Jump to content

Do you have Protein S Deficiency?


Recommended Posts

First off, I'm so glad I found this forum, I've been trying very hard to learn about and research about all my ailments. it's difficult and daunting.

My story...

I'm 27 yrs old, no history in the family.

So, October 9th, 2007: I get home from work not feeling well. I'm thinking flu, bronchitis, at worst pnuemonia. I decide not to go to school. I was in the bathroom when I felt a really strong heartbeat and nearly passed out in the bathroom. I didn't want to go to the emergency room (I know, bad decision on my part) so I went to lay down. When I got up in the morning, I felt better. Took my shower, and it was then that I started feeling bad again. I was lying on the couch. i asked my sister to hand me my phone to call someone to take me to the dr. (Didn't want her to miss any school, she was a senior) She argued that she would take me. As we were leaving, she was locking the front door, I collapsed on front porch. I mentally thought, "can I make it to her car?" The answer was no, I told her to call 911 (US emergency services) The fire and rescue got there first. My pulse was 160 and my blood pressure was in the 40s. They immediately gave me an IV and used it to chemically shock my heart. They had to do it again before I got to the hospital. They found a massive Pulmonary Emoblism that had spidered through my lungs. They were shocked that I was even alive. They also found a clot in my right femoral. They put an IVC umbrella filter to catch that clot and put me on coumadin and lovenox. It was a week before I left the hospital, november 8th, they removed the IVC filter. In April they did a CT scan and the PE was gone. They stopped my coumadin (i was taken off lovenox after coumadin was theraputic) and recommended me to a hematologist. He then tested me for protein S and C, factor V, VIII, and 2 other things. I only came back with Type III Protein S Deficiency. but he also tested my D dimer, and it came back at 1 (should be less than .4) he said I had to go back on coumadin. Lovenox was causing rash at injection site. Tried arixtra, since already irritated, not sure if there was any relief with switch. I am now back off meds to test again for a clot.

My heart was checked and came back fine, I have been diagnosed with PCOS, and put on Metformin (glucophage) since I can't take hormones from PSD, and also with Narcolepsy (sleep disorder) on provigil for that. I also have a skin disorder Gougerot-Carteaud Syndrome (Confluent and Reticulated Papillomatosis) it's a keratinization disorder where your skin builds up excess protein. (I tried cure, but am allergic to the only known treatment. Ironically, I was in the hospital exactly 1 week before the PE with severe hives from the treatment--Minocyclene (in the tetra family).)

I'm happy, relatively healthy- it's a slow process, I'm still trying to build up my lung capacity and endurance again. And I'm trying to live as normal a life as possible. I have a great network of support with my family and friends. My doctors have been great, all communicating together to get me healthy. I'm lucky to be alive, I know that.

Link to comment
Share on other sites

  • 2 years later...
  • Replies 323
  • Created
  • Last Reply

Top Posters In This Topic

The update today is that my son at age 38 was hospitalized several days ago with PE in both lungs. It likely resulted from a minor injury to the groin and thigh area of his right leg about a 1 1/2 weeks before. Unbeknownst to him, he had developed DVT in his LEFT leg--even though the previous minor injury had been on his RIGHT leg! (Is this unusual or not?!!) After 3 days in the hospital, and treatment with Lovenox etc., he was released to go home. He is now on warfarin treatment, probably long term. He had one previous bout with DVT about 15 years ago, but doctors had decided against long term warfarin at that time. In retrospect, it was a bad decision given our family history! On my father's side, we have seen 3 generations of PSD/DVT. At some future date, my daughter and 5 grandchildren will need to be tested for PSD. We--and others with similar histories--need to be proactive and vigilent.

Link to comment
Share on other sites

  • 2 months later...

Hi! I'm Jill and I live in Nevada, USA.

I was about 25 when I was diagnosed with PSD, and have since been diagnosed with PCD as well. I was diagnosed after a distant cousin had a clot during gall bladder surgery, and was found to have PSD. Her doc recommended that everyone in her family be tested. She also traced back up our family tree and found many who had died from circulatory problems.

