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 Sad to have DVT - Happy to be here!

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mbl33



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PostSubject: Sad to have DVT - Happy to be here!   Fri Aug 01, 2008 2:00 pm

"here" meaning in this forum (but also to be alive).

Hello, my name is Michael, I am 46 yrs old from New Jersey (proudly most of the time), married with 2 kids (girl, 14 and boy, 10). Here is my story:

In about the 2nd week of June, I noticed a pain in my upper inner thigh - it basically felt like a groin pull which is why I did not think much of it. Over the next two weeks, the pain seemed to get a little better in the groin area, but seemed to move slowly down the leg. The pain was not that bad however. Again, I didn't pay it very much attention. At the end of the 2 wks, late June, one day, my knee got painful, particularly in the back. The next day, it got even more painful, and the back of my knee and my calf became swollen and tight as a drum.

It then became obvious to me that something was wrong. I was convinced that I either seriously damaged my knee or that it was a vascular thing even though I did not have any known vascular problems. Just by luck, I guess, I have a good friend that's a vascular surgeon. I called him up and asked him if he thought I should go to the ER. I went over his house, he took a quick look and said I should go to ER for Doppler.

Doppler confirmed DVT, specifically a "significant" clot that extended from my groin to my knee. They admitted me and got me on Heparin right away. I was also told not to eat because of possibility of doing a "procedure". The next day, the vascular surgeon got a Hematologist involved. Both told me about Thrombolysis, the benefits and the risks. Although they both left the decision to me, I asked them both if they would do it if they were me, they both said yes. So by the afternoon of day 2, the Thrombolysis was started by a third specialist, an interventional radiologist.

Thrombolysis is a procedure that involves inserting a catheter into the affected vein and slowly dripping in "super clot-busting" medication (TPA) over a period of time. The benefit is that there is less likely to be long-term pain and swelling and recurrence if the procedure is done. It is typically only effective for first time clots. The risk is that the TPA can reach the brain and cause cerebral hemmorage and death (nice!). The risk is small (1% or less), but real.

In my case the catheter was inserted a little below the back of the knee into the affected vein up to the groin area and it stayed for 15 hours. The procedure itself did not involve very much pain and I was not under general anasthesia. The hard part was having to lie on my stomach without moving or bending the leg for the next 15 hours. This is a lot harder than it sounds! To make matters worse, Thrombolysis necessitates being in ICU, so in addition to IVs in each arm, I was hooked up to what seemed like thousands of leads and conductors. I ended up getting morphene four times that night, not really for pain, but more to just sleep a little.

Anyway, I survived the night, and the next morning they removed the catheter and threw in a little angioplasty for good measure (now that was painful). I was told that they were not able to dissolve it completely because the clot had probably been building for a while and the Thrombolysis works best with "newer" clots. But being able to dissolve 2/3 to 3/4 of the clot is certainly better than nothing.

I ended up spending 5 more days in the hospital (8 in total) to ensure that coumadin was at therapeutic level. Most people that spend 8 days in the hospital never make it out. And all the while, except for the pain in my leg when I stood up or walked, I felt fine. The pain and some swelling that occurred when I stood or walked was almost all in my calf, and almost none in the thigh where the actual clot was (is).

The week I came home from the hospital, my calf actually got more painful and swollen so I started to worry again. But the second week post-hospital, it got markedly better and I was almost able to walk normally, without a limp, but slowly. Then I pulled a muscle in my back trying to put on the compression stocking (funny, right?), so walking became painful again but not because of my leg.

Fast forward to now (4 weeks post-hospital):

I have very little pain and swelling in my calf (yay), but I have not exercised or put major strain on it yet.

INR levels have proven to be very challenging in my case. A few weeks ago, it went from 2.0 to 7.1 in one week. They gave me vitamin K to bring it down. My dose is much lower now but it has gone from 3.7 two week ago (then moved from 52.5 g/wk to 45 g/wk), came down to 3.4 one week ago (then moved from 45 g/wk to 42.5g/wk), then tested at 4.2 today. Doctor is saying to skip tonight and tomorrow and then do 5,7.5,5,5,7.5 - I am worried about skipping two doses.

