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Old 12-13-2003, 09:36 PM   #1
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mecster HB User
dvt recovery questions

hello and thanks in advance for reading...

I just need a little info/reassurance re: my dvt, which happened 5 months ago. I had 2 embolisms and a very large (pelvis to knee) clot in my left leg. Was hospitalized and put on Warfarin, and have recovered slowly. I feel permanent damage to my lung (it is restricted if I try to take a full breath), and my left leg is still 3 inches larger in diameter and functions at a greatly reduced capacity compared to the right. The warfarin levels have been basically good but a bit wobbly, and I sure would like to hear from someone with similiar conditions who is further along than I.

Will I ever be able to go running or biking (or any other leg stressing exercise) again? I thought I would be much more recovered after 5 months than I am. A recent ultrasound showed thickening of the artery wall. Will that ever lessen? And the clot is perhaps now half gone, still just below the groin and up into the pelvis. I still feel stuff happening in the groin/pelvis, so I know it's still there. How much should I worry baout it breaking loose if I am on Warfarin?

How to really know that the clot is gone, if the ultrasound can't reach into the pelvis? Some other type of scan?

Will I ever be able to wear my clothes again? Will my leg always be so darn big?

Will the lung constriction ever lessen, or heal?

How much am I still at risk, for embolisms, and for clots?

All my doctors ascribe my clot to the birth control I was taking, as I had NO other risk factors, and all my blood work looked fine. So now that I am off the pill, can I rest easy? How much will the damage and thinning in the vein in my groin make it more likely that this will happen again.

Oh, and my optomotrist found clots in my eyes, although they seemed to have no effect. Is that permanent damage that will make problems in the future?

And how much should I push myself exercise-wise? I am a bit scared to push it, because the embolisms occurred after hard exercise (before the Warfarin, though). The leg gets feels hot and swollen and tight when I exercise...should I still push it, both for the cardio-health, and the clot-recovery, and for future clot prevention? Or is there someway that I need to be careful?

So basically, how much does life return to the way it was, and what will be the long-term effects of this event?

Thanks in advance for your comments!

Last edited by mecster; 12-13-2003 at 09:39 PM.

 
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Old 12-14-2003, 04:49 PM   #2
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JillFLA HB User
Re: dvt recovery questions

In June I found out that I had blood clots in my arteries. I'm not sure how different my story will be since my clots were in my arteries. I had clots in both legs. In my left leg I had clots from my groin to my toes, full. In my right leg I had a few small clots in my toes and a couple in my thigh. They were serious enough that I had to have surgery to have the clots removed. They went into both legs and removed as much of the clots as they could and performed a bypass on an artery in my left leg. The doctors were unsure if they were even going to be able to save my left leg. Thankfully they did.

Since I am only 25 years old the doctors couldn't understand why this had happened to me. I was on birth control and I was told that I was to never be on any type of hormone treatment for the rest of my life. I was also told that I would be on Coumadin for the rest of my life. However, my hematologist told me that a new drug was coming out in January that could replace Coumadin and I wouldn't have to have as many blood tests.

The first order of blood tests I had done came back clear. When I was released from the hospital my hematolgist wanted me to be tested again for the same tests. This time he found out that I have a blood disorder called anti-cardiolipin antibodies, that I probably developed as a baby. He said that this disorder combined with the birth control pills can be the cause of my clots.

I had a setback in October because I developed an infection in my leg and had to have 3 more surgeries. I had the graft in my left leg removed and the infection cleaned out.

When I was released from the hospital the first time I could not walk at all. I went to the phyiscal therapy to learn to walk again. Like I said in October I had a bit of a setback. Now I am walking with a cane and my leg is getting stronger every day.

I hope I can answer some of your questions:

Quote:
Originally Posted by mecster
Will I ever be able to go running or biking (or any other leg stressing exercise) again?
My case was very extreme and I have faith that I will be able to do things like that again. Before my setback in October I was skipping in phyiscal therapy and had no problem riding a bike. It's going to take a lot of work, but I know that I will be back to activity at some point.

Quote:
Originally Posted by mecster
How much should I worry baout it breaking loose if I am on Warfarin?
I never had a clot break loose so I'm not sure.

