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Do you have Protein S Deficiency?


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Hello proteinsgrl. I unfortunately can?t offer you any new knowledge or understanding. I can only say that I can certainly sympathize with you. Although I only have the one disorder, PSD, I can tell you that when I first started having problems and was diagnosed wit PSD, I was very scared. I had some severe anxiety over it. Although I still have some anxiety I have in a big way come out of that and started to really ?live? compared to what I did before the diagnosis. I have started eating right and exercising. I have started appreciating my family, my kids, and all the things in life that TRULY matter. So through a lot of prayer, G-d is helping me through this, and in many ways blessing me through it by showing me that life is short and I should enjoy what he has blessed me with instead of chasing after things that do not matter. Ultimately we will go when, and only when He decides. We should put it in His hands, live for Him, thank Him every day for every beat of our heart, and for every breath we take. And most of all, trust Him and try to stop living in fear and enjoy all the He blessed us with. I have prayed for you and your baby. Congratulations, and I truly wish you well with you pregnancy, delivery, and most of all your blessed new gift, your precious baby. My the Holy One, blessed be He, bless you, your baby, your family, and your life.

Shalom

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Guest sparklelass

I have PSD and found out about it during my second pregnancy in 2003, I misscaried my first pregnancy which was twins and have recently lost another baby in February. I have since been told the misscaraiges were caused by the PSD and that I will need blood thinning drugs in any future pregnancies. I had to take Clexin injections after the birth of my son for 6 weeks, and had to also wear support stockings during and after the pregnancy. My mum and sister have been tested for it but dont have it and i dont know if anyone else in my family has it. Has anyone else had complications in pregnancy because of psd, and what the treatment is like?

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  • 4 weeks later...

Hello to my "new Family". I have just been confirmed as having PSD. As yet I dont have a figure from the count, by the Consultant has said that I do have a very low count figure, and that due to this we need to discuss the possibility of warfarin treatment for life. My history drew no appreciable concerns from medical staff until I has a sore foot caused by running 100KM per week. Then I was placed into a lower leg cast, within 24 hours I had 3 clotsin the medial vein. Then came the Clexane and warfarin treatment for 2 months. My father has had 3 leg thrombosis and 2 PE events. My Sister has had several misscarriages and (thankfully) two live births. Other family members have died from what was described within the family as "Thick Blood". My DVT in the leg, was as far as I know my first clotting episode, and hopefully my last one too!!

James, I logged on what there was a good possibility of my final diagnosis, I would just like to pass on my thanks for the web site, and all of the information you andthe other submitters provide. Without your contributions I would be a lot more scared and feeling isolated than I do now.

For what it is worth I now live in New Zealand, and would welcome any contact with other PSD people.

Kindest regards, and long live us all...

Alan

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  • 2 weeks later...
Guest Jessica.Sargent
How old are you? When did you learn you had PSD? Have you had any blood clots? How are you coping? Do you need advice on a particular issue? Do any of your relatives have PSD too? Tell us about yourself... registering on this forum is easy!

My name is Jessica i am 21 years old now, i was diagnosed with a PSD when i was 19 and Active Duty in the USAF. I was medically discharged due to the military fearing i may get a clot on long flights and such... I have never had a clot (knock on wood everyone) and i am on no treatment... (except i was taken off birth control pills and patches and everything else luckily im not allergic to latex haha) No one that i have found yet in my family has tested positive for PSD however many have tested positive for different clotting diff... They say you are born with it, but i was never tested at an early age so i have no idea they also say you can test positive if you are on birthcontrol, have HIV or AIDS or if you are pregnant... My hemotologist tested for all of the above and all came back negative she took me off BC and tested me 2 months later and my Protein S had only gone lower... I have been tested multiple times since and sometimes it is normal sometimes it is low and sometimes it is really low... and guesses??? It seems to come and go as it pleases...?????

:(

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Guest Josam15

Hi, My name is Tracey and I live in the UK, I am 35, married with 3 children.

