deficiency in families with protein S deficiency suggests that the causative defects in the PROS1 mutation-negative patients are located in or close to the PROS1 gene. Large PROS1 gene deletions have been identified in 3 out of 9 PROS1 mutation-negative Swedish VTE families with protein S deficiency and 1 out of 6 PROS1 mutation-negative Japanese patients with protein S deficiency. Intensive sequencing of the entire PROS1 gene, including introns, may be needed to identify the cryptic mutations in those patients, and these efforts might uncover the pathogenesis of protein S deficiency. Keywords: protein S deficiency, PROS1, thrombophilia, mutation, genetic defects Published Online:March 28, 2009
  10. rivaroxaban

    Congratulations on the birth of your baby boy!
  11. Compression Stockings

    I have used Activa Class II (UK 18-24mmHg) below-knee black closed-toe stockings and would recommend them. They are made of 85% Nylon and 15% Elastane and have a comfortable sock-like feel. They can be hand washed at 40C for 100 washes. I have found them to be relatively durable until they develop a hole on the heel. UPC/EAN for the XL is 5037696100443. Tel: +44 (0)1283 576800. http://www.activahealthcare.co.uk/
  12. What brand and style of compression stockings do you wear? Would you recommend them? Do you prefer open-toe or closed-toe, below the knee, thigh high or waist supported? What do you think of the material used and is it easy to care for and durable? What class are they rated at? (n.b. different countries have different ratings so please say where you are too)
  13. The FDA has recently approved revised product handling for Octaplas, which increases the time span between product thawing and patient administration. However Octaplas remains contraindicated in patients with immunoglobulin A deficiency or with a severe deficiency of Protein S.
  14. Vitamin K injections

    Warfarin dosage is affected by Vitamin K. If an overdose of that drug is taken (causing a very high INR) then Vitamin K can be used to counteract the drug. Vitamin K doesn't cause any harm to a person with PSD. The whole issue of managing Vitamin K is only related to patients taking warfarin/Coumadin. Vitamin K is produced by the body naturally, and it plays a part in the blood clotting process. It is just a cog in the way the whole blood clotting process works. You don't need to worry about Vitamin K even if you do or don't have PSD unless you are taking warfarin/Coumadin. A newborn baby is given a Vitamin K booster because it takes a little while for their digestive system to get up to speed with producing the natural Vitamin K that our body produces and needs. Without the booster the baby is at risk of some serious health issues, affecting about 1 in 20. Perhaps the only real controversy surrounding the injection for babies is that it is considered so routine that it often isn't discussed with the parents beforehand, and they can be a little surprised by their baby having medicine so soon after birth. If anyone is considering rejecting this medicine - and you do have a choice - then I would urge you to familiarise yourself with the potential downsides. Don't let a phobia or concern get the better of you and dismiss it out of hand - find out the hows and whys on this page... http://www.sciencebasedmedicine.org/separating-fact-from-fiction-in-the-not-so-normal-newborn-nursery-vitamin-k-shots/
  15. We launched our mailing list service on Yahoo! Groups on 10th September 2001 and since then we have sent one or two messages each year with key messages relating to Protein S Deficiency and Thrombophilia. We are now relocating to a new email provider - MailChimp - so that we can take advantage of an easier sign-up process and improve email compatibility with mobile devices. Subscribers to our existing mailing list were carried over. If you received our welcome email you do not need to do anything to stay subscribed. Apart from the change of email provider there are no other changes to how our mailing list will be managed - your details will never be provided to any other companies or organisations. If they ever want to contact you they will need to provide us with their message and we will pass it on to you, thus assuring you that privacy is maintained. Anyone wishing to subscribe can do so here... www.proteinsdeficiency.com/news
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