Quote:
Originally Posted by mecster
How to really know that the clot is gone, if the ultrasound can't reach into the pelvis? Some other type of scan?
I've had ultrasounds peformed on my legs and CT scans with contrast (where the send dye into system intravenously)

Quote:
Originally Posted by mecster
Will I ever be able to wear my clothes again? Will my leg always be so darn big?
Now that I don't have any clots in my legs I don't have any swelling. I have very little swelling in my left foot from time to time, and I have to wear shoes that are a size larger.

Quote:
Originally Posted by mecster
Will the lung constriction ever lessen, or heal?
Like I said, I luckily never had my clot travel so I don't know the answer to this

Quote:
Originally Posted by mecster
How much am I still at risk, for embolisms, and for clots? So now that I am off the pill, can I rest easy? How much will the damage and thinning in the vein in my groin make it more likely that this will happen again.
My doctors have told me that if I continue to stay off of hormone therapy and continue with my Coumadin treatment I should not develop any other clots. But my blood and pt levels are watched closely and often. When I was first released from the hospital I was put on Plavix and Pletal. I was on Pletal for 1 month and Plavix for 4 months. These two drugs helped my blood become slicker so that it would slide through my veins and arteries easier. I've also been told to be careful when I travel, not to sit in one place for too long. I pull over after about 2-3 hours in the car to stretch my legs.

Quote:
Originally Posted by mecster
And how much should I push myself exercise-wise?
I was told I can participate in physical therapy as much as I can tolerate. I push myself a lot because I want to walk normally again. When I feel a lot of pain or see some usual swelling I slow down.

Quote:
Originally Posted by mecster
how much does life return to the way it was, and what will be the long-term effects of this event?
I don't know if my life will ever return to the way it was. I appreciate my health and the simple act of walking way more than I ever did before. I understand that health is a delicate thing and I need to not abuse my body. I will take pills for the rest of my life and be aware of things my body tells me.

I hope this helps some. I haven't been going through much longer than you but it always nice to hear from someone who can relate.

 
Old 01-12-2004, 06:18 PM   #3
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mecster HB User
Re: dvt recovery questions

Thank you, Jill. You're not alone, and your comments were very helpful to me. I truly hope you recover well and have no further setbacks! My best to you - Meca

 
Old 01-14-2004, 11:10 AM   #4
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Join Date: Nov 2003
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stillwtg HB User
Re: dvt recovery questions

hi, I'm not sure that this is really related to your problems at all but just thought I'd offer my experience. I haven't had dvt but I am currently being treated for infertility and one of the tests they do is for a gene mutation that can increase chances of blood clotting. The mutation (that I am positive for) is MTHFR. It doesn't mean that clotting will happen but it puts those who have it at an increased risk. I inherited it from one parent but those who inherit it from both parents are at an even higher risk of clottin. Have you happened to have this test done? Just curious, but it might be something worth checking out, I don't know. Good luck and I hope you start feeling better.

 
Old 01-19-2004, 03:36 PM   #5
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Join Date: Sep 2003
Location: bridgeville
Posts: 30
Ash16 HB User
Re: dvt recovery questions

i know that this post is a few days old but i figured i would reply anyway. I had my first clot when i was 14. I was on birth control for only 3 months and my blood clot was also huge (from my hip to my knee). I can telll you now that the recovery will be slow... but you will recover. I have permenent damage in the vein that the clot was in. I still have alot of pain if i am on it too long or i walk too much. However, i am a runner and i do still enjoy running everyday. As you know, the doctors encourage you to regularly exercise the leg that the clot was in so that a new one doesn't form. Unfortunately, I am only 16 years old and i have had 4 clots since my first one. I will have to be on different blood thinners (because you can't be on one for too long or you'll have internal bleeding) for the majority of my life as i am told. But i am not complaining. If it's going to save my life... then i am thankful for it. I don't know if this helped you at all... but i thought i would reply anyways.
__________________
~ash~

 
Old 06-09-2004, 11:49 PM   #6
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deaner38 HB User
Re: dvt recovery questions