I was diagnosed with PSD at the end of 2005 after we lost our daughter at 21 weeks pregnant following 3 other miscarriages at between 8-10 weeks. My miscarriages were not consecutive as I had our two sons with little problem but had varying amounts of bleeding in all pregnancies. When I had a big bleed at 17 weeks pregnant it was discovered I had an 8cm blood clot in the womb and sadly this caused an early labour and we lost our baby. We have subsequently had another little girl who I am glad to say is fit and healthy and 15 months old!! I was tested at the Recurrent Miscarriage Clinic after our loss and it was then i was given my diagnosis of PSD and low Anthrombin 3. I took low dose Aspirin for the first 6 weeks of my pregancy and then Clexane injections until 6 weeks Post Natal.

I was never given any literature on the conditions or much information at all only that I shouldn't use the Contraceptive Pill, HRT and to be careful on long flights.

I have started recently to worry about my blood condition, not for any particular reason other than that I feel so ill-informed and concerned now about whether I could have pased this condition on to my children or if my parents and siblings could have it. No-one has ever mentioned any one else in my family should be tested?

I don't take any medication and have never had any other blood clots and I hadn't considered wearing any Medical ID bracelet until reading some other posts here - it seems lots of people do?

Any info on the low Antithrombin 3 part would be great if anyone else has this?

Is it worthwhile going back to my GP to talk this all through, I haven't done til now as I think the pregnancy was a big worry and life has just been hectic with the 3 children.

Thanks for listening!

Tracey

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Guest davallan

Hello my name is TK, I am 34 and I come from Glasgow. I was diagnosed with PSD when I was 11 years old with my first blood clot. I have had 8 clots to date. My mother also has PSD but has never had any problems even though she was on the pill for years. I have 2 perfect children with no sign of PSD(touch wood). I am on warfarin 20mg every day and have an INR of between 3and 4 as I have clotted on lower INR in the past. I have a question. does anyone know if the home INR test kit is reliable and if so , where to get a relatively inexpensive one? Well thats me . bye for know. TK

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Welcome to the forum. The home INR test kits are semi-reliable - you can expect to continue to provide blood samples from time to time so that the supervising doctor can benchmark its reliability. The problems tend to stem from handling inaccuracies rather than the kit itself, so tests will ensure things are safe rather than sorry. We have details about the Coaguchek on our web pages. Problems with VAT handling means it's difficult for us to become a supplier so you might just as well go to Boots (the trade discount was very small so there's probably not much price variation). Be sure to get your doctor on board for prescribing the strips first though as some may object (for their own financial reasons).

If you have more questions please post them on this related topic...

http://www.protein.org.uk/forum/index.php?showtopic=929

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  • 1 month later...
Guest John1086

I've just been diagnosed with PSD. I had a DVT last January but was on wafarin for 6 months came off in July waited just over a month then had thrombophilia screening. Had three lots of screenings as different results came back but alas final tests show I do have this condition. I asked the consultant if he would put me back on wafarin but said the problems that could happen with long term use far outweigh taking the blue and brown pills. I'd be interested to know if anybody else has been diagnosed the same and also has been told they can't have any treatment. The consultant did add though that if I was to have another DVT then they would consider putting me back on wafarin.

Separately I have always enjoyed flying to the med for the annual summer holiday but consultant warns against this as at risk of having another clot. Again I'd be really interested to hear from anybody whom like me has been diagnosed but is not receiving treatment and wants to fly short haul

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Welcome to the Forum!

I am also not on treatment after the initial time on warfarin after a DVT. This is not unusual as the risk/benefit of warfarin is not good and the likelihood of another DVT is not definite so 'wait and see' is a common plan.

For flying, you could discuss with your GP or haematologist the possibility of injecting LMWH on the day of the flight. I think there is a thread on that in the lifestyle forum.

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Risk is a personal assessment so if you wanted to have anticoagulant therapy you could make a case for it. However standard practice is 6 months following a 1st thrombosis and indefinite if there is a 2nd. Your situation is in a grey area. Thrombotic events are considered to be a combination of risk factors coming together. If your DVT was influenced by a mitigating factor such as air travel or injury or other contributing risk factor in the 6 weeks prior to your DVT then you could argue you may be naturally lower risk. If it was spontaneous then the perceived risk might be higher.

I had a PE a year after my DVT. If I had been screened properly I would have known about my PSD. If I could wind the clock back I would have been better off staying on the warfarin.

