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 My DVT story

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Lwynn



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PostSubject: My DVT story   Fri Aug 24, 2012 6:18 pm

I was diagnosed with a DVT in my thigh on August 16th. One of the worse days of my life. I had being struggling with funny feeling in my right calf for well over a month. I am a recreational jogger and thought I maybe pulled a muscle. My ankle began to swell slightly so I went emerg - worried that it was a blood clot. They did a D-Dimer and it was negative. I was told to put my feet up and wear compression stockings. It resolved slightly but I still felt something wasn't "right". Went back to my regular doctor and she said the same thing.

The slight pain and swelling did seem to resolve and I never thought much more about until after a 3 hour flight things went from bad to worse. About 7 days later my calf swelled up and was painful. Got into a different doctor and he looked at it and said he was 99% sure it was a clot. I told him my past history - which includes Birth Control for heavy and painfull periods. I am 50 years old and now of course I know I never should have being on them. He also said D-Dimers are a very inaccurate test. He said regardless of the negative D-Dimer I should have had an ultrasound. Not very often a doctor will say another made a mistake but he pretty much did.

Anyways I was sent for a Doppler Ultrasound and it came as positive - a signicant clot in my thigh that had likely proprogated from my calf. I was started on Lovenex and warfarin. Lovenex injections for 5 days and now warfarin likely for 6 months. My leg is in constant pain but actually better today - day 8. Can't believe it has already being 8 days with this nightmare with no end in sight. My right calf is 1 and 1/2 inches bigger than my left. Is this normal?

I am pretty stressed and actually have had a couple of panic attacks, one of which I went to emergency. I am terrified of a PE. They were really good at Emergency and did a bunch of testing. I never had a chest scan because they don't do it there. I have no pain breathing or anything like that - just mostly in my head I am sure. The doctor said it is unlikely the clot will move to my lungs, but I am still scared.

It is depressing searching the internet and reading all the stories. Most are not positive. I dreading living in chronic pain and not able to do the things I use to be able to do. I am an avid horse backrider and now I can't do that because of the risk of being injured and bleeding. Anyone else out there a horse back rider? I also jogged and can't do that for any length of time.

What is really sad to me is that all this could have being prevented. I never should have being on Birth Control pills at my age. If you or anyone you know are on them and are over 35 GET OFF THEM!



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dero
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PostSubject: Re: My DVT story   Sat Aug 25, 2012 12:48 pm

Hi Lwynn,

Welcome to LADVT, like I say to all new members, I wish it was under better circumstances that we meet, at least you found the site. The site was put together by people like you and I who have had clots and can talk about their experiences and hoping that these discussions may help somebody else that is going through this life altering experience known as DVT or PE and LIFE AFTER DVT.
Throughout the years many folks were and many of them are still doing what they thought they had to give up because of being on anticoagulants. Like myself, who HAD stopped riding Mountain Bikes for 4 years due to two different clots, (one in 2007 and the other in 2011) and being a lifer on anticoags, have enjoyed a summer of riding, granted I did have to curve my Adrenalin rush seeking experience, put away the "no fear" attitude like I was totally indestructible and yes this at the age of 52. I know that if I take a fall, I have to watch for cuts and head bangs, yes I am taking chances but it's MY DECISION.
The thing that most of us go through when we are initially diagnosed is, OMG affraid I can't do anything, it's going to trigger a PE!!!! Sure you don't go out running a marathon nor do you go out to the gym and do massive leg presses, but walking is highly recommended, to get the blood flowing and to keep our mind and body BUSY, I'm one of those that can't sit around doing nothing...

After the diagnose, there is a (roughly) six week period where the clot yield/meld itself to the interior wall of the vein where it is and becomes scar tissue, THAT is the period where you don't want to have blood rushing in the veins that may dislodge the clot and travel. During that period you can walk, if you leg allows you to do so, (pain and swelling). My second clot, it took me a month to ramp it up to walking 10 K and then I did some road riding, no hills, no record breaking speeds...
BUT AT LEAST I was moving around...
So, it's not the life sentence we originally make it out to be. The thing for you as a horse back rider have to watch is yes the falls, the branches swiping your faces (cuts and scratches) and in the barn, getting your foot walked on, or you getting squished between your horse and the stall wall, internal bleeding.
But still respect that 6 week period.

bable,bable... But that is what I recommend to newly diagnosed people, BUT talk to your Dr, always talk with your Dr about any alteration you do to your present lifestyle. Any questions regarding medications, your pharmacist is your best friend.
If you read, if not already done the various stories of the members here, you will find some good advices.

Hope this helps, and remember, there is no such thing as a stupid question, ASK!!!


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Lwynn



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PostSubject: Re: My DVT story   Sun Aug 26, 2012 8:03 pm

Thanks for your knowledgeble words. I guess one of the things I have come up against is all the different info I have being given. Since this happened to me while my regular doctor was away and ran into a weekend I have seen 6 different doctors. Some were positive some weren't. I was shocked when I heard that the blood clot never goes away! One doctor said it will turn into a scar tissuelike substance in my leg. So of course the blood flow in that vein won't get any better. One said I would be on warfarin for life and one said for 6 months. I don't seem to have any side effects from it so other than having the risk of a bleed - I can live with it I think.