Hi Mecster. I am in my 6th month of recovery from DVT. My heart goes out to you and I know how frustrated you feel. It was also my left leg and the clot(s) were massive. Fortunately I did not suffer the PE's in my lungs, I have had several bouts of severe asthma after leaving the hospital. Each time I feel the tightness in my chest, I fear that it may be a clot. I wear compression stockings on my left leg every day, and sometimes on the right as well. My left leg does appears to be healing, but the process is slow and still painfull. I try to walk every day to keep the circulation going and it is easier now than a couple months ago. I have even played chase with my grandbabies (I'm 46, granddaughters are 2 and 5 years old) a little, but the leg always feels tight and swollen afterward.

I am now having pain and numbness in my right leg. The Doctor's can't seem to give me an answer as to what's causing it. One says it's sciatica, from favoring the left leg, then the 'Specialist' says there is nothing in the ultrasound, CT Scan or MRI to indicate pressure on the spine. I keep complaining and they keep passing me to another Doctor. My primary MD is getting ready to take me off the coumadin and it does frighten me a little. I want to speak with a doctor who deals with blood and vein disorders more specifically. Do you have any suggestions for me?

I don't know if hearing from me helps at all, I just wanted you to know you're not alone in this. This event has turned my life upside down, and many of my friends and family don't seem to understand my concerns. Hang in there and try to keep your spirits up. I wish you the best of luck and hope that you begin feeling better soon!

Deana

 
Old 09-30-2004, 05:41 AM   #7
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Join Date: Sep 2004
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carole99 HB User
Question Re: dvt recovery questions

Hi,
I am new to this, and as well am recovering from DVT in left upper thigh. Suspect after bloodwork that mine is caused from travel. I am used to being active and have fear of resuming activity level. Coumadin daily, with weekly tests and unfortunately my level has been difficult to maintain between 2-3. Experience headaches, gum bleeding, and have had some numbness in my face. Trying to relax and accept this, as anxiety does not help improve situation. I have been off work for 2 months, expecting up to 6 months to dissolve clot, and possibly on coumadin for a year. Anyone have similar situation? Also, when is it too much. I was told initially no lifting, sports that I could get injured. The only information I could find on vigourous activity and bloodclots stated that when we do vigourous activity, our BP is temporarily increased, and blood pumps fast back to heart and could dislodge clot. Enough to make me not want to take up running. Still having pain high in my leg, which makes me uncomfortable, thinking that clot is moving. Any feedback or information would be great. Have you people been off work? How do you comfortably resume working? I have a job that I stand for up to 8 hours a day, I work in a gym as a trainer, and have to demonstrate use of equipment, no breaks or lunch, and I know my doctor is great in the sense he would not jeopordize a patients health by sending them back to soon, but most people work for the $$ as do I, so suggestions?

I feel slightly ashames as I read posted notes. I am 38 and thought I was too young for a clot, and reading the 16 and 23 olds comments, makes me feel slightly selfish.

 
Old 10-02-2004, 09:59 AM   #8
Junior Member
 
Join Date: Oct 2004
Location: MS
Posts: 16
mkinder123 HB User
Re: dvt recovery questions

[QUOTE=mecster]hello and thanks in advance for reading...

I just need a little info/reassurance re: my dvt, which happened 5 months ago. I had 2 embolisms and a very large (pelvis to knee) clot in my left leg. Was hospitalized and put on Warfarin, and have recovered slowly. I feel permanent damage to my lung (it is restricted if I try to take a full breath), and my left leg is still 3 inches larger in diameter and functions at a greatly reduced capacity compared to the right. The warfarin levels have been basically good but a bit wobbly, and I sure would like to hear from someone with similiar conditions who is further along than I.

Will I ever be able to go running or biking (or any other leg stressing exercise) again? I thought I would be much more recovered after 5 months than I am. A recent ultrasound showed thickening of the artery wall. Will that ever lessen? And the clot is perhaps now half gone, still just below the groin and up into the pelvis. I still feel stuff happening in the groin/pelvis, so I know it's still there. How much should I worry baout it breaking loose if I am on Warfarin?

How to really know that the clot is gone, if the ultrasound can't reach into the pelvis? Some other type of scan?