The Hematologist has concluded from blood tests that I have Lupus Anti-coagulant disorder. Lupus Anti-coagulant disorder makes me more likely to get DVT, heart attacks, and stroke. I will need to take coumadin as long as I have this, which may be forever. The doctor provided some hope that it could go away, and if it did for a long enough period of time, then we can consider not doing the coumadin anymore. Or maybe some time in my lifetime, there will prove to be a better drug.

Right now, I feel like the Coumadin is my security blanket.

In the last few days, I have noticed some stiffness, soreness, twinges, in my thigh which I have not had in the last few weeks. While it is much less than the "original" pain and there is no additional pain or swelling in my calf, I am concerned that maybe I am re-clotting. Or maybe this is what dissolving/healing feels like?

I know that because I am new at this, I am driving myself crazy. I stress over every little pain. When I start reading about DVT and PE on the web, I start getting a little short of breath. I am reasonably sure that this is probably from my own anxiety. I am seeing the Vascular Surgeon on Monday, and I plan to ask for a Doppler to be done (hasn't been done since the hospital). Maybe this will clear my head for a few days.

Sorry for rambling. I figured I would try to get it all out in one post. I have read some of your stories and I think it is great that we can come here and talk to fellow DVTers. I look forward to figuring it all out together.

Michael
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Gismo

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PostSubject: Re: Sad to have DVT - Happy to be here!   Fri Aug 01, 2008 3:39 pm

Hello Michael and welcome Smile

Great to meet you and to hear your story. Gosh, I cannot imagine how hard it must have been to lie on your stomac for 15 hours and not allowed to move your leg. Added to this, being hooked up to so many conductors and IVs. Wow, you are very brave! I wonder when do they decide to do the Thrombolysis procedure instead of just anticoags Ė perhaps the size of the clot?

I can so relate to you saying that Coumadin is your safety blanket. I agree fully. I was also told to be on Warfarin (Coumadin) life-long and as Iíve said before, I donít think I will ever be brave enough to stop Warfarin (given the opportunity later on). Time will tell, but at this point in time, Iíll rather be safe.

The pain which you are experiencing in the last few days could probably be due to the damage done to your vein when you got the DVT and can last for months after the incident. However, it is GREAT that you plan to do a follow-up Doppler on Monday. I also recently experienced more than usual sore leg so I decided to do a Doppler again just to be safe. Fortunately it showed the all clear! One thing is for sure, if I suspect something wrong, Iíll act on it Ė best to be neurotic instead of ignoring your bodyís warning signals.

This was the first I heard of Thrombolysis and how it is done so found it very informative! Iím so glad that you joined the forum and shared your story with us! Very Happy

Have a great weekend!

All the best,
Madeline
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PostSubject: Re: Sad to have DVT - Happy to be here!   Fri Aug 01, 2008 4:06 pm

Hi Michael,

A big hello and welcome!! sunny

Thank you so much for sharing your story. I found it absolutely informative...I never knew about what that procedure entailed... especially the incredible patience and stillness required! Wow--that would be tough, I can only imagine! Sounds like all in all, you have been through quite the experience. So you did not have a PE? That is so fortunate given the location of your DVT. Glad you are here and made it through!

Wow, your INR has been crazy! Up to 7.1!!! I hope it gets regulated quickly for you. What is your target range? 2-3?

I was diagnosed June 21 (2 wks. post initial pain), and I just had an episode on the wkd. where I over did things and actually felt DVT pain in my calf, the SAME as pre-diagnosis! I was a little surprised...I thought that whole original pain & limp was long over. (I started walking completely normally after a couple weeks after initial treatment). It caused the full limp and everything. The only difference was it dissipated after a couple of hours... thank goodness! I still get aches & pains in my calf (though not usually anything to that degree), under my feet (yeah, sounds weird), and especially behind my knee, but also a general ache on the side of my knee and the whole knee in general. (Where the majority of my clot is I think, but also because I strain my knee from the way I lie on my leg... when my calf bugs me I don't lie with my calf down, I turn my leg sideways, which I think strains my knee. Ugh! Smile So I guess the aches and pains are going to continue for some time because as Madline said there has been damage done to our veins (and those little valve--flap looking things--where the clots tend to stick to).