I have a roughly stable INR. On holidays my doctor advises me to take warfarin as usual if the flight is 4 hours or less, and LMWH jab if longer. From the UK this means I can get as far as the Canaries without injecting. I do everything I can to reduce all the other risk factors including wearing prescription grade compression stockings (not flight socks), no alcohol (strong willpower is required because the flight attendants promote it so heavily), and plenty of soft drinks and exercise. I also choose airlines carefully to ensure I get good legroom.

I've been taking warfarin for 12 years now. The main downside to my day to day health comes from the initial damage to my veins from the DVT, not the warfarin. When I had kidney stones I was denied treatment options due to being anticoagulated. I have also acquired gout which I believe is a side effect of the drug. New drugs are under development so hopefully that issue can be reversed one day. Warfarin is far from perfect but it is good as a main line of defence against thrombosis risk.

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Guest John1086

Thanks so much for the advice. It's difficult to consider what is best as if I have another DVT I'll wish I'd have argued the case for continued anticoagulant therapy but if I don't then my body may react negatively. Food for thought. The medics have two theories - one view say the clot was caused by my ankle operation that was about 3 weeks before DVT but others say it is just a coincidence that I had surgery as the clot was more than likely resultant from my PSD.

As regards flying I'll talk to the medics about clexane injections. I was given these earlier in the year before as was going abroad before being diagnosed with PSD. What I do not want is having PSD to affect my quality of life and still travel as before. Medics advice about flying after being diagnosed with PSD is mixed i.e. yes you can but take injections but nothing can totally prevent the risk. So then I'm thinking if I do travel across the water and have a DVT I'll then think if only ! Catch 22 !

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If your DVT was influenced by a mitigating factor such as air travel or injury or other contributing risk factor in the 6 weeks prior to your DVT then you could argue you may be naturally lower risk.

I'm not medically qualified (and see the disclaimer below) but if you say you had an ankle operation 3 weeks before your DVT then that sounds like it was the extra factor that tipped the scale and precipitated your thrombosis. A strange as it sounds I think this is good news because it would lead me to conclude that coming off the warfarin you might be okay as long as you take care to reduce other risk factors for thrombosis which include obesity, birth control pills, dehydration, and inactivity. If you fly then take precautions - you've got a history of thrombosis so you probably ought not to fly without anticoagulant cover. I think your clot was caused by a combination of your PSD and your surgery. Did they give you any heparin jabs when you were in hospital? If they think you have hereditary PSD have they started screening your family?

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  • 1 month later...

How old are you? When did you learn you had PSD? Have you had any blood clots? How are you coping? Do you need advice on a particular issue? Do any of your relatives have PSD too?

I am surprised that it seems I have never answered to this question. I am 25 and I was diagnosed with PSD at age 21. I have never had a blood clot. I was diagnosed after a second miscarriage. My OB/GYN decided to run a battery of blood tests to see if she could figure out a reason for the m/c. At the time I knew my father had DVT's and was on Coumadin, but I didn't know exactly what he had. I think this family history encouraged the blood testing. After being diagnosed with low levels of PS I talked to my dad about what exactly he had, he has both PSD and PCD. After two years of begging my brother to get checked he was tested and diagnosed with PSD and PCD. My mother has no history of clotting problems.

For me the disorder has had the biggest impact on my ability to bear children. It was recently that my husband and I had decided to call it quits in that department and to our surprise I am pregnant and doing ok at 12wks.

I am not on any type of therapy routinely. I do take aspirin daily before any long flights or risky activities just in case my clumsy self breaks something hiking :rolleyes:

Recently I have been on aspirin daily b/c of the pregnancy and I expect that after Tuesday I will start LMWH injections.

The thing about the M/C's is that it isn't known that the PSD is what caused them, it could be completely unrelated.

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  • 2 weeks later...

Hi everyone,

I'm Amy, I'm 28 and was diagnosed with PSD in October 2007 when I was admitted to the hospital for a DVT. Everyone said it was a miracle that I am still around as the clot was probably about 4 inches long in my leg. I was having pains in my hip area and since I was 5.5 weeks post partum, my midwife and I just thought it was my hips moving back into place. The day after my 6 week check up I went to the ER because it hurt to walk, my leg was swollen and discolored.