Will I ever be able to wear my clothes again? Will my leg always be so darn big?

Will the lung constriction ever lessen, or heal?

How much am I still at risk, for embolisms, and for clots?

All my doctors ascribe my clot to the birth control I was taking, as I had NO other risk factors, and all my blood work looked fine. So now that I am off the pill, can I rest easy? How much will the damage and thinning in the vein in my groin make it more likely that this will happen again.

Oh, and my optomotrist found clots in my eyes, although they seemed to have no effect. Is that permanent damage that will make problems in the future?

And how much should I push myself exercise-wise? I am a bit scared to push it, because the embolisms occurred after hard exercise (before the Warfarin, though). The leg gets feels hot and swollen and tight when I exercise...should I still push it, both for the cardio-health, and the clot-recovery, and for future clot prevention? Or is there someway that I need to be careful?

So basically, how much does life return to the way it was, and what will be the long-term effects of this event?

Thanks in advance for your comments![/QUOTE/]
Hi, I know exactly what you are going through. It all started with me when I was 16 years old. I am 23 years old now. I am a female. Ok here's my story. I had got first DVT when I was 16. Since then I have had 3 more. I have had 3 DVT's in left leg. 1 In the Van Cava. I have not had any in my lungs. When I had gotten my second DVT they ran tests on me. I have Factor V Leiden, and Protain C dificency. It is an inherited blood disorder. I take Fragmin for life.( Blood Thinning Shot) I was taking wafarin but i was still developing clots while on that.That is why they put me on Fragmin. Not fun. To your questions. I had my first dvt 6 years ago and It is still there. It is very likely that it wont move now because it is attached to the vein wall. I have heard that you should exercise your legs as much as you can tolerate because it helps you to grow colladeral veins. Some peoples clots disolve and some peoples dont. Mine did not. I hope your does. I have had pain and swelling in that leg every since the first clot. I had the Vena Cava filter placed because the doctors was afraid of me developing new clots and them going to my lungs. I have had to have my tubes tied too because my doctor said I should. But I have found out that there is alot of people who has done the lovinox shot during pregnancy and had a normal child and chilbirth. I hope I have answed some of your questions. If you have anything else to ask me just ask on and I will try to help you. I hope you get well and Clot free. Take Care. Michelle

 
Old 10-03-2004, 11:37 AM   #9
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Join Date: Oct 2004
Posts: 37
liana28 HB User
Re: dvt recovery questions

hi i am 18, i developed "massive" dvt in my left leg this past march (birth control). my leg would swell up all the time for the first 5 months, but it stopped now. i have tried exercising more now that it is gone but unfortunately it swells up and gets numb still (sometimes). i was told this is because my veins were damaged, so its hard for the blood to move around them? anyways, i was just taken off my coumadin because the clots "should" be gone by now, although this past august my ultrasound showed i still had them.. but my hematologist (sp?) told me it should just be scarring from the dvt.

 
Old 10-03-2004, 12:53 PM   #10
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Join Date: Jul 2004
Location: usa
Posts: 2,943
mel1977 HB User
Re: dvt recovery questions

wow, what kinds of bc have you ladies been on??? What other factors were involved that lead to the clot in addition to bc? One thing we use in hospitals for people with DVT and swelling are TED hose. These are anti-embolism stockings that you wear daily. You can get knee high or thigh high. Some of my patients love them, others hate them. The ones that love them say their legs feel so much better when they are on. They are tight, worse than pantyhose, but they are good. I really recommend them for traveling persons especially on overnight flight when you may sleep and not move your legs as much. I am on Depo and have been for ten years with no complications. I would like to know what you all have taken.

