Is knowing too much a good thing??

Hi this is the first time I've written a blog and so forgive me if I ramble!! I just found HSF and have been reading every body's experience's but now feel slightly worried.

I was diagnosed with Hughes when I was 23 after suffering 2 PE's at 21 and then 2 more at 23.I have been on warfarin ever since my current dose 13mg daily INR range 2.5 to 3.5. I am now 41 and have 2 healthy children one 13yrs and a 11yr old.

My general health over the years has been ok but as most of you I have had complications, such as having to inject daily with Fragmin whilst pregnant.The kid's were both born very early (the first 11wks and second 9wks) by emergency c section. Also had a couple of op's which resulted in longer hospital stay's than normal.

In my youth I was very naive about my condition and did a lot of travelling going for weeks without getting my INR checked, drinking too much and just enjoying myself, cant believe Im still here!!! Obviously as i've got older and realised the seriousness of this condition I do look after myself and am the fittest I have ever been.

I do suffer from fatigue and headaches and sometimes sluggishness but have always put that down to work and being a Mum.Reading about other people's experience's and symptom's ect has made me realise I still don't take thing's as seriously as I should but can knowing too much be a bad thing??

I know people will disagree and think I am some kind of crazy woman but I have managed the last 18yrs albeit somewhat up and down in my blissful world of ignorance. I admire people sharing what they are going through and will be a avid reader now but I do feel a bit worried as some of their experience's are ringing alarm bell's.

31 Replies

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  • Hi Bonbon41

    Great blog and thank you for sharing your experience, to be honest I think some of us may of been like yourself and that is no bad thing. I can only speak for myself, and was only diagnosed in November last year, however I have had symptoms through most of my life - so I could also question myself do I feel worse now I have a reason to the symptoms? maybe, possibly and probably, however, It is good to know the answers and have the choice of how to use the knowledge and also to know I am not "going mad" and there are others that suffer this and feel the same. For me, I have also gained strength from knowing about the condition and having some control back in my life and questions answered, and from sharing on this site. It seems as though I am contradicting myself, but I guess I for one feel differently on different days.

    I have also been, and continue to be a bit of an ostrich and bury my head when I don't want to think about the illness.

    So I would say look at the information on the site, take from it what you need, keep well and safe, and please do contribute whenever you wish.

    Smiles to you

    Lesley

  • Hi Lesley thank you so much for your reply to my rambling blog. Felt very nervous posting it because I didn't want to be disrespectful but just felt worried about the thing's I've been reading and started to question if I should read on. I'm so glad I did post because the comment's I have had are so positive and it is great to know that i'm not the only one with HS as I seem to of spent the last 18yrs believing as nobody ever seem's to know what it is!!!!

    I will keep track of blogs and post's and take what I need, thanks again for your advice,

    Smiles to you to

    Bonnie

  • knowing your own illness well is forewarned and forearmed should problems present themselves.

    It allows you to take appropriate action before things get out of control and much harder to treat.

    Also take into consideration that there is many in the professional ranks dont understand this syndrome.

    I have survived a 'double whammy' stroke, that is an arterial clot and bleed that was bilateral meaning I was left and right side affected (quadruplegic a month before learning to walk again), a large DVT ankle to knee and a PE in the space of a week. A quick introduction to the world of APS. That was 12 and a half years ago.

    Along the way since with my knowledge I have been able to talk to and question doctors about decisions they were making. Would you allow a GP to make an INR adjustment without understaning why you are taking warfarin. Most err on the side of caution (low) and that can be dangerous for our condition.

    My biggest concern is being incapacitated again and being looked after by medical staff that dont understand this condition.

    lucky1

  • Lucky, I was really touched by your response, and was nodding my heading along reading it - you, like so many on this site ate a strong cookie and very inspirational!!!

    Be strong everyone and smile :)

    Lesley

  • Thanks for the comment Lesley.

    if interested try reading my stroke story found at tbihome.org/members/peter/

    It was the sort of stroke most people dont walk away from, I have returned to work 4 days a week with wednesdays off in the telecommunications field which was my pre stroke job.

    lucky1

  • I concur with everything that's been said above. Because I am seronegative I have blissfully gone through my life in total ignorance being told after both my PE and Stroke that it was just one of those things! Well after the stroke I decided that you don't just have Strokes!!