The swelling in my calf is what bugs me- will it ever go down, hasn't much in 11 days. The one doc said it would take 2 - 3 weeks for the swelling to go down. He also said pain could last up to a year. Is this what others find? I have read that for some it never gets better. I was told also to NOT wear compression stockings while the body is healing the clot.

Anyway once the clot has settled I have every intention of riding again. Will definately wear a helmet and ride a reliable horse.

I really have very little pain right now - none when my foot is up and when walking it feels like a charley horse and the odd little niggleling feelings. Would that be blood flow trying to get around?

And yes I have spoken to my Pharmacist - and she was positive and helpful. She also mentioned that eating citrus fruits is not a no no. Anyone else being told not to eat grapefruit etc?
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Lwynn



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PostSubject: Re: My DVT story   Mon Aug 27, 2012 4:27 pm

I am back at work and exhausted. Leg really doesnt bother me too much. I am keeping it up and making sure I am walking around. Had my INR test today but won't have results until tonight - the lab here has to courier all the blood to all bigger lab. Is it normal to be so tired?
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PostSubject: Re: My DVT story   Thu Aug 30, 2012 7:11 pm

Lwynn wrote:
Thanks for your knowledgeble words. I guess one of the things I have come up against is all the different info I have being given. Since this happened to me while my regular doctor was away and ran into a weekend I have seen 6 different doctors. Some were positive some weren't. I was shocked when I heard that the blood clot never goes away! One doctor said it will turn into a scar tissuelike substance in my leg. So of course the blood flow in that vein won't get any better. One said I would be on warfarin for life and one said for 6 months. I don't seem to have any side effects from it so other than having the risk of a bleed - I can live with it I think.

The swelling in my calf is what bugs me- will it ever go down, hasn't much in 11 days. The one doc said it would take 2 - 3 weeks for the swelling to go down. He also said pain could last up to a year. Is this what others find? I have read that for some it never gets better. I was told also to NOT wear compression stockings while the body is healing the clot.

Anyway once the clot has settled I have every intention of riding again. Will definately wear a helmet and ride a reliable horse.

I really have very little pain right now - none when my foot is up and when walking it feels like a charley horse and the odd little niggleling feelings. Would that be blood flow trying to get around?

And yes I have spoken to my Pharmacist - and she was positive and helpful. She also mentioned that eating citrus fruits is not a no no. Anyone else being told not to eat grapefruit etc?

We all have different ways of reacting to these clots, the meds, the treatments. What I was told by my Dr , may not be the thing for you, that is why I always say, it's always GOOD to have a good relationship with you Dr, or your Hemo, or... You have to be able to talk with them and believe what they tell you, otherwise it's time to move on to another one that YOU can trust.

6 months on anticoags, is standard for most people, then you have folks that have family histories of clots, if you are idiopathic (meaning, they don't know WHY you clotted) you may be on for longer. My two clots are idiopathic, I was taken off anticoags 4 years after the first one and 3 months later I clotted again. Now I'm a lifer.

For comp socks( FUGLIES as we call them) I was wearing it the first week after diagnose (first clot) and immediatly after diagnose for the second one...

I have heard the opposite on everything I was told to do by my Hemotologist, so I don't know scratch who is right or wrong...
I'm not the only one like that... I have met many other clotters that have had the same thing told to them and then the totally opposite by many others... This is regarding, treatment, meds, healing time...
The way I look at it, is if it doesn't hurt you, keep on doing it.

I know, scratch scratch scratch
That is why I say learn to trust your Dr, be able to talk with him/her and believe...
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PostSubject: Re: My DVT story   Thu Aug 30, 2012 7:19 pm

Lwynn wrote:
I am back at work and exhausted. Leg really doesnt bother me too much. I am keeping it up and making sure I am walking around. Had my INR test today but won't have results until tonight - the lab here has to courier all the blood to all bigger lab. Is it normal to be so tired?

Oh yes, your body has been through a lot plus (not scientifically proven) but from talking with other warfarin users, it may be a side effect of warfarin.

I have been on many different type of anticoags, warfarin, Lovenox, tinzaparin sodium, Pradax and only when I was on Warfarin, I was tired ALL THE TIME.
Others have no issues whatsoever to warfarin.
Like I said, different folks react differently to various meds...