It sounds like I might have paternal relatives with clotting issues and my aunt needs to find out what exactly she was diagnosed with since she forgets and isn't on warfarin (had a reaction I was told). I've had two of my sisters get tested, especially since one has just been put on birth control pills to help with an issue going on with her.

I have been a little extra stressed about things lately, since they also did a pap at my 6 week and it was abnormal. I had to be taken off my warfarin, of which I have to take 8mg daily with an occasional 12mg on Wednesdays, and my PT/INR the day after (after being off for a week) was down to 1.01. Today it's back up to 2.01(three finger pricks later). They had issues getting my levels between 2 and 3 in the hospital. I have a spot scar on my stomach from a bad stick from a nurse, who decided she was an expert on the Lovenox shots, and did it so awkward from the way it was being done that it hurt for over an hour afterwards. My husband had a beginners luck first stick and I hadn't felt the shot he gave me. I'm terrified of needles, so it wasn't my favorite thing being stuck in the hospital getting stuck and blood drained.

I had no complications with my first pregnancy and am glad that I now at least have a boy and a girl.

*Edit* I wanted to add that I found out about this site because the PA at my doctor's office printed out a page from here about PSD. They seem really great about wanting to make sure I'm informed and getting themselves as knowledgeable as they can about the subject.

I also had a filter put into the vein in my leg the day after I was admitted to the hospital to keep the clot from breaking up and going to my heart, lungs, or brain. My leg is still slightly more swollen in size than my other leg, which is aggravating to me as it keeps me from being able to fit into some pants that I would other wise be able to (not tight pants, but they end up tight or too tight on my DVT leg).

Edited by jenidhe
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Hi, My name as displayed is Nigel, I am 42 years old, I don't know if I have PSD but I have had 24 DVt's in my legs and Five Pe's in my lungs in 19 years.

I woke up one morning couldn't walk let alone stand up by the time I got to the bathroom I was coughing up blood, I rode my motrocycle to the GP surgery ans as soon as I walked in the door I collapsed the GP literally diagnosed what was wrong with me on the spot and an ambulance was called. The Doctors consultants and surgeons have never put a name to the condition I have and I don't suppose they ever will.

All this happened back on 10th of August 1989, first of all they stuck me on warfarin for six months but after three months i was back in hospitial for three weeks with another two Dvt's in my right leg, warfarin seemed very difficult to manage even though I was being tested three times a week.

After another six weeks my body inflated so that I looked a bit like the michelin man, I was having an allergic reaction to warfarin, so they put me on Nicomalone another anticoagulant but the dvt's kept on comming back and after one year again another allergic reaction which caused a bleed in my lungs, finally they put me on to Phenindione the generic name is Dindevan.

i have to take Dindevan twice a day as it is not as long lasting in the system as warfarin my INR is monitored up to four times a week and maintained at between 3.8 and 4.7 any lower than 3.8 and i develop more blood clots.

I was amazed at the ignorance among anticoagulant takers about the subjet of taking anticoagulants when I first read the comments on this site and hope that my experiences may help to clear up some of the untruths printed here, one such comment I read recently was under the heading "Should I get my INR tested" it was said that the INR test is only used for patients on warfarin, if you have only ever taken warfarin or know patients who are on warfarin this may be so amongst your little group but please be assured the INR test applies to all patients on blood thinning medication which includes patients on aspirin , nicomalone, coudamin, warfarin, phenindione etc.

I have become so proficient in knowing which amount of pills to take the clinic now asks me what i think my dosage should be.

If someone makes a desicion about doseage and i think it is wrong I will tell them it is wrong and I can pretty well predict the outcome.

I am interested in finding some answers whilst using this website I would like to find out if anyone else is taking phenindione /Dindevan? I would also like to know please if others were in the same boat as me before the clots came along perfectly fit and healthy? and I guess above all I would like some justification as to why this has occurred or maybe some kind of closure if you know what i mean.

I have lost my lively hood over this illness I have spent a year in a wheelchair totally unable to walk because of Dvt's reoccurring so frequently I have had to learn to walk again. I have lost loved ones over this illness to it has shattered my life time and time again, I am now permanantly on the sick and now dependant on disability benefits because I am in so much pain when I get to my feet, I have the legs of an eighty year old and they aint much to look at either. I was told at the age of 23 I was the youngest person to have had 15 blood clots one after the other ever in the UK in one year and 25 years before that I would have been dead on the occurrence of the very first Dvt and Pe (pulmonary embolism) simply because the medication had never existed before then.

