14 Replies

  • Posted

    Not sure if you will read this but someone may i hope.  I have Protein S Deficiency and as far as I understand this condition comes under the heading of Thrombophailia of which there are several types, Protein s being the most rare of them.  Don't be worried, with certain lifestyle changes you can live a normal life. You have to eat a good healthy diet and cut out smoking and limit alcohol consumption. If you are on lifelong blood thinners, Warfarin being one of those perscribed you MUST not concume alcohol as it inteferes with the working of the drugs that you have been perscribed. As long as you follow your doctors advice to the letter it need not make much of a difference to your life. I was advised not to take the contraceptive pill as this too can mess up any presciption drugs that you take.  I was diagnosed about twenty three years ago and kept healthy all that time.  You only need to worry if you have an accident and injure yourself or have to have surgery for any reason. Another time to be extra careful is on longhaul flights.  You need to tell your doctor before you travel so anticoagulants can be taken if you are not already on them.  Tell the cabin crew of your condition and try and get a seat with plenty of leg room so you can move your legs about freely even when sitting. Get up and move around as often as you can at least once an hour.  If you have had a bllod clot in the past you will know the signs to look out for and if you feel you may have developed one despite having taken precautions report to your nearest hospital as soon as you can. Not sure how this condition affects trvel insurance as I have never been abroad but perhaps someone else can advise you on that.  Please take this condition seriously as you do not want to end up with an Ulcer on your leg which can be a complication of having had a Deep Vein Thombosis. I am awaiting surgery to hopefully cure the Ulcer I developed after a fall. A scan showed that I have venous reflux( blood pooling in the veins of the leg) which is stopping the Ulcer from healing. Good Luck and live happy.

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    • Posted

      hi elizabeth31209,

      were you born with protein s deficiency?

      or did something happen in the way your blood is made?

      i think venous thromboembolisms can occur anywhere you have deep veins,.... and depending on what activities you are doing, bits might break off or get disturbed and pushed further into your pulmonary arteries causing discomfort lightheadedness, difficulty breathing and possibly pain, v scary - but getting used to it and not complacent!

       I think when this happens, it tells your body and immune system to send a concentration of 'white blood cells/clot dissolving catalysts' to address localised blockages until flow is restored.

      the worry is not knowing the size of the bits breaking off, or the extent of movement a large undissolved 'hub & spoke' clot gets pushed deeper into your pulmonary ateries or deep veins in a persons leg, especially after intense anarobic exercise where your internal tissues expand due to increase blood flow 'the pump', and then contract after rest- emphasising restriction.

      something like this happened to me recently - i increased my water intake up to four litres a day, and v. genlte cycling for 1-2 hrs, more sleep & rest....made me feel a bit better!

      hope this makes some sense

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    • Posted

      Thanks for your reply. You seem to be doing all you can to avoid any complications from having this rare disorder. I have inherited my Protein S and all my father's side of the family have it. I try not to get fixated on this condition and until I had an injury it was not a problem. I suppose in a way we are lucky.  We know that we have this deficency and can getthe right treatment if we have a trauma/sugery. There must be lots of people who have no idea they have it and will not be given blood thinning drugs at the apropriate time. Clots are a risk after operations in the absence of this disorder. I had a DVT in 1992 and a piece of the clot broke away and caused a PE. At the time I was not in severe pain except when I took a really big breath in and then I had a sharp pain in my side.  My breathing was not affected so the clot must have been really small. While exercise is good for us try not to over do it. You can still improve the blood flow in your legs when sitting by doing simple ankle exercises. I find lying on my back with my legs straight up and moving my ankles helps to improve bllod flow. Not sure if this is just my experience but I was never told about the complications of having a DVT and that Ulcers could develop especially if there is a history of Deep Vein Thrombosis. What you describe in your post 'white blood cells/clot dissolving catalysts' is the normal responce to injuries that happens in people who have normal blood clotting. People with Protein S need help with our clotting as we have not got enough of this Protein for the bodies responce to be effective enough to stop clots because our blood is thick and sticky. If I am wrong please put me right as I do not want to scare anyone.

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    • Posted

      Hi, apols for late reply.