    I got my dx last July and now have the mixed blessing of knowing, dealing with a very controversial dx and wanting to go back to where I was before so that I can just ignore the situation. The fact is knowledge has to be a good thing, as long as you control it rather than allowing it to control you then the balance between knowing and living the best life you can and it taking over your life compleatly.

  • Again, I agree whole heartedly! - I was always told, there there it is one of those things, move on - or hmmm can't find a reason maybe it is physiological :( therefore spending alot of my time thinking I was mad or imagining my illness's

    Smiles to you

    Lesley

    :)

  • I think knowedge is ammunition. You can use it to 'do the right thing' and eat better, stay trim and reduce your risks of clotting in the future. You can prepare for the rainy day that may happen by saving funds you may need then, etc.

    Most importantly though you can teach others and spread the word to laypersons and medical professionals.

    I have been foolish and non-compliant at times but knowing that like a diabetic (sort of), the damage can be compounded over time I have really truly been trying my darndest to be the best and healthiest I can be.

    Do some of the stories I read and hear frighten me? yes and no.... They used to, and sometimes I still worry that my future is already written but then I remember I do have some control over my risk factors and compliance and hopefully that will help and protect me in the coming years. Also, knowing what "could" happen helps me make every day now count.

  • Hi hon

    I have to agree with whats already been said.

    I wish I had found a source of information like this forum, or a doctor along the way that thought to test for hughes syndrome. A great deal of grief and heartache could have been prevented had I been diagnosed in my early twenties. It took till I was 46 to get a diagnosis. I lost many pregnancies, had clots, migraines etc.

    So I think knowledge is vital. Although it can't change the past, knowing and acting now can save further clots, help close family and my children not suffer the same.

    Our shared experiences can hopefully help others get to the right doctors, give questions to ask said doctors, and just let others know they're not crazy or imagining things and that they're not alone.

    Take care gentle hugs love Sheena xxxxxxxxxxx

  • Thank you Sheena for helping me realise how lucky I am to of been diagnosed so long ago. It sadden's me to read how you have suffered over the year's and how that may of been prevented had you been diagnosed earlier. I do realise I have been blessed with my children as thing's could of been very different and I now know there are some very lovely people I can talk to next time I feel a little crazy or need some advice.

    So once again thank you and take care of you too xxx

  • Hi hon

    you're welcome, hope we can all help each other get through the bad days and celebrate the good days.

    Take care gentle hugs love Sheena xxxxxx :-) :-) :-)

  • Well said Sheena ...I so agree.

  • Hi lucky1...What did you mean by that you had an arterial clot and a bleed? Ive had a stroke as well and have hemophillia and APS. I was just wondering what your drs. are doing for you....Take care ...Teresa

  • An arterial clot is in a 'supply' line, that is the blood is on the way out from the heart.

    A venous clot is in the 'return' line to the heart.

    A clot will impact the flow of blood within the artery/vein whilst a bleed is a break in the artery/vein. My stroke was a complication of both.

    For my condition I maintain a theraputic INR at around 3.5 and carry on life as normal. I work four days a week with wednesdays off after following a return to work program post stroke.

    I blood test every two weeks and have a visit to my GP every 2 months. If anything goes awry it is caught early.

    If you are interested you can find my stroke story at tbihome.org/members/peter/

  • HI...

    Knowledge is power. You may never have to deal with some of the issues that others have dealt with..and I hope you dont.

    What I can tell you from personal experience is I WISH I would have known what was possibly ahead of me many years ago. I would have had it all in memory in case something came up. Things did come up...but it wasnt until afterward that I knew it was APS related. I could have had a different outcome had I been educated about APS.

    I look at is as preventative care. We get Mammograms to watch out for breast cancer...we need to know what is going on or what possiibly could develop...it is being proactive with your health. No different with any other disease in my opinion,

    Whatever you do... dont get caught up in what "could be". None of us know what the future holds. Be informed, be your best advocate and live the wonderful life you are given. If something happens...know that many before you probably have experieinced the same type of thing...and you are not alone.

    Take care...