My mother was deceased, but had had clots and clearly had PSD. One of my two brothers is postive and the other is negative. The one with PSD has had two incidences of DVT between the ages of 45 and 50. One of my two children tested positive for PSD.

I am now 42 and have not had DVT, PE, etc. I was on Heparin during my two pregnancies but have not been on anything on a regular basis. I'm doing my best to just live a clean life, exercise, avoid hormones, etc. I don't worry constantly about PSD/PCD--sometimes, however, I feel like a ticking time bomb! Will it happen? When? I know I'm fortunate to be asymptomatic, but just wonder if and when that will change.

Wishing you blessings for good health and much happiness!

Jill

Link to comment
Share on other sites

Hi everyone. I am Shaz. I am 38 years old and live on the Queensland Australia. I was just diagnosed a two days ago with PSD. I personally have had no known blood clots. My brother is 37 he has DVT PE and PSD. My mother was test two weeks ago she also has PSD. My father has factor VIII.

Does any one no is children should be tested??

My twins are 9 year old both have asthma, croup, low blood pressure, low heart beats and one has had baker cysts. I was strongly condsidering having them tested. My brothers children are both under five and he is dead against it. He is also against medical alert braclets, but I'm all for them and have decided to get one.

I was just wondering if others out there have had there children tested?

Link to comment
Share on other sites

Does any one no is children should be tested??

I think it's important to have your children tested. If they have surgery or break a limb, their doctors should be aware so that they can be treated accordingly. There risk factors that they can avoid as well. My two children have been tested, and one is positive for PSD.

Link to comment
Share on other sites

  • 1 month later...

Hi

It's been many years between posts for me. Last post in approx 04 I had (in consultation with haematologits) to stop warfarin after a couple of scares. I hadn't had a DVT for many years at that stage. There was always an agreement that I was to wear strong compression stockings and if I was sick for just one day in bed then I had to go onto clexane 40mg daily until back to normal activities again.

Last year I stepped off a curb and went over on both my ankles. I spent 5 weeks on clexane until I was able to walk almost normally again. After months of physio I didn't fully improve. I had an ankle arthroscopy on my right ankle late last year and went onto clexane for another 3 weeks until back on feet properly. I continued to have further ankle issues and after more investigations it was discovered my right ankle was completely unstable and needed more significant surgery (essentially an ankle reconstruction). I had this in late march this year. Started off well. Haematologist said the three months that I wouldn't be able to weight bear properly to take clexane 40mg daily. I needed plaster for the first 6 weeks. I did well until I woke up three and half weeks post surgery with pain behind my knee and in my calf. As soon as I stood up to get crutches the pain was very intense. I just knee it was a clot .. . after all these years . .. NOT HAPPY!!.

Ultrasound confirmed DVT to crease of knee. They could only scan from plaster up (approx 5cm below knee) so I was lucky it was found. Surgeon refused to treat at home so ended up in hospital. Wasn't able to be discharged until INR = 2.0 or more. It took 10 days to reach 2.0 . . .. It didn't take that long last time to get therapeutic (approx 4 days).. . I still have plaster on and can't wait for it to come off. It didn't bother me until the clot and since then has been extremely painful .. Plaster off tomorrow now. Thank goodness. Into a boot for six weeks . .. will be months before able to walk properly again.

I am waiting to find out how long I need to be on warfarin again. Haematologist previously said that if ever had DVT again then warfarin would be a lifetime affair. I feel like this was provoked due to surgery, plaster and immobility. Others say that I shouldn't have got a DVT as on clexane 40mg daily and I also take 4 fish oil daily. I really hope and pray this is short term.

I am interested to know what others experience have been when they have had to have surgery or prolonged periods of immobility.

Thanks for reading my ramblings .

Pip

Link to comment
Share on other sites

Does any one no is children should be tested??

I think it's important to have your children tested. If they have surgery or break a limb, their doctors should be aware so that they can be treated accordingly. There risk factors that they can avoid as well. My two children have been tested, and one is positive for PSD.