I'm still trying to figure things out (see my DVT Diary in the Lounge), so you're not alone! I think we'll be trying to figure it out for awhile. Smile Most of us drive ourselves a little bananas with watching over every pain, and generally stressing out and feeling anxiety from time to time. (Been there, done that, for sure!) geek This forum has been a godsend, for which I'll be eternally grateful. It has gotten me through a period of my life that no one else, who hasn't experienced it, can possibly understand or relate to.

Thanks again for sharing your story and very helpful information, and look forward to chatting. We're all on this journey together (sad but true I know).... so it's nice to have you here. Together we will conquer those clots! cheers

Have a great weekend!
Brenda
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PostSubject: Re: Sad to have DVT - Happy to be here!   Fri Aug 01, 2008 5:04 pm

Hi Michael,
Yes I understand you very well, I'm also sad that we all have had to deal with DVT at any level, but happy that you have found us. Any of us can tell you that as much as non DVT folks try to help us,they can't, because they don't understand what this silent monster does to you, mentally and physically. So, welcome to "Life After DVT". We tend to think of this as our special trendy club.
You will notice that NONE of us are from the medical community,we are all DVT out-patients trying to help other DVT out-patients with what we have experienced since our diagnoses. Whatever you are told here are STRICTLY ADVISES, please verify with a professional doctor (somebody that has a piece of paper in a fancy frame on a wall that states that he is certified in that field...)
Just to clarify some of the things you have said and put your mind at ease.
-It takes warfarin/coumadin 3 to 4 days to get out of your body, so even if you are put on hold for two days(no warf for two days) you are still protected. I was w/o any anticoags for 2 weeks because I was taking antibiotics, the two do not mix well together.

-I'm sure that you are well aquainted with all the things you can and cannot do while on warf, the interaction of vitamin K and Warf...

You are the first (on this forum, if memory serves me well)to have had a thrombolysis done, so we all will be learning from your postings and it may in turn be helpfull to somebody else that may join at a later date and have the same procedure done. It is appreciated that you keep records of your improvements so on and so forth...(Have a look at everybody's journals, you'll see what i mean...)

If you have ANY questions, PLEASE don't be shy,many of us have been at it for a while and othes are just staring, but we all have this in common.

WE ARE SURVIVORS OF DVT.
Remember that, one day it will help you.
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mbl33



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PostSubject: Re: Sad to have DVT - Happy to be here!   Fri Aug 01, 2008 11:23 pm

Madeline, Brenda, and Dero.

Thanks for the kind words. I will be happy to keep a journal and answer anyone's questions regarding the thrombolysis procedure. In the meantime, the following link does a pretty good job of of explaining the basics of thrombolysis.

http://www.radiologyinfo.org/en/info.cfm?pg=thrombo&bhcp=1

Regards,

Michael
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Justmartha

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PostSubject: Re: Sad to have DVT - Happy to be here!   Sun Aug 03, 2008 8:28 pm

mbl33 wrote:
"here" meaning in this forum (but also to be alive).

Hello, my name is Michael, I am 46 yrs old from New Jersey (proudly most of the time), married with 2 kids (girl, 14 and boy, 10).

The Hematologist has concluded from blood tests that I have Lupus Anti-coagulant disorder. Lupus Anti-coagulant disorder makes me more likely to get DVT, heart attacks, and stroke. I will need to take coumadin as long as I have this, which may be forever. The doctor provided some hope that it could go away, and if it did for a long enough period of time, then we can consider not doing the coumadin anymore. Or maybe some time in my lifetime, there will prove to be a better drug.