    Beverly

  • Share, Share, Share. It is so important to hear what can happen. I would have given anything to have this site when I was diagnosed in 1997. I had horrible doctors that did not know what APS was. I clawed and scratched for information. I faced deadly situations and feel that with this disease as with others it is best to know what can happen and know the specifics regarding the newest treatments. That way if something bad were to go wrong, the info is there. I am adament that we should be the most proactive patients out there and my doctor strongly agrees with that attitude. Best of luck and hoping that your health remains good!!

  • I absolutely agree with you Lori but the new BCSH Guidelines will not help those of us who are seronegative especially. I can be as proactive as I can but when up against a strong willed consultant who will no doubt wave these guidelines in my face and point a very animated finger at them, what am I supposed to do?These guidelines set people like me back a long way.

    I recently had a visit to my immunologist office, he took one look at my dx for Hughes, looked at the blood results and then went off on a rant about how I could not possibly have it! He repeatedly banged his finger on the results and spent 10 minutes giving me a genetics lesson. The one thing he glaringly forgot to mention in his little theory was why I had had a Stroke. He then wrote to my GP telling her that this dx was wrong and why I should NOT be taking Heparin etc etc.

    Thankfully my GP agrees with me that I decide what dx and treatment I want to go with but I suggest that these guidelines are only going to make these situations more likely to happen than not and I will find myself defending something that is really an argument that the medical profession should be having and NOT expecting patients to debate it in their surgeries.

    These guidelines will also make the same problems for people on warfarin who will now have the added struggle of having to deal with dogmatic warfarin clinics who again will wave these guidelines in patients faces on the basis that if they don't they will get sued for not following them. I have to wonder if any of these 50 Haematologists ever thought of taking the Patients views into consideration before deciding to lower the INR recommendation. On paper it may well seem to them that they needed to take that action but if they actually did a poll of patents a bet they would get a different result.

    So I agree we do need to educate ourselves but when we are up against the force of the people who are supposed to have our medical interest at heart I sometimes wonder if there is any point other than to have the strength to say NO!

  • Lynn... I totally agree with you on the guidelines. I have positive APS back from 20 years ago and the antibodies come and go on the bloodtests (not sure why) but two different doctors at one point told me I didnt need to be on any anticoagulation if my APLs were negative. I ran as fast as I could! My last set of tests were strange as I was negative and positive at the same time...he said it made no sense. Makes me wonder if our blood fails the test or if the test fails us. But I am with you on the seronegative APS patients fear of being pushed aside.

    The new INR range of 2-3 is also a HUGE concern for many of us. THat should be used as a general guideline and each patient should be evalutated separately to see what works best for them! Ugh...so frustrating.

    This shouldnt be a battle that we have to fight to get what is necessary for out well being. Twenty years ago I didnt know much but my OB/GYN knew enough to test me for APS. I would have thought that throughout these 20 years that greater awareness and changes would have come. It is disheartening. We DO have to be out best advocate with APS.

    Beverly

  • Lynn, that is an awful way for a doctor to treat his patient, you are such a strong person it was good you could and did stand up to him!! I would say you "go gir"l!! - Why are doctors so uptight that they have to be right, can they not learn from others?

    But and the big BUT is, we are here for each other, and can be strong for each other and support one another on our journey through this illness!

    To the Hughes support group I salute you!!! :-)

    Lesley

  • I am so glad i wrote that blog, I feel more informed already and it has been an eye opener reading some of the journey's people have made. Along with the heartache, pain, anger and frustration I can feel empathy, understanding and genuine concern pouring from everyone.

    I can 100% say that knowing as much as you can about your condition can only be a good thing!!!

    Thank you ,thank you ,thank you all

    Bonnie

  • I will be so happy when HU set up the "like" button!!

  • "like"

  • Me too !!!! :-) :-) :-) :-) :-) :-) xxxxxx

  • Regarding your concern about "too much knowledge:" an additional observation. Many doctors (I know quite a few of these) believe that a well-informed patient is an hysterical patient. Well, many people still believe the earth is flat. You're not going to convince the docs who are pre-disposed to believe that all (or most) illnesses are self-manufactured. (It doesn't help that in the case of autoimmunity and cancer, this situation is literally, albeit not controllably, true.) But don't let those doctors get you to doubt your own sincerity and wisdom. And when you run into one of these, try very hard to back away and find another.