Hi

When I was first diagnosed I my child was only two. I have chosen to not have tested (14 now) as it has had many implications like trying to get life insurance and income protection insurance for me. Whenever he has been unwell I ensure that the treating Dr's are aware of my Protein S so that they are more careful . . I would just like for him not to have the issues that I have had. Once diagnosed can't be taken back .. and they may not ever have a complication. In my personal opinion you have to hypervigilant and be aware of the possibilities of complications and try and ensure they reduce their risk factors. It is obviously a very personal decision.

My siblings and parents all were tested and everyone came up negative.

Edited by pipdel
Link to comment
Share on other sites

I am waiting to find out how long I need to be on warfarin again. Haematologist previously said that if ever had DVT again then warfarin would be a lifetime affair. I feel like this was provoked due to surgery, plaster and immobility. Others say that I shouldn't have got a DVT as on clexane 40mg daily and I also take 4 fish oil daily. I really hope and pray this is short term.

Firstly, welcome back :)

I'm sorry to hear you've been having such a tough time. I think the situation in which you picked up your most recent clot highlights how mobility is a risk factor for thrombosis, especially if you are pre-disposed. My mother picked up a clot whilst in hospital a couple of years ago, which we all feel was completely avoidable had the doctors paid attention to her symptoms... they too were forewarned.

I think I may be able to answer your question about longer term warfarin use... I started out with a dvt, then did 3 months of warfarin followed by aspirin. A year later I had PE (clot in the lungs) so obviously the aspirin didn't work. I was restarted on warfarin and have now been taking it for 17 years with just a brief spell on fragmin (similar to clexane) whilst being diagnosed. So far (touch wood) I have not had a clot in all the time I have been taking warfarin, and just a few spells of phlebitis (irritated painful veins). However after about 6+ years I did start having problems with gout and have subsequently learnt this is a common side effect with longer term warfarin use - that is under control by taking allopurinol (a dose of 200mg) - so it's just an extra tablet to take and nothing else to be bothered about.

I went on a long haul flight for my honeymoon a couple of years ago (13hrs) and just took warfarin. Five weeks ago I returned from a trip to Australia and was fine apart from jetlag/altitude issues which caused migraines on the days of arrival. For UK to Australia via UAE it is 9hrs + 13hrs flying time... obviously very nervous about dvt risks but had my warfarin very carefully checked in the run up. For added complication I even had a tooth extracted (upper molar) a week before flying which caused concerns regarding sinus issues. However I'm here to tell the tale and my regular warfarin dose was all that I took.

So... how do I feel about long term warfarin use... absolutely fine... it's not a perfect drug but it will do until something better comes along. If I had been properly diagnosed at the first dvt (and could have been, but they dropped the ball) and with hindsight I would have preferred to never have stopped and been through the trauma of the PE. I'm not medically qualified but in my personal opinion I think that you'd be better off dealing with longer term warfarin use, than having another clot. Just keep an eye out for gout!

Link to comment
Share on other sites

I have PSD I had a DVT and PE back in 1987 luckily I survived, after this event I was sent for testing and found out that I had PSD my father was then sent for testing and was found to have PSD as well, both my father and myself are on warfarin for life after both having DVT and PEs. My brothers were both tested and have PSD to, they havent had any clots so far we were told they only had it slight (whatever that means). Since having my own children back in 1995 and 1997, I was told to get them test when they were at puberty stage, I have had my daughter tested and she is free from PSD, I had my son tested and he does have PSD slight the same as my brothers, just a case of keeping an eye out for him if he is ill or layed up for a long time. He does keep asking me questions about things he does get a bit worried things.

Link to comment
Share on other sites

  • 3 weeks later...

Hi James I am a memeber biy forgetton my log in details, I was diagnosed with PSD after a DVT and PE in 1992 after other possible addfiditional tests, it was thought I also had Hughes Syndrome as I had a positive test to Lupus Anticoagulant PRIOR to being on Warfarin, I think I have read somewhere you cannot get a test for that whilst on Warfarin, I was also diagnosed with Lupus, However, it is now thought I only have PSD although due to testing problems, I feel that Antiphosopolipid cannot be ruled out totally.