Right now, I feel like the Coumadin is my security blanket.

In the last few days, I have noticed some stiffness, soreness, twinges, in my thigh which I have not had in the last few weeks. While it is much less than the "original" pain and there is no additional pain or swelling in my calf, I am concerned that maybe I am re-clotting. Or maybe this is what dissolving/healing feels like?

I know that because I am new at this, I am driving myself crazy. I stress over every little pain. When I start reading about DVT and PE on the web, I start getting a little short of breath. I am reasonably sure that this is probably from my own anxiety. I am seeing the Vascular Surgeon on Monday, and I plan to ask for a Doppler to be done (hasn't been done since the hospital). Maybe this will clear my head for a few days.


Michael

Michael - welcome - sorry you are here but glad you found the forum. There are some really nice folks here!

It seems like almost everybody who has an incident like DVT spends a lot of time at first worrying and analyzing every pain. I know when I was first diagnosed and did a web search on mesenteric vein thrombosis, I scared myself half-to-death! I've got a few friends at work who have had DVTs and every one I have talked to has very similar reactions.....probably because (at least in my case) we ignored pretty significant symptoms the first time around - don't want to do that again!

I'm now not quite two months out of the hospital, and I still feel the effects of the DVT. My "innards" never feel entirely normal - if you poke me in the belly it hurts. The hematologist said I might not ever feel 100% normal again, so I am trying to adjust to the idea of a new normal. I wish I'd heard of thrombolysis when I was first diagnosed. Nobody ever even suggested it - perhaps its more difficult in some locations. I've got some genetic and acquired clotting factors, and I suspect I'll be on warfarin for a long time.

Anyway, although I know you are sorry to have had a DVT, I bet you and your family are both very happy you were able to leave that hospital after 8 days! I also spent a week in the hospital and I know it is absolutely no fun whatsoever!
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mbl33



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PostSubject: Re: Sad to have DVT - Happy to be here!   Wed Aug 06, 2008 6:41 am

Hearing that my stressing out about every little pain is typical for people like us that have DVT (or similar) makes me feel somewhat better.

On Sunday, I was able to walk for 2 miles, resting halfway, with almost no significant pain. I went to the surgeon for a follow up visit on Monday. I asked if we would do a Doppler, but he said that there would be no reason to a Doppler at this point. Only if the Hematologist were to be taking me off warfarin for good (which is not happening any time soon, if ever), or my leg were to get significantly worse from a pain and swelling point of view (hopefully not happening ever).

I spoke to him about the tinges and stiffness I feel sometimes in my thigh where the clot was. He said that is normal, that there is still part of the clot in there that has not yet dissolved, and that normal use of my leg will cause these feelings for some time to come. I don't want to be naive, but it did make sense to me.

He was very happy with my progress - my DVT leg is not larger at this point than my "good" leg. He says there is a good chance that I could eventually be asymptomatic. I hope so.

He also said that I can begin to exercise or do any other activity that I see fit as long as I don't overdo it and to stop if it gets painful or swollen. He, or course, told me that I need to avoid risky activities or anything where I could have a head injury. In other words, skiing is out, but tennis is fine. Bicycling is questionable because of the risk of falling, not the activity itself. In the past, I have only ridden on the road, no mountain biking, but I will have to give this one some thought.

Dero, it looks like I survived my two days with no warfarin, but let's see what my INR is on Friday.

Regards to all for now - Michael
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Gismo

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PostSubject: Re: Sad to have DVT - Happy to be here!   Wed Aug 06, 2008 11:43 am

Hi Michael

Nice to hear from you again Smile News from your doctor ties in with what mine told me when I had the DVT. They also only did another Doppler after 6 months to see if the clot had dissolved. He said that if it did not dissolve then I would have to be on Warfarin for another 6 months. Fortunately mine did and I stopped taking Warfarin (had a PE a few months later which put me back on Warfarin, this time for life).

Its great to hear that you can begin to exercise again! Its does wonders for a persons emotional well being too and of course good for the DVT leg.

