Life after DVT...

In this review, we critically assess the literature on the incidence of postphlebitic syndrome, risk factors for its occurrence, available therapeutic options, and its effects on quality of life. As well, we describe available tools to measure postphlebitic syndrome. Recent prospective studies indicate that postphlebitic syndrome, a chronic, potentially disabling condition characterized by leg swelling, pain, venous ectasia, and skin induration, is established by 1 year after deep vein thrombosis (DVT) in 17% to 50% of patients. The only prospectively identified risk factor for its occurrence is recurrent ipsilateral DVT. In the sole randomized study available, daily use of elastic compression stockings after proximal DVT reduced the incidence of postphlebitic syndrome by 50%. Treatment options for established postphlebitic syndrome are limited, but include compression stockings and intermittent compressive therapy with an extremity pump for severe cases. To date, quality of life after DVT has received little attention in the literature. The recent development of the VEINES-QOL questionnaire, a validated venous-disease-specific measure of quality of life, should encourage researchers to include quality of life as a routine outcome measure after DVT. There is no criterion standard for the diagnosis of postphlebitic syndrome, but a validated clinical scoring system does exist. More research on postphlebitic syndrome is needed to enable us to provide DVT patients with comprehensive, evidence-based information regarding their long-term prognosis, to help quantify the prevalence and health care burden of postphlebitic syndrome, and by identifying predictors of poor outcome, to develop new preventive strategies in patients at risk of developing this condition.(more...)

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Yes, life after DVT is not always that easy to accept, but the faster you accept that there are going to be some changes in your life, the better it will be for your mental health. My doctor has told me that I will become a long term warfarin user to minimise the chance of reccurence of another blood clot. What that means to me SPECIFICALLY is that I have to give-up a lifestyle that I have enjoyed for the last ten years. I was an avid mountain bike rider, which is an extrem sport, the chances of me cutting myself on a branch or during a crash(which happens a lot) are enormous. I'm still not sure how I will replace that void in my life with. Because of the type of work I do, I have every summers off, so I was able to ride almost every day, many trips were put together with the soul purpose of going to mountain bike meccas, British Colombia, Colorado, Vermount, just to name a few.
No more.
So, life after DVT is very demanding, if you ask me, but living outweight the chance of injuring myself and not be able to control the bleeding. I have met many people that have been affected by this disease and they have to make the same decision as I have to make and accept it a reality.
By talking about it, we can help ourselves fully understand the down side of DVT.
You are more then welcome to share your thoughts and your decisions here.
dero

Just wondering, are there other people like myself, who cannot wear these compression socks? I developped an alergic reaction to the sock two weeks after I started wearing it.
Is there a big difference between wearing one or not? Does wearing one, lessen the swelling?

On feb 21/08 I had a talk with the nurse that is in charge of the SOX study(this study is to determine if the compression socks have a positive effect on outpatients who have suffered a lower extremety DVT), after seing how swelled up my leg was, she asked me if I wanted to try the compression sock again? Not really being sure if indeed I had an alergic reaction to it, we decided to try it out for a week and she told me that if I saw any rash developping, to immediatly stop wearing the sock. It now has been two and a half week and no rash, plus the swelling has gone down NOTICABLY!!! I will continue wearing he sock, since it is helping my leg, hoping that last summer's experience was only to a heat rash.

My doctor never suggested that I wear the fuggly...hmmm, something I must ask him about

I assumed it was only necessary while taking long trips but clearly not if I read some of the posts.

My leg hurts again today - clearly when I'm sitting at my desk too much even though I try to get up and walk every hour or so. I've ordered a leg exerciser - hoping that will help the circulation while I'm at my desk

Psssssssssssst Gizmo, try getting up and walking every half hours, plus hydrate, hydrate, hydrate...

I was diagnosed with PE (Pulmonary Embolism) almost 2 years ago and have been on warfarin ever since. I would like to get off it and was wondering if anyone has done so and used nattokinase as a substitute?

http://en.wikipedia.org/wiki/Nattokinase

Also, I was recently diagnosed with angina and prescribed a beta blocker (Atenolol) as well as a blood pressure reducer (Perindopril) and a cholesterol reducer (Lipitor), however, I'm experiencing bad side effects - especially from the Lipitor.

Has anyone heard of "strauss heart drops"? They are a natural product containing garlic, hawthorn, mistletoe, motherwort, cayenne, bilberry and white willow. It reduces cholesterol levels and blood pressure and makes blood platelets "slippery".

https://straussheartdrops.com/tech_data.asp

Thank you,
Ilse

I developed a DVT and a PE after my daughter was born Dec 08. I then found out after testing that I have Factor V leiden and Factor II mutation (heterozygous for both). I was on Coumadin for 9mths. My hematologist has allowed me to come off the Coumadin, but says that if I ever have a reoccurence, I will be on Coumadin life-long. I also am getting my tubes tied because I miraculously have two beautiful healthy children and I want them to have a mommy. Dr says another pregnancy = another DVT (with possible complications, one being death). I am a nurse and wear support socks (knee-high) to work but don't regularly wear them at home. Off and on my leg will ache and swell. I have had repeat doppler studies to rule-out reoccurence. I have never had a custom made compression sock made. Are the custom ones that much better, or is it ok to just wear the ready made ones. What are the advantages if any of knee-high vs. thigh-high?

Hi Jenn and welcome to LADVT, I know that your feedback is/will be greatly appreciated. Hope you can find answers to your querries.
As for the FUGLIES, I have been wearing the custom measured one, prescribed by my hema, the big difference that I noticed is that they do not bunch nor do they fall down, they fit my leg perfectly... Wonder if I could do a commercial for Fuglies.
I have PTS, so if I don't wear them that is when my leg swells up drastically and it is painfull, so I have learned to NOT forget about them...
As for the knee high vs thigh high, that I can't answer that, I have been wearing the knee high since the beginning (diagnose in Aug 2007).

Hi! I am Reni, I am new here. I am so glad I found this website. I developed a strand of blood clots in my leg, from my ankle to my stomach 3 weeks after I gave birth to my son. I also had 2 PE's. I had a venous thrombectomy to remove the clots in my leg and was on coumadin for 9 months. I was just wondering if there was anything I could wear around my knee while I'm doing housework or walking around a lot? I have tried to wear the DVT stockings but they are just so tight I'm afraid my circulation will be cut off and that's NOT what I need. I just need support for my knee because it bothers me a good bit as well as my calf. All 5 of my doctor's including a vein specialist told me I will always have swelling in my left leg, not bad swelling but if I look closely I can see it's a little bit bigger than the other, as well as a little pain like if I'm on it wayyyy too much or if it's cold or rainy.

The reason I ask about something for my knee is because I was doing housework yesterday and I bent over to pickup clothes and when I came up my knee on the leg I had the DVTs snapped and I felt like I pulled something. It's better today though. But for the future I don't want to get a serious injury.

Hi, I am Avtar Arora from India.I have came to know about PE just three weeks ago, when my fast friend Ajay suffering from it.His PE starts from fast
heart beat, fats breath and low blood pressure.He is almost on death bed when we take him to doctor.But thank God he is coming back home after treatment.Now doctor start 2 tablets daily for him.Doctor tell him that it will going for life time.But there are so many questions arise in our mind about this PE.Because after coming home, he has also suffering from low blood pressure, little fast Breath attacks within two weeks.Doctor told us these are minor symptoms of after PE recovery.And Doctor also suggest him to walk after every hour sitting.Three days ago, He is almost 70% feel well.But today
I talk to him, he is very week.I want to says that his health is going up and down.I want to know how much long time he need to stable(health wise)
Thanks.