I was 29 years old when I was diagnosed with PSD I am now on life long warfarin (ranges from 7-8mg day mainly) and 150mg Aspirin, I am anti-coagulated between 3-4 INR I have had many TIA's and this is why I was put on life long warfarin around 13-15 years ago now.

I have other health problems which would benefit greatly by surgery, but no one wants to take the risk of a G.A and surgery on me, so I am learning to live with other servere health issues.

I have total empathy for anyone suffering from PSD. I am not sure what type I have of the three, as I am not sure how to get tested to see. Any advise on that would be most welcome. Many thanks Diana

Link to comment
Share on other sites

  • 6 months later...

Update

Haematologist agreed with 6 months warfarin. I have now stopped taking warfarin again. I have been able to walk without cruthces etc for a while now & after over 6 months off work I am back. I have been off warfarin for approx 5 weeks. Has been all good basically up until about a week ago. For a week have had more ankle pain than have had. Today I've started to get more swelling & pain in lower leg. My teenage son noticed it easily :( (hopefully just becuase I didn't wear my compression stocking as it was so hot). Bad move!! I will see how it feels and get it checked out if doesn't improve. Moral of story is that I need to wear the compression stocking no matter how hot it is . .. . I might have move to a cooler country .. . LOL

Hi

It's been many years between posts for me. Last post in approx 04 I had (in consultation with haematologits) to stop warfarin after a couple of scares. I hadn't had a DVT for many years at that stage. There was always an agreement that I was to wear strong compression stockings and if I was sick for just one day in bed then I had to go onto clexane 40mg daily until back to normal activities again.

Last year I stepped off a curb and went over on both my ankles. I spent 5 weeks on clexane until I was able to walk almost normally again. After months of physio I didn't fully improve. I had an ankle arthroscopy on my right ankle late last year and went onto clexane for another 3 weeks until back on feet properly. I continued to have further ankle issues and after more investigations it was discovered my right ankle was completely unstable and needed more significant surgery (essentially an ankle reconstruction). I had this in late march this year. Started off well. Haematologist said the three months that I wouldn't be able to weight bear properly to take clexane 40mg daily. I needed plaster for the first 6 weeks. I did well until I woke up three and half weeks post surgery with pain behind my knee and in my calf. As soon as I stood up to get crutches the pain was very intense. I just knee it was a clot .. . after all these years . .. NOT HAPPY!!.

Ultrasound confirmed DVT to crease of knee. They could only scan from plaster up (approx 5cm below knee) so I was lucky it was found. Surgeon refused to treat at home so ended up in hospital. Wasn't able to be discharged until INR = 2.0 or more. It took 10 days to reach 2.0 . . .. It didn't take that long last time to get therapeutic (approx 4 days).. . I still have plaster on and can't wait for it to come off. It didn't bother me until the clot and since then has been extremely painful .. Plaster off tomorrow now. Thank goodness. Into a boot for six weeks . .. will be months before able to walk properly again.

I am waiting to find out how long I need to be on warfarin again. Haematologist previously said that if ever had DVT again then warfarin would be a lifetime affair. I feel like this was provoked due to surgery, plaster and immobility. Others say that I shouldn't have got a DVT as on clexane 40mg daily and I also take 4 fish oil daily. I really hope and pray this is short term.

I am interested to know what others experience have been when they have had to have surgery or prolonged periods of immobility.

Thanks for reading my ramblings .

Link to comment
Share on other sites

  • 5 months later...