I wonder how many people actually know how warfarin anticoagulants were discovered? well a young soldier tried to commit suicide after being in a bloody brutal battle on the front line and he ate rat poison to try to kill himself because he couldn't face going into battle again and strangely enough his blood thinned out but he survived, I know it's a little strange that someone elses misfortune saved so many lives but we owe that soldier so much.

I look forward to chatting with you all and learnning from your experiences with being on anticoagulants.

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  • 4 weeks later...
Guest lynnebugg123

Hello Everyone! Yes I have PSD and have had it for years. I was diagnosed in 1996 with a clot in my leg. After all this time and surgerys to save it, I found out this summer there is no hope, the leg is dying. :unsure: I have tried to live be careful all the time but that just isn't me. I do anything I choose to do and if I die living life so be it. But the best advise I can give anyone with this disease is to live life and take one day at a time. I have made it more years than I thought I would. Best of luck to all and enjoy life. :P

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How old are you? When did you learn you had PSD? Have you had any blood clots? How are you coping? Do you need advice on a particular issue? Do any of your relatives have PSD too?

Hi! My name is Belinda. I am 32. I live in Melbourne, Australia. I found out I had PSD when I was 29. I was 9wks Pg with my 2nd daughter, but my 4th PG. I was only tested when a few friends and I were talking about how complicated Pregnancy can be. One of them mentioned how they had had a clot from a long flight when they were 19. I mentioned that my father had a clotting factor (turns out it was PSD) and I didn't know much about it. She chooffed me of to my OB and he had me teted. My levels were a meager 18 instead of a lovely 40. So straight onto the Clexane I went. :unsure:

So far so good I haven't had any clots...fingers crossed.

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  • 1 month later...
Guest PLCLK

New member here - just wanting to say hello. I managed to stumble across the site having undertaken a Google search for where, in the UK, I can purchase compression stockings.

I suffered my first DVT in March 2000, following connecting flights (San Diego to Los Angeles to Heathrow to Manchester) - it was getting off the flight at Heathrow that I felt a pain in my left calf which I put down to being cramped up on the LA to Heathrow flight. (Being 6'6'' tall didn't help with the limited legroom). I ignored the pain (in hindsight foolishly but I knew nothing about DVT / flight risks in those days) for a few days and it was only when the swelling became bad I went to my GP. He sent me down to the local hospital where I was put on a course of Heparin and Warfarin (on this for about 6 months).

Had my second DVT about 2 years later - no flights or plausible excuses at the time - although I was aware of the risk of further DVT's arising so again, another course of Heparin and Warfarin but this time I went for further blood tests. Diagnosed with Factor V Leiden although can't recall anything about Protein deficiancies (although sure this was mentioned) so recommended to take the "over the counter aspirin".

For about 3 weeks now, I have suffered from one of the most unbearable phlebitis pains I have ever had - I've had them before - but this one went from my calf, round my knee and up my thigh. Saw my GP who gave me anti-inflammatories, and even went (eventually) to local hospital as I believed there was a risk (if there was a superficial clot) when this vein meets with the deep vein - in the thigh area (or so I have read). I can't believe how dismissive they were and only wanted to check if I had another DVT - no advice or support or scanning of my superficial vein.

I had put away my support stocking sometime ago (somewhere safe where it couldn't be found) and was desperate to find out where I could get a new one - which is where I found a link from this site. SO THANK YOU - I've ordered a new one which is winging its way to me.

I've had a look through some of the other postings and there are some real interesting stories and advice which I will take time to read through.

Regards

Paul

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  • 1 month later...
Guest Kym

Hi, my name is Kym (24) and I have just found out I have protein s deficiency. My sister (21) recently had a dvt in her calf due to a broken foot. Because of this, we both got tested as our grandfather also suffered from blood clots, protein s deficiency and was on wafairn.

We would like to know what the best form of contraception is??? We have stopped taking the pill.

Also, my sister is on wafairn for approx 6 months, some ppl say she should stay on it for life, others not. What is your advise?

I am just taking asprin to help thin my blood. Does anyone else do this?

We would appreciate any help.