      I don't know if i have this rare disorder. There is inconclusive and unavailable facts to demonstrate if I have inherited Protein S Deficiency. For me, this condition recurring VTE has been a major shocker, compounded with lack of knowledge, interest or healthcare 'will' to address thrombosis head on.

      I have found out, prior to Pharma R&D bias NOACs phase trials (Rivaroxaban) and subsequent NICE Guidelines, the "British Thoracic Society produced a guideline for Suspected Pulmonary Embolism", have a closer look at their 'Clinical Features'.  Reading and writing provides knowledge that may scare or reassure people with this temporrary disability/illness. What's most important is for people 'living' with sliding scale severities of VTE to be well informend as opposed to having the condition glossed over with a glossy soundbyte. 

      Pragmatic checkups, tests and scans are expected and required. Heck I get hounded for dental checkups for years and years of gum disease which isn't even there!,

      But if there's a potential life threatening risk of blockage & function of the heart or lungs, worrying, the person has to fight for their human living rights.

      Going back to what you said, ' I try not to get fixated on this condition and until I had an injury it was not a problem.'

      To try and put into context,

      this condition can reduce any person to a single breath and a heartbeat at a time. This is an example of being incapacitated, in fear of a clot moving and filling all circulation gaps permanently, ongoing.

      From this point onwards, the person faces challenges like getting up and going to toilet and or making food, whilst their pulse and blood pressure is going up & down like a yoyo, being feint, off balance and suceptible to collapse. During all this, one must try not to get too excited or emotional causing the heart work even harder than normal with thrombosis led pulmonary hypertention, there may even be a fear of coughing or sneezing, as these reflex actions may encourage clots to move in transit.

      When I was at my worst, my breathing was reduced to the upper most part of my lungs, probably the top 5-20% only, even then the pain with breathing was unbearable, I prefered not to breath at times - it was a choice I had!.  It's not a nice position to be in, i would call that traumatic.

      Moving forward, 'the rebound rollercoaster journey', light exercise, housework, gardening, manual labour go hand in hand. Prescribed with anti-coagulants, living with thinner blood, the residual clots in our bodies may not be as robust or hardy prior to NOACs/Warfarin/LMWH, meaning their structures, bonds are in process of dissoving, breaking apart working it's way through to fill little gaps/latch onto valves downstream of anchor/compression point/s. Each bit that breaks off is a potential tough time and setback - Residual PE.

      I'm not interested in scaring anyone, people living with recurring acute/ major clot episodes need pragamatic lifestyle guidence/ exercise/housework recovery programms, NHS/welfare/social support and recognition.

      I don't know if you are right or wrong, re Protein S, what I do know about, is living with big and small clots, having bits break off, and how this affects your life if you're a reasonably active person of working age, adult with family responsibilities.

       

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  • Posted

    Thanks for your reply. You sound as if you have had a tough time by the sound of it. You can aquire this condition as wel as inheriting it so you may be in the former category.  I read after having my DVT that there could be residue of the clot remaining in the body. I took it as read at the time of m DVT that blood thinning drugs would dissolve the clot. I wish like you that there was more openess about the possible complications that way we could at least look out for signs and symptoms. I was told i had this when I was forty two years old and just had to go way and try to come to terms with it. I think certain people should be offered councelling. I think I am quite a tough person and have had quite a lot to deal with early on in my life.For example my Mum died when I was a child from a brain tumour. But for some people this can be a bolt from the blue and have an enormous effect on them not only from a physical point of view. I have been looking around to see how much research is being done right now into this. Not much as far as I can tell. Perhaps in the future gene therapy may be available though not in my lifetime.  Have you ever had any talking therapy to help put everything into context? As with all conditions there will be some people who would like to know as much as possible about it while others would not. I am sixty six years old in about a month and have been considering leaving my body for medical purposes. If only we could be sure at least some of the research was going to be of benefit to those who will be dianosed with clotting disorders in the future. 
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    • Posted

      Hi Elizabeth, there is no-one qualified or experienced enough in the UK to design a construct for 'clot disorder/recurring vte' talk therapy.

      In some respects, when I was in a near morbid phase, my thought processes were reduced to a simplified binary state- consciously breathing in, and then consciously breathing out.

      I proactively took control and regulated my breathing.

      I'd love to share my story with someone. I'm willing to travel.