Hi I am 27 and was diagnosed with PSD and Lupus Anticoagulant in May of last year (I still have to get my test results for my Protein C I haven't called). I had troubles staying pregnant (3x) so I decided to put myself on baby aspirin. 12 weeks out I finally decided to go to my OB and he put me on Lovenox injections througout the duration of the pregnancy. @ 34 weeks she thought she would try to come early but, thankfully we stopped her. 39 weeks I was induced and was not put back on the lovenox injections afterwards because it was a guess that I had some sort of clotting disorder. 6 weeks almost to the day later May 9th I had a noticble stroke. I had actually had 2 other strokes that I didn't even know about until later. I thought I had just pinched a nerve and left it at that. I am on warfarin for the rest of my life unless they find something better for me. :/ I also had undiagnosed Cholestasis so we shall see if I will ever be able to get pregnant again. :mellow: I am trying to have my mother tested and my sister. I will be testing my daughter when she has her anemia and lead screening done. Thankfully I have her and thankfully I came out pretty much unscathed. I am on 10 mg 5 days a week and 15mg 2 days out of the week and my INR is supposed to be between the 2-3 range and it is currently at 2.2. Came here to get the help and understanding that I need.

Link to comment
Share on other sites

Hi Carey, thank you for sharing your story with us. The drug companies are working on alternatives to warfarin, so when they say 'for life' it's probably going to be around 5 to 10 years and then there will be something else. Some of the drugs we've seen in trials have been able to do away with blood testing requirements as well. If we can all hang in there a little longer I'm sure the new meds will be able to help us. My INR target range is 2.5-3.5... it varies from person to person but ideally we should all be under 4 (over 4 increases bleeding risk but doesn't improve therapeutic cover).

Link to comment
Share on other sites

  • 1 month later...

Hi I'm new at this but will try anyway. I don't have PSD but my husband does. He was diagnosed in 1994. I guest he almost died. We were not married at the time. He has been on warfarin ever sence he was diagnosed. But like some of you have been saying they would up the dose. So when we got married I started doing a little serching (because I knew nothing about this) and I don't feel many doctors do either. I took him off anything green. And only tomatoes (one slice) once in a while. I didn't like the idea of them keep uping his warfarin. Also we eat pork chicken and fish. His blood for the last two years has been staying at 2.5. Then I added beef and it went to 1.5. At first I couldn't understand what we had done different to make it change. Then about two days after we found out about the report. I relized what I had done. So we are back to no beef. Now I do let him cheet after a blood test when it is fine. But only once a month. Usually the day of the test. I know it will go back to normal in a day.

The doctors say to let him eat what he wants and they will give him the warfarin to keep it stable. But I don't like him taking all this warfarin so I keep him on this diet and he has been doing fine. Doing without green veg. is a small price to pay to keep him healthy. I lost a husband of 27 years and want to keep him around for a while.

Link to comment
Share on other sites

  • 2 weeks later...

Hiya,I'm 26 and have been diagnosed since I was 18 with PSD.

My mum died when I was 8days old from a PE however doctors did not realise at the time she had PSD. I have had several PE'S over the years just as scary as the first. I am changing medication next week to try Deltaparin as Warfarin is not working for me. Is anyone else on this medication? I was on enoxaparin before for 4 years which I was very happy with however the side effects were not good- bone thinning off my spine and my hair began to fall out :(

Finding things stressful at the moment due to having a PE just in may which was extremely painful and meant I had time of work.

First time using a forum but hope it will help to realise other people are dealing with this too :)

Link to comment
Share on other sites

  • 1 month later...

hi, Im 30 yrs old and just been diagnosed PSD ... doctors have just started warfarin 5mg along with clexane 60mg ... 6 months back massive blood clotting developed in my basilic vein left arm after drawing a blood sample for my visa .... my arm swelled and started to pain like hell ... doctors suggested to leave it all alone as they thought this due to puncture in vein and did not realize that this could be PSD ... after visiting the doctors several times and a series of medical tests they found that i have PSD .... doctors feel that i am lucky that it has been diagnosed early ...they target the range of INR 2 - 3 and say that i have to take the warfarin for the rest of my life in order to prevent blood clots in other parts of my body ..... when i heard that i have got this type of blood disease this was quite shocking for me .... now i had to look over the factors which can cause this PSD .... i daily consumed 250ml of soy milk for 4 yrs after lunch as a beverage (obviously i didnt know how it can contribute to PSD), then im a smoker .... but no one in my family has PSD history

now i dont really know what caused this PSD, is it due to my diet, is it due to smoking or is it inherited and will i be able to recover from it or still got a life time threat of DVT and PE??? any replies ???