Cheers, Kym

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Opinions vary but standard practice for warfarin is 6 months following a single episode of thrombosis and lifelong after a second. I took aspirin when I came off warfarin after my first clot but unfortunately it didn't prevent my second, so I'm now on warfarin all the time. My sister has PSD and has had no clots so she doesn't take anything. My mother has had one clot following surgery has just come off warfarin. It's up to you whether you take aspirin, maybe it will help, but in my case it didn't and from what I've read it is of more benefit to those at risk of arterial clots (fast moving blood) e.g. heart operation patients. It is also of benefit when combined with heparin during pregnancy. For contraception advice I recommend posting a new topic in the Pregnancy section.

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  • 2 weeks later...
Guest goldentoe3

Hello all, I am an new member and I was shocked and grateful when I came accross this forum. I had no idea there was so many others out there like me. I came accross the forum when I was looking for info on flying with PSD. I was diagnosed with PSD a little over 4 years ago at the age of 30 when I felt what I thought was a cramp in my right calf. I waited 5 days to go to the doctor and actually went to my chiropractor first to get adjusted and he told me to go to the hospital. Having a high pain threshhold almost ended my life, I was very lucky. My younger sister has PSD as well and had a stroke when she was 9. It wasn't until over ten years later when she was having brain surgery that it was discovered that she had PSD. I was supposed to get tested but refused thinking with the knee surgery I had and the travel I had done it would have maifested itself if I did. It was about 7 years later that I had my DVT and was finally tested with a protein S level of 17. When on coumadin I had to take 15mg to get my protime right so after one week in the hospital and one week on heparin injections they finally got my levels in the 2-3 range. I have now been off coumadin for 3 1/2 years and other than some calf aches I have had no long term side affects from my episode. To try and prevent another DVT I have avoided all vitamin K rich foods, taken aspirin when I fly and I also wear compression socks when I drive long distances or fly. My oldest son had been tested and he is negative for PSD but we have not had my two younger sons tested yet because they are 2 1/2 and 7 months old. I look forward to learning more about PSD in this forum and hopefully I can add some help here as well.

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To try and prevent another DVT I have avoided all vitamin K rich foods, taken aspirin when I fly

Vitamin K is essential for healthy blood and it does not cause any problems for people with Protein S Deficiency. However, if you are taking warfarin it helps to keep your dietary intake consistent, because this will help to regulate the INR. There's no need for anyone to avoid foods containing higher levels of Vitamin K unless you are having problems maintaining a stable INR. If you aren't taking warfarin you can have as much or as little as you want. See http://www.protein.org.uk/forum/index.php?showtopic=428 for more information.

Aspirin is known to have protective benefits against the risk of arterial clots (e.g. for heart surgery patients). People with PSD need to be concerned about risk factors for venous clots (e.g. deep vein thrombosis in the legs). There are differences in blood chemistry between fast moving (arterial) clots and slow moving (venous) ones. From personal experience I can tell you that aspirin failed to protect me from Pulmonary Emboli (clots in the lungs) which I took after my first course of warfarin was ended (and I hadn't been diagnosed with PSD at that stage). Aspirin is known to be helpful for patients taking heparin and aspirin combinations (e.g. during pregnancy) but otherwise its benefits as protection against venous-type clots is thought to be limited.

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Guest 4boys2girls
How old are you? When did you learn you had PSD? Have you had any blood clots? How are you coping? Do you need advice on a particular issue? Do any of your relatives have PSD too?

Hi there, I'm 25 years old. I've been told that I have PSD and Antithrombin III but am waiting to see my Haematologist to actually find out what exactly this means, hence I'm here and doing my research so I can think of questions to ask when I see her.

I was found to have lots of blood clots over both my lungs after the birth of my 5th child. I had suspected I might have clotting issues in the past as I've had many miscarriages all unexplained, but because I was "young" they would never investigate them for me. We actually suspect the blood clots may have been forming for awhile as I first started getting the symptoms a few years back when I first seemed to become really ill. Everyone assumed it was because I had my children close together and pushed my body too hard but I never felt this was the case as otherwise I was generally healthy I just suffered a lot of pains in my chest, had trouble walking or exercising because I couldn't breath properly and felt generally run down and tired and dizzy.