      There will be senior professionals in the medical profession interested in recurring 'VTE/protein S... etc..' they ALL know it's inter-related with genes, blood, heart, lungs, vascular system, hormones, physical and mental well-being, unfortunately the NHS has been designed around clinical specialism, as opposed to holistic biomechanical processes of a person living with a condition/s.

      There will also be able, caring people that have protein S deficiency that will want to work towards expanding pragmatic knowledge base, so that there'll be reduced loss if life, and also better outlook/ quality of life for all 'clotties' of all ages, backgrounds and circumstance.

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  • Posted

    Hi

    Yes as you say there seems to be a lack of interest in the emotional effect being diagnosed with this type of disorder has on a person. But talking therapy can be useful even at the most basic level. There is a Thrombophalia centre in Cambridge England where they help people with this condition. Not sure if you have to go through your own doctor or just contact them yourself. I should still be on their books as they were the people who tested my blood samples when I was first diagnosed. They have a website so should be easy to find if you put Thrombophilia centre Cambridge in the search engine. If you live abroad they may still be of help if you have any questions/worries. I would love to see more research being done into these conditions but sadly there seems to be a lack of funds especially in the british health system.

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    • Posted

      Hi again, to elaborate and build upon your reply xxx

      Under Jeremy Hunt, UKMI, Nice TA287, and possibly NHS Foundation Trusts, and General Practicioners - not one person in the United Kingdom has the COMMON SENSE to request the very same scans and tests: CTPA, transthoracic echocardiogram (TTE), ECGs and Bloods, DVT, UEDVT, ultrasounds, Spirometry  etc etc used to diagnose and verify thromboembolisms throughout the body - and periodically monitor the rate at which different nationalities/peoples/blood types, ages dissolve clots naturally - with target to aquire 'Patient-Led pragmatic research & development data' with aim for better quality of life. 

      The very methods used for diagnosis of PE/DVT/UEDVT/VTE can be used to monitor rate of recovery and project transition from incapacity to disability to being fit and able at a constant. From this observation, one can see gross negligence and gross incompetence by appropriate/inappropriate authorities working in this area. ie NHS-Department of Health, Care Quality Commision, Healthwatch England, Trust Development Authority, Health & Social Care Information Centre.

      It all starts from ones cognition of this situation and the tentative gravity of this medical condition.

      Yes up to 6%-15% of western civilisation hospital deaths are attributed to thromboembolisms (depending on research data). Those that live and survive in the short/medium/long term ie: 30mins/ day/ week/ month/ 3months/ 6months-36months> have a reduced quality of life.

      They are vulnerable, and have reduced physical and mental wellbeing, and could possibly be suffering from trauma + PTSD. It can all be measured, recorded, and scanned providing fact to support whatever claims or issues a patient may have.

      As it stands today - in this area of medicine - the NOAC + Anticoags Pharmacetical industry are either in coercision with heart/ lung/ heamatology specialists or they FAIL to connect dot to dot symptoms - and assess real life peril,  from sufferers of this unprovoked/ provoked medical condition.

      I can not emphasize enough, in my opinion, the level of gross negligence by Cardiology/Respiratory/Pulmonology/Haematology medical professionals and their line managers compensated by the taxpayer.

      In my experience, they do not abide by NHS Values & Principals, Equality and Human Rights Principals- in respect to care of the individual and their stakeholders.

      ~Breathless, heartbreaking, patronising and sad at times.

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    • Posted

      Hi

      You certainly have a way with words and can express yourself far better than I ever could. Do you have a University education? What we need is a champion for those suffering from any form of blood clotting disorder. If you are  a UK resident you could do well to bring this to the attention of the public in general. Perhaps a letter to a national newspaper or write to your MP. I myself was surprised that I was not sent for a Duplex scan after my Ulcer failed to heal given the usual standard treatments and I was forced to take matters into my own hands and arrange for a private scan. Imagine if I were twenty years older with the same problem but with less mobility and resources. Would I still be waiting for a scan? The nurses do a good job but they are restricted by time/money. If I were morbidly abese or needed treatment for an alcohol or drug problem i would not have had so long to wait. Now I know from the scan that I have venous reflux probably as a result of the DVT. But the private sector were not willing to take on my case. I have not been told why but think it possible that if I do have another clot following surgery the follow up treatment could cost them more than the cost of the operation? Nice to know I would not be cost effective! I am going to have to have injections in my stomach of blood thinners before and after surgery and I am still waiting to hear when I will have the operation. Liz

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    • Posted

      Hi Elizabeth, 

      I tried to self finance a BBA course about 20years ago - and due to personal issues was unable to complete. What I briefly learnt put me in good stead reporting to Business owners and middle management.