 
Old 10-03-2004, 01:46 PM   #11
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Join Date: Oct 2004
Posts: 37
liana28 HB User
Re: dvt recovery questions

Quote:
Originally Posted by mel1977
wow, what kinds of bc have you ladies been on??? What other factors were involved that lead to the clot in addition to bc? One thing we use in hospitals for people with DVT and swelling are TED hose. These are anti-embolism stockings that you wear daily. You can get knee high or thigh high. Some of my patients love them, others hate them. The ones that love them say their legs feel so much better when they are on. They are tight, worse than pantyhose, but they are good. I really recommend them for traveling persons especially on overnight flight when you may sleep and not move your legs as much. I am on Depo and have been for ten years with no complications. I would like to know what you all have taken.
i was on ortho tricyclen lo (for 8weeks)

 
Old 10-18-2004, 08:22 PM   #12
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Pookie1992 HB User
Cool Re: dvt recovery questions

Hi. I'm new to this site, just found it about 20 minutes ago. I know what you're all going through. I was diagnosed on 10/06/2004 with my 3rd DVT. This one is in my groin(right where your leg bends) and is about 4 inches long. The other two are in my right leg. I've lived with the pain of these since 1986 when I was diagnosed with the first one. I have to have a V/Q scan done on 10/20/2004 because I may have a PE(pulmonary embolism) in either my lungs or heart. Right now I'm on medical leave from work, but I know I won't be able to return to work, because I work in a pharmacy standing for 8 hours a day. I am so glad I found this website, because all the other ones I've been one had nothing for people with DVT's. I was 19 when I got my 1st DVT. Now I'm 37 and just applied for disability. My husband keeps reminding me that I need to take care of myself, especially for our 4 year old. Is there anyone on here that has had a V/Q scan? The chest pains are the worst, the pain in my leg I can handle(I've done it for 18 years). For all of you that want to get back to work and exercise, please listen to your body. I haven't done that for the last 5 years, and now I have 1 new DVT and possibly a PE. Now with the realization that one of them could dislodge at any time and kill me, I'm learning very fast to listen to the pain and not to push myself like I used too. The sofa(unfortunately) is becoming my new best friend, because even sitting upright in a chair is very painful. Don't know if any of this will help anyone, but it does help me to talk about it with other people that know what I'm going through.

 
Old 10-19-2004, 03:10 PM   #13
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Join Date: Oct 2004
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liana28 HB User
Re: dvt recovery questions

Quote:
Originally Posted by Pookie1992
Hi. I'm new to this site, just found it about 20 minutes ago. I know what you're all going through. I was diagnosed on 10/06/2004 with my 3rd DVT. This one is in my groin(right where your leg bends) and is about 4 inches long. The other two are in my right leg. I've lived with the pain of these since 1986 when I was diagnosed with the first one. I have to have a V/Q scan done on 10/20/2004 because I may have a PE(pulmonary embolism) in either my lungs or heart. Right now I'm on medical leave from work, but I know I won't be able to return to work, because I work in a pharmacy standing for 8 hours a day. I am so glad I found this website, because all the other ones I've been one had nothing for people with DVT's. I was 19 when I got my 1st DVT. Now I'm 37 and just applied for disability. My husband keeps reminding me that I need to take care of myself, especially for our 4 year old. Is there anyone on here that has had a V/Q scan? The chest pains are the worst, the pain in my leg I can handle(I've done it for 18 years). For all of you that want to get back to work and exercise, please listen to your body. I haven't done that for the last 5 years, and now I have 1 new DVT and possibly a PE. Now with the realization that one of them could dislodge at any time and kill me, I'm learning very fast to listen to the pain and not to push myself like I used too. The sofa(unfortunately) is becoming my new best friend, because even sitting upright in a chair is very painful. Don't know if any of this will help anyone, but it does help me to talk about it with other people that know what I'm going through.
hii,
do you know why you keep getting dvt?

 
Old 10-19-2004, 06:12 PM   #14
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Join Date: Oct 2004
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Pookie1992 HB User
Cool Re: dvt recovery questions

Quote:
Originally Posted by liana28
hii,
do you know why you keep getting dvt?
Hi. The first 2 were from pregnancies but this last one showed up out of the blue.

 
Old 10-19-2004, 06:58 PM   #15
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Join Date: Oct 2004
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liana28 HB User
Re: dvt recovery questions

Quote:
Originally Posted by Pookie1992
Hi. The first 2 were from pregnancies but this last one showed up out of the blue.
wow! so why from the pregnancies? from sitting down a lot? do you have any blood abnormalities?
thanks

 
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