Link to comment
Share on other sites

How old are you? 57

When did you learn you had PSD? When I was 55.

Have you had any blood clots? No, so my doctor just had me go on low dose aspirin until I get a clot and put that information in my wallet or get a medical ID bracelet.

Do any of your relatives have PSD too? One of my brothers developed blood clots when he was around 20. He's been on warfarin since then and he's 53 now. A second brother got his third blood clot when he was 49 so they started him on warfarin for life since then. Neither of them has been tested for the genetic factors, but after my second brother went on warfarin, I went and had all the tests done and came up positive for protein S deficiency.

Do you need advice on a particular issue? Should my twin brother (not on warfarin) also get tested just for the PSD and my mother as well? I am thinking it comes from my mother's side of the family since she had clots in her legs after surgeries but was only on warfarin temporarily. Her father and sister had phlebitis. My father also took warfarin but that was because he had a metal aorta valve. Should my nephews and niece or cousins on my mother's side also get tested? Most doctors have no idea what PSD is or what to do for it. Are any diseases correlated with PSD other than PEs?

Link to comment
Share on other sites

  • 3 weeks later...

Hi all,

I have been a member of the board for a couple of months now. I am a 44 year old Canadian living in the shadow of Toronto. In December of 2010, I was shoveling my driveway the day after Christmas. A day later, I noticed what felt like overworked and crampy muscles in my right thigh (front and back). Having had a few sports injuries in my younger, glory days, I chalked up my stiffness to age and too much holiday eating. I am a large man (over 20 stone and 6' 2"). Perhaps typical of my gender, I had only seen a physician a t a frequency of once per year, or less, mostly to obtain anti-biotics for seasonal sinus infection.

After the holiday break, I returned to work on January 3, 2011. I had a desk job then. As the week progressed, the muscle stiffness worsened. Again I rationalized it away as aging. A hot water bottle to ease the stiffness was my self-medication. I am not a pill taker, so even aspirin was out. By the Friday, my right calf was severely swollen and I could not put on a loafer or tie up a shoe on my right foot. I spent the morning in various meetings and fidgeted in my office to find a comfortable sitting position. Eventually, I could not take the pain any longer and (due to some prior Googling) had considered a blood clot in my leg a possibility. I even mentioned this to the executive assistant in my working group.

So, I proceeded to drive myself (right calf and foot affected remember -- throttle pedal and braking foot) to a hospital closer to where I lived, about a 40 km drive in light traffic. Still not fully sure why I did that. I was in severe pain by that point in time and had a hard time putting weight on the knee and ankle. In about 3 hours, I was diagnosed with three clots (behind the knee, one mid-run in the superficial femoral vein in the inside of my thigh, and a third up near my groin. I received a prescription for 5 mg warfarin, and 18,000 IU shot of Fragmin and was discharged. Over the weekend, the pain amplified and I was back in an ambulance to hospital on the Monday morning. The pain was intense enough to cause sweating and tachycardia. So, nothing came of that. My warfarin dose was increased to 10 mg and my course of Fragmin (I'd had 4 by that point in time) was extended by 3. INR was hovering at 1.5.

With a very conservative GP, my warfarin dose was incrementally increased by 1 mg as I went for INR tests every couple of days. More fragmin. By the time my INR stabilized around 2.6, I was taking 13 mg warfarin and had received 13 fragmin injections. The process took about a month to dial me in.

I was also referred to an internal medicine specialist and so began the battery of tests (Sprial CT, chest X-Rays, venography, various tests for possible ailments as root cause) over a two-month period. In order to be assessed for various genetic deficiencies, I was taken off warfarin at the 5 month stage, waited 60 days and then underwent some genetic testing -- this finally identified the PSD. The test was repeated to verify. Even though Canada has "universal healthcare", many tests are NOT covered. Many were not covered under my employer's drug and extended medical plan. Of the tests and drugs where I saw the bill, Fragmin here goes for about $35 an injection, and the genetic and blood tests totaled about $800.