    And don't let their beliefs about psychosomatism convince you that too much knowledge is bad. Yes, obsession is a bad thing. But -- let me craft a metaphor here. Experienced sky divers go over their knots and parachute bags with a meticulousness that we would call "obsession" if that was a laundry, and not a parachute bag. Backpackers obsess over maps and water supplies that would be silly if they were only walking to the 7/11. We have a rare, poorly understood, masterful-faker of an illness. We have to know more about normal, as opposed to abnormal, body functions because our bodies live on the edge of normal. We're not obsessed. We're functional.

    Ignorance may be bliss at times, but knowledge is power.

    Welcome to the club.

  • Love this comment Gina so so very true!!!

    I have come up against those Docs and I truly believe I convinced myself that maybe they were right and they obviously knew what they were talking about, they were the professionals right???

    Looking back now I knew that they didn't really understand what was going on with me and a few even asked what APS stood for!! I cant count how many time's the Nursing staff have asked what my condition was as they had never heard of it.

    I think you sum it up beautifully, Ignorance may be bliss, but knowledge definitely is power!!!!!

  • Bon Bon

    welcome to the group!

    I think everyone has said what i was going to say all i would add is keeping Happy, Healthy, Informed, Not let frustration run your life and in the words of Monty Python " Always look on the bright side of life "

    We cannot change what we do not know but its what we do with that knowledge that will make a change in our personal and public lives and part of that saying is being on here sharing and talking to each other.

    You are not alone

    Paddy

  • Thanks Paddy I definitely do not feel alone any more!!

    Bonnie

  • Hi all...Knowledge is power, I defenitely agree. And I do wish I found this site earlier on as I am learning a lot. Right now Im going through having to break in a new dentist. She at first asked me if I was "sure" I had hemophillia because it is a "mans disease". Now she wont treat me unless I have written consent from my hemo. even though he sent them my bloodwork and said he would speak to them. Im currently looking for a dentist with more knowledge of blood disorders and a bit more understanding.... Im grateful for this site and for all of you...Teresa

  • Hi Bonnie,

    I've felt the same way after researching something to get answers... the answers make you feel more in control, less fearful because you're knowledgeable, yet it also gives you an anxiousness in knowing what can happen!

    But, the bottom line is, knowledge will make you more safe.

    You've managed the past couple of decades, perhaps having luck on your side.

    You also had youth -- that is the one sad factor I wish to point out --

    we are more susceptible to things as our bodies age and slowly start to fall apart.

    I get sick so easily now-- is that the APS or the warfarin? Obviously something to do with my immune system. And the aging process. I was very healthy until age 55 when I had multiple PEs in both lungs and a large DVT, and the doctor greeted me in my hospital bed, congratulating me on beating the odds of survival. He told me I'd be on warfarin for life. I'm like, "what? huh?" Disbelief, but I started learning all about APS, growing more fearful, yet giving it the respect that having a disease that can cause death should have.

    So now I don't chug-a-lug a pitcher of margaritas anymore, or have cranberries or seaweed with sushi, or green tea, though will have 2 glasses of red wine. At times I've pinched a bit of the warfarin tablet off when drinking too much wine and not eating my daily bowl of brocolli, spinach, or salad, and my INR has stayed pretty steady with that tactic. I fear a high INR more than a low; mortality on cerebral bleeds is like 50%. I'd prefer a clot, LOL. I do not want to feel the fear again when I once tested a 10.0 -- I was imagining a brain bleed any minute.

    So yes, it makes us fearful, but that fear and knowledge will protect us more. It reminds me to watch my green intake each day -- and it seems like I find out every once in awhile (thanks to this group) that something I've been munching down actually makes keeping a steady INR difficult. (I used to eat way too many blueberries when I found out about their high Vit K intake.) Also I've ordered Ceylon cinnamon due to the coumarin in regular cinnamon. (Cinnamon has helped lower my cholesterol) My doctor wants to put me on Simvastatin which I've resisted. I've dropped my 130 LDL down 10% (normal for "regular folk"), but the doc thinks it should be under 90 due to having APS. I've read about Simvastatin affecting warfarin... do I really need more odds against keeping my INR in range? I ask, how much will Simvastatin protect my arteries from clots versus its negatives?