Surprisingly I have never had a DVT that I'm aware of... And yet it seems like most people here have??? Is it normal to have DVTs with this condition and I just missed it so it went to my lungs or is it possible I never had one at all???

I don't know if any of my relatives have PSD... I suspect it comes from my Mums side though as she had a DVT in her early 20s, my maternal Gran had DVTs throughout her life, and my maternal Grandfather had many clots throughout his life and eventually died at the age of 51 from one somewhere around his head (don't really know the details)... Some of my aunts also have problems with DVTs I believe but not sure on this as I have a very large family and it's hard to get proper information rather then just opinion.

Coping wise I have good and bad days. I am on Clexane currently, 80mg twice a day. I got pregnant whilst taking Warfarin (baby is thankfully fine though!) but it appears from the ongoing pain and breathing difficulties that I may still be building (is that the right word?!) clots on my lungs. I'm a bit frustrated as I just want to feel normal and healthy, instead I feel old and like I can't do anything without needing constant assistance from my Husband.

Anyway, I'm really looking forward to chatting to others with these same conditions... This is all so new to me, I really don't know what to expect or what might happen. They seem mostly concerned that I don't seem to be getting much better, and have now said my lungs may be permenantly damaged? I don't know how true that is or whether they were just saying it to get me to stop whinging about it!!! LOL

Anyway, it's great to have this forum as I felt very lost before I found this place and now I'm more reassured about the whole thing!

Best wishes,

Sarah-Jean

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Guest goldentoe3
There's no need for anyone to avoid foods containing higher levels of Vitamin K unless you are having problems maintaining a stable INR.

Thank you for the advice. I have no doubt that you have much more knowledge on the subject than I do. When I had my DVT I was doing a green drink cleanse which had wheat grass, broccoli and alfalfa. Lots of other "good for you stuff" as well and it was maybe the most vitamin k I had ever had in a short period of time. My hemotologist and my general practice doctor believe that it was a contributing factor in my DVT. Less than one year earlier I had traveled from Idaho where I live to Italy and back in less than a week and had no problems. When he and I discussed the knee surgery I had and that trip he couldn't believe I hadn't expierienced a DVT earlier. One of the mysteries of life I guess but because of his advice and my own personal "gut feelings" I have chosen not to eat vitamin K rich foods in high doses. I still eat foods with vitamin K just not often and only in small portions.

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Guest gailardiel

Glad to have found out about this web page.

YES I too have PSD. With the birth of my 3rd child, nearly 18 yrs ago. I had a PE 3 days after she was born, July 17th. On July 30th 3 days after discharge from hospital I had a stroke. Right hemisphere, the cause was unclear. After a year of testing I found out I was pregnant again.

The 4th child was easy and no problems. Since this time I have had 5 more strokes the last being 3 yrs ago in Apr. The only problem I have is in swallowing sometimes not always.

I had started to send this email 3 days ago and had the page completed when I hit the wrong key and had to start over. So here we are.

The only problems I had up to 3 days ago was a injuried back. I had a slip and fall accident 4 yrs in Sept. that's when the trouble started. The back was so painful and with med's, I had asked if they would mix with the coumadin the Dr's said I would be fine. Well that is when in the April I had my last stroke (6th).

When I read other peoples Forums, I don't understand their levels, in Canada I was told I showed a value of 300U/L with a normal rage of 700 to 1,400.

My whole family was tested at the time and only my Father had levels of PSD. His mother died of a Brain clot at the age of 57 (Scary)

Well what I was writing about a few days ago was there anyone out there so has had back surgery?

My MRI shows a mild central disc bulge of L4-5 and osteoarthritic change in the L4-5. My sciatica nerve is very painful. I had had 2 facet joint injections, and now I'm having injections right into my spine for relief.

Today is another story this morning a had a TIA and this afternoon another.

I have been under alot of stress lately with my Father passing away 1 month ago and other family issues. Stress levels are well above normal, actually really bad.

Need help with the back issues right now which will help with the stress.

Has anyone had surgery, because my Dr's say I can't have any surgeries. The Dr's state that a fusion my be required if the facet joint pain becomes severe, but it appears that I'm not a candidate for surgical intervention.

Does anyone have any suggestions.

At wits ends with the pain and the TIA's :P

Edited by James
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