During the most painful part of the original DVT, I was off work for 10 weeks, in severe pain for the first 5 weeks and still in moderate pain at week 10. Under mounting pressure from my employer and their health care consultant, I returned to work. The commute was painful and I was unable to put on a dress shoe due to the residual swelling. Working from home was not possible to satisfy my duties. In the first two weeks back, I became progressively worse. A leave of absence was requested, as I was told that a new disability claim would not be granted. Then I was informed that leaves of absence are not granted for medical reasons. The catch-22 caused me to choose health over career.

In my time off, I started walking. Working up progressively to about 3km per day. I was prescribed 40mmHg full length compression stockings, which were uncategorically awful. They bunched in all the wrong placed and exacerbated my residual pain. I have post-DVT symptoms consisting of edema in my toes, ankle and knee and some phlebitic symptoms and a condition I call "wormy foot", which I have been told is turbulence in the blood flow. The stockings make it much worse, so they are out of my life.

In September of last year, started a new position in field construction with a lot of walking and stair climbing. I was referred to a haematologist who was a caring and excellent physician. With his help, I decided to remain warfarin free, as the concern I had about a bleeding event overwhelmed the concern I had about another clot.

That turned out to be a mistake. I felt twinges of DVT-like pain in my left (unaffected) leg. My GP explained that this was not possible for the DVT to travel right to left. I did not persist with him. I waited several more episodes of pain in my left leg before I contacted the haematologist directly. I was seen within 48 hours and additional clotting in my left leg was confirmed behind my left knee and in my groin.

So, I am now on long-term warfarin therapy.

The length of my story is to try to convince ALL of us to:

1) Don't be a "hero" -- go to the doctor. DO NOT ignore symptoms (unexplained cramping, pressure, redness, swelling).

2) If you have a confirmed DVT/PE -- get referred to a haematologist ASAP -- NOT an internist, ER doctor -- a specialist in DVT -- I waited way too long to push for a referral. The internist took weeks to see me. The haematologist had me booked within a week the first visit and within 48 hours when I contacted his clinic prior to the second DVT diagnosis.

3) Weigh the serious bleeding event versus renewed clotting very carefully. My desire to be pill free is at least a contributing factor to now being bilateral DVT. While I had the support of one of Canada's leading DVT specialists advising me I would do it differently if I could have a "do over".

4) Find a means to improve the pumping action in your calves or use your stockings OR consider making your own Oforu Tub for deep soaking -- remember that water pressure works just like compression stockings, only the pressure created is completely linear -- deepest cover is highest pressure dropping to "zero" (i.e. atmospheric) at the water surface -- 2-3 feet of cover works like a 20-50 mmHg stocking. Go to your local swimming pool it will help, IMHO.

5) Remember always that this is something that we can all overcome by sharing experiences, lessons learned, mistakes recognized and corrected. We have the gift of life and I am a more caring person because of what happened.

Thanks for listening.

Link to comment
Share on other sites

I was prescribed 40mmHg full length compression stockings, which were uncategorically awful. They bunched in all the wrong placed and exacerbated my residual pain. I have post-DVT symptoms consisting of edema in my toes, ankle and knee and some phlebitic symptoms and a condition I call "wormy foot", which I have been told is turbulence in the blood flow. The stockings make it much worse, so they are out of my life. In September of last year, started a new position in field construction with a lot of walking and stair climbing. I was referred to a haematologist who was a caring and excellent physician. With his help, I decided to remain warfarin free, as the concern I had about a bleeding event overwhelmed the concern I had about another clot. That turned out to be a mistake. I felt twinges of DVT-like pain in my left (unaffected) leg. My GP explained that this was not possible for the DVT to travel right to left.

Welcome to our forum Biff. I had a right leg DVT in 1994, warfarin for 3 months, then PE (clots on lungs) in 1995, then warfarin ever since. Yesterday I had my first "follow up" consultation with a vascular surgeon. I have always been puzzled why both of my legs have the same symptoms as yours, which is called Post Thrombotic Syndrome (PTS). Yesterday I had an ultrasound exam which showed the scarring in the deep veins of my right leg. In my right leg the superficial vein has taken over the task of the deep vein is enlarged but apparently in good condition. However I discovered that it was the other way round in my good leg! They found scaring in the left superficial vein in my groin area... an 18 year mystery was solved!