How are your INRs results?
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Lwynn



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PostSubject: Re: My DVT story   Fri Aug 31, 2012 12:24 am

My INR for the last 3 times were 2.6, 2.2 and on Monday 2. So today I was told to increase by 1 mg so I am now taking 6 mg a day. The doctor i saw today is referring me to an anticoagulation clinic which I am happy about. I feel good today but my lower leg is pretty swollen tonight. No pain though.
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Lwynn



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PostSubject: Re: My DVT story   Thu Sep 06, 2012 11:41 pm

Went to the anticoagulation clinic and thought it was really good. I am being referred by them to a hematologist.
I do have a concern though and it has to do with life insurance. Has anyone being refused insurance or have they being dropped because of a DVT? I am worried that if any of the tests come back positive I will never be able to get insurance.
Also know someone that works for a genetic clinic. She said I have a 50% chance of something coming back positive because 5% Caucasians have clotting disorders and since I have had a clot that makes it even higher. Make me worried my kids will never get indurance either.
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PostSubject: Re: My DVT story   Thu Sep 06, 2012 11:51 pm

Not I, I have been with the same insurance company since prior to my 2007 diagnose and have been getting med coverage from them, never was there anything saying that because I now have DVT, that they would drop me...

Get in touch with your insurance company and ask them.


scratch Would this be the Foothills Medical Centre that you are going to?
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Lwynn



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PostSubject: Re: My DVT story   Fri Sep 07, 2012 12:33 am

No its in Red Deer. Not sure what the doctors name is.
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PostSubject: Re: My DVT story   Sun Sep 09, 2012 2:47 pm

Still loving your FUGLIES (comp socks) ? cheers
I have mine on, all the time, well except when I'm sleeping.
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glenda1973



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PostSubject: Re: My DVT story   Sun Sep 09, 2012 3:09 pm

Hi. I,like you, developed a severe DVT in my upper thigh back in 1998. Mine also came from the birth control pill. I was only 24 years old. Today I am on lifetime warfarin and have had ulcers and constant swelling in that leg. They told me back when I had the original clot that I would have problems with that leg down the road and they were not kidding. Although I never took hormones after that I still developed a second clot in January of 2011 more than likely because the circulation in that leg had been so poor. That is why I am now on lifetime warfarin which to me is better than risking another clot. This leg has been such a burden to me since this all happened that I have begged doctors to amputate! Of course that is not an option but I have always been very healthy except for this. It is very frustrating....and scary!
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Lwynn



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PostSubject: Re: My DVT story   Mon Sep 10, 2012 2:27 am

Hi Glenda sorry you have had so much trouble with that leg. I pray i dont get a second clot. What a constant worry. I hope I dont have to stay on warfarin because I do alot of trail riding in the mountains etc on horseback and was just getting into training for competative trail riding when all this crap came down. Do you wear stockings?

Dero - yes I have no issues wearing the stocking really. I just find that it gets tight at the top by the end of the day so I sure hope they measured right?. I am only wearing one.
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glenda1973



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PostSubject: Re: My DVT story   Mon Sep 10, 2012 7:14 pm

yes, I do wear a stocking on that leg and it does help a lot with the swelling. I get lazy about it sometimes - especially in the summer - and don't wear it all the time.
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PostSubject: Re: My DVT story   Mon Sep 10, 2012 8:06 pm

Lwynn wrote:
Hi Glenda sorry you have had so much trouble with that leg. I pray i dont get a second clot. What a constant worry. I hope I dont have to stay on warfarin because I do alot of trail riding in the mountains etc on horseback and was just getting into training for competative trail riding when all this crap came down. Do you wear stockings?

Dero - yes I have no issues wearing the stocking really. I just find that it gets tight at the top by the end of the day so I sure hope they measured right?. I am only wearing one.

By the end of the day your leg still swells up a bit, something they can't compensate when they measure your leg for the sock. It's not a perfect science, but it helps a lot...
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PostSubject: Re: My DVT story   Mon Sep 10, 2012 11:12 pm

So its okay that it is a bit tight at the top by the end of the day then? Feels way better with them. I even forgot for awhile that I had this monster still lurking in my leg!

My INR is still sitting at 2.1 even though they boosted the dosage up. I have being way more active and drinking lots of water. Wonder is that has anything to do with it. Will see what they have to say tomorrow.
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PostSubject: Re: My DVT story   Mon Sep 10, 2012 11:25 pm

The other thing I do is that I have the sock end lower then the actual fold of the knee. When I bend my knee to a 45 degree, the sock ends lower (by about an inch) then the fold at the back of my leg(behind my knee).

The secret behind maintaining your INR is "consistency" that's for everything, alcool, food containing vitamin K, water... EVERYTHING, but many believe that you make them (anticoag clinic) adjust your dosage to your diet, as oppose to adjusting your diet to your INR.
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PostSubject: Re: My DVT story   Sat Sep 22, 2012 11:00 pm

I am a bit worried about my leg. The swelling is down alot but my inside thigh is feeling a bit funny - not really pain but a funny feeling. Hard to describe, almost a itchy feeling. Is this normal? The clot is in my lower thigh and behind my knee. Is this normal - of course I am paranoid that the clot is getting bigger! I am on warfarin and the last test it was 2.2. They increased my meds to 8 mg two days and 7 the rest. I have no chest pain or breathing troubles.
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