    The more we are informed, the better equipped we are in deciding our own health matters. It's our risk, our life. I do not have faith any more that the doctor knows best. I learn and then bounce it off him.

    I hit the "Like" button on what Gina said -- "hysterical patient!" Ha, I sometimes see the look when I'm explaining something I read, "Oh geeeze, another one of these women who thinks she knows stuff by going on the internet." But now I have a great rheummy to bounce things off, and a stubborn GP on certain things, but he of course lets me choose what I think best.

    The doctor was surprised I had no problems with carrying my children in my 30's. My APS was "activated" by a bad bronchitis infection, though my mom had RA and my sister has MS, so the autoimmune disease is clustered in our family.

    So, arm yourself with knowledge and the support of our APS community. I don't fear too much about getting the symtoms others have, but I know the reality that our bodies will get more ailments with age, and my guess is the odds are my APS symptoms will intensify. I'm armed with the fact that Paquenil may help (what my rheummy wanted to put me on), but reading other's stories and about Paquenil, I've decided I can deal with my joint pain flare-ups right now with some Tylenol. At least I know there's something in the future to try if things get worse, so that is comforting. Sometimes I feel a depression creeping up, and talking with others about APS has helped.

    Thanks for letting me rant,

    Gail in California - the land of 2-3 INR.

    Statistics have shown it is safer a guideline to start, so perhaps that played in the BCSH change-- but then, your individual APS may require a higher one. It's just a guideline, but one my doctor did not want to change to 2.5 - 3.5 for me. Did my symptoms really feel better with it higher? Maybe not... so I agreed to the "safer" 2-3 range. I usually test 2.6 - 2.8 anyway!

  • hi Gail just got to reading your story ! the paragraph starting with- i get so sick easly now ?? i had a flash back { WOW }. my right lung was a cluster of clots, left lunga solid mass of a clot 1 inch thick ,left leg in knee hugh dvt. also clots in neck and left arm pit. my doc said [ if you make it next few days you have 30 % chance??. boy to beat the odds,and with my gambling luck i should of been in Vegas! i was same age. i to was introduced to my new life long companion- mr. warfarin and now his brother placqunel. not looking forwaed to meet the rest of the family !!!!!??inm in N.H. i can realy identify with your story , close to home my friend , great chatting ------------------ brother -------jet

  • Hi Bonbon1

    I think it's possible to be even more carefree once you fully know the symptoms to look out for and simple precautions to take e.g. long haul flights. I've had a bit of a stormy ride to get to 52, but also a fantastically fulfilled one in terms of travelling and family.

    Without going into too much detail, I've had a couple of DVTs which got me diagnosed and treated, and then due an unfortunate doctor treatment mix up (warfarin & NSAIDs) had a brain haemorrhage and epilepsy (only auras, not fits). Later, ended up with renal vein thrombosis when pregnant and renal failure followed by a successful transplant from my husband 10 years ago. Now have a form of arthritis that may be linked to APS.

    During the above, I made a point to fully understand the issues linked to APS and renal failure and I think due to that, was able to recognise when things weren't as they should be

    e.g.was able to get myself to hospital early on in my second DVT, brain haemorrhage and renal failure as I could tell my symptoms were different from what they should be.

    I think we also have to become somewhat of an expert on our conditions to make sure doctors fully understand the importance of what we're saying. Having a number of different medical problems, I usually give an overview of what's happening across the board health-wise when I see a specialist doctor (e.g. renal) to make sure they get the whole picture of treatment and avoid the clashing of drugs that led to my haemorrhage. Similarly with my GP who isn't really involved that much but I see for low-level stuff e.g. food poisoning.

    Armed with all that, I've been fortunate enough to happily travel to Argentina, America, North & South Africa, across Europe without any disasters (although catching an early flight back from the Czech Republic when I felt things were a bit amiss - liver infarct!). I work full time and have the usual stroppy teenager who makes no allowances for my medical history, as should be the case, although is very helpful when things become out of the ordinary.

    Sorry - have rambled on far more than I menat to! In summary, I personally feel knowledge gives me the power to manage my condition and therefore reduce its impact on my life and that of my family.

    Hope that's of interest to someone at least!

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