After a very frank and detailed discussion with the consultant the best options for alleviating PTS is elevated leg rest and compression stockings. I talked about the problems with thigh length and he agreed they weren't very practical but below knee would be sufficient to reduce the sores and popping-out veins I have on my feet. Surgery was an option for my left leg but when I asked for the justification he said for many people it is just a lifestyle choice because they can't be bothered with stockings. Not a good enough reason for me. I want to ensure that in 20 years time I'm still fit and active so I'm going to start wearing my compression stockings on a regular basis. My heart goes out to all of our members dealing with ulcers and amputations that can result from poor circulation, something that worries me for my long term health.

Link to comment
Share on other sites

  • 3 weeks later...

Hi everyone. I am 40 years old, and I was recently diagnosed with having a protein s deficiency and lupus anticoagulant. Does anyone out there have both these disorders? If so, do you have any advice? I had cerebral thrombosis and am now on warfarin for life. I don't know of any one else in my family with psd or la. No one in my family had any trouble with clotting. My inr was at first good between 2 and 3. It is now at 1.6, so my doctor upped it 1 mg. Does anyone know the chances of getting a clot again? I had a headache for over a month. When I went to my doctor he said it was probably stress. Then when I woke up one morning, my whole right arm was numb and I didn't have fine motor skills. When I went back to the doctor he tested me for a pinched nerve and anemia, which I didn't have. He sent me home and said to take Aleve. That night I had a seizure while I was sleeping and went to the hospital and diagnosed me with cerebral thrombosis. I was put on heparin, then warfarin. I now feel almost back to normal, in spite of this scary experience. Just wondering if I am going to lead a normal life.

Link to comment
Share on other sites

Welcome to our forum. Several members have posted about having lupus, but none that I can see have visited us recently, which is a shame. Perhaps there are a few more lurking and waiting to post... it might be a good idea to start a new topic just about Lupus and see what kind of a response you get. Chances are you'd hear from a few people because even though forum activity is quite low at the moment we still get something like 3,000 visitors a month to our site.

I'm a dreadful headache sufferer, and apart from de-stressing and rest, the main thing to focus on is eating at regular times and keeping yourself fully hydrated. Hydrated in "fully" terms means drinking before you get thirsty.

Link to comment
Share on other sites

  • 2 weeks 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? Tell us about yourself... registering on this forum is easy!

My name is Daniel and I have PSD, known for about 7-8 years, didn't know how special and rare this was, nor did the doctor inform me. I had many clots since I was 18, thank god I never took birth control, or I wouldnt be posting this. I was kicked out of the Navy when I had 2 PE's in the hospital. I had many PE's over the years. I had a DVT in my leg for the last 2 years I know of. I having difficult time coping with my limitations.

Link to comment
Share on other sites

  • 2 months later...

I am 48 years old and had a DVT when I was 34 (2000) and was just 8 weeks pregnant. I didn't know anything about PSD had never even heard of it. Been on warfarin since August 2000 when my son was born. I was carrying twins but lost my other son around 24 weeks. I have an umbrella type contraption in my main archery to my heart to stop any more clots making it to my heart and have been told I will be on warfarin for the rest of my life. This is worrying a little as although it doesn't impact on my life too much, I lived with it for 34 years with no clots or problems and only had DVT when pregnant which from looking at this forum and other sites Protein S reduce when pregnant anyway!

My mother died in January 2001 of a DVT but was never tested for PSD, when I had my episode I was asked if I had any sisters, which I don't, nobody asked whether my mother was still alive. I had been given no information about PSD at all so wasn't aware that you are born with it or that you get it from one or both parents. Was then told it only ran down the female side of the family! Doesn't look like that is correct now either. My brother has been tested and is clear. My mothers sister has been tested and is clear so in my family it's only me at the minute. It is brilliant to have a place like this to ask questions and find out information about others as I don't know of anyone personally with this. Thank you

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...