Holding thumbs that your INR on Friday is in therapeutic range!

Regards,
Madeline
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PostSubject: Re: Sad to have DVT - Happy to be here!   Wed Aug 06, 2008 4:59 pm

Hi Michael,
Thanks for sharing your story. It was interesting to read your experience with thrombolysis. I'm glad to hear things have been improving for you.

I can completely relate to worrying about every little pain. I'm dealing with that right now concerning my left leg. I'm terrified there is another clot when I feel the tight dull pain.

I hope for more positive news in your future. GOod luck with your INR.
-Jen
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mbl33



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PostSubject: Re: Sad to have DVT - Happy to be here!   Wed Aug 06, 2008 10:02 pm

Madeline - I'm glad that there is some consistency between our doctors regarding the Dopplers. Based on all the stories I'm reading here, there is a need for the medical profession to be more consistent regarding DVT, especially among the non-specialists who seem to, in some cases, be giving dangerous advice. Thanks for the good wishes.

Jen - I wish I knew how long it would be before I stop worrying about all the little pains, but we need to be make certain that we don't ignore something that could be something. I just don't know where yet that we draw that line. Thanks for the good wishes.
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mbl33



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PostSubject: Re: Sad to have DVT - Happy to be here!   Tue Oct 28, 2008 12:28 am

Hi All.

I know it's been a while since I've posted but I've had some recent developments so I figured I would post.

Since my last post, my leg has been mostly fine (no pain or swelling, even with exertion) and my INR has stabilized nicely after a rough start.

I was feeling better than I had in a while from the end of July until about mid-September. In mid-September, my ear starting ringing and I experienced mild hearing loss in my right ear. ENT put me on mild dose of Prednisone but did not help. In the meantime, I started to not feel well in general. I had extreme fatigue, sore throat in the morning, lightheadedness at times, and my joints and muscles began to ache. I went to my doctor, they thought I had a virus but they did a Lyme disease test which came out negative. I also had an unexplained pain on the left side of my abdomen (no organs are on that side).

Symptoms seemed to just keep getting worse. The pain in my shoulders, wrists and knees became almost unbearable at times. The only thing I could take is Tylenol since I am on Warfarin. The pain on my side got bad enough and I got short of breath from it. Went to emergency room where they did CT scans of my chest and abdomen, but essentially found nothing.

In the meantime, my ENT doctor ordered an MRI of my head but that came out negative too (I thought it meant I had not brain, but fortunately it meant I had no tumors, etc.). He referred me to an otologist (ear only specialist). In the meantime, I dumped my primary doctors who I felt were clueless, and my friend, a pulmonologist agreed to do some more tests and help me manage and coordinate all the specialists I was seeing.

After doing some more tests, we started to expect that my problems may be autoimmune, or rheumatological in nature. This would even be consistent with the reason I had my DVT, which is Lupus Anticoagulant Disorder, an autoimmune disorder. There is also some history of autoimmune issues in my family.

I went to see a Rheumatologist on Friday and I am awaiting the results of some more blood tests he took. But upon examination, he did say that he believes my problems are autoimmune in nature. My Otologist also believes that the ear ringing and hearing loss are also autoimmune in nature. I am about to go on a heavier and longer dose of Prednisone in the hopes that it may "fix" my hearing and relieve my other symptoms.

It's funny that all these things that were seemingly unrelated (and making me feel like a very unlucky guy) are probably all due to some underlying disorder. My leg still seems to be fine, thank God, but I am hoping that my other symptoms go away and never come back (or at least come back infrequently).

That's all for now. I hope everyone here is feeling great or on the path to it!

Peace,

Michael
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PostSubject: Re: Sad to have DVT - Happy to be here!   Sat Nov 01, 2008 2:24 pm

DVT was not enough, sorry to hear this Michael. But at least you now know why you were feeling like you were. Just shows you that sometime, an apple is not an apple (know what I mean?)
Take care and keep us informed...
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