      My last credible post was working in the areas Business Development / Marketing - supporting my BDD & MD enact corporate level change management of a IT services conglomerate from a country unit perspective. ie circa 6yrs loss making app development/off shelf service centre to off the shelf profit centre, contemplating displacement and reselection, P/L, branding etc.. 

      I thought about going 'openly public', but this does not conform with my personal values - there's a chance to profit from celebrity, thus snuffling any chance of gaining credible endorsement/green light sponsorship with sole mission to improve conceptual frameworks, logic models and guidelines with respect to clots and living with them, encouraging natural, pharmacetical or development in mechanical removal of them.

      The attitude Senior Level Public Health Care Representatives have with management of life is disgusting. Their version of healthcare reality is that people on average die at ~80years old, so why invest time in the elderly, vulnerable or frail.

      Someone like me would like a long happy life and if fortunate live and be productive from birth to 120+years old. We could ask HM Queen Elizabeth for an opinion as to what age NHS doctors should write people off... 

      Im sorry to hear about your scan - the private & public sector are at ransom with Pharmaceutical Corporations marketing spiel.

      All nurses, doctors and consultants - get to where they are through education and training. You really have to ask yourself who/whom are doing the education & training - and what qualifies them to head such a department.

      Anyone that goes into Emergency Department/Acute Unit as a patient is a bio-mechanical individual with provoked or unprovoked conditon/s and suffereing from trauma both physical and mental. Adults are consumers, and therefore pay tax - directly or indirectly.

      Yes - regarding cost of treatment/cost of health care - that's a big taboo in the NHS, free to all etc..budgets etc...

      Back on track with NOACs - they are called NOACS for a reason - they are new and they are or have been consensual human trials of these drug proramms. Everyone enrolled on to a phase trail drug program will be on a trial register - they will generate data for statisticians to present to global sales & marketing professionals, any anomoly or gremlin in the data will be highlighted and in view with the Project manager, CEO/CIO/COO level healthcare provider, monitoring & regulatory authorities.

      It's all about time to market and being the prefered Technology to compliment health care management of clots, and mitigation of fatal incidents in hospital where data will be logged. Incidents that happen outside of hospital can be masked over or registered as unknown cause of death or something unrelated.

      The legitamacy of getting drugs through phase trials is based on endorsement, R&D and communications between relevant stakeholders.

      There are Laws and Acts which clinical trials should work within. Breech of Public Trust between professionals should be covered by insurance. Pharmacetical Corporations vs DoH vs The Patient.

      ______

      'I am going to have to have injections in my stomach of blood thinners before and after surgery and I am still waiting to hear when I will have the operation. Liz'

      I'm sorry to hear that - as you can gather, i'm not a medical professional, i thought patients with clot disorders need to stop anticoagulation prior to surgery.

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  • Posted

    Bit late to this but:

    Some of the advice here is utter nonsense. I developed protein s def after catching rabies in 1998. Not knowing what it was (and being young and stupid) I caught my flight home. Needless to say the journey(10 hrs) was awful and I was taken directly to hospital where I developed a second dvt (known as a horse-shoe.) Six months later I had a PE which required a lung drain.

    Anyway, since then I have continued to both smoke, drink and pretty much eat what I like. Doctors recommend none of these but, in my opinion, they are merely covering themselves and rightly so in these ridiculous, litigatious times.

    They were also appalled by my choice of career following what is now known as 'that bloody dog in Guatamala' in that I quit being a broker in London, moved to Cornwall and became a climbing (none of your indoor rubbish) instructor. Something I did for fifteen years.

    I'm rambling a little now but my point is that you can live your life with very few restrictions as long as you don't behave like a nutter, which would get you injured in any case.

    Bye, have fun.x

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